My wife is currently going through the A.C.T. treatment plan. She has had 2 A.C. sessions. So far, it has been better than we expected. The first few days after treatment are the hardest, but this week she went back to work on day #3. Stay positive, take your meds and get plenty of rest. God Bless.
I just had my 3rd AC and have had similar results to John's wife's. I had it 3 days ago and so far no issues at all. My hair finally started out just last week, so I had it cut short first. I have all these pain meds I haven't had to take, either. It's turning out to not be the nightmare I had expected.
Hoping the Taxol isn't too bad, either. Fortunately I'm retired, so don't have to keep a specific schedule. That's good, because I get a slight case of brain fog the first week after chemo, which I have every other week.
Hope everyone keeps in mind that if you do get uncomfortable or your tummy gets queasy, don't put off taking your meds for that symptom. It's easier to head it off than to get rid of it. I usually would wait until the pain got so bad I had to take something.
Thanks for all your good advice. You have no idea how much you've helped me prepare for this trip I'm on. I tell everyone I'm not a cancer "patient" but a cancer "warrior." It's not going to beat me and I no longer doubt that.
Misty, SO glad to hear you're doing well with the chemo! That's awesome. And I'll bet things will keep on this way - once you've had three infusions, you pretty much see the pattern.
Thanks for your great advice here about the pain meds - as my oncologist said, "Cancer treatment is not the time to have a stiff upper lip." Gladly take anything they can give you - after all, think how much research has gone into coming up with all these drugs. We might as well take advantage of it, right? 
PJH
Last time I asked about pain meds I explained I was having trouble swallowing mine. My oncologist's PA asked if I'd like to try a liquid, and I said I would. Well, when I picked up my Rx and saw it was Morphine Sulphate I was shocked. I'm not ready to go that far. Maybe if the pain gets real bad one of these days, but it's certainly nothing for me to consider taking now.
I just picked up a new Rx my onc called in. It's Tramadol HCL, which isn't something I'm familiar with, but will try it if I need it. Should I be so worried about the Morphine Sulfate? It really sounds scary to me. Usually Tylenol does the trick, but I need to avoid too much of that. That's why this new drug is formulated without it. Maybe it'll give my other organs a break, too. I don't want any problems with the rest of my body at this time.
Thanks for your reply, as usual!
Misty, it is important to take the correct dosage of any pain medication, even Tylenol. Your doctor undoubtedly wrote the prescription for the Morphine Sulphate at a safe level. Of course, you would want to take it only when you are really in pain and only as prescribed. You might want to try it at night in case it makes you groggy. Why don't you talk to the nurse and/or your pharmacist about the risks and benefits of each of the pain relievers you are considering taking?
My father, who had trouble swallowing pills, used to put them in applesauce or a banana to get them down.
I'm glad that your experience with chemo hasn't been as bad as you expected. Although each person's side effects vary, typical Taxol side effects are flu-like aches and pains in the first few days after administration. Nausea is not usually a problem. Many people will feel fatigue in the middle of the chemo cycle, but some folks just breeze right through it. I hope you are one of those lucky ones.
Thanks, Phyllis. That's good to know. The Rx for morphine had to be filled through the hospital's own pharmacy. None of the others in town carry that sort of thing, from what I've been told. I may have to try it if I get the flu-like symptoms you describe. I had them after my first infusion and it wasn't much fun. The thing with talking to my pharmacist about it is that he wouldn't know I have a morphine Rx elsewhere. I really do like using one pharmacy, though. They've alerted me when I have a contraindicated Rx called in and it's not something I should be taking with my other meds.
So far this time I haven't had any pain that was bad enough to warrant the "big guns." I've found, too, that if I take my meds while having a bite to eat, the larger ones go down OK, too. Hopefully it won't be a big issue when I go on Taxol, either.
Thanks for commenting. You gave good advice. I do discuss things with my nurses in the chemo area, and they are most helpful. I'm glad to have such a great group to work with as it gives me more confidence in them and what they can do for someone just to make them feel more at ease.
Now if they could just find a better way to get blood out of my port. I understand little flecks of tissue get stuck to the needle when they attempt to draw the blood. Takes several tries with Heparin to get it cleared. One day more than that. I even had to have my port X-rayed to ensure it's functioning like it should. My 2nd chemo was the worst and I even had to go to the other lab for my blood draw (from my arm) just to see if my white counts were up enough to have chemo that day. I'd gotten pretty anemic, which has been an issue for me before. This past Tuesday my nurse was able to "strike oil" on the first attempt. That gives me hope that this won't be an issue each time.
Thanks, again, Phyllis.
Breast cancer blogger and photographer Deborah D. Lattimore describes her chemo cocktail, along with radiation and Zometa in this post:
Learn more about Deborah by reading her blog, love, cancer, etc.
Deborah also posted photos through Flickr, documenting her first chemo session, with Adriamycin/Cytoxan.
I agree with everything the first person said except for the comment about taxotere. I received treatment at one of the top hospitals in the US - Oregon Health Science University. My oncolologist stated that taxol should be avoided because it can cause permanent damage to the arms and legs leaving them without feeling and movement. Taxotere does not do this.
I received ACT all at the same time.
Additional items to help you:
* the only thing I could drink that tasted good because of the metal taste was Crystal Light peach tea.
* if you get mouth sores, avoid tomatoes and strawberries
* drink lots and lots of water to flush your system when you get an infusion
* ask for Neulasta to increase your white blood cells - it can cause some bone pain so be prepared for that.
* have a port imbedded under your skin - it saves a lot poking for treatment and blood draws.
* ask for Emla cream (lidocaine) to put on the port to kill the pain - it has to be put on for at least 90 minutes to work. Put a piece of Saran wrap over it to prevent staining on yor clothes.
* Nausua - even though my treatment was very strong, I didn't have nausua at all. I contribute that to the meds I took - Emend.
* Chembrain - lots of people have this. I didn't, and I contribute that to playing scrabble and other word games every night. I kept my mind active even though I couldn't keep my body very active - I had severe fatigue the last 2 months and treatment and an additional 2 months when completed.
* Zometa - is usually taken for 5 years, not 6 months. Do some research.
* ALWAYS get a 2nd opinion
Thanks for these helpful suggestions, Carolyn. Readers, be advised that many women take taxol; it's a proven chemo drug. Doctors have the right to their opinions, of course; and they will differ at times.
I like your suggestion to keep your mind active to fight chemobrain. However, if you're going to get it, you can't prevent it; you may possibly lessen the effects somewhat, but no mental exercise can stave off the physical effects chemo has on your brain. Thankfully, it does abate with time.
Thanks again for connecting - PJH
To the contrary, I had Taxotere and was told it is the nastiest poison out there, and we wanted to attack the cancer with the strongest. 3 1/2 years later I still have chemo induced neuropathy, hands, fingers, feet & toes, always, always have tingling and numbness, pins & needles. Like a permanent hell. Of course, better than a reoccurence or the obvious, but now live in constant pain.
Terri, if you haven's already done so, I'd suggest seeing a neurologist about the neuropathy. My oncologist seemed to take it as an annoying consequence of keeping me alive and only offered me one drug, which she said would have severe side effects. When I needed to see a neurologist for another problem, she took the neuropathy seriously and had lots of ideas about ways to improve it.
Thanks, but in 3 1/2 years, been there, done that. Lyrica, pain pills,vitamins supplements, even some sort of prescription vitamins, CST therapy (cranial sacral therapy) etc. The only relief I seem to get is when I fly up to a colder region.. This goes against the neurologists theories, but it does seem to work for me atad. Almost like the barometric pressure helps it in some weird way. I live now in FL, but golly, if the barometric pressure will relieve the pain in some way, I would gladly find a way to at least spend more time up North. Any thoughts? Have heard about an "annydyne" system that might can help. Ins. won't pay, but I don't care, I will pay out of pocket for any relief. I have a question in online to a chemo induced neuropathy specialist from a "Living beyond breast cancer" blog. She says she will be answering the questions over the month of September.
Thanks, but in 3 1/2 years, been there, done that. Lyrica, pain pills,vitamins supplements, even some sort of prescription vitamins, CST therapy (cranial sacral therapy) etc. The only relief I seem to get is when I fly up to a colder region.. This goes against the neurologists theories, but it does seem to work for me atad. Almost like the barometric pressure helps it in some weird way. I live now in FL, but golly, if the barometric pressure will relieve the pain in some way, I would gladly find a way to at least spend more time up North. Any thoughts? Have heard about an "annydyne" system that might can help. Ins. won't pay, but I don't care, I will pay out of pocket for any relief. I have a question in online to a chemo induced neuropathy specialist from a "Living beyond breast cancer" blog. She says she will be answering the questions over the month of September.
Wow PJ I don't know if you still check this site but I sure hope so. I have had one round of my eight total treatments for breast cancer. For the most part I only complain about occasional nausea and man am I just a walking zombie every other second!!! One minute I am just fine then all of a sudden I feel like I haven't slept in days!! My treatments are one time every other week with four of AC then four of T. I also am getting a shot of neulasta the day after each of the AC treatments. My question is, can the neulasta be making me zonk out on top of the AC? Also do the effects dissipate or continue to compound over time? I guess I am wondering if I can look forward to curling up in a ball in a few weeks. Thanks for all of the info you put on the site.
Yes, I'm still here! Chemo affects all of us differently. Sometimes women start to feel better as they get used to it, after a few treatments; sometimes the side effects compound, and you feel more tired. I'm not sure if fatigue is a Neulasta side effect, but I'd assume it would be more an AC side effect - since Neulasta is supposed to build up your white cells, which should give you more energy.
I've heard that the AC part is tougher than the T part - so perhaps after four treatments, you can look forward to an easier time. Whatever happens, don't fight it; go with the flow. This is not the time to be Superwoman. Let people take care of you, and go easy on yourself. There's no "should" here; no "I should feel better" or "I should be able to work through this." Validate how you feel, accept it, and believe that better times are ahead. Good luck - PJH
Today is January 11, 2010 and I had my first ACT treatment last Monday at Morristown Memorial in NJ. I unfortunatley was one of those people to have the severe allergic reaction to the Taxotere. The nurses were great and got everything under control.
My worst reaction was intense headaches, fatigue and bone pain. Fortunately I did not have any nausea. On Saturday I was up an about and as of today I am pretty normal. But it was a tough 4 days.
I have 5 treatments to go. One every 3 weeks. At least it wil give me some recovery time. But I am sooooo nervous about having another allergic reaction. I am wondering if they will change the regiment?
Any thoughts? I have stage 11a with micro invasion of one lymph node. Right Mastectomy with reconstruction. The tumors were .2mm and .8mm...
Going to get my hair cut today and donate it... I just cant deal with 2 feet of Red hair on my pillow ya know?
Deb
Deb, as I understand it, once they know you have an allergy to the Taxotere, they adjust the delivery speed and watch closely. Certainly they don't want to have to put you through another severe reaction. Ask them well ahead of time (like, call them sometime soon) what their plan is to avoid this, OK? I'm glad you're feeling better today. And, good idea about the haircut; having my hair cut short-short really helped me deal when it fell out. Very best of luck in your next treatment. And stay connected here, OK? We can help. PJH
Debi, I'm sure they will make adjustments in the administration of your chemo. They might decide to drop the taxane part altogether, but it is more likely that they will try to find a way to give you Taxotere or Taxol safely. They may add a different premed to reduce the chance you'll have that reaction again. As PJ says, they may administer the drug more slowly. They will definitely watch you very closely. To ease your anxiety about this, I'd suggest calling the doctor's office and ask about what changes will be made in light of your allergic reaction.
You were right. I met with the Nurse today and she said that after I had the allergic reacation they challenged me with re-administering the rest of the taxotere. They also feel the migraines are from the Dex prior to the infusion and after.. Kind of like crashing .. So she made me feel very relaxed. Going to get a port next week as well. Just don't wont to deal with all the needles, plus the nurse feels it will be better for them to administer the drugs. So hopefully the next treatment will be easier.
So the port will be installed next friday..Supposedly its only an hour surgery. Wish I could have had it done this week, but my counts were low. They feel the neulasta will kick in tomorrow. Plus an inflation. Joy.
Man I cant wait till I am done with all of this.
Last, I also made an appointment with a therapist that deals with cancer patients. Since I have been diagnosed I started having panic attacks and feeling like every bit of medication is now going to kill me. I know its silly , so I thought i would try to nip this in the bud before it get's worse.
Hi PJ - Just an update I am going on my forth treatment. Not bad all in all. Unfortunately I am still having migraines. Though I think the side effects are from the Neulasta shot. I have a migraine, followed by rapid heart beat and the lovely bone pain. Going to ask the nurses tomorrow when I have my blood work done. Hopefully they can help.
But for me, its ok. Yeah I lost my long red hair. Yeah I look like cupid. ( I keep expecting to see a harp every time I see my reflection.) But after the first week, the following Monday I am out of bed. My energy comes back and I stop eating from all the steroids. Lovely cycle.
So I try to think of it as a hurdle. March 5th is my birthday and March 8th is an infusion, then the 29th my cousin is spending a week with me and then the 19th of April my brother is coming home from Peru for my last infusion. Each date is a new hurdle I will jump over cancer free.
The last one will be May 17th, the day I have my breast reconstruction complete. Sheeeeewwwww.. Long 6 months. A year I will not forget. God willing a healthy one going forward.!!!!!!!
Xoxo Deb
I am on AC now and have one treatment. I go again this Tuesday Nov 24 2009 for the second one. Your article was very helpful to me and gives me hope. So far the biggest side effect I have had is extreme fatigue for about 4 days and less energy than usual the rest. I am lymph node positive. My Onocologist decided to do chemo first to shrink the tumors and then a mastomy. I have a port in my chest and I love it. The pain is much less than ivs every time would be. I did get my hair cut really short so the hairloss wont be as dramatic. Thanks for the info here and encouragment.
Bonnie, I'm sorry you have to go through this. But hang in there, be strong, and you'll come out the other side SO proud of yourself for being able to do it. Waiting for your hair to fall out is angst-producing, and definitely you did the right thing getting it cut short. Once it DOES fall out, you just accept it and move on. I hope your succeeding treatments produce nothing more than fatigue - good luck! PJH
My dr. gave me TAC all together over a 5 month period. He recommended Taxotere over Taxol because it was less apt to cause problems with the hands and feet - unable to use them.
At the end of the treatment, I did have fatigue so severe that I had to be in a wheel chair for several months. I am feeling really good now - 1 1/2 yrs later.
The nauseau never occurred with me. Dr. gave me Emend prior to and 2 days after chemo. I worked great! I only had mild nausea 1 time.
Has anyone experienced migraine headaches after a few days of receiving AC?
I found that I had migraines after my first treatment from the Dexamethazone. For me it was an immediate reaction, so I didn't have trouble diagnosing it. Most of the anti-nausea drugs did the same thing, while the one that didn't, gave me a rash. It was a catch 22 situation--I got the migranes from the anti-nausea drugs, which also made me dizzy which made me more nauseous. I took myself off the anti nausea drugs and the doctor decreased the amount of anti-nausea drugs during the infusion. As a result, I felt much better overall. They had me take some antacids to help with the nausea. For me, it wasn't any worse than the 5 pregnancies I went through, so it was doable without medication. Good luck!
PJ your article was one of the first things i read before starting chemo. I loved it and i learned alot. i went thru 4 cycles of ac before doing the mastectomy. Today i started taxotere , 3 minutes after starting i felt heaviness in breathing and had a sudden back pain that reminded me with delivery contractions . The nurses was here in no time, stopped the chemo and gave me some medications for the allergy until all pains faded and started taxotere again , this time with no troubles.
i have'nt ( yet) felt nausea or vomiting after taxotere like what happened before during ac , i do't know is it beacuse taxitore may not cause this to me , or is it beacause i'm taking steroids which may prevent this side effects. whatever is the reason i am happy for not being nouxios and being tired all the time is enough for me this time .
Hanno, it's true the side effects are different for taxotere - generally, not nausea, but perhaps the chance of neuropathy - tingling in your hands and feet. I hope "all" you experience is fatigue! Chemo sur eis difficult... but just think, you're halfway through, right? And the worst is behind you, I'm quite sure. Please stay in touch - we're here for you. PJH
Wow. I am so glad I found this. Thank you for all of the information. I started chemo a week and a half ago, so I'm only one treatment in. My regimen is AC every two weeks for 4 treatments, then Taxol every week for 12 treatments, followed by surgery. My tumor is 5.4 cm and triple negative. We are hoping the chemo will shrink it before surgery. Sounds like I'm getting a pretty aggresive regimen, but so far.... I almost feel guilty because I've experienced very few side effects. No nausea or fatigue, no pain from the Neulasta, no hair loss (although I know it's coming). I almost wonder if they actually gave me any chemo... lol.
I'm guessing that the fatigue will come eventually, but I'm happy for every day I make it symptom free. I've decided that once my hair starts to fall out, I'm going to let my kids shave and paint my head. I think that will be less disturbing for them in the long run, rather than watching me slowly go bald. The one thing I have noticed is that I am breaking out worse than I did as a teenager. Has anyone else experienced this?
Again thanks for all the great information!
Teresa
Glad you found us, Teresa. And I think the plan to let your kids paint your head sounds super! Have you read our chemo series? If not, I suspect you'll find it VERY helpful. I hope you continue to remain relatively side effect-free; I went through it without too many side effects, so it's possible... Best of luck, and stay in touch here, OK? We can help. PJH
Woke up with sensitive gums and what feels like the beginning of mouth sores, and wouldn't ya know it.... my hair is starting to fall out.... yipes... that just made everything more real. Taking a deep breath, regrouping and getting my game face on. It's time to really start this fight. Thanks for the advice. It's nice knowing that there are so many others out there who have done this and done it well. I'm looking forward to the day when I can say I kicked cancer's butt.
Found a lump in my left breast in January - normal mammogram last October. Repeat mammogram still negative for a mass. An immediate US did confirm and then needle biopsy pathology indicated invasive ductal carcinoma of just under an inch, just beneath my nipple. 2 surgeries (breast conservation) to get a clear margin, negative nodes and now in chemo. 4 cycles of AC - in which the nausea got progressively worse each time. No meds helped much but I powered through - kind of like a really bad hangover for 3-4 days. Now on Taxotere for 4 cycles - had one and the main side effects of that are mouth sores and extreme fatigue. But through it all, I have been working almost everyday (M-F) for 5-6 hours. The more routine and normalcy I can work into my life the better. Oh - how I miss the monotony of my old life! 3 more cycles of Taxotere and then off to 6 weeks of 5-day a week radiation. Not sure if I will be placed on any maintenance drugs. Long story short - it's all do-able and there is light at the end of the tunnel. Take any support that is offered, from friends, family, church, work, whatever. You can be strong and still accept help. Take care and take heart!
PJ..I wish I had found your postings sooner. I am having my last round of T next week. Stage 3 invasive lobular also DCIS was found when I had my mastectomy. I have done wonderfully with my treatments up until now. It has been 2 weeks since my last treatment and I feel like I have been hit by a truck. Is this normal so late in the game? Since I have been so well my family and friends are somewhat "baffled" by my lack of enthusiasm to continue in my normal activities. (I have two teenagers) This is causing some frustration on all parts. Is this fatigue normal or am I just burning out and need to just get up and go!
You are the first posting I have actually felt comfortable communicating with
Thank you, JEH
Jane, some people do experience chemo as cumulatively worse. If you haven't been tired before now, you have done exceptionally well, so give yourself permission to get extra rest now. If you get chemo every three weeks, you are probably at the low point in this chemo cycle and should feel better soon. But for many people it takes months to get their energy back, so don't expect to be able to do everything you have always done. Just be honest with your family and enlist their help with the tasks you usually do, or let the friends and neighbors who volunteered to help know that now is the time a meal or help getting your kids to their activities is needed. Our son was a teen when I was in treatment and I found it important to let him know that I felt bad because of the treatment, not the cancer. If you have not seemed "sick" before now, your boys might think you are getting worse, not better, unless you explain.
Great answer, Phyllis. Yes, chemo side effects can be cumulative. And yes, even though you may not realize it, you're gradually getting weaker and weaker, and more and more prone to infection. I did great up through my final treatment, and 2 weeks later landed in the hospital with pneumonia - tried to do too much, too soon. So give yourself a break, Jane. It's OK to rest, to coddle yourself (if you're family isn't doing it), and as Phyllis says, let your teenagers know it's not the cancer, it's the treatment. And that you'll be on the mend soon, but progress will seem gradual; patience will be a necessity in the months ahead. Best of luck to you - PJH
I am extremely thankful for this 'blog'. I am a stage 3A breast cancer warrior and will begin chemo in the next few weeks (most likely the TAC regimen over the AC-T). After looking into a clinical trial of adding a drug called bevacizumab to TC or TAC, then researching all of the drugs, I was VERY overwhelmed...Then, I found your site PJ!!!! You and all of the people who have posted comments helped to ground me. I am ready to battle again as I have since being diagnosed Oct 13, 2010, having many tests and procedures, and a mastectomy. God bless you, PJ, and all who are a part of conquering this disease...one step at a time.
Welcome! Love your name (screen name?)... I have a friend who did the Avastin clinical trial (bevacizumab). She was triple negative, and did extremely well on it; now, several years later, she's doing fine. Are you going to try the trial?
Whatever you choose, remember: it's your body, your decision, and second-guessing gets you nowhere! Step out boldly, and don't look back. You're going to kick this cancer, and get back on the road to health. Remember, "Cancer is a rock in the path. Step over it; the path will still be there." You're stronger than you know... Come back any time with questions, venting, whatever; we're here for you. Take care- PJH
A Stage III breast cancer diagnosis is overwhelming, but you will get through it. I still remember how frightened I was twelve and a half years ago when I was diagnosed with Stage IIIB inflammatory breast cancer.
Taking someone with you to doctor's appointments to take notes can be helpful. Keep in mind that if there is definite evidence that one drug treatment plan is definitely better than another, the doctor will let you know. When a doctor gives you choices, the studies are probably inconclusive as to which is better. Maybe one study is showing preliminary results that look better for the newer treatment, but the final results are not in yet. Or Treatment A has better results for one group of patients, and Treatment B has better results for a different group. Ask your doctor to help you make a list of the risks and benefits of each plan. Then as PJ says, once your make your choice, don't look back or second guess.
Hi, fellow warriors and survivors. I just found our from my ins. co. that my appeal to have the brca1 and brca2 genetic testing is declined as it is not medically necessary- eventhough I am a 38 year old with stage IIIA breast cancer and my doctors have told me that knowing if I am a carrier it will aid in my treatment. The problem comes with me not having any known breast cancer on my mom's side. I am still unsure of my father's side. I have emailed my breast surgeon and medical oncologist for their input. The cost is in the thousands or else I would just fork out the money. What are your thoughts on having the test done or not? What experiences have you had in regards to brca testing? Any tips on financial aid if I truly need the test done and ins. doesn't cover? Many thanks for your willingness to share... and much hope, faith, and love to you.
Hi - With no family history on your mom's side, the chance that you're dealing with either of the BRCA genes is about 2 1/2%; thus the insurance company's reluctance to pay for testing. Unless you have some other compelling reason to be tested (stage/age aren't enough), I think you're fighting a losing battle here, as far as coverage goes. Please read our post on BRCA testing for information about what would raise your risk, and what you might present to the insurance company. And if you ultimately plan to go ahead and get tested, you might find some help in our post on financial resources. Good luck to you - PJH
I tested negative for BRAC1&2 gene mutation, yet am the third generation to have breast cancer. Treatment doesn't change if you have mutation. Modified radical mastectomy May 3, 2011. 6.5cm tumor, 14 positive nodes. AC was not difficult, T very tolerable and my hair is growing back with 6 more weekly treatments to go!
Your story is not unusual. Since many people who have breast cancer have a family history but don't carry the BRCA1 or BRCA2 gene, it appears that there are other genetic components that we don't understand yet. Perhaps there may also be some environmental factors that affect families. The important thing is that you are getting the proper treatment.
I am stage 2A invasive lobular breast cancer, negative lymph nodes. I have had 4AC treatments and on #9 of 12 weekly T treatements. Aggressive for negative nodes, but I was given the choice and decided to go for the "big guns" glad I did. I recommend getting a port, I know most people that don't, wish they did.
AC: Not too bad, no nausea but def. sour stomach. I took Emend after the first treatment and it helped tremendoulsy! I have decent RX insurance and found Emend to be very expensive but worth it! The pre-meds helped for the first two days, but day 3 and 4 were tough, day 5 it was like someone flipped a switch and I was back to normal.
Hair loss: Pretty much happened between 2 and 3 weeks after the first treatment. I recommend getting help with this, ask your Dr. or anyone that has been through this. I went to Eden Spa which is through the Florida Hospital and they were wonderful!
T: I am getting small doses every week for 12 weeks, and this is easily tolerated. Whatever hair I had left from AC fell out after 3 weeks of T. I have 4 treatments left and peach fuzz is growing back. Overall taxol is much easier than the AC and I can see the light at the end of the tunnel!!
Just got my first AC yesterday, reading thru the posts were really helpful. Didn't feel good yesterday, I think it was because I didn't take the Emend before the treatment.
Thanks for sharing the info. Especially for me, it all happened so fast. A week ago, my primary Dr. was just telling me it was an infection.
Happy holidays!
Stay strong!
Leslie, live and learn... Rule #1: Take the drugs even if you think you don't need them! I'm glad you've gotten through your first infusion - it's always a little bit easier when you know what to expect. Keep a day-by-day diary of how you feel, OK? It'll help you plan for future treatments if you know that on, say, day #6 you don't feel well, but day #8 you feel great. You might find reading our guide to treatment helpful. Best of luck as you go through this, and come back and visit if you have any questions - we're here for you. PJH
Pat, please don't assume chemo is going to ruin your life. It may affect the quality - MAY being the important word. You just don't know. You might fly right through it, no lasting side effects at all. There's just no predicting, from one woman to another, what's going to happen. On the other hand, lots of data proves that chemo will reduce your risk of recurrence. How much - there's no saying. Are you eligible for the Oncotype-DX test, perhaps? If so, that would be valuable information to have, as you make this tough decision. Best of luck to you - PJH
Thanks for your comment, and I appreciate your support. Unfortunately, the Oncotype test isn't really indicated in my case, since the rate of reocurrence, metastasis, etc. is quite high in my type of cancer. I am 'triple negative' with a tumor of 2.7 cm, and 3 positive lymph nodes. I have had a lumpectomy plus a second surgery to remove more tissue and lymph nodes. I am told that chemo is my only viable choice of treatment. No drugs (like tamoxifen) will work in my case due to the triple negative status. I am quite distressed, depressed, and feeling hopeless. Any encouragement will be appreciated.
Pat, don't feel hopeless! Plenty of women get through both chemo, and triple negative breast cancer. Time heals, it really does. Gradually, your spirits will pick up, and you'll put one foot in front of the other and get on with it - because you have no choice, in reality. You're stronger than you think; and you'll find that lots of people reach out their hands to help you along the way. Chemo is indeed your best bet, with your diagnosis; and you might fly right through it. Some women do; I never missed a day of work during chemo, aside form the actual infusion days themselves... So have faith that the chemo will work, and it'll be "do-able," OK? Take care - PJH
Pat, I don't know your age and family situation, but for most women with an aggressive cancer, ACT needn't ruin your quality of life and will probably give you years of healthy life that you would not have if you decide not to do the chemo. I had an aggressive Stage IIIB inflammatory breast cancer that had already spread to 16 lymph nodes by the time of surgery. I had all three of the chemos that you will be getting, and twelve years later, I am here to tell you that although the chemo was tough, it was worth it. I was able to work while taking Taxol and my radiation. I was 50 at the time of diagnosis. If you are elderly and have accomplished all your major life goals and if you have health issues that might be made worse by chemo, then maybe it is too much. However, I suspect your doctor wouldn't suggest chemo if he thought you couldn't handle it. It would be easier to start it and decide to stop it than to skip chemo and then wish you had given it a try later if the cancer recurs. Of course, chemo is scary, but you can do this.
Don't assume that just because it's awful for many that it will be that horrible for you. We are all different. I did 4 treatments of adriamycin and cytoxan two weeks apart, followed by 12 weekly treatments of taxol.... The Emend really did help. I didn't throw up even once.... and worked all the way through chemo. I started getting pretty achy towards the end, but I responded surprisingly well to this regimen.
I had a very aggressive and deadly tumor. My prognosis was NOT good. With this chemo regimen, my tumor shrunk from 5.4 cm to 1.4 cm. I had a double mastectomy on Nov 29th, due to being BRCA1 positive. As of today, I am cancer FREE!
You can do it! Fight for your life. You have no way of knowing how you will respond and which side effects you will endure. I know it's hard, but keep a positive attitude and try to keep a sense of humor. I truly believe that it really does help.
Good luck in your fight!
Don't assume that just because it's awful for many that it will be that horrible for you. We are all different. I did 4 treatments of adriamycin and cytoxan two weeks apart, followed by 12 weekly treatments of taxol.... The Emend really did help. I didn't throw up even once.... and worked all the way through chemo. I started getting pretty achy towards the end, but I responded surprisingly well to this regimen.
I had a very aggressive and deadly tumor. My prognosis was NOT good. With this chemo regimen, my tumor shrunk from 5.4 cm to 1.4 cm. I had a double mastectomy on Nov 29th, due to being BRCA1 positive. As of today, I am cancer FREE!
You can do it! Fight for your life. You have no way of knowing how you will respond and which side effects you will endure. I know it's hard, but keep a positive attitude and try to keep a sense of humor. I truly believe that it really does help.
Good luck in your fight!
Sorry for that double post.... but I also wanted to add that I am triple negative as well. ACT is VERY effective against triple negative! Triple negative actually responds better to chemo than many other types of breast cancer. My tumor started out the size of a golf ball and by the time I finished chemo, it was undetectable by palpation or mammogram.
I think it would be a good idea for you to get genetically tested. If you are younger than 50 or have a family history of early onset breast cancer, then you may have a gene mutation that could make recurrence a greater possibility, but armed with that knowledge your doctors can plan aggressive treatment. You can improve your chances by 96%!!!
You also may want to look into having your ovaries removed, as that can lessen your risk as well. I'm 40 years old and I am planning on bouncing grandbabies on my knees.... Please hang in there and don't give up without a fight!
You CAN win this!
You were absolutely right about every one respondes to chemo differently. I was told by the nurse and reading thru the guides to prepare for 3rd day 'hit' which was on Christmas day, nothing happened! (Really nice x'mas gift, won't you say?) I'm actually kind of looking forward to my 2nd infusion next Tues., I want to beat this cancer! I know it will get tougher as I receive more chemo treatments, but when you are staring at 6cm tumor, the fight is on.
The other thing that I'm looking forward to is shaving off my hair next week. How many times in your life you can do that without people thinking you've lost it???
Stay strong...
Leslie, be SURE to take photos - good photos - all along the way with your hair metamorphosis. I actually enjoy looking back at my stages now - cut short, cut shorter, shaved/bald, growing back (1/2"), growing back (tight curls)... It's especially interesting to see your bald head - I mean, no one's seen that since you were born, maybe not even then. And I find bald heads surprisingly beautiful - sleek, and with lovely curves... So get out that camera! 
AND - stay strong. Take care- PJH
Pat - I am also triple negative and was (still am) very worried but i try to take each week, one at a time. I am doing the T (had 10 out of my 12 weekly chemos of that so far) to be followed by AC and i can say that that the side effects for taxol were not bad except the fatigue yet i am able to go to work every day (except the day i get chemo). (the avastin was another thing but I wont go there for now since this is not what you are looking at). It is scary BUT the alternative is worse, ie doing nothing. Never give up. I will be starting the AC in a couple of weeks and that sounds worse than the Taxol but I am bracing myself knowing that the nursing staff where I am going is not going to let you suffer needlessly. the internet can be your best friend and your worst friend depending upon the sites - this site we are on is great - i am very encouraged. deep down though, and late at night, realty seeps in BUT again you can decide to sink or to swim and now I am choosing to swim and go with the flow - PLEASE GO WITH THE FLOW. your life is worth it. you have to fight. I hope you will be fine...I hope all of us triple negatives will be OK but if we dont try we will never know. hang in and go for it.
Helen, I find night (middle of the night) is always the worst time. It's when the sadness and fear creep in... I try to get up and do something - read, walk around, anything other than lie awake and think. You sound like you have a great attitude; hold onto it, and let it smooth the path ahead. We're here for you- PJH
I just had my first AC chemo 2 days ago, followed by neulasta injection the next day. I felt o.k. at first, but after the neulasta I have much facial swelling, eye swelling and general edema, having gained almost 6 pounds in 3 days. This surely can't be normal!!! What could be causing this?
We're not doctors here, Pat - this is something you should report to your oncologist. I assume they've given you a contact number to report side effects, no matter when they happen; don't wait till Monday to report this. It's probably a side effect of the chemo, but you need to check in with someone and find out if there's anything you should be doing to deal with it. So make the call today, OK? PJH
Dr. recommended Benadryl for the swelling. It has helped some. Has anyone else experienced this kind of swelling? My weight has gone up 6 lbs. in 3 days, and I feel awful. Can't button any pants. Face looks puffy and swollen. Always tired. How long might this last after the AC/Neulasta? Will I ever feel normal again? Before my last surgery I worked out 6 days a week with kickboxing, aerobics and weight lifting even at my age of 65. Does anyone think there's a chance I can ever do this again?
You absolutely will feel better, Pat - you're in the throes of chemo right now, and it does a number on you. This is probably the most aggressive punishment your body will ever take. You WILL feel awful at times... and you WILL feel better when it's over. Probably even before, since they'll figure out ways to deal with whatever side effects you experience. It's only natural that you're discouraged, at this point. You've got a long road in front of you. But every step you take is another step towards getting back to normal - your "new normal." Back to kickboxing!
Please come back here whenever you need help, OK? We're here to support you o this journey. PJH
Sally still had an open wound from her mastectomy when it was time to start the AC-T. Her oncologist then switched the order of Chemo to 12 weeks of T followed by 4 AC gtratments. I haven't seen this regimen on any web site. Does it have the same effectiveness as AC first then T? Is there a downside to doing it this way? I know it's important that the wound not get infected but is the outcome the same if the order of the chemois reversed?
I've heard of this regimen - actually, I think some oncologists may be switching to this. So I wouldn't worry about its effectiveness.
The other point you might consider, though, is this: it sounds like you might not be quite comfortable with this oncologist's decisions. If you or Sally find yourself doubting what the doctor says, then you can always ask for a second opinion or consider switching to another oncologist. This doctor will be seeing Sally for years; best she have someone she feels comfortable with and trusts. Take care - PJH
My experience with Taxol was NOT as mild as reported on this website. I had dose dense ACT and the immediate side effect of the Taxol was paralysis of my legs for 3-4 days after treatment. Since I was receiving Taxol every 2 weeks and had 4 treatments, each one got progressively worse. I was on Dexamethasone and Oxycontin (high doses) and the pain became almost unbearable. I was left with peripheral neuropathy in both feet and hands (5 years later this has not improved). I have significant weakness in both legs with constant cramping during day and night. My oncologist indicated that I reacted more as if a diabetic, which I am not. She said my symptoms were extreme and of course said it was unlikely there would be long-term damage. Unfortunately she was wrong. So this drug can be extremely damaging even though I understand that I am in a very low percentage of this type of side effect.
Sally, thank your for sharing your experience. Your reaction at the time of chemo was not typical. Receiving Taxol on the dose dense schedule might have made your situation worse. Probably one reason people find Taxol not so bad is that they often have it after Adriamycin, which is much more likely to cause nausea and extreme fatigue than Taxol. I had two or three days of flu-like aching after each Taxol treatment, but I thought it was easier that AC. When you get a combo drug like ACT, you can't always tell which symptom comes from which drug.
Your oncologist may have been technically correct in saying the chances of long-term damage from Taxol were low. However, when you multiply all the people who are surviving cancer long term these days because of Taxol, the number of peripheral neuropathy sufferers starts adding up. I still have it 13 years later. Because I had a cancer with a high chance of recurrence, I'm glad I took the Taxol. For someone with a low chance of recurrence, weighing the risk of long-term neuropathy ought to be a serious consideration.
I'm sorry that you are still having so many side effects from your treatment, but I'm glad you are still here five years later to write in with your experience. I'm sure it will help others who are weighing their decisions about treatment.
I actually had more difficulty with Taxol than I did with Adriamycin or Cytoxan. It made my joints ache horribly, caused numbness in my fingers, made my toenails fall off and the pain lasted long after I was done with treatment. It was very discouraging because, after I breezed through the AC... I thought it would be a piece of cake on Taxol.
It's been a year since I completed chemo, and the majority of the pain is gone. Morning's are rough, but once I'm out of bed and moving around I feel better and don't need any pain meds. Hang in there. It may take a while, but it shouldn't be permanent. My cousin also had trouble with Taxol. She is nine years cancer free but occastionally still has days where she hurts. But, all in all, we agree that my morning pain, and her occasional pain is a very small price to pay for being cancer free. Hopefully your symptoms will fade, as well.
Best of luck to you!
Teresa
Triple Negative, BRCA1 positive, two year survivor
Hi PJH,
Thanks for all this info. Late August 2011, my wife diagnosed right breast cancer (7cm). Our oncologist recommeded to start with TAC. She has completed 2 cycles of TAC but after each cycle (roughly 10 days after), she became neutropenic and got admitted in hospital for a week until her white blood cells came back to normal range. She is also having all kinds of side effects including nausia, vimittung, memory loss, joint pain, hair loss, metalic mouth etc.
Now Oncologist recommedning to to have 2 more cycles of AC followed by 2 cycles of T, then surgery and 6 weeks of radiation.
My question is that oncologist also recommeded to have surgery now and then continue with rest of chemo cycles but breast surgeon keep pushing for to complete the whole chemo before doing surgery.
What could be the reasons for breast surgeon to push for complete chemo?
Thanks for all the good stuff and keep up the good work.
Hi, Butler - I'm very sorry you and your wife are having to go through this ordeal...
The breast surgeon probably wants to wait on surgery until completion of chemo so that the tumor will potentially be as small as possible; although, if s/he's taking the whole breast (mastectomy), not sure what difference this would make. The oncologist may want to take out the tumor now (though it sounds like s/he's on the fence), to see how it's responding to the chemo; to see if it's shrunk (though they should be able to tell that via MRI), and perhaps for another, more complete pathology report.
Unfortunately, I'm not a doctor, and am just surmising. I'd suggest you schedule appointments with both the oncologist and surgeon, and ask them the same question you've asked here. Or see if they'll respond to email, since probably the last thing you want to do is schedule more doctors' appointments and make more trips to the hospital. You need to hear and understand the reasons behind each of their recommendations, so that you can help your wife make a good decision. Take care, and I hope things improve soon! PJH
Besides the reasons already mentioned, chemo is often given before surgery if the doctors are concerned that the cancer may have already left the breast. Chemo kills cancer cells every where, not just in the breast. As a person who had chemo before surgery, I can say that one of the greatest benefits is actually seeing it work. It's so comforting to know that this difficult procedure is paying off.
Knowing when to stop chemo and move on to surgery is a decision that your doctors are best equipped to decide. A consult appointment with doctors at a comprehensive cancer center can sometimes help break an impasse in situations like this.
Thank you so much for this information. I know they will be giving me benadryl
with my next treatments. Will the herceptin cause any side effects I need to know about? My first treatments with adriamyacin and Cytoxan (all these names!),
were rough. I ended up in the hospital twice, once for dehydration and once for a nearly packed bowel. I hope not to have grief like this again. Next is a mastectomy, and that has me so scared I can hardly think straight.
Susan, here are some links that may help you - Herceptin FAQS, and mastectomy: insider tips. As Phyllis mentions, many women find mastectomy not as tough as they imagined; personally, even with the reconstruction, I found it much easier than chemo... Best of luck to you, and please stay in touch here - we can help you through this. PJH
The latest protocol is immensely better at controlling the nausea once so common in Chemo. If you're having problems, speak up! Also, most protocols now include Neupogen or other WBC builders so breaks in therapy, due to low cell counts are far less common. You have to give the shots at home, daily 7-10 days per session but it's no big deal. Sensodyne toothpaste reduces the mouth sores common during AC. The pain and neuropathy (numbness, tingling) during Taxol therapy can be pretty significant but, again, can be dealt with if you talk to your doctor. The neuropathy, however, can last up to a year after treatment and is, occasionally permanent (still beats dying with breast cancer).
This is great information! My mom was just diagnosed with triple-negative BC and this will be her chemo regimen. We were told NOT to look on the internet for information but the paperwork the doctor sent home with her did not explain clearly what she can expect, and this website does, in plain language and with a caring attitude. Kudos to you for posting this and thank you, thank you, thank you!!!
This is great information! My mom was just diagnosed with triple-negative BC and this will be her chemo regimen. We were told NOT to look on the internet for information but the paperwork the doctor sent home with her did not explain clearly what she can expect, and this website does, in plain language and with a caring attitude. Kudos to you for posting this and thank you, thank you, thank you!!!
Perhaps your mom's doctor has had bad experiences with people finding inaccurate or unnecessarily frightening information on online. However, in my opinion, he does his patients a disservice by discouraging them from finding all the great information and tips for managing side effects that are available online. He is probaby aware that there are too many sites that prey on cancer patients trying to sell them products that are either worthless or harmful.
As you read this site, pay attention to whether a post is from one of the health guides or a reader. The health guides like me and PJ Hamel are not doctors. We are well-read breast cancer survivors who do our best to research any information we post. Our readers also can offer great tips, but keep in mind that their medical history will be different from your mother's, and their experiences may be different from your mother's. Also when you look at this site or any others online, pay attention to the date of a post. New information may have come out since an article was posted. Ultimately, her doctor is the one who will have the best information about her particular case. I hope your mother's treatment goes well. Let us know about questions you have as she goes through treatment.
Thanks, Phyllis. Mom has the same name, so we must be in good hands here. 
We come from a medical family so we are already a little ahead of the game and know only to trust information that comes from reputable sources. While we are interested in C&A (complementary & alternative) medicine, we are not buying into any hype and are carefully vetting every C&A option through both oncologist and surgeon for continuity of care and safety.
One question we cannot seem to find answers about is nutrition. What foods are unsafe or questionable during AC-T therapy? We're sushi lovers; is that off limits?
Really appreciate the support and advice. This is a scary time and we're doing our best to get and stay informed.
Hi - Coincidentally, we recently published a post about certain supplements interacting with chemo. Black cohosh and vitamin C were the only two I was able to identify that interact negatively with the regimen your mom will be on; but honestly, her doctor would be able to give you more specifics than we can here. My only question with sushi would probably be the fresh fish; it's imperative that she avoid bacteria of all kinds, due to her lowered resistance to infection. Perhaps vegetable sushi would be a better choice for the duration of her treatment? Best of luck to both of you. It's a tough road, but lots of us have been down it - you'll do this together, and life will go on. Be well - PJH
Your mom's immune system will be lowered, so fresh fruits and vegetables need to be carefully washed. I would think raw fish would be risky, but why don't you ask her doctor? The point is to avoid possible sources of contamination. If her blood counts go really low, the doctor may want her to avoid any raw foods.
As far as other foods, she can have what she likes, but she will probably find that she prefers simple, easy-to-digest foods. Her digestive system will probably be more sensitive to spicy, rich foods. It is hard to predict. Everyone is different. Don't take any supplements without running them by the doctor. He may not want her to have any supplements rich in estrogen or high in anti-oxidants. A supplement that builds up the rest of your cells might also be strengthening the cancer cells. Her doctor, who has your mother's most recent blood work and her entire medical history in front of him, is the best person to advise on what is safe for her.
Thank you both. We hadn't been told to wash fresh foods carefully by the oncologist, so I will see if I can find a product that is safe to use. I think she's committed to foregoing the sushi (at least the raw stuff) for the duration.
She started chemo this week (the A/C portion) and so far is doing very well. The new anti-nausea medications really seem to work! We're staying positive and trying to keep our sense of humor.
I don't know that chemo patients need to take more precautions than everyone OUGHT to always take. The problem is that a sanitary shortcut that wouldn't cause problems for someone with a strong immune system could be problematic for someone with a compromised immune system. I am glad the anti-nausea meds are working.
Well, we had our first trip to the hospital for neutropenia this weekend. Mom neutrophils were at 126 and she had an infection. She's okay, home now, but all those warnings about raw food and disinfecting things are finally sinking in. I hope this will be the first and only visit for her.
We may be switching oncologists. I'm not happy with the way her current doctor is managing (or rather, not managing) her care. He told her via telephone that he expected her to end up in the hospital after her first chemo. It would have been nice if he had told us, or suggested ways to prevent it. I almost lost her this weekend.
I'd love some suggestions on how to be a good caregiver. I'm finding this incredibly stressful and I'm terrified I will not be able to keep her safe. Thanks.
Totally understandable, your stress level. You're literally trying to deal with a life-or-death situation. And now's the time, before things go too far, to ask for a different oncologist. The social workers at your hoospital can help you select someone you think would be a better fit, and then to make the change. Many of us switch doctors; it's a long-term relationship, and you HAVE to have confidence and feel comfortable with the care you're getting, how it's managed, and communication between parties.
Neutropenia is quite common, unfortunately; I had it myself. Is she getting a shot of Neupogen (or Neulasta) after her chemo, to help keep her white cells up? It's important she stay away from sick people, obviously; which means staying out of crowds, and away from family members who might be sick - and unfortunately, away from kids, since they're out and about so much, and are exposed to so many germs. I wonder why her oncologist expected her to end up in the hospital - did (s)he say? Neutropenia, or simply a bad reaction to chemo? Sounds odd.
Anyway, do your best each day, go to bed, and do your best again the next day. Try not to look too far ahead, nor to second-guess yourself. I'm sure you'll do all that's humanly possible to keep your mom safe; the hard part is knowing what to do, exactly, isn't it? The oncology and chemo nurses are actually a great source of info., oftentimes better than the oncologist themselves, as they're usually better commuicators. See if you can strike up a relationship with one or more of them; they're a valuable resource. Good luck - I hope the next treatment goes better. PJH
Caregivers have three major roles in my opinion.
1. Be a good listener. Listen to your mom and her desires and fears. Be an extra set of ears at medical appointments, perhaps taking notes.
2. Help as needed with physical issues, such as driving to appointments, helping with meals, and so forth.
3. Empower the patient as much as possible to make her own decisions and to live independently. Cancer often leaves a person feeling powerless, so allowing the patient to retain as much control as possible is important.
Most caretakers are not equally good at all three of the above, so it is important to enlist help from as many resources as possible. Getting help is also important because caretakers need to take care of themselves so that they don't exhaust themselves leaving themselves useless.
I'm sorry that your mom had an infection this time around. I think I ran a fever two or three times out of 8 chemo treatments, so infections are not inevitable. Just keep on doing the best you can. You can get through this.
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