Weekly Taxol group
Comments
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Nonahope - mine elevated and were out of range, but my MO never mentioned it - I found it looking at my bloodwork. At the same time my right side was aching in the rib area so my mind went to liver mets also. I did a lot of research. So many people with liver mets say they had no symptoms and their enzymes weren’t elevated. And if you look at side effects of Taxol, elevated enzymes is one of them and many women get it.
I know you’ll worry about it until the ultrasound, but the least likely scenario from what I’ve read is liver mets.
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PauletteK- So glad to hear your radiation went well.
I didn’t mean to insinuate anything is wrong with Arimidex. I’m not on it yet, so I have no experience with it. I too will be getting my sugery like yours 13 years ago, so I will be placed on Arimidex as well. So I briefly asked my MO SE of the drug when I met with her this week, and she’s mentioned hot flashes. Let’s hope we don’t experience the joys of that!
Be well.
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VL22...Thanks for responding. Yes, the first thing I thought about was liver mets. I'm not having any pain, but my enzymes were really high. The Bilirubin was in normal range though. I just opened the online portal today and saw the levels and my stomach dropped. It wasn't 10 minutes later that the onco's office called to tell me the ultrasound was scheduled. At least, there are on top of things. But, you're right...I will worry all week!!
Hope
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I started my first of 12 Taxol weekly today, right now, in fact I'm sitting in the chair. There was some discussion about neuropathy somewhere in this thread, and wanted to mention that the nurse educator I spoke to yesterday said that her patients have found acupuncture to be most effective. Apparently, its a cumulative effect that might begin around Round 9 if it begins at all. I've had acupuncture before with some success, so I'll likely begin again.
Good luck to all. A/C was not the nightmare I thought it would be, but after the last and fourth round, it was the "worst" only in that the nausea hung around for a week. Battled it back with good meds. After 4 A/C, i've lost 6 pounds. Appetite is weird, but I can eat. A bit of medical grade MJ really improved my appetite. I don't have "moon face" from the steroids, and family says I do no not look "sick." I feel sick and weak, but am digging my baldness, although my wig is cute. I might go get a henna crown tattoo on my scalp just because I want to rock the bald look. I'm still able to work with days off for treatment day.
I also want to start back into yoga and spin, but the last time I did that, I couldn't leave the couch for two days. Dr. thought I overdid it. She said I should exercise regularly, but no need to train for a marathon. So I'm now hesitant to do anything as the fatigue really gets to me after treatment. Only mile walks with my doggy in the evenings. If all goes well this time, without so much nausea and fatigue, I might sign up for a 5K. I really want to ward off neuropathy anyway I can. I don't want to not finish 12 Taxol.
All 10 of my fingernails are nearly 1/2 way black. I hope they don't fall out. Two toe nails have fallen out but this doesn't freak me out so much as it is a common side effect of long-distance running.
Everyone here at the Infusion center, everyone I've met on this journey has been super kind. It tears me up. I feel so lucky, for insurance, support, family, kindness, and help, even with this unlucky diagnosis. I am praying for all of us. Light and love. Let's all stay positive and get better.0 -
CIW - I looked back to my journal fatigue kicked in on #5, I started to have longer nap. Sometime I slept for an hour or two.
I remembered I got little pains around my stomach, then I worried I got UTI it was just weird pains comes and goes. So unpredictable!
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So today I met with the doc, my anc went up to 0.6 and my wbcs went up to 1.5. My doc said he was comfortable with me getting my fourth taxol today and I didn't have to delay it. He did say he wants me to get two neupogen shots after each infusion from now on. Also I got my lovely zoladex shot too. I am hoping the neupogen works with manageable side effects.
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Hi Sammi. Neupogen worked great for me when my WBC and neutrophils tanked mid-taxol treatments. Side effects were minimal; body aches and more fatique (Ican’t be certain fatigue was from the shots). I had two weeks of shots and finished off Taxol without missing a week of infusions.
I’m hoping the same for you. Good luck Sammi.
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paulettek-
When did neuropathy start for you? I have infusion number 5 this Friday, so I’ll have to see how the fatigue goes. Did the steroids keep you up at night? That’s a good idea to keep a journal of your experience!
Sammi-
Good luck with your infusions! We are at similar spots in our treatment and I’m cheering you on from Minnesota!
Kamalokitty-
Good luck to you!
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CBK- thanks, I get the first one in a few hours, I am glad to hear your se's weren't bad.
CIW- thank you! Yesterday went off without a hitch and got my zoladex shot too. Came home and made some chocolate chip cookies and wrapped presents. This morning I woke up with more zingers in my feet and hands, but only off and on and not too bad. The only bad thing really is that while washing my hair this morning it started coming out in clumps again. I was aware that most likley it would happen, I used to think to myself that I would be prepared because it happened while on ac too, but I wasn't. To top it off, I was crying and my husband told me that I had been told all along that it would happen, and there is no reason to spend the whole day upset over it. I am usually upbeat and positive about it, but with the past few weeks of being neutropenic, and losing dual insurance coverage, this feels like it tops the cake and I have been crying. I know that I shouldn't be. My wig showed up monday, and I know that there are so many others that have things ALOT worse than I do, but today is an off day.
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Hi Lisa - had the MRI and the report showed that the tumor and the lymph nodes had shrunk 50% - wow - what a relief. The oncologist said that she is willing to re-start the Taxol on an every three week basis instead of every two. I have also found through research that I don't have classic neuropathy but rather Hand and Foot Syndrome. The pictures I saw online look exactly like my palm side hands with the peeling skin which is not part of neuropathy although there is some neuropathy which is resolving. I plan on telling the doc next week what the diagnosis is! I have also decided to start taking Vit B6 100 mg and Alpha Lipoic Acid 200 mg and see if that helps. I don't think it can hurt but will check with doc anyway. Anyway, some good news for a change.
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Hi Jenna - We are pretty much in the same boat although my tumor was 5 cm now down to 2.5 cm after 4 rounds of A+C and 1 round of taxol. I had almost No side effects with the A+C but did not do well with the taxol. I thought I had developed neuropathy 2 days after the infusion but now think it is Hand and Foot Syndrome as the neuropathy is highly improved but my fingers are peeling. I looked it up and the pictures look just like my hands. Feet are not a problem. Oncologist is lengthening out doses now to every 3 weeks instead of every 2 to see if that helps. I've also started taking B6 and alpha lipoic acid to see if that will prevent some of this. Other side effects happened as well i.e. a little diarrhea, swelling in legs and feet, itching upper arms and the hand and feet thing. So pretty disappointed in the taxol as I was also told that it was a milder drug than the others. Not so for me, I guess.
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CIW - my neuropathy started on #5, it got worse each time, so did fatigue. Steroids kept me up the first few infusions , then I took Ativan and melatonin, I able to sleep few hours on the infusion day. I’m 4 weeks PFC, neuropathy still with me, feet are better than fingers.
Gussy - I’m also taking B12maybe you can ask your MO is it ok for you to take. I found taxol is unpredictable I got more problems with taxol also. It could be my body got weaker by AC?
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Hi Sammi2006 be kind to yourself, what we are going through is life changing and sometimes it can come down on us when not looking. Love and hugs xx
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Hi ladies, TAxol #9 today
I just wanted to tell about another symptom I was slightly worried about, and I asked today at chemo... I’m not numb in fingers or toes but had a bit of wierd numbness going on in upper abdomen and upper back and doctor said it’s neuropathy as well, that it can happen in your back as well. Wierd!
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sammi2006 - we’ve all been there. My hair has been gone for months - I have 2 Taxols left - it is even growing back and I still cry about it being gone. I really think you have to live it to get it. Don’t feel guilty or the need to apologize for your feelings.
Hugs
Elfmcg - we really have the same SE’s! I know the neuropathy in hands and feet can last a long time or even forever - did your Dr. say anything about back and abdomen?
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Hi VL22, yes he said that the abdomen and upper back was also neuropathy, I’m not having anything in my hands and feet, apart from sore thumbs, but it may still happen. I just find there is very little tie in between the nurses and doctors and views of side effects. It’s enough to drive me batty. I reported the back and abdomen numbness to the nurse first, and she said it wasn’t an se, and she’s sent the doc over, and he said, yes, that they are other areas of reported neuropathy!
Do you still have any upper right abdomen issues or have they fully cleared up, I still have mine, but to a lesser extent.
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elfmcg - I still have it, but with taking the Pepcid I can tell it is bone/muscle pain an nothing more. It is just an annoyance at this point.
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VL22, the Pepcid was a good call, I feel mine is both bone/muscle with some GI thrown in. Apart from the Pepcid, I also increased my water intake, as I had slackened a bit as Taxol went on, and I feel that has helped somewhat!
Annoying is right!
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Elfmcg...Thanks for that info about neuropathy. We are being well informed by asking questions.
I have had no side effects since my Taxol on this past Thursday. I haven't even had to take a Tylenol. But, I have been drinking water like crazy. Maybe, that's the secret.
Hope
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Hi everyone, I finished with my chemo treatment in August and radiation treatment in November . I found that drinking lots and lots of liquids ,
( preferably water ), really helped minimize the side effects of chemo ESPECIALLY the day before, the day of and the 2 days after infusion but everyday would be beneficial.
My oncologist approved the following :
For constipation - Prune juice before going to bed
For neuropathy - l-glutamine - 10g 3 times a day , R-Alpha lipoic acid supplement, vitamin B complex, vitamin B12,
Fatigue - ginseng
Bone pain - Claritin
Bone broth and the l-glutamine also help with the stomach lining issues
Mouth sores - gargling with baking soda and salt as often as possible and especially after eating
Exercise whenever you feel that you can -every little helps!
Also I found journaling to be very cathartic
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VL22 and Elf - I didn’t know Neuropathy can be at your upper back and abdomen, I noticed acid reflux was bad during taxol, I take double dosage of acid reflux during that time,.
As Chinese my family members told me do not take Ginseng while you are doing chemo, for fatigue, walking would be the best. If you want to take some gojis berries would be good.
Best of luck ladies!!
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Both my oncologist and infusion nurse recommended ginseng but only the schumacher’s 100% pure Wisconsin brand but obviously it’s best to talk to your own medical team before taking any supplements
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Indigo...Thanks for the information. We appreciate everything that people post regarding this treatment and side effects.
Hope
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Thank you Hope; I forgot to mention in my earlier post that acupuncture alsohelped me tremendously with the neuropathy on my fingers, hot flashes and fatigue 😊
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Indigo29- Congrats on the completion of your treatments!
Did you experience neuropathy during Taxol? Or did you take these supplements preventatively?
I’m curious since I finished Taxol last week and I’m having trouble with nueropathy. My MO prescribed a low dose of gabapentin and I did not tolerate it, in the least. Now she’s suggesting B12 and B6; 1000mcg and 100mg respectively. In retrospect not sure why I wasn’t placed on it preventively. But any information you can provide with your experience is much appreciated.
Did you find fatique was a real issue after you completed Taxol? I realize you went through radiation as well, so may be hard to answer that question with any clarity!!
Thank you for sharing your list here!! I wish you much healing and the most positive outcomes for you go forward!!
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CBK - I’m little over 4 week PFC, my neuropathy is getting better everyday, it took about all these time finally my hands and feet are feeling better, still have some numbness not much much improved. Fatigue is getting better I would say 60-70% better. Since I started radiation I might feel fatigue after a few weeks, we’ll see. I hope that help.
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Hello CBK, Thank you and congrats to you too for finishing yourchemo treatments!.
I started experiencing neuropathy around my 5th taxol treatment , (12 treatments in total ). I started to take the B12 and B complex at the beginning of my taxol treatments as a preventative measure against neuropathy but unfortunately I still got it - maybe it would have been worse if I hadn’t taken them!. Like you, I was also prescribed a low dose of Gabapentin which made me feel very disoriented so I stopped using it after a week. It was around this time that I found out that my insurance covered me for acupuncture so I thought that I would give it a go and I’m so glad that I did because it helped with so many of the side effects. I still have a tiny amount of neuropathy on the tips of my thumbs but that’s about it!
Yes, I found fatigue a big issue after finishing taxol but I felt my energy coming back within a month of finishing it. The fatigue came back for the first week of radiation treatments but after that my energy came back in leaps and bounds!. CBK are you suffering from fatigue too?. Give yourself time to rest and recover from the chemo and before you know it your energy levels will be back to normal😊
I’ve only been on letrezole for just over 2 weeks and so far I haven’t had any major side effects and I’m hoping that it will stay that way as I’ve been told that I will be on them for 10 Year’s!!. Will you be taking any meds?
I wish you the very best of health going forward; we have gone through the worst and made it through to the other side!!
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PauletteK- Great to hear neuropathy is moving in the right direction. My MO seems to be optimistic it will pass after some time off the chemo, however I just feel like there must be something I can do to help it along. Mine tends to get much worse at night! I guess the more you move the better??
Indigo- OMG, gabapentin knocked me out! I took one 300mg capsule and I was in a stupor. Ha!
Fatigue started getting to me about mid-taxol, yes I had 12 like you! It’s helpful to hear your perspective!! I know give it some time, what our bodies have been through!!
I totally think acupuncture may be the way to go. A friend of my husband’s that works at Memorial Sloane Ketering in NYC, gives it a big thumbs up for neuropathy. I actually have an acupuncturist that is a former oncologist locally, I need to consider this since my neuropathy is becoming painful at night. I’m thrilled to hear your positive notes on it.
I’m BRCA2 positive, hence my BMX. I have one more fun surgery (bye bye ovaries) before I will be placed on hormone therapy, which I believe will be Arimidex. I’m not familiar with your hormone therapy. I hope it’s well tolerated by you!!
Ladies, thank you for all your input and just listening! Truly heartfelt wishes for healing on all levels!
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CBK - I’m getting ready to do Taxol 11 and fatigue has been a big issue for me since treatment #8. I get out of bed early to see my boys off to school , but then I sometimes go back to sleep for 2 hours. Just bone tired. I feel best in the afternoons- this is when I get everything done and go for a long walk
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CBK...I've always taken 1,000 mcg. of sublingual B-12 on a daily basis for years...just because. I've never supplemented B6. But, I've never had any sign of neuropathy during my entire treatment in 2010 (chemo/radiation) or this time (so far) with Taxol.
Hope
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