Weekly Taxol group
Comments
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JenRuns good luck on your first treatment on tuesday, I did not use anything with my first treatment and did get alot of joint pain after that I did try taking a clariton a day and it seems to help.
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MsRobin - my list of food I like is not that long now and I don't have much weight to give away and I'm hoping taxol will give me more days on the appetite, for AC 8 out of 14 days are no appetite days, it gets pretty depressing
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ok so had my DD taxol on Friday, now day three aches and pains from waist down. very uncomfortable. Tylenol 3's help but only last 4 hours so cant take too many.
had a couple of baths last night which helped while in tub. also tried Lakota which didn't help. What have others done? how long will this last?
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tpralph - OMG dense dose is not the way to go sounds like. Even Tylenol 3 only last 4 hours how long should it last
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Paulette Tylenol 3 really only lasts 4-6 hours. So I took another bath and then 2 Tylenol extra strength to get me through until supper when I'll take another couple of t-3s. Just wondering how many days this is going to happen for.
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Paulette I think you will find eating a bit easier with Taxol vs AC, and I've done both. The nausea of AC made every food and drink suspect, even water. Like ou, I found it very depressing. I actually get hungry on Taxol, but my taste buds are so messed up that few things actually taste worth eating. I eat enough to stop the hunger, often giving up halfway through. For me, meats and vegetables are fairly tasty, while carbs are generally too bland to bother with. Sweets are absolutely out of the question, even fruit can be overly sweet. But I try to eat fruit anyway. When I say that sweets taste bad, I mean even the tiniest amount, which eliminates a LOT of foods. Is your MO watching out for your weight loss? If your AC is over or nearly so, you'll probably taper off on weight loss.
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For those who completed Taxol some time ago, but happen to check in, a question. I'm six months out from my last Taxol, but find when I do any task that makes me feel warm (doing dishes, vacuuming or tidying the yard after pooch potty time) I get a sensation that I can best describe as prickly heat. It's like little tiny pinpricks on my skin. Anyone else?
Best of luck to those still in treatment. I personally found Taxol much easier to tolerate then AC; however, I have neuropathy in my dominant hand and both feet that is problematic and may be permanent.
Lyn
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MsRobin - during AC my taste buds got better on day 10 so I have 5 good days to eat my heart out. I found everything are too salty for my taste, just hard to find anything I like. So I lost about 5-6 lbs during my AC. That isn't bad at all. I finished my AC will be starting my taxol this coming Friday.
vLH - can I ask you couple quiet ions? During taxol did you take B6 and B 12 ? Did you do any icing ?
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I just had Taxol and Herciptin, not AC but reading other posts, I do believe that taxol is "chemo light." Does that mean there are no SE - NO! I lost hair everywhere and it came back faster in places that I really didn't want it. Also had significant eye changes. Worse for me however, was very painful neuropathy. I finally quit after 8 treatments I was in so much pain. It stopped fairly quickly after I finished treatment though. My weight was fairly stable although I definitely could see the steroid bloat. I drove myself to treatment although I didn't have far to go. Some people get really sleepy from the benadryl that is usually given as part of the "pre cocktail."
Noah, good for you for trying to support your Mom. Good advise above - hydration and exercise does seem to help the fatigue. I hope you can get her on to this site too as she could get some support. Is she in a community that would have support groups? Bosum Buddies is the most organized but her doctor or nurse navigator may be able to help her find one. My doctor gave me a whole list. The daughter of a friend of mine organized help from her mother's friends by email. If you know some of them, ask for a meal or a ride or to run errands. I'm guessing that if you look more on this site, you ill find a thread for family members. They may be able to give you more specific suggestions.
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Taco - ONC said neuropathy from mild taxol is temporary and he said once the pains starts he will lower the dosage. I really don't want permanent damage
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Paulette, I took B6, but the doctor didn't suggest B12. Many oncologists suggest both so I'm not sure why she doesn't.
I didn't ice. My oncologist said that she used to have everyone in the practice ice; however, she didn't see a pattern of success so no longer recommended it. She allowed patients to ice if they wished. In reviewing past threads, I saw women who iced still develop neuropathy or nail damage and some who didn't ice have no issues so it really seems to be the luck of the draw. I'm sorry I don't have any well-supported advice to offer.
Lyn
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Question for those on the weekly Taxol Treatments. Has anyone had their treatments cut short? I have completed 5 of 12 but am experiencing neuropathy (numbness, tingling in hands and feet) and pains in my legs. My doctor decreased the dose in treatment No. 5, but also mentioned the possibility of not doing all 12 treatments. He wants to avoid permanent damage. I will still have radiation.
I am stage 2 - very small tumor and had 2 lymphnodes of 4 removed test positive. Wondering if anyone quit the treatments early? He did not seem concerned. I had four bi-weekly treatments of AC (which was horrible, but I till managed to work)Thoughts? Experiences??
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msrobin58, I am only doing Taxol so nothing to compare it to, but B6 is good for neuropathy. I am gaining weight too, but it is mostly of cortisone pre-med that makes me hungry. I went down a lot after diagnosis because I simply stopped eating due to the stress and uncertainty of what I can eat now when I got bc. I have started to eat meet now because the body would need protein to rebuild the cells. I had my fourth infusion yesterday and I feel I could eat a horse. Try Rebecca Katz Magic Mineral Broth. It is a big batch that you can freeze in and then just make a soup with either chicken or noodles, it is both a meal and a fluid, very easy on the stomach.
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PattiAD, sorry about your neuropathy, I had so far 4 treatments but have only experienced it a couple of times, once in my finger and a once in my foot, my oncologist said it was to early to do something, otherwise they add B6 to the pre-meds. I know that people on Taxotere got their treatments cut to 4 instead of six due to the various issues, i red it on TP thread and it was back in 2011. Cherry
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Patti, this is my concern too. My MO said if the SEs become too much, I can skip a week or even stop. My concern is at what point is there enough benefit that it's safe to stop. I'll be getting herceptin for a full year but that does something different than the taxol.
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Patti - you asked a good question I'm on the 12 weeks taxol program, I would ask myself do I want permanent neuropathy, my answer will be NO. However the nurse told me it's temporary did she tell me the truth
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Paulette, it may be temporary, but that's not always the case. The problem is that no one knows in advance which way it will go.
It's difficult to balance the risk of permanent neuropathy vs. how the taxol might impact your cancer. One wonders how researchers decided on 12 sessions initially. I've not seen where they tracked the success rate of, say, 6 or 8 sessions. We've seen that for many node negative patients, 3 weeks of radiation be effective versus the traditional 6 weeks of treatment. Might fewer sessions be similarly successful for Taxol? I have no idea. Has anyone else seen that question addressed?
I had neuropathy symptoms in my dominant hand from the second session so would have had minimal cancer- fighting benefit had I stopped as soon as the symptoms initially appeared. I completed 11 of the 12 recommended sessions. Knock on wood, I've seen improvement in my neuropathy symptoms in recent weeks. I wish there were easy answers to this difficult question. I hope that you'll speak with your oncologist about your concerns and that others can provide input based on their experience.
Lyn
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tpralph, I started DD Taxol Monday. It's hard to find very many who've done DD. Rebamacfan123 did and I hate to recommend her posts only because her pain was quite severe and it might not be what you need to read right now. However she gives loads of info on how she managed it. She is quite a trooper and finished all the regimen without any delays or decreases in dosage, so that's actually motivating. Use the search to find her posts.
So far so good, but only day three for me. I think it should hit tomorrow
How are you feeling today
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Teese- you are on DD taxol? Does it mean dense dose?? How many infusion are you doing
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Paulette, I have 4 doses, one every 2 weeks. I love that it's shorter but I can't lie the worry is the neuropathy, however my MO said that we'll switch to standard schedule if it occurs and so I expect to do DD at least to second dose in 12 days which will put me at the halfway mark. Then I'd only have to do 6 more weekly.
No signs of it yet, but the week is young.
I just could not commit to the 12 weeks, it overwhelmed me. Plus my MO said myelosuppression is just as likely to delay things on the standard schedule and neuropathy still occurs frquently with standard. So I made the best choice I could. I do think that thAT muscle and joint pain may be more intense, however for whatever reason I have been blessed with a very high pain threshold all my life, so that didn't play into my decision.
Theresa
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Teese - I agreed 12 weeks seem to be so long I committed on 12 weeks and I hope for the best. Keep you in my prayers. Keep it up girl!! 🙏🙏🙏
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Paulette, yup we just keep on keeping on. However it so much easier on this side of AC. I just feel so much lighter and happier with the end point in sight. As soon as AC was over I noticed the tears that would start over every little thing went away. Good grief they were driving me nuts.
Theresa
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HI Everybody,
I just got my Treatment Schedule and Cocktail today. Looks like I am starting with 4 Rounds of the A/C then 12 weeks of the Taxol..
It's overwhelming for me to think this will take me into January 2018. I'm pretty nervous imagining the worst for me.. I would rather that I was actually going through this so I can deal with the actual side effects.
Would love any of you words of encouragement. And any thoughts on what to expect my first treatment on the 27th.
Thank you,
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Tina - one day at a time, if you have question you can ask. You can fine the September threat
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Tina -it is overwhelming, and once you start the anxiety does lessen.
First treatment for me was, of course unnerving. But the nurses are wonderful, and they know just how you feel. It was done and over and I was on my way home thinking this is doable. They usually have a chemo class or you'll meet one on one with your Dr's nurse to go over everything to know about side effects etc. so your very prepared. But honestly I got so much info from this site. I started reading the previous two months threads. For me it was the May and June chemo threads. That's where I got a real feel for when different SE would occur and great advice on handling them or how long they persist.
I brought a packed lunch for the first one and a soft sided insulated bag with bottled drinks. I didn't really do lunch again after that, just snacks like peanut butter crackers or a granola bar. My own preference, you'll see what works. I bring a book and play words with friends, I slept this last infusion because they added Benedryl to the cocktail with Taxol.
I hope this helps, ask away.
Theresa
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Hello to all of you ladies! I've been reading this page for 2 weeks now but haven't posted. I finished my 4 rounds of AC and tomorrow I begin my 12 weeks of Taxol. Very nervous. I was prescribed a steroid to take today, MO said if I didn't take it the day before chemo it would be cancelled. I'm guessing that was in case I would have an allergic reaction.
I did lose my eyelashes completely. Eyebrows very thin now. They fell out after last AC.
Tina...I agree with Paulette and Teese, you will find advice from a bunch of great gals on the June feed. Everyone is eager to help and genuine in their caring.
Any advice for me is welcome !!
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I'm one of those who did not complete the 12 sessions of Taxol because of neuropathy. I reported it when I went in for my 8th infusion - by that time it had become quite painful, particularly in both hands. MO casually said "do you want to quit" as I was leaving the appointment. She also gave me a prescription for gabepentin (not spelling that right) which my neurologist doubled when he saw my hands. (MO Office was closed the next week and I stewed over the comment.) Went in for dose 9, took DH and discussed the issue again. I was so miserable but was still of the mindset that I "should do everything." DH agreed that she was almost flippant when she told us that she wouldn't have suggested it after an early dose but was very comfortable with my quitting then. So I did. Neuropathy subsided and no evidence now. I have gotten more comfortable with her "bedside manner" and think she is very competent and haven't looked back on the decision to stop at 8. But I do agree that more study is needed on how much is the right amount and that I deserved a better explanation of why a particular # of doses were recommended. I also agree that we have to do this "one day at a time." Ten months post diagnosis, I have come to think of my bc as a chronic illness (I'm triple positive which means oral medication forever it seems) which I can manage it like others I have, some times more successfully, sometimes not. I will never be as diligent as many of you are about diet for instance. Best wishes to all. Questions are always welcomed on these boards. My "starting chemo Feb 2017" group has gotten very close. We set up a private Facebook group and have shared so much, including pictures as we lost and regained our hair.
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tina_marie, welcome to this thread, sorry you had to join us. This is very overwhelming, I agree with you, I still cannot believe it is real but you will find these boards to be very supportive. I have only had four infusions of Taxol so far. I had an allergic reaction the second time but they stopped the infusion, gave me some more cortisone and then ran it slow. Otherwise fatigue is common but it is doable I was told. You are going to be fine, just hang in there. Cherry
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Hello All,
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Question about Elma cream on port? What do you use to cover the Elma cream. I finally am going to use Elma cream. Need some help!
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