I saw my onc this morning and got surprising news! After over 18years with MBC, and treatment with anti-hormonal meds, my cancer cells have changed to TN and the onc is recommending Taxol. I'm wondering what those infusions are like--how long is each infusion? How soon does hair begin thinning, falling out? eyelashes & eyebrows, too? Has anyone here had an allergic reaction to Taxol?
I was in the hospital for 23 days in late October, for an intestinal blockage, caused at least in part by cancer cells in my abdomen. I was bedridden most of that time and am using a walker to get around now, and am weaker physically than before that time in the hospital. I hate being so dependent on my husband....am used to being a strong independent woman! Quality of life is my biggest issue right now!
Wondering what it will be like to transition to actual "chemotherapy!"
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PJBinMI
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lots of stuff going on for you… I had the sister drug Taxotere back in 2005 before MBC.. it was tough but maybe was a big dose vs the MBC dose is usually trying to make you feel better only. I have just found out all my cancer has spread all around my abdomen… liver outside my bowel… etc.. so I need to try new drug too. I will try cape first with one week on one week off… but I only have 1 month before leaving for a big trip to nz and if this doesn’t work… we could be searching around for a chemo… might be taxol. Did you just fail on cape? Wondering what the usual line up is? I am wishing you loads of luck. And 18 year run sounds amazing. I am only 2.5 years in and can’t imagine this going on more than a few. What a long horizon you have had!
Thank you for your response to my note! I really appreciate hearing about your experience with Taxotere. It hit me later yesterday that I am alllergic to trees, and the taxanes are derived from tree bark (from Pacific yew trees) and that might be a problem. I've not been on anything other than standard drugs for E + mbc and bone mets: Letrozole and Zometa at first, got almost 5 years from the letrozole, then over 9 years from Faslodex. Switched from Zometa to Xgeva as soon as Xgeva became FDA approved Ibrance for a few cycles but it damaged my lungs. When faslodex failed, I was put on Exemestane. I hope you get to go to NZ! I'd love to travel there! I've been to Europe 3 times, but nowhere in the southern hemisphere. And I am feeling too tired to travel these days.
hi! 18 years is amazing! With your independent spirit, I think you will adjust to Taxel. I had 6.5 years on pill forms: Ibrance and Piqray. My small tumors in liver started to grow a bit. Onc suggested I go on Taxil. In hind sight I should have asked a lot of questions to find out if there are anymore pill forms. I trusted him and asked no wt in that reward. Taxil isn’t bad. But living with hats and wigs is difficult for me being it’s long term. But they are comfortable and cute. But not as comfortable as just having my own hair. It took a month to loose it. I still have eyebrows and eyelashes.
I am never sick from Taxil. But my energy level had been a big change for me. I too keep very busy and involved in family, friends, church and sub at schools.
Now I look for an arm chair after exerting myself a couple hours. No shopping till I drop anymore. Just a few hours then home to hit the arm chair. I have been on Taxil since end of Sept 2022. I had scans last week no progression at all i bones or liver. It works but I would take only after everything else has been exhausted. I go every single Wednesday. No breaks. I am on it until it quits working. Neuropathy I lower end of fingers has just reached a point where my fingers nails are turning very whitish. Onc lower my Taxil dose 25% . I wait to see if this will help with tiredness and my fingers. And hope it still works If so, I think I can live with long term.
Please ask your onc to give you the lowest dose possible and please immediately buy Jane Mc Lelland how to starve the cancer with ferroptosis and read asap. You have a chance!!! 🙏🏻
Sorry to hear your news! I had taxol my first time around in 2013. Took 2 weeks for hair, eyelashes and eyebrows to fall out. I got Neutrogena and wound up in the hospital. But today there are meds given preventing that. Otherwise it wasn't that bad. Alot of fatigue with anti nausea meds given through IV along with steroids. But, very effective treatment. You will adjust! You are strong ! Love and hugs,Marianne
Hi. I was just on nab-paclitaxel (Abraxane), a form of taxol....is that what you will be doing? I didn't lose all my hair but it thinned considerably over the few months.... on my head, as well as my eyebrows and lashes. The other side effects were pretty tolerable....tiredness was my main issue, and after several infusions I experienced some neuropathy in my feet. I didn't have any gastro issues, so no nausea or loss of appetite. I did have diarrhea once or twice but not consistently so honestly I don't know if it was related. My cancer responded really well. Wishing you all the best!!
I am on Paclitaxel since mid-September 2022 after progression to my liver while on Ibrance and Fulvestrant - it was in bones only before progression. My first scans at the beginning of December showed shrinking of lesions/tumours, so I'm very satisfied. I lost most of my hair after 1 month of treatment. Lashes and eyebrows have thinned but are hanging on. Have lost body hair too which is a welcomed side-effect😊 I just have a bit of neuropathy in finger tips, which doesn't prevent me from doing anything and my neutrophils were low at 3rd treatment (I was 3 weeks on every Wednesday and one week off). I was missing 3rd treatment most of the time but still had shrinkage. My oncologist had lowered my dosage by 30% and I was able to get 3rd dose in this cycle. Starting in New Year, dosage will just be lowered by 20% and will switch to 2 weeks on and 1 week off. The results have been good so far and well worth the minor side-effects, for me anyway. Good luck!!
Thanks for letting me know how well you've done! This change from E + to TN just came as a total shock to me. And going on chemo after so long not needing it.... I'll adjust to whatever but it's encouraging to hear about it being effective and not so rough.
I have been on IV Taxol since March 2022. Got a port - not a big deal. Pre-med infusion first to avoid allergic reaction (which I did have once) is Benedryl, Prednisone, and Zofran. This is about 30 minutes, then Taxol is an hour - they slow it down to avoid allergic reaction. The allergic reaction was caused by me stepping down my day before steroid to zero so now I have to take a steroid the night before. It wasn't that bad, my face got red and it scared my husband.
My doc has me taking Pepcid, Claritin, and L Glutamine every day for side effects and I have had very little problems with neuropathy..just some tingling toes. I do 3 weeks on and one week off. The side effects are predicatable and not horrible..manageable once you learn the pattern I think. My CA15 dropped from 800 in March to 50 but it is creeping back up again. My scans are clear so we will see what the new year brings.
I have some posts about this on my page you can read. Good Luck!
And yes, I lost my hair/eyebrows/eye lashes..my hair is coming back on my head and I look like a baby duck but so far no eye lashes or eyebrows. I did appreciate not having to shave on our recent trip to Hawaii though.
I'm so glad to read so many positive expeeriences here! Thanks for sharing so many details. I have a port. Haven't needed it since I switched from Zometa to Xgeva for my bones, but I've had it flushed about every two months "just in case." Ports sure make IVs easier. I already take Clairitin, and have used benedryl so often that I joke my parents should have bought stock in the company that makes it! Is L Glutamine for neuropathy? I'm on an Rx med for that (can't think of the name at the moment)
What a twist to your story! I have no experience of this but hopefully some other ladies with TNBC will weigh in here. It doesn’t sound as though Taxol would be too debilitating for a trouper like you, fingers crossed- perhaps you will feel stronger as it kicks in. In any case, I always feel it helps my husband to feel that he is doing something useful in looking after me, so try to enjoy it if you can.
I'm currently on nab-paclitaxel (Abraxane), which is the protein-bound form for taxol. The literature says there are fewer side effects than taxol, and other ladies who get chemo when I go in have switched to this form when they can't tolerate taxol. I pre-medicate with claritin at home before the infusion, and also for the next two days, and I get a small zofran pill at the infusion center, but I've heard that nausea and vomiting isn't often a side effect with Abraxane. I get body aches the two days after the infusion, and my oncologist recommended dexamethasone, but I'm going without for now. My mouth gets super dry, so I've started using Biotene mouth wash. I've also started developing some brown rashes on my belly, but they're not bothering me too much. Also got scans last week and it seems that tumors are shrinking! I also ice my hands and feet for 30 minutes before the infusion (about the time it takes for the pharmacy to mix the abraxane) and 30 minutes after the infusion during the drive home - this is supposed to help with neuropathy, which is a cumulative side effect of abraxane. I also am experiencing hair loss and eyebrow loss which I did not expect. Best of luck with the new treatment!
I had Abraxane myself but it worked really well so I’m officially a fan of taxane. My hair did fall out quite quickly but I bought a wig and knitted a couple of hats to wear at home. My eyelashes grew back but not as lush as they were and my eyebrows are there but very sparsely. My hair grew back but it’s thinning out again on Exemestane. I still have the wig and I’m wondering if I’ll be wearing it again.
I did experience numbness in my extremities but apart from a small area of tingling on a section of both feet there’s no residual problems. Abraxane didn’t require anything else to combat side effects and the infusion itself took about 30 minutes but I usually sat in a chair for a lot longer than that while the nurses worked their way around the room.
I’d certainly have Abraxane again but I’ve been told I won’t because of the neuropathy which was very mild. As my mets were moving rapidly up my spine to my skull and Abraxane stopped that I only have positive things to say about the IV chemotherapy but I know others prefer not to have it.
I didn’t have a port because I didn’t understand what it would entail and I was nervous about it but I’d definitely have a port put in next time, if there is a next time. I’m not eight years into this journey but I’m very happy to hear you’ve done so well. It adds credibility to what the doctors say because while they can’t predict how well each will do, they do say ‘people are living for years now’ and you’re evidence of that!
Thanks for your very encouraging note! I asked my onc about having Abraxane or Taxotere instead of Taxol, but she wants to go with low dose Taxol. I do have a port, and like many others, I recommend getting one! It makes IVs soo much easier, and especially for getting up and heading for the bathroom! Arms are free for moving around and it just feels more "normal." I got the port almost immediately after diagnosis so have had it nearly 19 years. It's been at least ten years since it's been needed for an IV, so I just have it Flushed every 6-8 weeks, very mild needle pricks. My onc also suggested I get a second opinion at the closest Comprehensive Cancer Center, and is cointacting them to set up an appt with a bc specialist onc. I've done that twice before and it is very comforting to know we're going in the best direction. Not that it's ever fun but it helps to know we're doing what makes sense.
I am sorry you are going through a rough patch with your disease.
How was it discovered that your cancer had changed to triple negative?
I have just been through treatment for a new primary TNBC grade 3B while my secondaries are not. Post op it was discovered (via an ultrasound then biopsy) that the TNBC has spread to my lymph nodes but I am now back on Capecitabine to (nervously) “watch and wait”.
Thank you. My onc had cancer cells from mets found in my abdomen tested. Neither of us expected TN but were hoping there would be some other factors that could be targeted. I've been very fortunate so far, with any progression being very slow, and manageable with hormonal meds. We'll have to drive about 55 miles each way to the cancer center, once a week for chemo. Fortunately, my husband and I are both retired and have time for that, but I don't look forward to the drive home after treatment!
Thanks for letting me know. My disease is bone only so I think I’d need a bone biopsy to check if it has changed to TN. I’ve been through a few treatments that haven’t worked so I’m thinking perhaps it is possible that it may have changed to TN, given my new tumor was TN.
dear PJBinMi, thank you for sharing what seems so strange. I, too , have converted from ER+ to TN. Apparently it happens as the cancer cells evolve and change.
I was on taxol long before this conversion happened. Yes I lost my hair but it did come back. A nurse watches you for first 15 minutes or so of infusion to be sure you don’t have allergic reaction.
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Estrogen posative now changed to triple negative any advice please 
F/u to change of plans
Goodbye Xeloda, Hello Taxol or Abraxane
