Am just about to start Taxol and Herceptin – will have 4 sessions of weeklies x 3 – plus Herceptin every 3 weeks (overlapping with the chemo). Am considering trying the cold cap to keep my hair, but am told it rarely helps fully. Anyone got any experience of that?
Am hoping the side effects aren’t horrid and that they dissipate after the chemo stops and the Herceptin continues. Does hair grow back during the Herceptin?
Feels like I’m entering a new world of experience where no one can say what it’ll be like.
Dear Muchhopeful,
I’ve just completed the 6th out of 12 chemo paclitaxol injections and have been finding it very manageable. I’ve also had my 3rd Herceptin injection & these will go on for a year. Have been using the cold cap and finding that also ok. It’s torturous for the first 15 minutes then numb (frozen) so fine. Not everyone is the same though & it adds at least an hour and a half to sessions. It does minimise hair loss in my experience. Side effects from the chemo for me have been minimal with constipation being the worst but have learned to start laxatives straight away. I’ve also stopped taking the anti-sickness pills 48 hrs after the chemo with no problems and doing this limits the constipation. I did have some muscle pain just this week and although sharp the pains were short lived so not at all debilitating. There’s been only a little fatigue but have carried on with normal life activities with little disruption. My hair is thinner but I’ve not felt it’s too noticeable yet although it’s still shedding more than I’d like. I have a wonderfully knowledgable hairdresser who recommended Nioxin shampoo, conditioner and scalp conditioner which is very gentle. He also said to avoid washing your hair more than once a week - use dry shampoo instead and don’t massage your scalp. This is good advice. Im not sure if I’ll lose more but have a wigs and scarves in case. I’ve found this regimen much much easier than I anticipated and I really hope you do too! Good luck & feed back how you get on! Hang in there.
Hi my name is KAHLA I was diagnosed 6 weeks ago and I am currently on treatment number 4 I was a triple negative and have mammory carcinoma. I started as every week taking taxol for 12 rounds today we completed number 4 I still have all my hair and all over and I can continue all my daily activities as normal we have 5 children so it’s a super busy household and I feel that staying strong and not allowing to get weak even though my body aches so bad and the scalp of my head hurts ultimately I’m doing amazing! I own a salon so I’m physically there all day and it really just keeps me feeling good to continue my routines! Everyone is different I have come to learn but I’m so anxious to hear others stories! I’m am finishing the 12 rounds and then will start 4 rounds every three weeks of AC or “red devil” and that is where my fear is… Does anyone else have any feed back?
Sorry that you have had to join us, but glad to hear you are coping well with the Taxol. I had number 7 yesterday and the build up effect is beginning to hit. The last two weeks I’ve had tingling in my hands and then last week also my feet. Yesterday the dose was reduced because of it as they don’t want any lasting problems. I’m also alot more tired and am having to limit what I do.
I had the AC cure first and found it tougher than the Taxol. It is a higher dose, thus the three week recovery period and I found the first week/10 days difficult. I don’t want to worry you as everyone reacts differently, but it is better to be warned.
It is interesting how they decide which chemotherapy drugs they decide to give and in what order - I’ve never read of anyone doing it your way round, maybe it’s something to do with the triple negative.
Hi Kahla, it looks like my regimen is similar to what you are having, but with different order. I was diagnosed in may 2016, got a bileteral mastectomy followed by reconstruction in June and started the red devil chemo 4 rounds every 3 weeks in July. I lost all my hair by the second round of the AC. On October 10, I started taking taxol every week during 12 weeks total. I am at taxol 4 now, but I notice that my hair is starting to grow. It looks like baby hair. It’s very fine and it has a fuzzy look. I wasn’t expecting that, so I am very happy.
I too am gaining a lot of weight . I am having a hard time fitting into my regular clothes, but I keep telling myself it is temporary. Quite honest it is annoying that we have to go through baldness and round shape, but I guess this is the price of cure. I have decided not to do radiation after chemo. I just don’t believe in targeted radiation when all has been taken out and chemo has been used. I know other people who went through this route and it’s been 15 years since. I have to be double vigilant because I had triple negative carcinoma mammary, but I believe there are higher chances of acquiring another complication when radiation is used.
I hope I helped you somehow in your journey. Let me know your thoughts!
God bless you!!
Just had my third treatment of taxel and Herception. I get treatments weekly to lessen the dosage and side effects. I’m doing kinda okay and really shocked. I still have my hair although the nurses tell me I’m probably gonna lose it soon but on rare occasions some women don’t. Days 3 and four after treatment are not great and bc of the pre meds, steroids, I feel spacy and overreact sometimes. Also, I’m having slight weight gain and trouble sleeping but I don’t want to take a sleeping pil bc it am still working and need to get up early and a sleeping poll will make me groggy allyay. I cried all summer when I found out I have breat cancer but had a lumpectomy very successful and am her 2 positive, state two. I’ve come to accept it and feel so grateful to be alive, for my doctors, my kids, my family, my job and def my health insurance and yes, the best therapy, my dog
Hi, I wondered if anyone had experience of hair regrowing after you’ve lost it if cold capping with weekly paclitaxel. I’ve had 2 EC so far but have lost about 80% of my hair and am probably going to give up cold capping. I’ve got one more EC and then move on to 9 weekly paclitaxel. So just wondered if anyone had any experience of this.
Hi primmy yes my hair continued to grow throughout my treatment. I had 3 x fec and 11 weekly taxol. I lost around 50% after first fec and then nothing noticeable. Once I’d finished I had 1 or 2 inch layers throughout my hair - I thought it was where a big lump matted and snapped off but the hairdresser said it was all new growth!
I started paxel too on jan 13 . Two weeks on one week off…i have not lost any hair…it has shed a little but not much…im hoping to be the rare group that does not loose my hair. Im also tolerating it well…
I too had the sore in my mouth so bad I could not eat. They give me some nastin medicine. It clear it up with the first couple of doses. I have done four rounds of A/C. Just started taxol yesterday. Had some very bad days with the A/C. In hospital with fevers, bone aches, mouth sores, neuropathy in feet and fingers. A lot of heartburn and very sore hair. Loss my hair after thee weeks but still have some eyebrows (very thin) and eyelashes. I am hoping to keep them. I have a rare triple negative breast cancer. Caught it early in stage 1a. Did surgery on the 10 October. No lymph node involved so feel very blessed about that. Just want to finish with chemo and radiation to hope to feel normal. Welcome any information or experience!
Beth, how are you doing? I’m on Paclitaxel every week and Herceptin every 3rd week. I haven’t lost my hair yet but today should be #3 chemo. Unfortunately my white blood cell count was too low so they wouldn’t do it. I’m frustrated because I’d like to get this done!
Did your hair come out? And when?
Tess
I grew my hair back then went on taxol. It’s been 3 weeks and my hair is still going strong.
My eyelashes and brows are still bare.
The hair on my body is coming in slowly.
I had 12 weeks on taxol with no breaks previously on fec but changed as it was making me ill I was told by breast nurse I would probably loose my hair so I decided to cut it all off and donate it to the little princess trust where they make wigs for children I just didn’t like the thought of it all falling out , finished chemo in September last year so my hair has grown back ?
Hi, All
I am happy to have found this. I am in the U.S. but I think this will help me get answers. I will be given for once a week Taxol and Herceptin for first 12 weeks, then Herceptin once every third week for 9 months. I was wondering if anyone on here has had that regimen?
If so, does you hair start to grow back once the Taxol is done & you are only getting Herceptin? I am wondering if I will be bald for one whole year.
Thank you and best to all.
I had a mastectomy in February for 5cm tumour that was initially diagnosed as DCIS, but post-op pathology showed invasive cells. My lymph nodes are clear.
I have had the 4th of 12 weekly Paclitaxel sessions, and I am having 3-weekly Herceptin injections for a year followed by Tamoxifen for 10 years. I still have my hair, but it is starting to feel thinner and I am expecting to start losing it soon. I usually wear it short - I don’t know if that makes a difference! My hairdresser is on standby to clipper my hair when it starts to go.
I am not looking forward to losing nasal hair - that sounds grim.
Re other side effects, I have had fatigue, spots, mouth ulcers, nausea, some peripheral neuropathy but not too bad. One of the worst things for me has been losing my sense of taste. That is the only side effect that doesn’t seem to ease off between chemo sessions.
Hi Amanda63 . Yes the loss of taste is not very nice but it seem to come back quickly when you have finished. I didn’t have any feeling of sickness but did have some small nose bleeds but I got some cream to use and it was fine , the perhiperal neropathy is still in my fingers and toes but on the whole not to bad , not to long and you will be finished all sessions ??
I have Triple negative as well. Did 4 A/C and just completed 8 of 12 taxol. I kept my eyelashes through A/C but they fell out after week 5 of taxol. I’m using biotin and rubbing castor oil on my head. Not sure it is helping or not. Some peach fuzz growing on my head. But super slow.
I have an update—I finished my weekly Taxol 4 weeks ago. I did indeed start shedding hair after my 9th treatment and it continues to shed now too—I would guess I’ve lost about 30-40 percent of my hair so far…had a surplus to start with so it still looks okay… eyebrows have thinned, so far still have all my eyelashes and body hair.