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

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.

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.      

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!

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.

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

Glad you're through treatment, Lila. Best of luck to you as you get back on the path to good health. Be well- PJH

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

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

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.

Best of luck to you - PJH

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.

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

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

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

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.

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.