Taxol and Herceptin only for stage 1 HER 2 positive?
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curious,
Well I'm in my chair out in California right now!
Just finished #8!
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Suladog, what's your worst side effect? - if you don't mind sharing, of course.
I've done 3 Taxols so far and I'm getting a little burning in hands and feet making me think neuropathy, but it mostly goes away after a few days. Also, this latest infusion made me very achy and tired for three days now
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ha! The worst for me is diarrhea.I am pooping like a coot as my dad would say. The next worst is tr achy fluey feeling which of course gives me no appetite not that is sort of off and on and is not that big an issue.
Let's just say I don't leave home without carrying Imodium. Are you taking L-glutamine??? I've heard people here say that one should keep taking it for a month or so after you are done with taxol to insure no further problems
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Yes, I'm drinking L-Glutamine powder and taking vitamin B6.
After first infusion I was constipated, after the 2nd I had the runs, and now it's trying to stabilize, I hope, but I am taking a probiotic
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Ok - 1 day after 1st infusion and I feel good except for this wicked heartburn. Has anyone had this and what did you do? My husband tells me to take Zantac, but I'm not so sure.0
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Curious - I think it's fine to take Zantac, or anything similar. I take prescription Omeprazole which is for heartburn, and when I told my MO he said "good". Even taking the prescription every day I sometimes got heartburn during treatment, and I would take an extra Pepcid.
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Curious: I will suggest to take some crackers for heartburn first. I eat every 2~3 hours with small bland meals, try to avoid spicy/greasy food
I just finished #5 today. It is my first time to use my port, it works pretty well.
I did have some burning sensation in my palms after infusion#4, more like you touch snow and feel a little bit buring/numb, hope that it will go away. I play piano for my church, I do wish that I can duck neuropathy.
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I was eating dinner a couple of hours ago and realized nothing tastes how it should. My taste buds are all messed up. That's a new one for me.
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BB...I couldnt hardly eat anything hot. Only cold food tasted decent. and red wine, which I had always loved (and love) was like acid or vinegar. I tasted awful to me.
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Fluffqueen, I hope that the taste change is just temporary, isn't it
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my MO told me to over the counter Prilosec no more heartburn so I can say that worked for me... Now if something would work for this damn diarrhea. I'm living on immodiu
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BB, after 8 wkly T/H my taste buds are basically screwed up. Olive oil tastes like battery acid, other foods just don't seem right and I am a foodie so this is the not fun part, but I gather there's nothing to be done about it.
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My 71 year old mom just finished infusion 4. She has had the same SE as I have read on this wonderful thread mainly diarrhea and extreme tiredness. I took her to the shop this morning and had her hair buzzed. She had full, thick hair, so this is a big change. We had already purchased a wig and was able to wear that home. I am now trying to find some scarves, hats as the wig is pretty uncomfortable for her. Any good websites that you have found for accessories? I have learned so much from all of you and I wish all of you beautiful ladies the best!
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I'm new to this site. I tried to post a comment, but I think it got lost.
I had breast cancer in 2000, had a mastectomy, underwent 18 weeks of Taxol and Herceptin (the Herceptin was for a clinical trial.) I did not have a HER2-+ tumor. I believe I was cured. But a year ago, i was diagnosed with a new tumor in the remaining breast. This one was HER2 positive. So, i had another mastectomy and two different kinds of chemo (A/C and Taxol). When the Taxol started, i also started getting Herceptin. The chemo was done in September but I will need to keep getting Herceptin until this June 2015.
In 2000, i had gained over 30 pounds on the chemo/Herceptin and it seemed to come off pretty quickly when all the drugs were finally out of my system. This time, I gained ten pounds. I have most of it in my midsection. It is very frustrating. But I read other blogs which said this is normal. Side effects of the Herceptin have otherwise been minimal -- most all within 48 hours of the tri-weekly infusion: body aches, tiredness, some diarrhea, and a feeling of being very out of it. Plus, last time i had nausea during the infusion.
I want to lose this weight, but alas, I am also older (65), so I'm dealing with a slower metabolism. Last year I planned on losing 10 pounds, but instead i gained 10 pounds, so do the math -- now I need to lose 20.
Anybody else have problems with weight gain during chemo/Herceptin? And did it come off after you were done with treatment? I won't be going on Tamoxifen, so I should be drug-free in June!
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Hi kathy9999 (waving from the other side of the river). Yes, I unfortunately gained weight during taxol/Herceptin, and have had a hard time getting rid of it. I was 60 at diagnosis; now 63. Mine is mostly in my mid-section as well. I did start tamoxifen, but quit after a few months (at my MO's suggestion) because my ER+ percentage is low (26% with "weak staining") and the doc thinks tamoxifen doesn't do much for low ER+ tumors anyway. Once I stopped tamoxifen, I dropped about 10 pounds without even trying. However, I'm still about 5 pounds over what I weighed before all this, and I needed to lose weight then. I've been going to the gym 5 - 6 times a week (just moderate exercise) to supposedly get my metabolism going, but it's not helping. My eating habits are not good, and if I could just cut down on the empty carbs I'm sure I'd lose weight. But - I'm addicted to carbs!
As for the Herceptin body aches and tiredness - if you're getting your infusion over 30 minutes, ask them to do it over 90 minutes, or at least 60 minutes. Many people say their Herceptin side effects went away when the infusion was given over a longer period of time. I had them run mine for an hour and never had any problems.
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Hi Everyone,
I am now 4 days out from my very first infusion. I feel fine except for some digestive issues.
My treatment day was Thursday. Friday, I had wicked heartburn, which calmed down by the evening. I ate crackers as Colleen suggested and then kept eating some every hour and that seemed to help.
Saturday began my digestive issues which included slight diarreah, which got better after I took two Immodium pills. Sunday was great. Today, my digestive issues are back. So, I have to adjust my diet and figure out what I cannot eat while on Taxol.
Ladies - When did you start losing your hair? My husband wants to take me to go shave our heads before it falls out.
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Mine started to shed at about 14 days. I never did shave it and in general I am glad. I had enough hair to get around for about 8 weeks. Then I went to a wig. I did not lose my eybrows or eyelashes during treatment.
However. Two weeks after I finished chemo, boom,,,,eyelashes gone, eyebrows gone, and most of the rest of the hair came out. But new stuff was already coming in.
I thought I looked like Beetlejuice, lol
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I was going to ask about the hair, too. I am on day 15 and it's starting to go. I think I would prefer to shave it all before it starts falling out in earnest but I'm worried about doing it prematurely and then ending up one of the lucky ones who wouldn't have lost it all anyway.
I've had 3 treatments so far and besides bad tiredness for about a 36 hr period in days 3-4, I am doing pretty well. My digestive system is all out of whack but not bad enough to take Immodium yet.
I do have weird heartburn pains, concentrated it seems on my right side. It was freaking me out so much my MO let me get a scan of my liver just to be sure there is no cancer there, but it's clean. So I'm guessing whatever is going on in there is related to my digestive issues.
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Finished my 2nd treatment on Thursday. Digestive issues are ok at the moment. I did get that heartburn pain again a day after the infusion. Ate crackers and took some Gaviscon.
I had a rash on my knuckles and most of the hands. That calmed down and eventually disappeared after I put coconut oil on them.
I have zits all over my upper chest, upper back and neck. Has anyone had the zits? What did you do to help with that?
Like you Molly, I have decided to wait for some of my hair to fall out and see how I look. I keep hearing that I may not lose it all. I have my wig ready though.0 -
CuriounsCarm, I got the worst acne of my life after the 2nd treatment, on my face though. My chemo is on Tuesdays, and on Wednesday evenings the zits start coming out. By next treatment they are mostly gone. My husband, a doctor, thinks it is caused by steroids and my oncologist agrees.
I'm done with my 4th round now and this time there were far fewer zits than the first time, so I'm hoping my body is adjusting and it will stop happening
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Hi BB - I thought it was the steroids as well. Thanks for confirming. Hopefully mine calm down like yours did.
I also forgot to mention in my earlier post that I also have this itchiness around certain areas of my body, such as hair, legs, etc. I assume that's Taxol and not much can be done about it.
The mouth dryness was a bit bothersome, but has improved after I started taking Biotin. That helped a lot.
Do they start to drop the pre-meds as you go along? Or do they keep giving pre-meds for all 12 weeks?0 -
I only experience itchiness on my scalp, but I think this is because I'm trying to save my hair by using cold caps, and I'm only allowed to wash my hair 1-2 times per week.
I don't have issues with mouth dryness, but my taste buds have gone crazy. Food doesn't taste like it should, and I have this horrible taste in my mouth most of the time. It started happening after the 3rd treatment for me - my treatment is Tuesday, and I hated my dinner on Friday, but Saturday night it seemed better. After the 4th treatment the taste issues appeared on Thursday already and my breakfast right now has not much taste. I'm supposed to go out to nice dinner tonight and I'm afraid it will be wasted on me.
As far as the premeds, I don't remember being told that they would be dropping them, so I was assuming they would keep giving them to me.
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I just finished infusion#6. I also keep my hair and want to see how far I can go, now I have only a thin layer barely covering my head.
They lower my steroid from 10mg to 4 mg at infusion#2, and drop other premed at infusion#3, maybe it is the reason I don't get too much SE from steroid.
My finger tips are sensitive to hot water, also the toothpaste is too "spicy" for me, maybe I need to get a mild flavor toothpaste. Other than that I am doing fine.
Good luck to everyone!
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Hi Everyone,
I am sitting here and waiting for my third infusion. I have been approved for treatment today. My blood work was all good except for one of the liver enzymes which was slightly higher. They said not to worry, but of course I worry. I fixate on bad news.
Has anyone made it through all 12 treatments with perfect blood work or is it impossible when taking chemo? Is it expected that something might be off at any one time during treatment? Has anyone had elevated liver enzyme during treatment?
Curious
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Carm, one of my liver enzymes was just a bit high before I even started chemo, like I think the normal range stopped at 45 and mine was 47. I worried like a crazy person about that for two weeks until at my next appointment my doctor said, "your liver values are all normal," and I said, "one of them was high!" and he said, "no, I promise you're fine." I think we are all different and there is some natural variance that occurs. As long as they aren't worried about it, I try not to be worried about it.
My mom told me she went through a barrage of tests years back because her doctor told her something was seriously wrong with her white blood count, but she has always been healthy and it has always been low her whole life. Finally she just switched doctors to put an end to the whole thing. She has still never been sick.
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curiouscarm,
I'm off to chemo tomorrow, after that I've only got two left of my 12 weeks so far I've had no issues keeping me from getting chemo, I'm slightly anemic but after taking slow release iron at my mos suggestion that seems to have improved. So, so far so good, I can't wait to be done
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Molly - I will try not to worry. Since your liver enzymes were slightly higher prior to chemo, have they gone up a bit more or just staying where they are?
Suladog - wow. I wish I was at 10 already. It seems like another 9 sessions is going to take forever.0 -
Hi! So glad I found this. Not many doing Taxol + Herceptin for 12 weeks. Then Herceptin for 9 months for Early Stage Node negative cancer. Tomorrow is treatment #4. I actually had a wierd problem with Decadron. I felt enormous pressure in my head for 3 days after first 2 treatmenents. Like scuba diving. Or the worse Sinus Congestion on earth. Horrible. Then it would get better just all of a sudden by day 4. We figured out it was probably Decadron causing the sensation when I was trying to describe the sensation to the nurse and she put a bag up there and the feeling came back almost immediately. I said that's it. That is the feeling. But apparently doing treatment without a steroid is a no. They switched my steroid during treatment #3 and I take more Benadryl after to help with symptomsI am puffing in my cheeks and getting some acne. If I get moon face that will stink. I hope they can reduce the steroid. A little fatigue has kicked in. But it's predictable. I have started to shed a bit. Most comes off in shower but I joked that I feel like a dandelion. I hope this 4th treatment is the pretreatment winner time!
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I have had 9 out of 12 abraxane tx's and am having neuropathy side effects that are worsening however they still are mild tingling in my hands and feet. My MD talked about possibly taking an extra week off ( I normally do 3 on and one off with the abraxane). I really don't want to prolong my treatment but do not want to end up with neuropathy permanently. Is there anyone else experiencing neuropathy and what does your oncologist recommend? I do take glutamine 15 g x 2 daily and vitamin B6. I am so excited to be near the end but now with this a little concerned.
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hgallant, sounds like you're doing the right things with glutamine and B6. I had mild tingling during taxol, but ended up with a numb big toe that came on about 3 weeks after finishing taxol. (My chemo nurse had suggested continuing the glutamine and B6 for a few weeks after finishing chemo, but I ran out of glutamine and didn't buy any more.) Very annoying. It eventually got better, but came back with a vengeance after I spent a day walking the Mall of America. A couple months ago I started taking acetyl l-carnitine for a different reason, and the numbness is now gone. I believe acetyl l-carnitine is sometimes used for diabetic neuropathy. There have been some differing results on using it during chemo, so I would research it and discuss with your MO before trying it. However, if you're still having tingling issues after chemo it might be worth a try. My doc says it's safe to take.
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