I just turned 38 and am caucasion. I have stage 2 grade 3 triple negative ductal breast cancer. I had a lumpectomy and am undergoing chemotherapy. I've had four treatments of Epirubicen and Cytoxin and 4 of the 12 treatments of Abraxane I am supposed to take. This will be followed with 2 months of radiation. My mom also had breast cancer as did a couple great aunts and cousins. My mother survived. What are my chances of survival if I complete this course of treatment? If I stop chemo due to excruciating pain that is unresolved? What should I expect, or be on the lookout for, during the next few years? I have children and a husband that need me and I remain hopeful but want to know what to really expect.
Tough question to answer, Traci. Your doctor can give you all the statistics - but they're averages, and at the end of the day each woman is her individual statistic. Here's a post on statistics, for more good information about that.
In general, triple negative breast cancer is harder to treat, since there's no long-term hormone therapy that works. Women with TNBC are more likely to suffer a recurrence the first 3 years after treatment - if memory recalls, about 30% will have a recurrence, compared to 15% with other types of breast cancer. Past 5 years, though, the survival rate is the same for TNBC as it is for other breast cancers. Please read our triple negative FAQS for more information about that.
I'm sorry you're going through this. Obviously, completing chemo would afford you more protection than stopping it; but how much more, I couldn't say. Again, a question for your oncologist. And perhaps you need a second opinion about the pain - have they tried multiple ways to treat it? Acupuncture? A pain clinic?
Good luck to you, and stay in touch, OK? We're here for you. PJH
Trac, I'm sorry you're having to go through this. We wish you all the best as you go through treatment, and get on with your life afterwards. Only your oncologist will be able to tell you your risk of recurrence, based on the treatments you're receiving; there are way too many variables for anyone not extremely familiar with your case to gauge this. In additon, your oncologist will be the one to tell you how much your risk increases if you don't complete chemo.
Very generally speaking, your risk of recurrence the first 5 years will be greater than it will after that; so make 5 years your initial goal. Our triple negative FAQS will give you more information on your diagnosis in general.
I'd highly recommend that, if you're not being treated at a Comprehensive Cancer Center, that you at least get a second opinion on your situation at one. These are cancer centers designated by the government as being the top facilities in the country; and being treated at one raises your chance of survival considerably. Check out this list of comprehensive centers, to see the closest one to where you live.
Again, best of luck to you - I hope things go well. PJH
This may help you, it was presented at the San Antonio Breast Cancer Symposium in Dec 2009.
I am a 7 year survivor with your same diagnosis except I had 2 pos nodes. You are on the same 2 chemos I took. I also had lumpectomy and brachyradiation before my chemo. Eat well and believe it is gone!
you can beat this!!!!
Sister, what will I actually tell you ? My mom,a year back, died from trippple negative breast cancer.We tried our level best but nothing work ! She was just 38.Alas ! Alas ! Alas ! We couldn't fight against cancer ! She died on dec3 2012.I will pray to the almigthy for your survival.And please never give up.Don't be frustrated after coming to know my hoplelss incident. May be we can know each other well.
Best of Luck
Thanks for adding your support here, Tuhin - it means a lot. PJH
I am an 11 year survivor of Stage 2, Grade 3, Triple Negative Breast Cancer. I was age 33 when diagnosed and had two children under the age of three. Underwent a mastectomy, chemo, radiation and reconstruction. Sending positive thoughts to whoever is going through everything now. Just wanted to share I am a survivor of this. Hang in there.
Joy and Melinda, thank you for sharing your stories of long-term survival with triple negative breast cancer. I know that your experience will encourage those who are still in the early days of dealing with this diagnosis and those who are struggling with the lack of follow-up medicines that the estrogen-receptor positive people have.
You're welcome (:
We're all in this together. Just hoping others can be on the other side of cancer too.
Melinda, 11 years....CONGRATULATIONS! I was diagnosed with Stage 1 TNBC at the end of August 2010 and will just now begin my chemo treatments (March 7th). I had a right breast, nipple sparing mastectomy with a tram abdominal muscle flap reconstruction at the end of November. Still recovering from the surgery. One of my biggest fears was (is) reoccurence. I had breast cancer (not TNBC) back in 2002, and after having a lumpectomy, 4 treatments of chemo and 30 treatments of radiation, the cancer is back! I was glad to learn that you are an 11 year survivor. The chemo drugs being used this time are Paclitaxel and Gemcitabine. Haven't heard of anyone else receiving these drugs. Have you?
Diane, paclitaxel (Taxol) is a common breast cancer chemo drug, and Gemcitabine is increasingly used for women with your diagnosis. I hope they work well for you, and that soon you'll be on the road to good health again. Please come back here whenever you need to ask questions, share your thoughts, or need a place to vent; we're here for you, OK? Take care- PJH
Melinda, it gives me a lot of hope to read your post. I was diagnosed with triple negative breast cancer on April 1, 2010 (I call it my cruel April Fool's joke). Underwent bilateral mastectomy on April 19th, had a 4 centimeter tumor but had clear margins and negative nodes. I like you was Stage 2 Grade 3. Took six rounds of chemo - taxotere and cytoxin with no radiation. So far so good and am praying that I stay cancer free. I hear a lot of doom and gloom stories where triple negative is concerned so it is good to read an 11 year survival story. I am scheduled for reconstruction (tram flap) on April 11th so I am going forward and expecting the best. Congrats to you and may you celebrate many more years cancer free and enjoying your family. Regina
Thanks for connecting here, Regina. Go forward with hope and faith in the future - it feels so much better than anxiety and despair, doesn't it? I had a TRAM flap almost 10 years ago, and I've been totally happy with it ever since - so glad I did it. The recovery may take awhile, so expect to need some help lifting, etc.; but in the end, SO worth it... Take care- PJH
Take care, Regina (: I know what you mean; I too, heard a lot of doom and gloom stories and everything I read was very off putting. So I decided to stop reading the literature and I started to really live my life (make my days count). I also strive to surround myself with positive people and things. I learned to say the word, "No." No one knows what the future holds for any of us. I decided while I'm alive, I'm really going to live. Thank you for your well wishes. I too wish you the best now and always.
Thanks for your positive posts here, Melinda - attitude is so important when we're dealing with cancer, and it sounds like you're in a good place. Best of luck to you - PJH
thank-you, your the first survivor i have actually read or even heard about, i was beginning to believe my chances were none. i was dx. with tnbc last sept 2010. stage 2 grade three, went thru chem, now starting radiation 7-8 weeks five days a week. i had my surgery mastectomy left breast only, 5.2 cm tumor removed with clear margins, except one close margin they were not able to clear, because it was too close to the left upper chest wall. 4 nodes were checked and all was negative. next is reconstruction i hope with a reduction for my rt. breast. i don't know for sure if they will do this. iam 57 y.o. forgot to say that. my brain is fogging still from chemo, but they say this will improve with time. it is just not as fast as i would like. sarah.
Hi Sarah - TNBC is getting a LOT of attention these days, and hopefully that'll translate into some new treatments soon; there are some promising developments in the pipeline, though not yet ready for widespread use. In the meantime - "no chance" shouldn't even be in your vocabulary! With stage 2 and no nodes affected, the odds are be in your favor. So think positively; you'll get through radiation and reconstruction, and then be back on the path to good health. Even your chemobrain should fade with time. As you say, healing never happens as quickly as we'd like it to; but time DOES heal, in the end - count on it. Be well- PJH
Sarah, there are plenty of triple negative survivors out there. You may not be running into many in your community because there are fewer TNBC patients to begin with. Most people are ER + and then there are people like me who are ER neg and Her2neu pos. When I was diagnosed, my tumor status was considered the most deadly because Her2neu pos tumors are generally more aggressive, and Herceptin had not yet been approved. That was 13 years ago, and I'm still here. One big problem for TNBC patients is there are not follow-up drugs like Tamoxifen or Herceptin. But your type of tumor usually responds well to chemo, so be hopeful that you will stay well.
You should be able to have breast reduction because part of the reconstruction process is doing whatever needs to be done to achieve symmetry. It's part of the law that requires insurance companies to do reconstruction.
My name is Cathy and my cousin (we are from South Florida) was just diagnosed with 3N Brac1 positive breast cancer. She recently went through a double mastectomy in which 28 lymph nodes were removed and 11 were positive and is starting chemo this week. I am contacting you on her behalf because she is not ready to research or look at blogs from individuals who have been through or going through what she is presently living. She did ask me if I contacted you to ask about your diagnosis, where your lymphnodes removed? Did they test positive? What was the course of treatment? I wanted to know from a family perspective how can we support her during this difficult time other then love her incredibly and annoy her by trying to do to much.
Thank you from a concerned cousin
Cathy, as a family member, your main job is to listen to your cousin and take your cues from her. Some days she may want to talk about the cancer, and some days she will probably change the subject and just want to talk about something light. Of course, if you live nearby and can offer rides to the doctor or the occasional meal, or babysitting, those kinds of practical assistance will probably be welcome.
Most people with breast cancer will have at least some lymph nodes sampled. If your cousin's surgeon removed 28 nodes, he or she probably had some clues that that many might be cancerous. Most people in your cousin's situation will have surgery, chemo, and radiation, but there may be variations depending on the details. As I mentioned earlier in this thread, I had 16 positive lymph nodes, and I'm doing fine now; so your cousin should be hopeful despite her difficult situation.
Thank you for your response. Last night I offered most of what you recommended such as taking her to the doctors, helping her with whatever she needed. It all is happening very fast but I do believe in the power of positive energy and prayer.
Prayer and positive energy will help you both through this difficult time. Bless you for being there for your cousin. She will appreciate your offers of help even if she decides not to take you up on them. Cancer is a huge blow to a person's sense of control over her life. Some people (including me) respond by wanting to stay as independent as possible. So offer, but don't be offended if she wants to do as much as possible by herself.
I am a 7 year cancer survivor. I was also 33 years old with Stage 1, Grade 3, Triple Negative Breast Cancer. I chose a lumpectomy with chemo (AC) and 6 1/2 weeks of radiation. I haven't really changed my lifestyle like so many of the stories I have been reading. The experience changed my life in a very good way. It sure did suck, especially losing my hair, but I wouldn't trade in the experience for anything. I am a stronger person, because of it. Thanks to all for sharing their stories...Linda
I agree, just pray because all treatments are different. I had the same diagnosis on Jan. 2009, had a lumpectomy, 4 chemo treatments and 12 weeks of radiation and my lymph nodes were all clean. I know some people who didnt have radiation and had 20 lymph nodes that were cancerous, well mines were clean and I still had to have radiation. I am 37, 3 kids and husband moved out at the time I was going through chemo. Well we are all survivors and I know I fought a strong battle with so much bone pain and I WON. Just keep the faith and encourage someone because your life is your testimony..
Vikki, thanks for connecting here - it's such an inspiration for other women going through treatment to hear "success stories" from women who went through very challenging treatments, both physically, and emotionally. Your encouragement here is "paying it forward" - much appreciated! PJH
Hi Mindy and Traci,
As far as the chemotherapy regimen, the adriamycin and epirubicin, abraxane and taxol or taxorene belong to the same family. Physicians seem to select agents based on their past experience. A new clinical trial for triple negative stage 2 or 3 is underway looking at these same agents (adriamycin-cytoxan-taxol) plus or minus carboplatin, plus or minus avastin. The trial is chemotherapy prior to surgery and the treatment is dose dense (adriamycin-cytoxan every 14 days) taxol weekly.
I was disgnosed on April 7 and opted for adriamycin-cytoxan-taxol-and high dose avastin. The trial that I mentioned above was not available at the hospital that I worked until I was in my second to last treatment.
I finished chemo yesterday and have started dwelling on the should haves..
Throughout my chemotherapy treatments, I continued to work as director of the pahrmacy department and put my illness in the back of my mind. That worked fine until yesterday's treatment, and the celebration by the outpatient oncology center and the pharmacy department of my last treatment.
Of course, I tried to convince the oncology that the avastin should be continued for several months, but she did not take the bait. She , like the outpatient oncology staff said that it was time to let God work his magic.
Time for me to get some of this steriod weight off and the chemo brain fuss gone.
Susan, congrats on being done! Word of caution: healing takes time. We all want to "get back to normal" ASAP; doesn't work that way. Whatever your side effects, however you feel... validate (it's OK to feel like this); then put one foot in front of the other, knowing that each moment that passes, you're that much closer to feeling well again. Also - I worked hard all through chemo, finished, thought, "Yeah!" then started working even harder. Ended up in the hospital with pneumonia 2 weeks later. So take it easy; be good to yourself, OK? Now's not the time to be Superwoman! Take care- and thanks for connecting here. PJH
I just want to comment on your response to Traci about receiving the radiation treatment after chemo. I did not have any lymph nodes affected. I had stage 1 grade 3 with the same coctail. I spent most of 2010 going through the treatment for this. I'm not sure why your doctor chose to not give you radiation but I hope this information helps. Take care of yourself. This really helps you to make a lot of life changes.
Hi Vicki, and Mindi, I think the radiation depends on clear margins or not. I had one surgery in April 2010, they weren't able to get it all went through 8 chemo treatments. Every three weeks. I had a steroid bag (decadron), the chemo was taxoteer, and cytoxin. Then I took a shot the next day to rebuild my red blood cells. Not sure the name of it. Took my last treatment on Sept. 30, had CT/PET scans, then met with my surgeon on Nov. 3rd. The cancer had shrunk from 4cm to 2cm. I talked to him about maybe taking off both breast and he said he would need to do a MRI it took the doc. til Nov. 30th to get my insurance company to okay it, but the MRI showed to mass gone with just some specks in the surrounding tissue. So my 2nd surgery will be Dec. 30th, and they will do a partial masectomy and biopsy my lymph nodes to see if they need to remove them. After the surgery I will have to do radiation also. I think that this is a precaution. Hope this helps With Traci too. My name is Kim and I'm in Alabama.
I was diagnosed in may of 2009, at age 41, with stage 1 grade 3 TNBC (no lymph nodes involved), BRCA negative. The stage of the cancer was determined by the size of the tumor. The reason she may have to have the radiation, from my understanding, is because she had a lumpectomy not a mastectomy. I have worked in healthcare for over 20 years (area of surgery) and have noticed that nearly every lumpectomy is automatically followed-up (required to have) with radiation. That was the recommendation from the onoclogist that I see. She told me that if I had a lumpectomy then I would need radiation but if I had the mastectomy I would only need the chemo. I opted for a double mastectomy and then alternative medicine, change diet and lifestyle. I figured that my immune system could recover from the surgery but could be permenently damaged from the chemo and/or radiation.
hi mindy. i see your answer to tracy and i also had the exact same diagnosis as you and tracy. invasive ductal stage 2 grade 3 triple negative. i had same drugs as you but had 7 weeks of radiation also at ireland cancer centers of clevleand, chagrin highlands and i think the answer to your questions as to why you didnt need rads and tracy and i did was that we both had lumpectomies and you had macectomy. just guessing though. i was diagnosed in apr. 2009 and finished all treatments dec. 31, 2009. so far so good. hang in there. you will be OK. i will be thinking and praying for you. Denise
Dear "Against," I think you are right about lumpectomy and the size of the tumor. However, not all mastectomies just get chemo. Again, it is the size of the tumor, whether it is hormone positive, and (in my case) the aggressiveness of the tumor. I was told that because my tumor was over 3 cm at the time I commenced treatment, and I had lymph node involvemkent, I was a cnadidate for radiation to "get anything that was left behind." I really did not want radiation, for a myriad of reasons, but after seeing two "second opinions" I decided that in the long run, should the cancer come back, I could not accept the fact that I had turned down treatment that could have been the difference. The immune system really does take a hit, but mostly it is your major organs, especially the liver. I too opted for alternative medicine and diet changes, and believe that the Loomis enzymes that I was taking during chemo helped to support my organs, along with eating "well" - literally I ate myself well.
Hello - I was diagnosed in Sept. 2009 with triple negative locally advanced inter ductal carcinoma (originally though to be inflammatory breast cancer stage 3.. I had let it go too long because of my fright of doctors. I was treated at Somerset Medical Center in Somerville, NJ with Tax and cytoxin at the same time, then separate sessions of the red devil (adryomycin).. finished April 2010 and then started 5 weeks of radiation in June 2010 and finished July 23, 2010. In September 2010, I had a modified radical mastectomy. In January 2011, I had breast reconstruction. I had NO involvement with lymph nodes. None were taken. None of them were swollen. My doctors tell me to just live my life.. so that's what I am doing.. They tell me it won't come back. I was in a domestic abuse situation and they think the stress caused it. I hope you are okay as I write this.... write me at: firstname.lastname@example.org
Dear Mermaid, thank you so much for writing in with your experience. I am so glad that are doing well now. Even though your doctors expect that you will continue to stay healthy, I hope that you have overcome your fear of doctors and are now getting regular check-ups. I wish you many more years of health and happiness.
I have endured 6 years of invasive ductal carcinoma level 4 that metatacized to my lymph nodes. I did massive chemo just trying to hit it with something but unknowlingy was throwing water balloons at a thirsty tumor. The treatment was horrendous with absolutely no results; the tumor did not shrink one centimeter, but, in fact, grew at its regular rate, totally unempeded by the $3,500.00 a week of chemo expended upon it. Then I had a complete masectomy. They grew back the next week at the same site, just a little higher some, and lower, others.
Now, I say, forget the chemo and radiation and just enjoy the life and good times yoou have left. I was told I had 20 months (by 8 different oncologists) to live and that was 60 months ago. The chemo did nothing but make me sicker and my tumor seemed to thrive on it. doctors will not say quit, not at $14,000 a month for three hours of treatment.
So sorry your family acted like that. Mine did too. I have not seen them for 6 years. Said they couldn't abide living around a sick person. No, I did not raise them that way. Lots of people will want to support you. JUST LET THEM.
Kim, it has been a year since I have posted on here and I hope everyone is doing well. That bone density shot that helps build the red blood cells is something else and I had more problems with that then I did the actual chemo.
I'm a SURVIOR and I AM still going strong!
Vikki in Texas
Thanks - and back at you - PJH
Hi, I just wanted to thank you for your encouraging words. . I had tnbc back in Dec. of 2009. Did it all. Mastectomy, chemo and Rad. I praise God for the xtended days He has allowed me to live. Each day is a gift from the Lord. Keep fight the good fight. Big C (Christ) will beat little c (cancer). Blessings
to all my sisters with/without c.
Good for you, Lupe! Coming up on your 3-year anniversary this winter. Hope everything continues to go well for you; thanks for posting your encouraging words here. PJH
I read your post and I have a similiar diagnosis in March of this year. Just curious to know how your doing and any new updates.
Hi, Kim - I'm sorry you're having to go through this. Thankfully, a lot of research is taking place in this particular area, and progress is being made on treatment. I'm not sure whose post you were responding to, but if you don't get an answer, try clicking on the person's name (in blue) to send a private message; sometimes, on these older posts, the person isn't monitoring anymore. Take care - PJH
Hey PJH, thank you for replying. I have been searching the web to find out more about the survival rates with those diagnosed with TNBC. I just finished all my chemo and meet with radiation oncologist next week to see if I need radiation. The fear of the unknown and what's next has been my biggest obstacle. I appreciate you replying.
Kim, have you read our TNBC FAQS? If not, I htink you'll find a lot of good information there.
It's virtually impossible to give specific survival statistics that apply to individuals - since each person's case is different, and stats are just that - data culled from a large group, and averaged over time. I do know that chemo is more effective for those with a TNBC diagnosis than it is for other survivors; and that with TNBC, the first five years are the most worrisome, with risk of recurrence dropping after that. Your doctor can probably give you more specific information, based on your own diagnosis and treatment.
Best of luck to you - PJH
PJ, Thank you for attaching that FAQ's. That was a good read. I appreciate your input. It was nice to find this website to read about other's journeys. I really need to read some of these stories. Thank you again.
Stay positive, Kim - worry will sometimes overtake you, but it doesn't accomplish a single blessed thing, other than to make you feel bad. Live in the moment, enjoy each day, and keep your eyes on the horizon - you'll get there! :) PJH
I am presuming that your question is for me, since it followed my entry. My journey has not been typical. I had eight surgeries in 18 months, so that has taken its own toll. I am still cancer free, and will have a CT scan next month (November 2012) of the chest, abdomen and pelvis to ensure that nothing has shown up in another place. My oncologist ordered that at the last checkup because I have not been feeling "right" for several months. There has been no change to the neuropathy, and as long as I keep up with my methylation supplements my brain fog is really under control. However, I do have some other symptoms - notably fatigue - that just won't go away. My best suggestion is to be mindful, stay active in whatever activities you like, and be sure to get the support you need, as well as to give it to others. The decision about radiation is a personal one, and I'm not sure that I would make that same decision today. But there are other decisions I might change as well. Right now I'm looking forward to a vacation on the Gulf with my husband of 28 years, walking in the white sands and watching the dolphins play. What you resist, persists, so let go. What you fear you give unwarranted energy to, so focus on what makes you happy and how you can help others feel happy too. Best of luck in your journey!
Sharon, thank you so vey much for coming back here to respond to Kim. I'm sorry you've had such a tough time of it - and hope hope hope those scans show nothing at all... I can say, 11 years post chemo, it took a LONG time to get over it; in fact, I still deal with some chemo-related issues. But overall, I feel a lot better than I did back then. So there's hope for a more comfortable future!
Your Gulf vacaiton sounds absolutely wonderful. "Mindful" is the way to go, for sure. And I love your good advice at the end. Thanks, again, for connecting here. And best of luck to you - PJH
Maureen, it must have been a tough decision to go against the data, which shows that chemo helps prevent recurrence and is especially important with a diagnosis of TNBC. Best of luck to you, going forward - PJH
You're absolutely right, Maureen; the odds are still in your favor, and it's your body, your decision. I wish you all the best. PJH
Hi my name is Kim I also have TNBC and was going through chemo. I am having my 2nd surgery on Dec 30, 2010 The chemo that I took is Cytoxin and Taxateer. It is painful however it is a good pain cause it means the cancer is shrinking. Mine has went from 4cm to no mass. All I have at the moment is bits and pieces in the tissue. I will be 40 in January and I am also white. Mine was also stage 2 with grade 3
I too was diagnosed with stage 2 triple negative ductal breast cancer on 4/17/09. However my surgeon and oncologist both agreed that best form of treatment for me was chemotherapy first (this way they could stink the tumor) before surgery.
I had 8 weeks of Adrimycin/Cytoxan, followed by 12 weeks of Taxol. All imaging reports showed the tumor was gone. However during surgery (Lumpectomy) the tumor was still there but reduced from a 2.5 to 1.3. Followed by 3 more months of chemotherapy Gemzar/Cardoplatin, 6 1/2 weeks of radiation. I just finished my last radiation treatment 4 weeks ago and I am actually starting to feel like my old self again.
Best of luck to you and your recovery. remember to truly believe in your healing-doing so can make all the difference.
Karen, thanks for sharing your story here - it's good to hear from women who've completed their treatment and are, indeed, starting to feel like their old selves again! PJH
I took both of my chemos at the same time everytime. My cancer doc said he was going to hit me hard. Every three weeks for eight treatments taking 3 to 4 hours. I'm just now starting to kinda get my energy back. I was told that radiations would drain me too, but I don't know. Sorry for all the different post but I still have a little of that fuzzy brain going on and I leave things out then have to go back and repost when I remember.
Karen, Did you have any peripheral neuropathy in conjunction with your Taxol or further chemo treatments? If so, how did you treat it, and is it receding or healing? Thank you for responding.
Sharon, you might find our neuropathy FAQS useful... Best of luck with the rest of your treatment. PJH
Sharon, I developed peripheral neuropathy from Taxol. Mine never went away, but for most people it does. Talk to the doctor about it right away. The sooner you start treatment the better. Sometimes vitamins help, and there are quite a few drugs that may give you some relief. Most of them are in the anti-seizure or antidepressant families. I never saw any help from regular pain killers. I didn't get started on treatment quickly but eventually, I found a neurologist who was very interested in helping me figure out the best combination of drugs to control the pain.
Phyllis, thank you for your response. My treatment was stopped shy of the total number of treatments, at about 10 I think, because the neuropathy was getting so bad. Unfortunately, in my case the neuropathy didn't get painful until a few months ago, so I didn't seek help right away, although I always reported it at routine checkups. I had the numbness (actually, shadow feeling that moved around my feet and ankle) and the dropsy, but the fiery burning started nine or ten months after I completed chemo. In April my oncologist scripted for neurontin, but I get side effects, also complicated by having to withdraw from an antidepressant, so I don't take it. I am concerned about the effects of all these drugs on my system and internal organs, but the burning sometimes is overpowering. I was hoping to find something besides neurontin as a course of treatment when I entered the comment to Karen. Thanks again. - Sharon
Sharon, I'm not a doctor, so I couldn't comment on dosages, but some people have found help for neuropathy with vitamins, especially those in the Vitamin B group. A drug similar to Neurontin is Lyrica, which some people tolerate better than Neurontin. Also you might do OK on Neurontin once you have the anti-depressant out of your system. I now take a low dose of the generic version of Neurontin at night because that's when the neuropathy pain bothers me the most. I hope you find a workable solution for your pain.
Sharon, Sorry my response is so slow. But I don't check this email that often. Yes I did a light case of neuropathy with taxol. It stated with my toes/toe nails and than moved to my feet and legs. The way I addressed the numbness, tingling and cramping of my feet was with exercise, physical therapy and weekly massages. These activities helped with lack of oxygen and blood to the nerve cell. If you are still experiencing neuropathy there are doctors out there that can help.
Hi Sharon, I have just found this site about TNBC. I really haven't wanted to know too much until now. Sometimes ignorance is bliss or at least helped me to stay positive . I was diagnosed with stage 3 TNBC (6cmX6cm tumor) in May '10 and finished all my treatment in January '11. I did chemo first , dose dense 4 of AC and then 4 Taxol. I was only able to do 1 Taxol due to a severe reaction to the drug...the worst pain I've ever experienced in my feet, legs and joints. I also had numbness in my fingers and part of my hands. Treatment was stopped immediately and surgery was scheduled as I had a good response to chemo and the tumor had shrunk. I did a detox to rid my body of the chemicals and surgery was a month later, also did 3000 mg of Lysine per day to help with the neuropathy. I had a lumpectomy a month later and there was no tumor left and the two lymph nodes in question were clear. I opted to go to California for an alternative treatment to help rebuild my immune system. I also did hyperthermia with low dose radiation. The neuropathy is almost non existant and my energy is very close to being normal again, that just means I'm not able to stay up until 2 or 3 am working on my art. I go to bed at a more normal hour! I have been on mass doses of supplements, Vit C infusions, diet change and have done oxygen treatments since last October. After saying all that, I just want to encourage you and let you know it can get better because of alternative or integrative medicine. During my radiation i continued to get stronger inspite of the treatment. I attribute that to diet change and supplements my doctor put me on. I'm sorry to say that the doctors of conventional treatment won't give you that information and most will discourage it due to their lack of knowledge or financial gain. I saw Dr. Jeremy Kaslow in Santa Ana , CA. He is an M.D. who also studied Chinese Medicine. He treats cancer patients as well as people with many other chronic illnesses. He looks for the cause and doesnt just treat the symptoms. I hope this helps and if possible find out if there is a physician in your area that believes in integrative therapy or one that practices Chinese medicine. I believe it has made all the difference in my recovery along with a lot of prayer. Be encouraged....Debbie
Debbie, I'm so glad that combining conventional medical treatments with complementary treatments has helped you so much. More and more hospitals and oncologists are offering more holistic treatments. Some doctors enthusiastically encourage their patients to consider supplementing their chemo or radiation with other treatments. Others don't know much about them as you mention. Some doctors don't support their use unless the treatment has the same kind of rigorous testing that chemo and radiation have had. Medical training is based on the idea that doctors don't know if something works unless there are studies that prove it. Unfortunately, that attitude can miss some possibly beneficial treatments that haven't had the backing of a pharmaceutical company to pay for the research. In other cases, it can help patients avoid paying thousands of doctors to quacks. I do think it is unfair to accuse doctors of withholding information about complementary treatments because of financial considerations. The people who do complementary/alternative medicine get paid too, and the average oncologist has all too many patients to worry that he might lose some money if his patient got better by adding vitamin supplements or oxygen treatments. Thanks for sharing your experiences. Stay well!
Thank you, I did find the FAQs on neuropathy interesting. I appreciate your response.
I'm glad you're doing well. I, too, was diagnosed with TNBC, have changed my diet and take lots of supplements. I do chiropractic treatments, get massages and go for acupuntcure. Can you tell me, besides your infusions of Vitamin C, what other supplements you take? I'm happy to hear you're doing well. I wish people would realize how important alternative care is. God Bless....Pam
Hey, Debbie, here it is a year later and I've just seen your entry. Those CA doctors are really up on it, huh? So far, here in Indy, there really aren't any naturopaths, or MD's trained in alternative medicine and healing with supplementation as well as pharmaceuticals. I keep hoping, and doing my own research and keeping my PCP informed of the research. Thanks for your input, and keep up the good work. Blessings! ~Sharon
I have 2 breast cancers that have both metastisized to my lymph nodes. Both triple negative, invasive agressive ductal and invasive aggresive lobular. I did develope neuropathy about 6-7w into Taxol treatments. My ongologist lowered the dose by 20 mg and the very next day it was gone! i couldnt believe it! I am now on my 11w of Taxol. I am in the study one of the people had posted about.12w of Taxol,Avastin every 2w,Carboplatin every 3w. than i will start my 2m of AC and Avastin every 2w. The ongologist are hoping this Avasin is the miracle drug so it doesnt come back!!Hope so! I also have gained a ton of weight from the steriods, cant wait to get it off!!!!!
Heather, I have a friend with TNBC who was in the clinical trial for the protocol you're taking - 5 year later, she's fine! Hopefully this will help give you confidence. I'm so glad you and your oncologist found a solution for your neuropathy - that's hard to treat, so that was a stroke of luck. Sounds like you have some things to be thankful for... Best of luck, and I hope you're able to get off the steroids soon. PJH
I too have TNBC Stage 3 with 6 positive nodes. I have led an extremely healthy and active life until two years ago when I had 4 extensive spine surgeries and my mom passed away within the same period. The recovery was very difficult and I went through a lot of depression and stress which I believe may have caused this, I also gained 20 lbs. due to inactivity. I had a complete radical masectomy with 15 auxillary nodes removed/6 were positive. I am recovering from the surgery and have done an extreme cleansing and considering alternative therapy as opposed to the chemo and radiation. I have a tremendous amount of neuropathy already due to the removal of so many lymph nodes and lymphedema in the same arm. Doing everything possible to keep the swelling at bay however the oncologist states that radiation will worsen it by another 50%. I realize that most women will opt for chemo and radiation but I have hard a very difficult time convincing myself that this will be the right choice for me. I had my mom, dad, and aunt all die within months of receiving chemotherapy (for lung cancer) and everything inside me screams to go the other way for that reason. I feel so good just changing my diet already. I have a very close friend who had prostate cancer that had metastasized outside the prostate and was given less than 2 years to live, he attended the Gerson Institute and now still lives a super healthy life 12 years later. I really want to build my immune system especially since I have metal rods and cages from cervical 3 through my tail bone, and don't know what the result will be to my spine with these drugs. I have worked so hard to stay healthy and very active living my life, It scares me very much to do the chemo. I have reached out to friends who all know me and agree that I am making the right decision. I applaud all of you ladies who have survived the treatments, truly I do.
Charlotte, you've certainly been through some tough times, health-wise; I'm sorry you're having to face this. Thanks for sharing your story here. I'd like to gently suggest that you keep considering chemo; with TNBC, it's virtually your only medically proven defense against a recurrence, since you won't be able to access hormone therapy. In my opinion, slternative treatments are great as a complement to traditional treatments; I've used them myself. But personally, I'd never rely on treatments not yet backed by years of data and broad success to save my life... I wish you well, and hope you can return to relatively good health, given your back issues. Take care - PJH
Although I didn't have triple negative cancer, I was in a similar position to you. I had Stage IIIB inflammatory breast cancer ER/PR neg and Her2neu pos at a time when Herceptin was not yet available. I had 16/24 positive lymph nodes. The only conventional medical treatments available to me in 1998 were chemo, surgery, and radiation. I do have some side effects from the chemo and radiation. I have neuropathy and lymphedema. But I am alive to complain about them, and they don't keep me from leading an active life. The swelling you are seeing now is probably still surgery-related. A lymphedema therapist can probably get that under control. Please ask for a referral to a trained lymphedema therapist right away whether you seek alternative or conventional treatments for your cancer.
As you make decisions about what treatments to try, ask all the doctors questions about the success rate for their treatment. You want to see peer-reviewed clinical trials published in reputable medical journals. Your oncologist is not going to promise great results. You have a Stage III triple negative cancer. I don't know what the current mortality rate for that is, but it is not good. However, it will be vastly better than cancer untreated with chemo and radiation. Most of the time when I read the promises of alternative therapies, they offer glowing anecdoctal reports of individuals, but it is hard to find any large clinical trial data for these treatments. Unfortunately, in my 15 years of participating in on-line support groups, I have seen too many people try alternative therapies first and then when they didn't work, turn to conventional medicine--too late in many cases to turn the disease around.
I am so sorry that you have family members who died even though they received chemo. Keep in mind that it was the cancer that killed them, not the chemo. Cancer is a deadly adversary. I applaud you for using a healthy life style to help your body fight it. Please continue to research all your options and get data for how successful each is for people your age with your type of cancer. There are quite a few complementary therapies that you could use with chemo and radiation. Everyone responds differently to each type of treatment. You might be one of those who breezes through it with few side effects. You could try it and stop at any time if you think the side effects are too bad. I wish you the best as you seek the right treatment for you.
I had TNBC( stage 2 ) high grade, 8 years ago when I was 39. I am sorry you have to go through these treatments but they are our CURE!! Stay strong!
I am a breast cancer TN survivior. I will be cancer free three years in July. That is my goal to get to the three year mark. My question...my comment, is WHERE IS OUR AFTER CARE DRUG FOR PREVENTION.....You know we each worry about it coming back, I want to be an encourager. We all need to keep demanding our doctors offer us something beside follow up blood test. What hope are we getting for prevention. We all have to keep worrying and waiting for and praying...................................... I want us all to live. Ask for a better prevention plan. Please..
Dear Traci, I am 48 years old and also caucasian. I also had stage 2 TNBC.No positive nodes.I also had a lumpectomy and underwent 4 treatments of adriamycin/cytoxin + 4 of taxol. I did have a fuzzy brain while going thru all this.Felt ill for 3 or 4 days after treatments but otherwise worked full time.I also had 37 radiation treatments. I go to the dr on Tues to get a 6 month checkup and bloodwork to see how everything is going. I don't think there really can be an accurate answer to your question. This type of BC seems to leave some women alone after 1 fight and other women have to keep fighting it regardless of stage or treatment. I plan to keep fighting if it does return and hoping for a cure to this horrific disease that continues to turn womens lives upside down every single day. I am praying for a cure not only for this type but all types of cancer.People who have never had cancer really have no clue what we go through on a daily basis even after treatments are over.I will be praying for you and all the others who have responded to your question. Linda
Hi, I was diagnosed with ER+/PR+ HER2 neg cancer Stage T1C N1mi intermediate grade on left breast. While I was going through mastectomy on left side I asked my surgeon to take out two masses in my right breast which were biopsy negative of cancer.
But it turned out that there were triple negative DCIS extensive and IDC 0.8mm intermediate to aggressive on two sites. I will be going through another mastectomy on right side with sentinel note biopsy. My oncologist is saying I do not need any chemo nor radiation if sentinel note is clear for right side (TNBC side) for left side (ER+/PR+ side) he wants me to do 4 cycle of Chemo.
From everyone else's experience here, it seems like I need more chemo + radiation but does anyone know?
Usually in a situation like yours where there is more than one type of cancer, the treatment is geared for the most aggressive and/or widespread tumor. Since one of your tumors was ER+, your doctor will consider one of the hormonal therapies as a possible follow-up treatment. Since your diagnosis is somewhat complicated, you might want to ask for a second opinion, especially if you feel your doctor is not being aggressive enough. I hope you get good news from the pathology report for the right mastectomy.
Hi - With DCIS in your second breast, your doctor's choice of treatment sounds very reasonable. DCIS means the cancer isn't aggressive and hasn't spread; a negative sentinel node would back that up. A mastectomy should totally take care of the cancer in that breast, with no need for radiation. And since you'll be getting chemo anyway, for the other breast, the chemo would hopefully seek out and destroy any stray cancer cells from either breast. As Phyllis says, though, there's no harm in getting a second opinion if you feel at all uncomfortable. Good luck - PJH
i found out i had cancer in october 2012 in my right breast. I had my breast remove but the doctor left half of my nipple in tact. i tested triple negative. i have not had any follow up treatment. no chemo. no rad. no meds. my doctor told me to come back in 3 months and when i went in he said to come back in 6 months but to have a mammmogram. i never wanted to do the chemo because i have Von Willebrand disease which causes me to have a longer bleeding clot time and the chemo makes you bleed. i don't know what to do now and i am wondering if anyone has ever not been treated and was cancer free 5 years later. God bless you all and may He give you the healing and peace that we all need.
Sure, Denine - You can survive cancer without treatment, although your chances are often greatly increased by having the proper treatment. Did your oncologist suggest chemo, and you refused it? For women with your diagnosis (triple negative), chemo is pretty much a given, since long-term horome therapy won't work to prevent recurrence. And did your doctor suggest the chemo would make you bleed? I hadn't heard of that being a side effect – although perhaps with your condition, it would be. I assume your doctor is keeping a very close eye on you; be sure to keep the appointments, and I wish you the very best of luck as you go through this anxious time. God bless you, too - PJH
Moinca, thanks for sharing your experience with treatment - it's always great to hear from someone who's been through it, is doing well, and can speak positively about her experience... PJH
Hi, Traci. By now, a year and a few months later, your original question has been overtaken by new experiences on your Breast Cancer Journey. I'd like to hear from you about that.
I was diagnosed via aroutine mammogram with "asymmetry" in October of 2009, which with all the follow-up diagnostics turned into Stage 2a, level 3, very aggressive and growing so rapidly that by my birthday in November it was now over 5cm. I was stunned, because I was just turning 65, and as you can see from the other posts, most of our BC sisters are much younger. I had the (mistaken) impression that I was beyond the risk. After the biopsy, which also showed an affected sentinel lymph node in that breast, I underwent the TAC chemo on an aggressive schedule to halt and hopefully reverse the growth of the tumor.
I was the opposite of most, the TAC portion of my chemo was not particularly hard except for the fatigue that set in a few days later, and of course the bone pain from the Neulasta that hit 7 days after the shot. However, by the next treatment I was feeling pretty okay again and thus able to withstand the treatment. My greatest issue at this time was showing up for the treatments, because I felt so depressed and discouraged in that environment.
Then I began the second phase of chemo, Taxol, on a weekly regimen. There was no recovery time between treatments, I developed peripheral neuropathy in my hands and feet, and I was still depressed about entering the treatment center. Every treatment I asked "when are we going to stop this madness?" because I was convinced that my tumor was gone (although I could never locate it to begin with). On occasion, I had a "high" temp and was put in the hospital for a day or two. Finally my treatment was ended 2 doses early because the neuropathy had reached critical stage.
I have read all the statistics, the studies, and all the information I could find to try to justify why I did not have to conform to the protocol. I had second opinions when it came to the radiation, which was scheduled after my bilateral mastectomy, because I was, after all, breastless at that time, and rad was the treatment of preference for lumpectomy (still having breast tissue) without node involvement. However, I caved and went through the almost 7 weeks of rad (described elsewhere in these posts) because in the end I knew that IF there happened to be a recurrence, I could not accept the risk knowing that I had refused a treatment that could possibly have neutralized the infinitesimal "seeds" of future cancers.
So, in the final analysis, what kind and what amount of treatment you acquiesce to having performed in your behalf is determined by your level of belief in your own ability to overcome, how long you are willing to wrestle with it on your own, and what level of help you believe you need to have. Most of us, especially those with children or other dependencies, determine that we need a level beyond ourself, if only (like me) to have touched every base. In other words, we need some kind of insurance, assurance or guarantee.
I fully believed that I could, with the aid of alternative medicine, enzymes, nutrition and meditation, overcome the beast in my breast. However, I was surrounded by people begging me to "be reasonable" and accept the best allopathic oncological medicine available and "live longer." Perhaps that is the source of the dread everytime I entered trhe cancer center, that I was not being true to my own self. However, I could not put them through the worry, nor accept the guilt if I was wrong, so I accepted the treatment that poisoned my body while it poisoned the cell that wouldn't die. After all, if I had been paying better attention to my health previously, I "should" not have been in the position of a cancer diagnosis -- right?
At my next 90-day checkup, I will have a whole body scan to see if any pesky little marauders have migrated and are now showing elsewhere. I think that the choice of follow-up protocol is up to the medical oncologist, because after a year of 90-day follow-ups after ending chemo with no real evidence of metastasis I asked "what are we looking for? do we just keep meeting like this until something happens?"
This breast cancer journey is unique to each of us, while also having some similarities from woman to woman. Not all the answers are logical, nor are they universal. I beleive that our answers are all within us, residing right next to the question. The issue is being able to "see" clearly and hear our own voice clearly with all the noise of other voices around us drowning out our voice, our feelings, our knowingness.
Please let me hear from you how you are doing, and the choices you have made along the way. Blessings, Sharon
Hi Sharon, I'm wondering how many Taxol treatments you had before the neuropathy started? I have had 3 treatments of the Taxol so far and have 9 more to go. I have been able to work during my prior phase of chemo and this one so far also, but I'm a legal assistant and I spend alot of the day typing and am concerned about being able to type if I get the neuropathy in my hands. Thanks, Theresa
As you know, we all respond to the treatments in our own way. I can only tell you how it is for me, and I want you to understand that how it is for me may not be how it is for you.
For me, the neuropathy in my hands is different than how it presents in my feet. During chemo, it presented in my hands as a numbness in my fingertips making it difficult to button shirts, put the backs on my pierced earrings, fasten my necklaces, anything that requires fingertip feelings. It also affected my ability to hold on to things, as I was always dropping stuff. Easier to hold on to big things, a cup or a plate, than multiple small things like light weight things and individual sheets of paper. However, for me, typing was not affected. And it is different on different days, some days are better than others, less dropping, almost "normal", and others are more burning, heat, unable to feel the tips of my fingers.
When it started is difficult to say. I was told that whatever symptom I had would be restored after chemo. Then, one treatment I had a different PA who told me that in the case of neuropathy there were exceptions, and beyond a certain point the neuropathy may not regenerate after treatment. Up to then, I had not made a big deal out of the neuropathy (or other symptoms I had) because of my belief in the restoration post treatment. The treatment for me was stopped two short of the protocol, because of the test my oncologist gave me, could I keep my balance standing on my feet with my arms to my sides. I could not, but that is about feet, not hands.
Any way, my last Taxol treatment was 13 months ago, the neuropathy has receded in my finger tips, not totally gone and some days are better than others, still have "dropsy" ( not to mention stumbling) but it is "within acceptable parameters". My feet however are not recovering at the same rate. SO FAR.
If I were to give any recommendation, it would be: do not borrow symptoms or results from another wayfarer. Everyone's journey is their own. Welcome your journey. Make time every day to send love to every cell in your body. This is very important! Do not buy into the idea that your body has "betrayed" you. It needs you now more than ever to show you care, send love, eat as well as you can given the exigencies of chemo, and give yourself the treat of movement in what ever way you can. Dance with music. And allow yourself to get out of your own way. Breathe.
I wish you well. Please let me know how it goes for you, and what I may do to help you.
Sharon is right about how everyone responds differently. Many people taking Taxol never have neuropathy. For others it is short-lived, and for some it lasts a long time. My neuropathy didn't develop until months after I finished chemo, and despite trying several treatments, it has never gone away. I have had many of the same problems Sharon mentioned. I did find that a neurologist was the doctor who had the most knowledge about neuropathy treatments. My oncologist just dismissed it as "Taxol toes" and offered me a pain medication. The neurologist was very proactive, and although the many approaches she tried didn't work for me, I appreciated that she understood that how my side effect was affecting my life and worked to make it better.
I truly thank God for each and everyone of you Im sitting here thinking how did this happen stage 2 grade 3 aggressivly with 5 children and a husband. Reading your stories are encouraging I have faith that I will survive this and God will get the Glory out of my life and my story. Continue to post. Today was a down day in 2wks. Just a sudden crash but hearing the faith from these BC women is awesome. I havent started any treatment going through all the test, but have a great support system. Im just ready to start this challenge. I know Im a SURVIVOR when people here CANCER it is a automatic death sentence. This is not my story GOD BLESS you LADIES. and once again THANK YOU.
Beatricia butler, katy texas
Beatricia, you will undoubtedly have more down days, but it sounds like you have good family and faith support to help you get through this. I think you will find that once you start treatment, your spirits will come back up. That's the way it has always been for me. Waiting for a definitive diagnosis while going through all the testing is very stressful and makes a person feel helpless, but once treatment is underway, it is easier to be optimistic. Stay in touch; let us know when you have questions or when you just need to vent.
Beatricia, so glad you found us here. This is a warm and welcoming community, here to support you however we can. As Phyllis says, cancer is tough, and there'll be days when you're just down in the dumps. But think of it this way: every day, you're one day closer to being through this rocky part of your life, and back on the path to good health and serenity. Millions of us have gone through breast cancer treatment, and are living our lives - often in a better place emotionally than we were before cancer, as we're aware of how tenuous life can be, and thus we appreciate it even more. I think you're going to be one of those women who goes on to find greater happiness and peace than ever before. And, with your family behind you, you WILL beat this, as you said. Best of luck to you - and come back and visit again, anytime. We're here for you. PJH
I stay in Cypress, TX and was diagnosed with TNBC IDC on July 7, 2011 - I am 40 years old (white), adoptive and foster mother to sixteen youth; 5 currently living with me. I undergo a lumpectomy on Wednesday the 17th to remove three masses followed by chemotherapy after I heal then radiation. I have declined the node biopsy/dissection (MRI, ultrasound, and mammogram appear to show clean) because it will not change the course of my treatment. I have breast implants and removing a node increases the rate of lymphedema. PET scan on Tuesday; the BRCA 1&2 testing results will be known in about 2 weeks. This is an unexpected journey - I started a blog to keep this journey in perspective - http://christinasrealtalk.blogspot.com
Sounds like you've got a good handle on your diagnosis and treatment - I wish you well, and thanks for sharing the link to your blog here. I'm sure sharing your experience with others will prove healing and helpful, both to those who read it, and to you. Take care- PJH
Many thanks (:
Hi! My name is Marion and I have TNBC. It was stage 2, grade 3 in the left breast. I had a lumpectomy in November and begin chemo next week. I will have 4 rounds of Epirubincin, 4 of Taxol. After that I will have 6 weeks of daily radiation. I also have 4 children ages 5-12. I wanted to ask you ladies if you have been tested for the BRAC gene and also if you worked through your treatment. I am a teacher and travel between 2 buildings each day. I am contemplating taking a leave of absence and feel very anxious about the treatment in general. I'm so glad I found this site:)
My name is Lila. I'm 46, white, and have a 19 yr old daughter. I was diagnosed with TNBC in the left breast on May 28th. On June 17th I had a bilateral mastectomy. It was stage 2, grade 3 poorly differentiated; T-2, N-0, M-0. My margins were clear as was my centinal node. My tumor, however, was 4.2cm. I have fininshed 6 rounds of chemo (TAC) and will have my first of 35 radiation treatments on Jan 10th. I am a CCRN and I have only been working part time to limit my patient contact. I did not work at all the week following chemo. Honestly, I don't know if I could have worked full time. I will not lie to you the chemo was hell!!!! Also, the Nulastin shots afterward cause significant bone pain. I made it though and you will too!!! Just remember its only temporary!!! I hope you are able to take a leave while you are going through your chemo. Chemo, a full time job, and kids is a heavy load. I was very anxious about the whole process too and I still am!!! I also had the BRACA1 study. One section was negative and the other was inconclusive??!! I'm supposed to follow up with a genetic counselor soon. I wish you the best of luck and pray your journey through this scary time finds you surrounded with family and friends. Would love to know how your doing.
Marion, with four young children at home you will probably want to take a leave of absence. The two main issues are your exposure to your students' germs and your energy level during chemo. I worked as a teacher during the second half of my treatment (the first half happened to hit summer vacation), but I had only one high school age child at home. My husband and son were able to do everything in terms of housekeeping, so I taught, came home and collapsed. I did my paper grading and other school work on the weekends.
My chemo drugs were similar to yours, and I found fatigue to be my biggest problem. Take all the anti-nausea drugs they offer you BEFORE you feel sick and you may be able to avoid vomiting. I had a couple of days of flu-like aching after my Taxol treatments. Some people breeze right through chemo. Most people will have some, but not all, of the possible side effects from chemo. It's impossible to predict which you will have. Accept all offers of help with the children, cooking, etc., and if you decide to work through treatment, make sure you have a strong support system at work and home.
Hi Marion - I had Epirubicin, and felt a little queasy, but no real nausea. Every woman has a different reaciton to chemo, and you don't know how you're going to feel - or what side effects you'll get - till you actually go through the process. As Phyllis said, though, take whatever drugs they give you, whether you think you need them or not.
You might want to take a look at our series of posts on chemo before you get started. I worked throughout chemo, but I'm not a teacher; as Phyllis said, you may need/want to limit your exposure to the kids due to their germs.
As for BRCA testing, please read our post on this. Your chance of carrying the gene, given no other specific family-history risk factors, is only about 2.4%, so I wouldn't stress over the possibility, OK?
Best of luck as you go through treatment; come back whenever you have a quesiton or need support. We're glad you found this site, too! PJH
I dont understand why you had radiation when you had a bilateral mastectomy, your margins were clear and your lymph nodes were clear? What was left to irradiate??
I was really surprised to see a response as my entry was so long ago. My radiation therapist took a long time discussing radiation plans with me. She told me she has case studies that "prove" there would be no benefit from my taking radiation. She also told me she has case studies that "prove" there would be benefits from taking radiation; and I really needed to think about it and then decide. Since cancer often returns in or around the incision site I chose to go forward with the radiation plan. Only the left side received radiation and it included the sub clavicular lymph nodes with the last seven treatments being limited to the incision scar. For me personally, I wanted to know I had tried everything available to me. I just finished last week. I hope that answers your question.......Lila
Glad you're through treatment, Lila. Best of luck to you as you get back on the path to good health. Be well- PJH
Hi Traci, My name is Kim I also have TNBC and was going through chemo. My last treatment was September 30, 2010. I am having my 2nd surgery on Dec 30, 2010 The chemo that I took was Cytoxin and Taxateer. It is painful however it is a good pain cause it means the cancer is shrinking. Mine has went from 4cm to no mass from May to October. All I have at the moment is bits and pieces in the tissue. I will be 40 in January and I am also white. Mine was also stage 2 grade 3. I am a single mom of four boys. 13, 10, and my twins are 7. If you are still keeping up with this site post something for me and I'll be glad to talk with you any time. Hang in there and stay positive. I will put you on my prayer list. Have a Merry Christmay.
Traci, I am sorry that you had to go through this but everyone is different. I know people who the doctor had given 5 years and they were triple negative but it's 7 years later. Your determination means alot too and the reason why I say that is because there are some people who are sitting around waiting to die and their bodies just shut down because of lack of faith and hope. I am not saying that faith will allow you to live forever but it does help. For example, when I would go to chemo, I was determined that I would walk out and keep my head up instead of leaving out in wheel chairs etc. like some of the people. My doctor said that my attitude is what helped me through and she hadnt seen a stong person like me in a long time. Below is some information but again, dont let this information be your bible. Consider it as information only. Big hugs all the way from Texas..
Generally speaking, triple negative breast cancer has a lower survival rate than other breast cancers, but it should be remembered that many factors play into survival rates, not simply subtype, and that the figures offered here are derived from large studies but every patient will have a different prognosis.
According to studies cited at Breastcancer.org, women with triple negative breast cancer (of all stages) have a five year survival rate of 77 percent, compared to women with other subtypes of breast cancer, who have a five year survival rate of 93 percent. Furthermore, having triple negative breast cancer does appear to raise the risk of death within five years of diagnosis compared to women with other subtypes of breast cancer, but after that five year time period, the risk diminishes.
My mother of 91 was just diagnosed with TNBC. The mass is too large for surgery, so need to try and shrink it with Taxol. She is very fit and more resembles a woman much younger. Would you recommend the chemo being delivered intravaneously or by pill form? We are hoping by having my mother go through with this treatment that her quality of life is not so severely compromised, and then not have much chance of a positive result. Has anyone had any experience with a woman in this age group? Any comments would be greatly appreciated.
I know of people who have had chemo in their 80's. I sat in the chemo room with people who were well into their 70's. What is your mother saying about all of this? Does she feel up for chemo? Be sure in your conversations with her that she feels free to decide against treatment. You wouldn't want her to undertake a rigorous treatment regime to please her children or doctor. Be sure that you discuss all the risks and benefits with the doctor as they apply to your mother based on her age and medical history.
As far as I know, Taxol is administered only by IV, but there are drugs like Xeloda that can be taken in pill form. Chemo will affect the quality of her life during the actual treatments and then as she recovers from the chemo. You mention that she is very physically fit and young for her age, so she might rebound well from the treatments. If it works on the tumor, it might buy her more years of high quality life. I firmly believe that elderly people have a right to be treated for cancer. I also know that it took me more than a year to recover from my eight months of cancer treatment at age 50. I personally cannot imagine doing Taxol at age 90. But maybe your mother is the kind of person who wants to leave no treatment untried if it will help. I wish you all the best as you make these decisions.
Thanks for your response. The family has been talking about this all day. My mother is not against having the treatment, but we are obviously concerned the quality of life might be worse then just keeping her comfortable. I have heard others that had radiation first instead of chemo, and then had the surgery after the tumor shrunk. The oncologist didn't seem to think that should be the first thing to try, even though there are only taxol and radiation as options it seems to treat this. We are really not very prepared to know what to do here. We don't want to put our mother through a horrible treatment, just to have her survive for another three months. I wish we knew what to do here, and feel comfortable with the decision. God bless you, and I pray that you will be cancer free from here on out.
The usual treatment for your mom, were she younger, would probably include a much more devastating chemo drug, Adriamycin, one that would severely impact her qulity of life - maybe permanently. The Taxol will definitely impact her quality of life, mainly with feeling ill, and possibly with a permanent side effect - pain and tingling in the feet and/or hands, which can be mild, or truly challenging, enough to make walking very difficult. Problem is, there's no way to know ahead of time whether or which side effects your mom will get, and how long they'll last.
I can understand your feeling of unpreparedness, and difficulty helping her make this decision. Even for those of us like me and Phyllis, who were relatively young at the time of diagnosis, deciding on certain treatments can be tough, as the side effects can be really tough... I'd suggest you get an idea from the oncologist what your mom's life expectancy (regarding breast cancer) would be without Taxol, and what it would be getting the treatment. Be sure you get actual figures - e.g., "Her chances are 70% better with Taxol" isn't what you want to hear. You want to know (I'm making these figures up) "Her life expectancy might be 1 year without treatment, 18 months with treatment" - figures, not pecentages. And then try to figure out possible benefits vs. possible cost. You're right, it's all so uncertain it makes the decision very tough... Another thing you might add to the mix is that chemo often isn't as effective for older women as it is for younger women. But again, there's no way to know if this would be true for your mom. Best of luck to you all as you go through this - PJH
I'm sorry your mother and your family are facing this decision, which is such a hard one to make. No one can know the future, so you just have to make educated guesses with the help of the oncologist and possibly a gerontologist who can give you averages for women in this situation. I think it really needs to come down to what your mother wants. It has to be her decision because she is the one who will endure the pain either way.
My own parents faced a similar decision when my father was in his 80's and had prostate cancer. They decided on radiation, but no chemo. Fortunately, in his case the radiation alone did the trick, and he died at age 93. My mother and I have been discussing comfort versus life extension in regards to some of her health issues. She has not been diagnosed with cancer, but she is now making treatment decisions based on what will make her most comfortable now, not on what will extend her life.
But that's my mother, not yours. As people age and need more help from their children, we become more involved in the decisions they make. While this is a matter for the whole family to discuss, in the end it's what your mother wants that must be the final factor.
My sister was diagnosed with triple negative breast cancer 4 years ago, stage 3 with a number of nodes involved. Just last month, she discovered she has metastases to her liver, gall bladder, lymph nodes and bone. Just be ever vigilant. I must say she had a great 4 years and is optimistic that, with chemo, she may have as many as 5 more. We are praying for a miracle.
Kathryn, my prayers join with yours. I'm sorry your sister's cancer has returned; as you say, chemo is extending the life of many women with metastatic breast cancer these days, so there's hope she'll be one of them... My thoughts are with you all. PJH
I'm 46 and was diagnosed with TNBC, March 2011 with a 5 cm lump and only 1 cell effected in the lymph nodes. April 1st i started my 16 week regimem of ACT every other week. I am 6 into the treatment. After the first dose my tumor had shrunk and continues to to do so. At this point it is not felt! The taxol has caused unbearable pain for 5 days after the treatment; but I continue to remind myself what my end goal is. I have stayed positive and envision myself healthy, cancer free! I have survived a horrible marriage, divorce, being unemployed for 2 1/2 years and still being able to maintain a roof over my head for my children and I, food on the table every meal, and putting myself thru school to get a degree. Then to have to endure this, but I will survive this because it is just a walk in the park compared to all the other things I have endured for the past 3 1/2 years. Believe you will survive and don't let negative in!
Monica, what an incredible challenge your life has been. You're a very strong woman. Kudos for being able to hold your head up and share your strength and positive attitude with your fellow survivors here. I know you'll get through this, and continue to provide for your children. Someday, you'll dance at their weddings, and hold grandchildren in your arms! I wish you all the best as you continue through treatment, finish, and step into the next (and hopefully much better!) part of your life. PJH
Hi Traci, Im sorry for what youre going through,I just finished my treatments in dec. I to was tneg. I was treated with t/c (taxatere)and (cytoxin) I didnt feel bad the day of chemo but the evening of the next day it hit me fast first in my knees(FELT LIKE THEY WERE BEING CRUSHED)then it went to all my bones. I laid in bed and cried it hurt so bad.the next chemo app. I told Dr I didnt want chemo anymore, he talked me into it wrote me out a scrit for pain pills.same thing after chemo again,the pain pills did nothing,a nurse there told me to take benadril too that patients say it helps.It did a little,by my last treatment I was positively not taking the chemo,again he talked me into it,this time as soon as I started to feel it in my knees I took my perscription sleeping pills(ambian) i would sleep 5 hours get up use bathroom drink as much water as I could take another pill go back to sleep I did it for 4 days,lost 12lbs but I didnt go through all that pain.My pcp gave my cymbalta 60mg for the noropathy in my toes and fingers and it helped. I feel for you with that pian.I dont wish that on anyone...I hope I helped a little,You cant give up.good luck
I hope you're through all of this and recovering. Sounds like you had a rougher time with the chemo than most... PJH
thank You,Im doing doing fine now went back to work for 5 weeks (steelmill) and was still sick to stomach I was blamin it on chemo affects they told it tkes a year to get all of it out and cells back to normal,anyway it wasnt chemo I had gallstones.Go figure.I guess thats common for people after chemo.But like everyone else now that Im not getting anything to keep it away Im on these sites lookin to see what my outcome might be. we just never know..
Wow, I love to see all these posts. I was 41 dx stage 2A grade 3 TNBC in May 09. I underwent lumpectomy, chemo and rads. Had 1 positive node with microscopic mets. I am coming up on my 2 year cancerversary since dx and still scared to death of recurrance. Plus all the other effects that nobody tells you about. It is amazing how many health issues come up after putting your body through the ringer like this. I never know what to say to those who say, Oh you are done with treatments and all is good now? I always say it is a never ending battle and things happen even after treatment is done.
Congratulations on your upcoming cancerversary, Elise! I wish you many, MANY more. Gradually, ever so gradually, your fear will dissipate; with each passing month, as treatment recedes into the past, you feel a bit more comfortable. But while you're going through this transition period - and especailly these first 5 years - it's hard, I know. Take a look at our post on fear; it may help you out.
And people don't understand that cancer is a lifelong challenge, it's true. You're never the person you once were, physically or emotionally. Which isn't to say you can't rebuild a good life; it's just different. When people say, "Oh, back to normal? Everything's fine?" they're trying to reassure themselves that you're not in pain, not suffering. These are probably casual acquaintances, as your closer friends would know how you feel; so for these more distant friends, you could just say, "Yes, I'm a survivor now, and I'm working at staying that way," something along those lines. Something that lets them know you're basically OK, but it's still a challenge. A "never-ending battle," as you say, is a good description.
PJ, Phyllis and Lila,
Thanks so much for your support! I just saw your posting now as they got sent to spam. I went for my first round of Epirubicen and Cytoxin yesterday and feel pretty good. I am going for my shot this afternoon. I took off the rest of the week. I am going for the genetic testing on Monday. The school district is letting me play it by ear, so I am going to see how I feel later this week. If I need further surgery, then I will definitely take a leave. Not sure how it is going to work with Radiation either. Thank you so much for sharing!
Well, Marion, so far, so good. Hope you continue to feel OK. Glad your employer is cooperating! Check in here whenever you feel like it, OK? Take care - PJH