Weekly paclitaxel (taxol) and hair loss

[Gin]

Hi Tess,

I am starting Taxol+herceptin next week for 12 weeks on weekly basis. I am stage I. What stage are you and for how many weeks your treatment of Taxol is scheduled? Thank you. Gin

[justkelly]

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.

[Christina SL]

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.

[Ann Lucas]

Thank you so much for your input.

[Lane]

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 😊😊

[amanda63]

Hi ladies,

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.

Love to all x

[Jeanniewoodh]

Hi Ann

i had 12 weeks of paclitaxol and was started on Herceptin on week 1. I finished taxol at the beginning of October 2016. My hair fell out bit by bit but I didn't quite lose all of it and my eyelashes fell out a month after finishing.  I am now still on Herceptin till July and my hair is growing back nicely. Herceptin doesn't make you lose hair.  

I hope you fair well with the treatment.  I found it bareable xx

[Ann Lucas]

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.

[Lane]

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 😊

[Rona]

I had 6 weeks on taxol.
It's been 3 weeks since I finished. I haven't list a hair on my head. Bold also where but my hair is growing in now.

[Rona]

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.

[justkelly]

Hi, 

I am also weekly Taxol and Herceptin (stage 1 IDC, post Lumpectomy, negative nodes). I just finished my 6th treatment so I am half way done. I was told to expect hair loss so I bought an expensive wig and loaded up on false eyelashes but I have not lost any hair anywhere! No neuropathy, no mouth sores, no crushing fatigue....I feel pretty normal. So if its not too late, don't rush out to buy a wig just yet! 

[Tessscott6]

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

[Ramona Mathis]

Im on day 15 my hair is shedding but i have very thick hair so its not noticble yet.

[Patriciaraikes]

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!

[Ramona Mathis]

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..

[Beth1118]

Did you get 6 infusions in a row,  without any down time in between? I have had 2 infusions so far. They are giving them to me 2 weeks in a row, with one week off, then 2 weeks again.  I am wondering when I will start to loose my hair. Did you have your Taxol every week?

thanks for any info you can give me

Beth

[Beth1118]

Hi

I saw that you started Taxol recently.  Can you tell me when your hair started to fall out.  I have already had 2 treatments, and this is my week off.  Next week will be my 3rd treatment.  Just wondering when to expect to loose my hair.  

[Pepperdine20]

Do you still have these weekly chats? I was diagnosed early october with BC and am undergoing weekly taxol and herceptin treatments.

Thank you

[Pepperdine20]

I know you had your treatments a few months ago but I am only in week 4 of mine.  Because there was no formal study done on hair loss with these treatments, I looked it up and found this blog on line. I noticed you did not lose your hair, it thinned.  I also have thick hair and am of course am wondering if I will lose mine.  Did you wash your hair often during treatment? Dry it? You mentioned it thinned -- but were you able to wear it normally or did you supplement with a wig? Also, did and if so when did you lose eyebrows and or eyelashes?

Thanks so much for any guidance you can provide. 

[Primmy]

Hi riversidedawn 

thanks so so much for your reply. The cold cap must have worked really well for you. I have to make the decision by Thursday as to whether to continue cold capping or not but I've now lost even more hair so I'm not sure. Although I'd heard hair could start growing back on Taxotere I hadn't heard about paclitaxel. I have a dilemma now!!

thanks again.

[riversidedawn]

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!

[Primmy]

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.

thanks

xx

[swampy1901]

Hi LS2

I'm sorry to hear that you have been laid low with an irritating cough - somewhere on other threads here someone has suggested glycerin throat sweeties and generally keeping the throat moist as you can. However I know from personal past experience in my pre BC days that very often after a heavy cold - which in those days I rarely had - that the tickly cough which would rise up in the middle of talking, eating even just breathing was so annoying that when I saw my GP he suggested using an inhaler as an option.

It seemed to do the trick for me - in fact after my long operation with a pipe stuck down my throat - guess what the tickly cough was back!. I rang my doctor and he prescribed the inhaler for me so peace reigns in my house again. It's just a suggestion but we need all the help we can get when going though treatment.

Hugs!

[Think Pink]

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

[LS2]

Help please....

I'm on weekly paclitaxol - three in a row followed by a week off -- and Herceptin once every 3 weeks, and I've caught a bad cough / cold that simply won't quit.  There's no fever or "infection" as such, but it's laying me so low.  The coughing is violent and choking, and exhausting.  It's probably just a bug I picked up from my husband who went on a trip abroad and brought it back as he had it (but not as badly as me).

It's been going on for 3 weeks now, and I've been once to the oncological clinic and they said persevere with the chemo schedule if there's no fever, and so that's what I've been doing.  However, it seems not to be shifting. 

After a major coughing fit during my last chemo session, the nurse suggested that if I was no better by half-way through the week, I visit my GP, but when my husband visited the GP after a few weeks of coughing, he basically was told there's nothing for it but time since it's bacterial and not a virus (antibiotics useless therefore). 

Have any of you out there caught something that simply won't go away? If so, did you manage to shift it during the "week off" of chemo???? I'm beginning to despair of not feeling any better until all this ends.

Any advice you can give will be much appreciated! 

LS2

[Claudiashaw]

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!!

[LS2]

Your entry is interesting because I was told categorically that I would lose my hair on paclitaxol, and that it would happen soon after second dose of weeklies.  I oscillated over using the cold cap, and decided (at the 11th hour) to give it a go. I've found it tolerable (after the first 15 torturous minutes).  I've lost some hair but that could be because the first nurse I had (for first two sessions) did the incorrect timings, and released me 30 minutes too early after the chemo on two successive occasions. I should have worn it for an hour after and did only 30 minutes. The next nurse got it right, and ever since I've been in the cold cap for a full hour after the chemo, and my hair has stayed with me (well, most of it)...  While I'm ready to lose all of it (have a wig), it seems to have stopped falling out. I shampoo only once a week maximum and use Nioxin - 3 products - the shampoo, conditioner and scalp toner. My hairdresser is an expert on chemo hair loss and recommended this (and I since heard that Kylie used these products), and he also said to be very gentle with the scalp -- no heavy massaging while shampooing.

I find it particularly galling that a side effect is weight gain while on chemo, but the nurses said this happens because the steroids (always given in advance of the chemo) make you gain weight. Certainly they make me exceedingly hungry. My stomach growls impatiently and audibly if I don't eat something every two hours or so. Am trying to cut down portion size to keep the weight gain minimal. I am half way through my chemo regime, and have gained 2 kg. Right before chemo, I had lost about 4 kg, so am hoping I can simply lose it again after I'm finished. It's annoying, but the steroids damp down other side effects, so must be done! 

I'm finding it very tolerable and feel very lucky. I know some others who don't have it easy, and that's very hard to hear.  I wish everyone could have it easy and get a cure at the same time...  someone, someday will invent a different way to treat this unforgiving disease. 

LS2

[Parkcityphotog]

It sounds like we are on the identical protocol.  My 4 the Taxol is Tuesday, 2nd herceptin. 

Ive cut my hair short, have a wig on the ready. 

I wear a bamboo beanie to bed, and shampoo gently in cold water. So far, I'm good. However, I was told few retain hair with Taxol. 

My my most recent concern is weight gain. It seems dexamethazone causes puffiness and gain. To this I say, "Please, not one more thing!"  I hit the gym today, but after 80 minutes, it was the elliptical that caused me to feel ill, not the hour of weights prior. 

Im writing a blog about this as catharsis, and to help others.  It is not a morose blog, rather, one of gratitude. 

http://skiparkcityutah.wixsite.com/1in8

sisters in this journey. 

[judith63]

Hi Kahla,

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.

Enjoy the weekend

Judith63

[Redhead05]

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?

[LS2]

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.

[muchhopeful]

I am about to start my first treatment of 12 weeks of the Taxal/Herceptin combination. After 12 weeks i am to continue for 9 months every 3 weeks of Herceptin. I want to go into this with my eyes wide open. Any feedback on side effects would be helpful. I have read all information from clinic but want more first hand experience type help. Hair loss, fatigue, muscle aches???? What can i expect?

[judith63]

Hi LS2,

I had my last dose of AC on Friday and will start 12 weekly Taxol, together with 3 weekly Herceptin early in September. I tried the cold cap for my first AC, It didn't really help and made the whole experience more traumatic so I resigned myself to losing my hair.  My oncologist warned me it would be difficult to perservere with cold capping every week, however everyone is different, so I would suggest you try it.....you may have great results.  I'm curious to see if the Taxol will make me lose the little hair I have left.  I had it cut short 10 days after cold capping and then had it shaved a week later, it was driving me nuts.  Every time I turned over at night I got a mouthful of hair...yuk!!

I'm also hoping the side effects are minimal, especially as it's every week.....

Keep strong and smiling, thisvis just a temporary blip.....

Hugs 

Judith63

[LS2]

Hi All,

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.

Hugs to all of you.

[RoseAnne]

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!

[Mary333]

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?

[Yawdgyal]

I am having diarrhea
And irritable bowel. Just happy not to be constipated 😀

[Yawdgyal]

Hi Shalla, 

good you are done, I hope each day you feel better. I did my 3rd weekly taxol today and about 3 days my hair started thinning. I have long thick hair but my heart is breaking to watch it go. This is my seconds   time it should be easier but it's not. Did you do anything to keep your hair? Was it too thin to wear it? Did you cut it? 

Thank you you so much whenever you respond. I had ACT before so it came out in clumps 2 weeks after and I shaved it and moved on. This time not knowing how much will come out is killing me because I don't know what to do.

thanks again

[Danmac10]

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

[Colleenrae]

Hi Danmac,  

i recently started Taxol weekly and the Herceptin q 3 weeks - I am wondering how long it will take to regain some strength and stamina after I finish the Taxol.  I am hoping Herceptin does not have effect of fatigue also.

[Colleenrae]

I recently started on Taxol and Herceptin, became very constipated after first 2 rounds of Paxil - my doctor said the anti nausea meds which are added to the IV mixtures were the cause of it.  I also had IBS issues before chemo - I find daily fiber ( Benefiber or Metamucil ) helpful.

[Shalla]

I have just finished my weekly Taxol and will continue on herceptin.  I never lost my hair!  it has thinned out quite a bit on top, but I have very thick hair.  another question......Has anyone experienced inflamatory bowel issues?  even blood in their stool?

[Danmac10]

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

[Bellamia]

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 .

[Danmac10]

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

[JenJen]

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

[Bellamia]

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

[Bellamia]

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

[June_BCC]

Dear All

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