Hi I am 33 currently on a regime of weekly taxol and 3 weekly herceptin. This is my first chemo and I see that most people have had some chemo before they start their weekly taxol.
I am week 3 out of 12 and wanted to know about hair loss experience. I have had a tender scalp for about a week with itchiness but no thinning or loss as yet. I realise I am only day 16 post 1st cycle and wondered if anyone had experienced hair loss on this regime? I have read a lot about fatigue and peripheral neuropathy- and am experiencing mouth ulcers and a funny film in my mouth, along with facial flushing out of the blue. Any comments on experiences would be most welcome.
Many thanks xxxx
I had several months gap after first chemo and hair was growing back nicely and then 9 weekly taxol and hair went thin and I have hardly any eyebrows or eyelashes left. They disappeared after I had finished! That took me by surprise…consequently I had sore eyes and used viscotears. However everyone seems to react differently. My nails were fine after using suntan cream… Slight problem with finger tips and toes that took a few weeks to return to normal. but SE for me were minimal. I was very tired. I really hope you too can keep most of your hair. My oncologist warned me I could lose it all but I didn’t. I did not have herceptin.
I had several months gap after first chemo and hair was growing back nicely and then 9 weekly taxol and hair went thin and I had hardly any eyebrows or eyelashes left. They disappeared after I had finished! That took me by surprise…consequently I had sore eyes and used viscotears. However everyone seems to react differently. My nails were fine after using suntan cream… Slight problem with finger tips and toes that took a few weeks to return to normal. but SE for me were minimal. I was very tired. I really hope you too can keep most of your hair. My oncologist warned me I could lose it all but I didn’t. I did not have herceptin. Hope this helps.
Hi Danmac
I am about to start taxol and herceptin treatment next week 5th March and was told by doctor that I would have hair loss so was expecting it to happen straightaway. It would be good to keep in touch with you as we are making same journey. I have heard that the scalp tingles before hair falls out. As your scalp is itchy is there are lotion you can put on it to sooth it which won’t mess the hair up? Also do you use organis shampoo during treatment?
Jeannie
Yes jeanniem that would be good. Wishing you all that best x
Go Tomcat. Thanks for that. I’m around day 18 post first taxol so I’m expecting hair loss anytime soon and I do get a lot of pain at the minute- almost like having bobble in too long and too tight and as though my head is being raked when my fingers go through it- I think it won’t be too much longer and yes, once it starts coming out then it’s being shaved. I’ve already cut it about three inch shorter than I would normally. Good luck with treatment x
Should’ve said hi tomcat not go! Predictive text
That is what am dreading most. Not just because I will look so different but because i also wear contact lenses and will be really prone to infections. I’m getting very dry eyes at the min and wearing glasses most days plus gel tears x
Hi nanmaste. Thanks for that info. I have heard about nose hair etc which I never thought about before! I was so bunged up the other night I couldn’t breathe and then wondered what would happen to all the mucous and dust etc if it went? It’s my 4th taxol tomorrow and I think my hair is thinning- it certainly seems a lot ‘flatter’ and my eyelashes this morning felt almost fuzzy and not as long when I put mascara on. My main symptoms at the min are fatigue- especially four days after, mucositis and bad ulcers which are very sore when swallowing, film like feel in mouth, and generally feeling like my bones are 90 years old. I ache really bad!!! I have had flushing face and acne but I think that’s the Iv dexamethaosne- certainly the spots were and they have been controlled on duac cream. If my hair thins badly then it’s all going. I can’t live wih patchy hair. I’ve already cut it ALOT shorter than I have in the past. I’ll just watch and wait. Thanks again x
Just to update everybody… I had my 4th taxol (and 2nd herceptin) on Friday and yesterday (day 23 post 1st taxol) my hair was coming out thick and fast. If I ran my fingers through my hair it was all coming out. I couldn’t stand it and my head was hurting. My sister came and shaved it off. She said my scalp looked sore and swollen and the hair was so thin. I don’t know if it would’ve all come out but the speed and volume it was happening was freaking me out. My nephew said I had gaps in my eyebrows too- I think he may be right but they are fine anyway.
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Hi nan66. It is strange but it isn’t bothering me yet but then I’ve not ventured out. I just keep walking by the mirror and forgetting! I have a selection of bandanas from Bohemia and wore a little sleep cap last night. It’s my eyelashes I am dreading as they are really long and are a major Facial feature for me. Keep reminding myself it is all temporary and we will fight this xxxx
I am 37 yrs old and start my regimen today of weekly taxol x12 and herceptin every 3 weeks X 1 yr. I will be receiving both today. I would love to stay in touch being we are on the same journey
Danmac10
I am 37 yrs old and start my regimen today of weekly taxol x12 and herceptin every 3 weeks X 1 yr. I will be receiving both today. I would love to stay in touch being we are on the same journey
Hi Bella ,
the last post on this thread was a while ago (about 12 months) the ladies may not be on the forum much anymore if you head over to the chemotherapy monthly threads you can join the March starters for people who are staring chemo in March, you can also pop into the other months threads to ask questions from those further along 
Jen x
Hi there Bellamia!
Good luck with the start of your treatment. I finished my chemo mid May last year and have just finished my herceptin last Wednesday. I haven’t been on here for a while but if there’s anything I can help you with let me know. It is very doable xx
Danmac10 Did you work? Did you lose your hair? So many questions?! Do you have an email, maybe that would be easier if you don’t mind? You are the only person I found so far with the same treatment as me… It would be comforting to speak with you ? Thank you for responding .
Hi there Bellamia! I didn’t work during treatment and still don’t at the min as I’m a hospice nurse and the environment hasn’t been right for me/ I’m mainly suffering anxiety and having cognitive behavioural therapy. Are you having herceptin also?
My hair started shedding around week 5 I think so I shaved it off. I lost all my eyebrows and lashes towards the back end of chemo.
Are you on the younger breast cancer network on Facebook? Ybcn uk for women 45 and under. I was 32 at diagnosis. I do have email but not sure how to let you know it in private?? X
Hi I struggled with fatigue alot. It’s hard to say for how long as I am currently fatigued 12 months later as I’ve just had another mastectomy and recon. I was struggling with burning joint pains especially in my legs- very flu like but these subsided after my herceptin ended so am not sure if that was the taxol or the herceptin!
In terms of bowel symptoms- I had to start buscopan and omeprazole on chemo for cramps and gastric irritation and tended to have diarrhoea more than being constipated. I am now on tamoxifen which makes me very constipated and therefore I take regular laxido and Senna:
Hope this helps. Everyone is different. My Gp said the pains and fatigue were probably more evident because I was younger- if I was older then I would’ve felt like that anyway!
Good luck x
Hi, I have had my second paclitaxel. I can’t seem to sleep the first few days after! My hair hasn’t started to fall out yet. I have very long hair so I’m getting it cut tomorrow. I was told it will fall out. Has anyone experienced it not falling out?
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Hello all! I am new to this site. I just finished my 6th infusion last week. I am currently on a regiment of Taxol and Herceptin. I have 6 more, four hour treatments to go. After that, I will start radiation and have just the Herceptin every three weeks to make up a full year. I started losing my hair two weeks ago. I noticed it felt different, kind of fuzzy like. It is not coming out in clumps but is shedding very badly. I would say I have lost about half of my hair. That makes me wonder if I will have any hair left before completing the Taxol. It normally takes about 24 hours before I begin to experience flulike symptoms, with muscle aches and pains. I do not sleep well for days afterwards. My Dr. has me on a .5 mg Xanax and encouraged me to use Benadryl when I feel wired and know sleep will not come otherwise. I have noticed my eyelashes starting to change. I am currently using Latisse, hoping that will help. The steroids have made me gain a few pounds during this already ever-changing process. Constipation has been a big problem. I use MiraLAX and Colace and it helps. Just so thankful I have not had any nausea or vomiting, which was my worst fear. Sending prayers for all of us to get through this rough patch and see better times!
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