Long Term Taxol

I am so bummed out.
Today was my 11th week of Taxol (108 mg) + Herceptin (144mg). I get Zometta once a month. I thought that we were only doing 12 weeks of Taxol so I was excited about being almost finished.

Next week I will have a Pet Scan, Bone Scan, Brain MRI and MuggaScan. My doctor stopped by and said that if the tests show good results she wants to keep me on the Taxol! (She didn't say for how long -- indefinitely?!) She says that she doesn't want to stop the "momentum"...

I want to see good test results too, but I'm not happy about staying on the taxol. My hands and feet tingle all the time and sometimes sting. My nose bleeds. I'm always tired. Last week I had a urinary infection and I've had a dry cough for about 4 weeks that won't go away. I'm very tired all the time. I feel like my immune system is compromised by the Taxol and would like to feel somewhat good again. (oh, and I would like to grow hair on my head again).

Has anyone else here had experience with long term Taxol use? Is it worth it? Thank you. Beth

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I should add that this is first time I have had chemo. I had Stage 1 breast cancer in 2007 - a small tumor (<1cm) and some DCIS. Oncotype test put me in low risk for re-occurence, Mastectomy of right breast. I was on Femara then for 2 1/2 years. Last August my right hip started hurting. MRI and Pet Scan showed multiple lesions in my pelvis and on my skull, 2 fractures in right hip. In October I started weekly Herceptin and Taxol was added in November.

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Hi
I am in a similar position .I have just finished 12 weeks and I thni k that they are going to give me another 12.I looked at my CT results and my liver damage has halved.I have been in and out of hospital long enough to know that the one thing worse than being told that they are going to fill you up with horriable drugs is that they will not give you the drugs.We will not feel better if we stop treatment because it will just give the cancer room to manover.
I asked a nurse what was the longest people had stayed on taxol and she said the longest she had seen was 9 months -so it will not be forever.
I have a guiness everynight for iron and when i can be bothered lots of green vegtables.
good luck

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thanks, badfairy. It's nice to know that others are in the same boat I am :-) ... would you happen to remember the weekly dosage of Taxol that you get? I know that this is based on weight - I'm getting 108 mg. My brother-in-law (who is a primary care physician) suggested that ask that the dosage be lowered to 80% to see if that would help with some of my side effects. Also, I know this is trivial, but did you lose your hair?

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I am just starting with surgery in two days and I will be doing the year treatment plus - aggressive her2new - so I wish I could be more help... All I can say is it's kinda like being pregnant - morning sickness then just plain full and tired. That had a time frame - so does this........... Do whatever you can to be patient and get through it - find an avenue of distraction and forget the clock..... Good luck - prayers are with you.

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So, bad news is I was on Taxotere (another taxane drug) and Herceptin once a month for 2 years. That's 24 cycles. When all evidence suggested I was stable (6 months NED) I asked my onc if I could stop. He said if he had his way I would never stop (he was kind of joking -sarcasm, that's how we roll). We weighed pros and cons and I chose to stop Taxotere but keep Herceptin. It was a relief to be off of it! My hair grew back, more energy, less sickness.
It has now been 4 years since I stopped Taxotere, and despite a couple of setbacks with brain mets I am comfortable with my decision. What I am trying to say, with my own story, is that you can be on Taxol for quite a long time, but you might reach a point where you decide it just needs to end. A good oncologist will understand and support you.

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I was a bit different to you, I did abraxane, herceptin and zometa for 18 months, during this time I had 2 mini breaks of a couple of weeks (my hair started growing back only to fall out again, just fuzz or 5 o'clock shadow lol) My markers returned to the normal range after 6 months but we continued on until the side effects became too much, my immune system was shot and I was catching everything along with tiredness and teariness. I have been on herceptin and zometa (just switched to xgeva) for 14 months now and appear to be ok..knock on wood etc. Can you have a mini break as a reward for good results :)

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I could Have written your post. My doc's just done thé same to me!!!!
But it is working, so try and cheer up. X Jani

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As a MBC 'metavivor', the chemo is all that stands in the way of cancer proliferation. When your markers are up,.........or...MBC is in an organ/bone marrow, the lower weekly doses cause less SE's. As long as there are mets that are being controlled by chemo, the chemo will NOT end. However, your onco might agree with a chemo break. First, you need your scan to see how well the Taxol is working. The taxol, hypothetically, is what keeps the MBC from spreading further.

This is your new 'normal'. I know that living on chemo (ongoing).is a challenge. It takes endurance, beyond belief...............and you've just started.

I, myself, have been on chemo for 11 1/2 years. It is the metavivors way of life. I am sorry that you didn't have this info beforehand. Please be kind to yourself. It's fantastic to just keep it stable.......................If you've no evidence of disease (NED), your onco may change the plan,....................That all depends on your scan. I hope the Taxol does get you to NED............That's what all of us hope for.
Take care.
Anita

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Generally speaking, you stay on a chemo till it stops working (very upsetting to put up with this crap and not have it work) or has unbearable side effects. If your neuropathy is bad, that's one reason why some people move on. Also, ask your onc about Abraxane. It too is a taxane but you don't have to take steroids, which is a big plus. There are also things you can do to try and get your health back with nutrition and supplements. I think having a nutritionist at this point would really help you feel better. But yes. Chemo for life is downright awful to contemplate, though not all of them are as exhausting as Taxol. I'm so sorry you're having a hard time with it. Stay up on the neuropathy--it can get rough and it sounds like you're struggling with it. I'm so sorry.

PS: Your onc should have you on large doses of L Glutamine and B vitamins for the neuropathy. Fish oil is also a helpful supplement. Ask for Gabapentin, which can calm the pain from it, not with everyone but I do hope it will help. It's a mild sedative too, so can help you sleep. But if it keeps getting bad, then your quality of life issues may dictate a switch to something else. After all, if you're so miserable you can't live your life (obviously we're all facing reduced expectations but still...), then why do it?

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Hi
I am sorry i dont know what my dosage is but i have heard of other people reducing their dose if the side effects are to rough.It sounds like a good idea.I had also heared that b vit were good for neuropathy and I try and keep up my iron with green veg and flordix
I know that it is hard to loose your hair(this is my third time in 10 years-I have an impressive collection of hats) When i was on FEC i lost all my hair-every where.This time it is just on my head and i dont know if it is just wishful thinking but i think it might be growing back-just fluff at the moment.
I should add that i am aso on a trial and i got my ct results yesterday-bones are stable and liver mets have halved so i am definately planning to take the next rounds.
good luck

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Will I ever have hair again??!!

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And since I am taking Herceptin along with the Taxol, how would I know if it were not the Herceptin that is keeping things at bay and not the Taxol?? Anyway, I am taking L-glutamine and B vitamins and fish oil for the neuropathy, and it seems to help some. I actually found that information on the internet and not from my doctor or any of the nurses at the cancer center where I go. In fact, they didn't know anything about it and said that they would pass the information along.

I guess I'm just not yet conformed to the idea of pouring poisons into my body every week. I have always been somewhat of a health nut - very conscious of nutrition and exercise, staying away from "medicine" as much as possible. I do yoga every day and am anxious to begin swimming laps again, but it seems like every time I turn around I have some kind of "infection" while on this Taxol. The fatigue is depressing me. I'm trying to find a way to get my life - or some sort of "healthy" life back where I can feel somewhat "good".

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Seriously, ask about Abraxane at a low dose. Or at least reducing the Taxol dose some. I found Abraxane to be far less toxic (felt that way anyway) and you might feel a lot better on it. And you do have a point about the Herceptin. So you've been getting lots of infections? That's tough too. I want to swim also, but can't bring myself to go to the gym when flu season is making people drop like flies. If you did go off it, for even a short time, at least you'd have the Herceptin protecting you. And you're right--the way things are now there's no way to know what's working. Go get a 2nd opinion. And talk to your doctors again about finding a quality of life balance with this stuff.

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I did Abraxane weekly for seven months, and while the side effects were less severe than Taxatere every three weeks that I'm now on, I found that taking it weekly was tough. I would be at the doc one day, have three days down, then have only three good days before starting the cycle again. So I like the three week cycle better, but we had to reduce the dosage of Taxatere because of pretty extreme diarrhea and other side effects. So now I'm waiting to see if the lower dose of Tx is working or not. I did get a three month break between chemos; however, my pain increased considerably and my TM's starting climbing. So for me, taking a break was not as good as I hoped.

Each person has to come to their own terms and balance of treatment versus the potential for the cancer to grow. You will get there and know what you want to do.

BTW, my hair is on it's 4th life. I've gone bald 4 times and it does seem to come back each time :)

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I did not know if Herceptin alone would keep cancer at bay. I armed myself with as much info and advice as possible and came off of Taxotere. It was a roll of the dice, and it paid off. Others have not been so "lucky". As others have said, it comes down to quality of life, and what matters most. Re: Hair...hair on my head came back, but I have very few eyebrow hairs, and no nose hair. It's odd.

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Thank you all for your wonderful support, experience and advice. I guess I just haven't yet wrapped my head around this disease, and the unending "treatments". Next week I'll get my pet scan, bone scan, and brain mri. I never ever suspected that I would suddenly be hit with such a terrible disease, and I'm still in many ways in denial.

On a lighter note. I did get a new wig today - a sort of half wig with just bangs and a ponytail that you wear with a baseball cap. It's kind of cool, even though I don't want to have to wear wigs the rest of my life!

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I was on taxol/avastin and study drug for 9 months (3 weeks on one week off). I responded very well but eventually had progression. The nuropathy became painful, I had nose bleeds, dry scratchy throat, but it was tolerable. Once doses were reduced then it became less effective. I also had extreme fatigue towards the end.

I have my hair. I did the cold caps. It was so worth it for me. One of my inspire friends also was on taxol , used the cold caps and she has her hair as well. I can walk you through it if you ever decide to do it. ;)

I think staying in denial isn't all that bad. ;) Hang tight gal -- they say this is a marathon. there is so much good info on here...try to walk if you can and lots of water.

Ann

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