Hello friends. I was initially diagnosed in 1995 and did well until 2013 when extensive mets to the bones were discovered. I've written here before that, unbelievably (to my oncologist and the radiologist), relative to how many bones are affected, I didn't feel any pain for 8 years and was able to live a full and active life. Although I've zipped through treatments (9 in 8 years), I was able to stay on hormonal and oral chemo.
In July, I had to have surgery on my arm because cancer had eaten through the bone and I suffered a non-displaced fracture of the humerus. Since then I've been in a lot of pain, mostly in my shoulder but also in my right hip. This is likely because of the surgery but also, based on a recent PET scan, because the cancer has become very active and also moved into some new spots, including my clavicle. I was recently for six cycles on Gemzar (first IV chemo since original diagnosis in 1995) but, as the scan indicated, it did not work so the oncologist would like to switch me to Taxol.
So, for those of you who have been on Taxol, here are some specific questions:
1. Did the bone pain improve? If so, how long did it take?
2. I've read that there could actually be more pain after. Was that your experience?
3. How did you feel overall? Stomach problems? Extreme fatigue? Other?
4. Most bothersome side effects?
5. Hair loss --I've read some do/some don't but my oncologist says I will. Trying to reconcile myself to this. It's vanity, of course, but mostly because it's a huge billboard to me, my family and friends that I'm sick. I've been able to cover that pretty well all these years. Anyway, if you lost your locks, how soon did it happen after the fist treatment? How did you handle this? Shave your heads right away? Wait? Wigs? Scarves?
Thank you, thank you, thank you for being here and for any and all answers. I'm sending good thoughts and blessings for healing your way. xoxox Ellen
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Ok let me go through your questions.Yes, I am on taxol and have been since March. I began as 3 weeks on one off and currently on 2 weeks on one off.
Yes, my hair thinned and then it got matted after I put it up under a scarf to sleep with some oil during night. It as so bad that I just cut it off--like an animals nest--very weird. Anyway, my personal opinion is that I have seen numerous women with super thinned hair and I think it looks better to be bald and wear hats, scarfs and yes wigs. I am totally comfortable with this.
As far as side effects: I have felt much better on taxol than I ever did on orals. No it does not upset my stomach-this med tends not to do that although they will give you anti medics for nausea in case. If you do get a bit queezy, it should only last about 24 hours. I get y infusion on Monday morning and feel good t he rest of the week. Although now, after my 9th round, I am getting pretty tired on Tuesday. Other than that I have had no real problems.
Neuropathy is an issue. I feel occasional fleeting pain in my feet but very rarely and now that I have been reduced to two weeks instead of three, I have hardly none. I do take a good B vitamin and extra B3 for my nerves and my Chinese doc has put something in my liquid herbs to help hold that off.
Improvement was a dramatic across the board--all pain subsided, was mostly concerned about my liver pain and healing. Other than my crazy emotions, I feel pretty darn good.
My bone pain has never yet been that bad. For me to see improvement, probably after the second round.
After the first round, I did request to remove the steroids, as they are counter productive for health. She did take off chemo after the first round and I did not have any allergic response--critical reason they give it but no problem then why?? Onco agreed. After about 7 rounds, I felt a bit loopy too long when I got home from chemo so told her that was stronger reaction and she reduced the benadryl during chemo in half. I am also happy with this. So, pre meds are for reflux, benedryl, and nausea only--ore than enough--then taxol which takes one hour to infuse that part and about 1/2 hour for pre meds.
Okay, the steroid must be given the first round of taxol because there is a significant risk of allergic reaction that would be dangerous. Now, I haven't heard of anyone having this problem, but it does occur. So I agreed to have it for the first three treatments of my chemo--3 weeks in a row, one week off. I, as expected, had no allergic signs whatsoever so, when I saw my onco on week off, I said okay what about eliminating the steroid. She agreed it was not needed. Many women on this site, seem to like the steroid because they have more energy for a day or so. For me, not worth it--too many potential problems and the fewer drugs I have to take the happier I am. The also give Benadryl, which they have now reduced in half for me. And with that is the pepcid and zophran. Then 30 minutes later the hour of taxol--then I am out of there and home. Normally, I am finding that I feel pretty good and can get some things done around the house until about 4 pm then I crash and Tuesday, past month, I am also tired--after that I feel good.
Hi Bonnie, thank you so much for the wonderful information. Just what I needed to know. Of course, "everyone is different" (I've heard that so often over the past six months that I swear I'm going to get a T-shirt with that statement printed on it. But it's good to know what to possibly expect. I'm with you on the steroids, mostly because I know they affect your sleep so I may follow your path and negotiate out of them, assuming I don't get a reaction. I just got a bone drip and that was after much discussion and check-ups with doctors, dentists and oral surgeons because I've had the drip in the past and developed osteonecrosis of the jaw. Fortunately, it resolved. I live in central Jersey and am being treated at the Perelman Center of the Hospital of the University of Pennsylvania. Again, thank you for your generosity in letting me know of your experience. xoxo Ellen
I was on taxol (right after the epirubicin and cycophosphamide) and I think it was the first set of meds that made me go bald--the taxol wasn't so bad for me, just made me very sleepy. I used to come home, eat a chocolate cookie or two (although sometimes I wasn't that hungry) and fall asleep. My recollection is that it was less toxic than that epirubicin stuff. Now I'm on Ibrance and Faslodex, with Xgeva every third month. That's been easier to tolerate.
Hi. May I ask you if you were on ibrance and Faslodex before chemo? I wonder if it’s possible to go back on medication you had been before. Thank youBest,
I was on Ibrance and Faslodex after chemo--chemo was all in 2016 and then I started these medications after the cancer returned in 2018. But I think people do go back on chemo and sometimes on the same chemo; the problem is that if the cancer mutates it may develop resistance to whatever you've been on for the last years or months.
Thank you very much for your reply. I wonder if you went on the same medication you had been before after chemo Based on your answer you did. There is a research now that people may go on the same medication after some time. Best,
2016: diagnosed, had the chemo mentioned above and a lumpectomy to remove 11 lymph nodes. Then a second surgery to remove "margins"--i.e. a few stray cells. Got to keep my breast, yay! Then radiation. Then clinical trial with 125 mg Ibrance while taking (prescribed) Letrozole--got the real thing in the trial--knew that since my white cells plumetted and I felt tired. Went off trial; tumor came back around four months later--turned out the letrozole wasn't doing anything for me (a genomic test indicated the stuff wouldn't work on me),
When the tumor came back: surgery, radiation, then Ibrance (lower dose--75 mg plus Faslodex plus Xgeva every third month) . So far so good.
Yes, sometimes you can go back on same old, same old chemo after a few years.
Thank you for sharing. I understand that you do not have distant mets. I got wide spread bones and recently liver. I am on Xeloda now after the mbc diagnosis in 2019. Ibrance and exemestane then Faslodex were my first and second lines of treatment. Now I am on my fifth one over two and a half years. I wonder if people after IV chemo can go back on hormonal and targeted one. Your example proves that. We all have hope for new drugs especially ErSO. You may read my postings about it. It’s still on preclinical trials but showed 99/100 % of eliminating all human Mets in mice. We have a group on Facebook ErSO activism and breast cancer Many people from this group joined it. We hope that if proven to be as successful on humans as it was on mice it might be a cure.
But I'm always thinking this: thank goodness I didn't come down with breast cancer back in the eighties. Or even in the early two thousands. There seems to be so much going on in research that we can realistically hold out hope.
I meant Ibrance. I believe you said that you were taking Taxol and now you are back on ibrance. I asked if this is the first time you are taking it or you had taken it before. Sorry if I was not clear. Thank you very muchMarina
Hi Ellen?I can’t answer your question because I am on Xeloda now. I would like to ask you a question. Xeloda is my fifth line of treatment over two and a half years. What were your 9 treatments?
I hope you will do well on taxol. I also hope that the ErSO drug we all waiting for that undergone very successful preclinical trials will come around and either be a cure or very effective long treatment. You may read postings on ErSO here or join the group. ErSO activism and breast cancer on Facebook yo get the latest news about its development.
Hi Marina, Yes, I've been watching ErSO anxiously. I know this sounds odd but I don't keep track of the drugs I've been on. Of course, my oncologist does and it's probably somewhere in my on-line chart, but I haven't been able to find it. I know I've been on Capacitabine (twice), Verzenio, Piqray (horrible allergic reaction), Ibrance and most recently Gemzar...I kind of forget about them once I flunk out of them. The hope with the Taxol is to knock back the cancer to the point where we can return to hormonal therapy. That would be a lot easier as I'm sure you understand. Going to the doctors and for treatment is now my full time job. All the best on your current protocol. xoxox Ellen
Thank you Ellen for your reply. I also had a terrible reaction from Piqray. I hope you would be able to go back on hormonal therapy. I also learned from people on ErSO Facebook group that a few new SERD drugs are in clinical trials now and will be available in 2022. This would be the second generation of Faslodex (fulvestrant) in oral form. People there shared that it’s paired with Ibrance or maybe others drugs that are targeted therapy ones or being administered on its own. They have good outcomes. But off course our biggest hope is ErSO Good luck🙏🤞Let’s hope for cure
Hi Ellen. Thanks again for your reply I wish you the best I am on capatacibine now. You mentioned that you were on it twice. How it was happening. What were you getting in between. I also did not see Afinitor in your list. Were you taking it? I understand that the goal of your MO is yo put cancer on control and put you back on hormonal and targeted therapy. As I mentioned to you two or three new drugs are coming out in 2022. And off course we all hope for cure with ErSO but its still on preclinical stage. I am communicating with the professor in the field of mbc drugs. Not the one who invented ErSO. He is saying that it’s a very promising compound and that the interest to it among cancer scientists is skyrocketing. Let’s hope!Good luck to you
Hi Lnlc I started 12 treatments of Taxol in January 2021 and finished in May 2021 , I was also getting Perjeta & Herceptin and will continue with these .
I found the taxol manageable , yes I had some fatigue but it improved about 8-9 weeks after I finished taxol . I had nausea usually for a day or two after infusion but the medications they gave helped a lot and I only needed occasionally .
The hair …. I hear you loud and clear on the bill board thing . My hair started to fall out after the first 2 treatments . I chose to shave it . I couldn’t stand the mess of hair everywhere. I ordered some soft beanies from Amazon and wore them most of the time.
I bought a nice wig but only wore it once.
My eyelashes fell out and my eyebrows really thinned .
I had lost my hair with initial diagnosis in 2003 and wore my wig all the time . At that time I worked in the public but this time due to work changes and pandemic I am at home most of the time.
My hair has grown into a short pixie since May , a yucky mouse grey but it is hair lol . Eye lashes and brows are back also .
The taxol has shrunk my liver Mets so it was successful.
I hope you get some pain relief soon.
Our tolerances to treatment are all so different . But generally I feel better than I did when I was on the Ibrance & faslodex. ( but I did have spread to liver so that might have been causing the not feeling good) not the medication
If you have any questions let me know , all the best
Hi Luann, thank you so much for your response. Never a good time to go bald, but right before the holidays??? Eeeeessssh. I'm thinking that next week I'll visit some places so they can see what I look like with hair and maybe just try to duplicate that as closely as possible. At 70, I can't see rocking waist length curls or a bright red lob. Of course, I just had my hair colored and trimmed into a cut I really liked AND purchased $40 worth of products. Oh well...I'm a writer so I work from home and as a committed homebody, that's where I'm most comfortable so the wig thing is mostly for the rest of the world, I guess. Thanks again, xoxo Ellen
The wigs available are really nice and light weight. I am sure you will be able to find something similar to your current hair style . They can even thin the wig to closer resemble your hair and trim it to suit you. Good luck with the taxol treatments , I hope they are effective and yet gentle on you .
Hey been on an internet break and pretending that all was well. Long story short, numbers might be going back up (CA15) so I am told that Taxol is next. Would appreciate following your journey - direct message welcome. I need to get my mind around it before I need to start in December potentially. Thanks in advance.
, Luann comment about hair made me realize I did not say that before I shaved off my hair, I was losing tons of it. i would sit and lightly run my fingers through my hair and throw hair everywhere. it was wild. My first diagnosis, in 1998, I chose to cut it all off before starting chemo as I did not want to feel like a victim. this time around, it was a science experiment for me and I just wanted to see how it would happen. Then I got so annoying that my husband and I were eating hair all night long! That is when I started wearing head scarfs to be pulling my hair gently on top of my head and then putting an organic oil on to help protect, etc. But, something weird happened and my hair matted in a birds next on top of my head and nothing I did could get it untangled so I told my son in law who was visiting to cut it off. Next I had my son come over a day later and shave it---never regretted that. Lord it is so much easier to live without hair and when I want it and to look dramatically younger, I put on a wig and makeup. Now, recently my eyelashes are gone but I had previously had my eyebrows microbladed--best thing I ever did--wish I could get a touch up but not sure about that. Anyone have any input on that?? I began taxol in March, eyelashes did not fall out untilSeptember and hair started growing back even on Taxol in August. It is slow and totally grey of course which is a bit annoying to cover those little bits around my ears with my wigs. The other day, I put some temp hair color on those spots so they didn't show grey through my dark brown hair.!! The things we women do!!!
Hello all, This is Ellen LNLC -- so not sure how to respond to and update you all regarding the Taxol I had yesterday but hopefully this will work.
Pretty much everything blms said was what happened! Had the pre-meds (my husband and I counted and along with the advil and tylenol I take daily, I had 20 pills in one day PLUS the chemo--a 1/2 an aspirin used to make me woozy!). Anyway, no reaction at all -- as was said, you get the steroids, pepcid and benedryl 30 minutes ahead of time and then after they kick in, the Taxol drip, which takes 1 hour. I had no reaction before or during -- the nurse sits with you for the first fifteen minutes to make sure. My understanding is that only 10% of patients have a reaction and this goes down considerably after the first time. I, too, asked my oncologist about reducing/removing the steroids at some point if it shows I'm not reactive and she agreed.
I am on a low dose, three weeks on, one week off, which she said is the common dose for MBC patients and also lowers the risk of side effects and their severity. She warned me about neuropathy and I should probably start a new thread but HAS ANYONE USED ANYTHING LIKE A COLD CAP FOR YOUR FINGERS AND TOES TO REDUCE THIS SE?
Anyhoo, besides it taking the whole day, everything worked out fine. I'm tired today but, in addition to the chemo, I'm sure it's all the other drugs and the stress.
Now on to wigs. Visited a place today and have another appointment tomorrow. My oncologist said that the reaction for hair loss is extremely variable - but that the average seems to be that thinning starts at about 14 days. She said the hair doesn't fall out in clumps but keeps thinning. I figure its better to get ahead (no pun intended) of this for my mental well-being. The wig experience is interesting, at least the route I'm taking. I'm leaning toward human hair but man, it's like do I buy a car or a wig?!
Thank you to everyone who responded. Your help and support is an invaluable blessing. Please keep in touch! xoxo Ellen
Hi! To answer your question about icing, yes- I do that to help with the neuropathy. I am not on Taxol, but I am on it’s cousin Abraxane . I went on Amazon and searched for cold packs for feet and hands. I ordered two sets of the booties and two sets of the mittens. So far so good, I’ve had 10 treatments of the Abraxane and I have not experienced any neuropathy at this point. I also bought a insulated backpack that I carry them in with regular hard plastic ice packs to keep them cold. Hope this helps - Blessings to you ❤️
MissMaddie -- this is wonderful information - thank you! What's your system? Do you wear just during the infusion or at other times too? Again, thank you so much! Ellen
Glad to help! Start wearing about 10 minutes before the infusion. The coldness lasts about 30 minutes. Then I switch out and put the second set on at that point, and that stays on about 10 minutes after the infusion. I don’t have premeds, and my infusions are only 30 minutes long, so I’m able to use just two sets of cold packs. I have sometimes cheated and didn’t sit for an extra 10 minutes before/after the infusion. I noticed that the cold affects my fingers more than my toes, so I have to sometimes pull my hands out of the gloves for a minute or two to give them a break. I do wear very thin socks and I also wear very thin finger gloves to help with the “coldness.” I was told that I don’t have to concentrate on the whole hand or the whole foot just the fingers and toes. So regular ice packs, that are folded in half (held in place with rubber bands), would also do the job, and they would be a lot cheaper. Good luck to you, my dear - wishing you much success with your treatment! Let me know if you have any other questions -I’m happy to help! Blessings to you❤️
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Doing well on Taxol. TM down by half!
