Weekly Taxol for Stage 4
Comments
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Melissa, you sounded very happy and positive--just realistic, not negative. Thanks for posting. It's always good to hear about treatments that are working!0 -
Hi Curveball
My hair started to thin around week 3 of taxol and I shaved it by week 6 as I was frightened of seeing it fall out in clumps. I wear a wig whenever anyone is calling to the house or if I'm going out. Otherwise I wear a cap. I've a collection of hats and scarves but feel more comfortable in the same couple of caps. I can't get the scarves to stay securely on my head. My hair is growing back now that I'm on taxol once every three weeks. It was a shock to the system to see the grey and white colour as I've had it dyed for years. I still wear wig and cap as my head gets cold!
For me fatigue sets in around the third day after treatment - I have taxol on Tues and by Friday I felt nauseous, exhausted, touch of big D. I anticipate the nausea now by taking stematil and valoid. I took zofran in the beginning as I got sick. Some other people on the boards here have been prescribed ritalin for fatigue - my onc. won't.0 -
OK I have more weekly taxol newbie questions. Did you do anything specific, such as take supplements, to try to prevent neuropathy? If you got neuropathy, how long had you been taking taxol when you first noticed the symptoms?
My other question is about fingernails. I have read that some people used nail polish to prevent fingernails from lifting or coming off altogether. Up until cancer I had always had very hard nails, but on CMF they got brittle and tended to split so I want to try to protect them during the taxol. I've never been in the habit of wearing nailpolish and I would like to keep the appearance subtle if possible. Does the polish have to be a dark color, can it be any opaque color or would even clear polish protect nails? How long did it take before the taxol started to affect your nails?0 -
Curveball,
As to the fingernails, Taxol seems to make the nail beds photosensitive, so any opaque nail polish would do the trick. I was about 9 weekly cycles in before I noticed nail silliness. At first they would hurt, then the top of the nail would start to lift off of the nail bed. When I started using nail polish, the symptoms alleviated, but did not fade completely. I never lost a nail.
As to neuropathy, I took up to 400 mgs of Neurontin nightly when the tingling started, and never developed anything further. When I did dose dense Taxol at my initial diagnosis, I had numb feet for months, so I'm grateful for the Neurontin.
I also developed a photosensitive rash during weekly Taxol, and so had to be good about using sunscreen on my hands. Regular make-up seemed to take care of my face, but my hands would get really bad in the course of a day if I forgot to use sunscreen. The rash looked and felt like a poison ivy rash.0 -
Oh well if it's photosensitivity that causes nails to fall off during taxol tx, it shouldn't be a major problem in western Washington during the winter. Between overcast skies and short days, there is not much "photo" to be "sensitive" to around here between November and March. But I got some nail polish today anyway, and I think I have sunscreen that I can put on when I go in the garden. If I am walking, I usually keep my hands in my pockets anyway for warmth. Maybe I should get a pair of gloves or mittens. Dr W (oncologist #2, who is local) likes to vet all supplements taken by chemo patients, but has issued a blanket OK for whichever B vitamin and/or amino acid it is that are supposed to help prevent neuropathy, so I think I will take these as well. The infusion center down here also OK's using ice on fingers & toes but I'm don't plan to do it. The circulation in my extremities is naturally not all that good. I used to work outdoors, and when I first started that job, I could tell the temperature roughly by which/how many of my fingernails had turned blue. Anyway, I don't "get" icing. The idea is that chemo goes to all parts of the body, so it prevents or treats mets no matter where they are, right? So it has never made sense to me to constrict blood vessels in a particular part, and reduce the amount of chemo that goes there. Wouldn't that make that part more vulnerable to mets/progression? And I figure with my iffy circulation, I am already getting a reduced dose in my fingers and toes. I hope that plus the supplements will stave off neuropathy.0 -
Oy vay. My antinausea meds didn't work. The last 24 hours have been like having a nasty stomach flu. I have 2 antinausea meds but maybe waited too long to take the 2nd one. I am cooking up a batch of ginger-ale base, but don't feel recovered enough yet to go to the store for sparkling water to mix it with. I feel knocked flat right now, so back to bed. I hope I can get better control of the SE in future weeks. I'm trying to gain back about 10 pounds, which ain't going to happen if I have one day I can't keep anything down.0 -
Curveball - there are different meds for nausea. If your current batch isn't working, get your team to prescribe new ones. When they work, it's such a relief.
Jennifer0 -
@blainejennifer, I think I might not have taken it soon enough. I had two kinds, one to take twice a day and the other to take in case the first one didn't work. Thursday night, the day after the infusion, I felt something coming on but didn't think it was nausea so didn't take the second med. Now I know better. But if I take it as soon as I feel anything next week, and still get sick, I will get another prescription. I'm trying to regain some of the weight I have lost unintentionally over the last few months but that's not going to happen if there's one day a week I can't eat anything.
I got a recipe to make ginger-ale base from fresh ginger but since my kitchen is being remodeled I don't have a stove right now, so I simmered the ginger in a crockpot for several hours. My stomach felt just a little odd tonight so I tried it out for the first time, added to a cup of tea. It doesn't taste all that strong, so maybe it really needs to be boiled, not just heated. Oh well, a bit of ginger certainly can't hurt anything.0 -
Hi Curveball, I don't wait to feel sick anymore. I learnt from bitter experience that I feel nauseous/get sick on the third day after treatment (I have taxol on Tues and feel ill on Friday) so I take two different types of anti-nausea meds on Friday. As soon as I wake up I take stematil and four hours later (or earlier if I feel ill) I take valoid. Each med can only be taken at 8 hourly intervals but as they have different ingredients you don't have to take them together and so can stagger when you take them individually. If I still feel nauseous I take zofran. I also avoid dairy products on Fridays and eat lightly - toast and banana for breakfast, soup or a boiled egg for lunch, for instance. Hope this may be of some use to you. You poor pet, it's so miserable to feel nauseous on top of everything else. {{{Hugs}}}0 -
I second the dairy avoidance. While on Taxol, I became completely dairy intolerant. That lactase is hard to digest.
Peppermint tea can also alleviate stomach queasiness.
Hoping next week is better for you, curveball.
Jennifer0 -
I didn't wait to feel sick either. I took ondansetron twice a day starting Wednesday, but what I felt Thursday was cramps, so I called the hotline to find out what I should take for diarrhea. As it turned out I didn't take that soon enough either. :^(
I didn't feel sick until I got sick, so I didn't take my second antinausea med (compazine). Next time I will know to start taking it as soon as I feel the cramps, and if that still doesn't work I will ask for a different med.
(later that day)
>>sigh<< I am about to start undoing my yarn braids before my hair starts falling out. Then I plan to braid the yarn again, but not on my head, and hope I can come up with a way to attach it to a hat. If I can do that, maybe I won't look so very different than I do now. >>sigh<<0 -
I joined the weekly Taxol train one month ago. So...I'm 4 treatments of "who knows how many to go" down. My scans showed my first "major" progression just three months after my last PET scan. In the very beginning I was stage iv. I had one small met in my femur, and one small met in my liver. I found NED after about 6 months on Tamoxifen. NED stayed with me for about 18 mo. Since then I have steadily gone through the hormonals due to new bone mets here and there. Now suddenly, it's everywhere in my bones....and the multiple lesions in my liver.
Taxol is my first chemo ever. I think I'm tolerating it ok. Fatigue is a definite, but I was feeling tired prior to the chemo too, and am sure my body fighting all those mets is an issue also. I've got major hair loss and finally just shaved my head and will keep it covered this winter. As long as the chemo works I can do without hair. One thing I'm wondering about is indigestion. Since my treatment last week, I've developed major indigestion. I don't have a huge appetite, but if I do eat more than just a little at a time, I suffer. I'll be asking my onc about it tomorrow, but was curious if others have had dealt with it while on Taxol.0 -
Hi YamaMama,
Yep, I got indigestion too on Taxol. Got Losec from Onc and haven't had any since. I've done 11 weekly sessions and waiting for scans to check my liver. My hair has thinned a lot but not ready to shave yet. I hoping to only need 16 sessions so hoping my hair hangs in.
I got fatigue and was shattered one week and my onc removed one of my premeds and I have been much better since. I also got anxiety and sort of depression that was unusually for me. My onc recommended I stop taking my anti nausea as sometimes apparently it can do that. That worked for me too and I never had any nausea. Weird I know but Taxol itself is fine with me but two SEs meds gave me SEs.
Moira0 -
Thanks for responding Moiralf. I have some hair left. But, it's very odd, with bald spots everywhere. Plus my hairline has definitely receded big time! The big spot on top of my head led me to shaving it all, as it was impossible to cover it!
My doc hasn't decided yet how many treatments I will get, though he did at one point say until I didn't tolerate them. I haven't really had too much nausea. The indigestion and feeling like I have a big lump in my throat and chest after I eat is bad enough.
So far so good. Next treatment tomorrow. Hope you continue to do well!0 -
I don't think I'm going to shave my head, even if most of my hair falls out. I keep wondering, if I'm completely bald, won't my scarf, hat or whatever just slip off? Even if there is only a little hair left, at least I could braid it up and use a hairpin to secure my hat. My first chemo was CMF and it didn't make my hair fall out, so I am really pretty nervous about losing my hair. I think there is a Look Good Feel Better class near here, maybe they tell you how to make scarfs or hats stay on a bald head. I am also wondering did anyone ever use henna or some kind of semi-permanent makeup to fill in your eyebrows? I have never been in the habit of wearing makeup and never used anything on my brows even on those rare occasions when I did wear it. I never got in the habit of plucking them either. I'm sure if I try to draw eyebrows on myself I will make a mess of it.0 -
Hey curveball,
I have the same questions about hair and hats. I have my wig but I have only tried it on over hair so don't know if it stays on tight without hair. I know you can wear a skull cap underneath to be more comfortable and maybe that works or maybe it will make it slide more? So many questions so unwilling to ask.
Since I have been doing this for 6 years I feel an old hand at it but this is the first time my hair has thinned and what to do about shaving it. I feel a bit silly not already knowing.
My hair doesn't have patches but overall thinness. I guess when or if I shave is up to me. I am still watching and waiting to see if I need to do it before I finish. If it had fallen out in clumps and lots of it at lest the decision would have been made for me.
Youtube has lots of posts about how to wrap scarves etc so they might have advice on how to make them stay attached. Might have another look at them myself.
As for eyebrows, mine were always quite thin and I didn't have to pluck them much so now they have thinned too but not much. I do feel they are slightly less noticeable so I have used eyebrow pencil to shade them in a bit. I looked at permanent marking but it was too expensive for what I thought I would need. A little colour in the same shade as my brows and it looks ok. I mastered drawing them in cos it really is just following the natural line and what is left of my brow and not being too heavy handed.
Moira0 -
Curveball I am on Abraxane, three weeks on and one week off, which has thinned my eyebrows considerably. I am considering doing the permanent make-up thing. One of the women in my o onc's office, however, recommended Elizabeth Arden Brow Shaper/Eyeliner which really works well to fill in thin eyebrows. It looks pretty natural as you can feather it on, so now I'm not as frantic about the permanent make-up thing. Anyway the Elizabeth Arden is inexpensive so definitely worth a try.0 -
I'm 8 weeks in on weekly taxol. I don't have too many problems with nausea but feel like I've been hit by a bus 2 and 3 days out from chemo. My hair came out in clumps 3 weeks in so I shaved it and bought a wig for work. It looks great but I hate the way it itches so apart from work I just go around bald. I don't really care what other people think. It has started growing again but is so patchy and scruffy I went to the locAl barber yesterday and shaved it all off again.0 -
I'm not going to shave my head in any case. I have very tightly coiled hair and expect if I shaved it I'd just end up with my whole scalp full of ingrown hairs. But I might clip it very short.
I wasn't thinking of getting true permanent makeup, which is actually tatoos. I wouldn't let anyone but a doctor or nurse get that close to my eyes with a needle! What I had in mind was using something that doesn't wash off the first time it gets wet or have to be reapplied every day. Henna was my first idea, but probably that's not dark enough to match my hair color. Maybe I will just get a fine-point permanent marker!! Maybe my eyebrows won't fall completely out. >>wish<<0 -
I lost every bit of hair including nose hairs! I very carefully shaved my scalp with aloe gel in the shower once a week as it got picky and drove me nuts. Every day in the shower I would use either a loofa or the picky/ruff poofs to exfoliate my skin from head to toe and never got ingrown hairs, actually felt great! Never had a problem keeping scarves on, used plain cotton just tied at the back. Didn't like the wig one bit. After, I used organic coconut oil head to toe (not face) my body loved it, and I shed lots of skin actually, felt like a snake lol, had baby soft skin!
I heard that Henna might cause allergic reaction while on chemo. I went everywhere bald. Jo0 -
there is an e-book called that's a wrap that may be of interest to some. I recently was a head model for the real book and the wraps were easy and very elegant!0 -
I started Taxol weekly in mid-August. My TM continue to go up along with my spinal bone mets pain. I am supposed to go tomorrow a.m. for another weekly IV treatment. Don't have an answer yet from my oncologist. Does this Taxol IV not work in the beginning and then months later start to work???
Am lost as to what to do.0 -
Hi Maddy. I think everyone's response is different. Taxol started working pretty well straight away for me. The awful cough I had from lung mets which had been a daily part of my life for months was gone by week 3. I hope you get some answers soon.
I had a timely reminder at my infusion yesterday that even though I'm going to chemo weekly I need to listen and take note of what the nurses are doing. So I am able to drive the Onc has given me a anti histamine which I take at home rather than the one in my drip. Yesterday I got both. Didn't realise till I was driving home and felt really quite stoned. I didn't come right for about 5 hours0 -
Maddyley:
Some people don't respond to Taxol. It's all part of the guessing game that is chemotherapy.
The questions to ask your Oncologist are:
1. What treatment does she plan on next?
2. Would radiation be good for suppressing the spinal mets, buying you some time for a different treatment to kick in?
3. If you are hormone positive, what anti-hormonals does she plan on trying?
One thing to make sure of is that you are getting the correct body weight dose of chemo. Up until 2012, the guidelines were to calculate dose based on a the midpoint between a person's ideal weight and actual weight. This lead to a lot of larger ladies being underdosed, with a comensurate increase in metastasis in the overweight/obese population. So, if you are larger, check that out with your doc. It may be that you are being underdosed. BTW: They used to do it because they were worried about chemo toxicity at the larger doses, but that worry proved unfounded.0 -
Three down, who knows how many to go. Last week I had very sore muscles on the Friday after my infusion, but this week they feel fine. The new antinausea med is working well. Based on the information sheet I got before starting taxol, I expected to start seeing hair fall out this week. I asked the nurse about it and she said the two-week timeframe for hair loss really applies to people getting an infusion every three weeks, and with weekly infusions hair loss tends to be delayed until the fifth or sixth week.
added 11/18: I got a call from the infusion room this morning, telling me I was supposed to skip this week. I had thought I was on an every-week plan, but I guess it is really "three on one off". I asked if I could skip next week instead, since it is Thanksgiving, and that was OK'd by my local MO. So I will have an infusion this Wednesday, counts allowing, and skip next week. And after thinking nothing was happening to my hair, it looks like it is starting to fall out now after all.0 -
Just wondering how long people have stayed on taxol and how they tolerated the se's? The two stage iv people I've spoken to in the hospital have been on it for over 2 years with minimal se's. Together with problems with peripheral neuropathy, I'm finding the fatigue is overwhelming and depressing. This week the big D returned after treatment and I've been flattened. Yet I'm getting the impression that taxol is one of the 'easier' chemos and I'm dreading what will come next. I asked my onc this week and he patted my arm and said it seemed I was 'a glass half empty' sort of person. He said he'd wait til he'd squeezed the most out of taxol before he'd decide on my next treatment. So the plan is, there is no plan! Also it seems that because I have private health insurance, they won't cover me for trials, whereas if I was in the public system I would be eligible. I'm feeling very discouraged.0 -
@Aoibheann, When my oncologist recommended chemo I too dreaded what would come next...I felt doomed to just go from one chemo to another even harsher, for the rest of my life. Our situations are different because you are in Ireland and I'm in the US, but my oncologist told me that if the taxol worked for me, it's possible I could return to a less-toxic treatment in the future. I don't have a specific date for that but I'm thinking maybe after 5 or 6 months of Taxol. I have just finished my first month. I don't have much fatigue right now, but that could change after more months of treatment--it did on my previous chemo last year. You might talk with your oncologist to see if changing from taxol to another treatment is an option for you, especially since you are having a hard time with side effects. It can't hurt to ask. I am taking Vitamin B-6 and glutamine as there is some evidence they may help in preventing neuropathy.
And here is a "glass half full" thought for you: maybe your oncologist won't say what he has in mind for after taxol because he is expecting it to be effective for a long time, and by the time it stops working there may be new treatments that aren't available now. By that time some of those trials that aren't covered on your current insurance could be complete, and the new thereapies now being tested will have become part of "standard of care".0 -
I have completed my 7th week of weekly Taxol. I'm to have a scan in two weeks, to see if it is working. I'm hoping, to get back to hormonals eventually. I am experiencing some slight neuropathy and am taking Neurontin, and B6,and B12. The rash I had on my head is finally subsiding.
Fatigue is definitely an issue for me. I'm even finding the steroid energy I had after each treatment the first month doesn't last as long, and fatigue is taking over. I've been taking Ambien for about a year to help me sleep, and now I find I cannot keep awake at night and fall asleep on the couch quite early, and I can sleep all night through without sleep aids. Napping during the day is also something I am finding I can do easily, and I always had trouble sleeping during the day.
I am hoping as I said to get back to Hormonals soon. There are a few I haven't been through, and I am highly ER/PR positive. (or I was four and a half years ago when I was diagnosed).
What a roller coaster.... But right now, I can say if this is working, I can do it as long as necessary. Reading how others are doing and the tips such as taking B6, and B12 while on this treatment has been so helpful for me.0 -
Thank you Curveball and Yamamama for your responses. The thing is that taxol is working for me in that my latest ct scans state that the mets appeared to be stable. I've noticed that most of the U.S. oncs approve vit b6 etc for neuropathy and ritalin for fatigue but my onc won't agree to any supplement or treatment for se's. So it's trying to balance qol vs se's. I don't really want to stop taking taxol but it's just these days when I can hardly crawl out of bed and watching tv is too demanding that I wonder if I should call it a day and I wonder how other people are coping, especially when the only other two people I've met who are on taxol are managing to live relatively normally i.e. working etc. I do very little even on my 'good' days, I try to go for a 30 minute walk and meet a friend for coffee. My dh does most of the shopping and cooking.
I hope with all my heart there will be new, less toxic therapies for us all very soon. It's incredible that there are so few 'new' drugs available to us.
Hugs0
