Hi, KeepSmiling, and Everyone else who gets just the weekly Taxol/Herceptin
Here is my experience...
I finished 12 weeks of Taxol in April 2017 and started shedding from week 9 until way after I was finished....by mid July I had lost probably 75 percent of my hair and it was so wispy looking that I finally went to the hairdresser and had her cut it down short to the area of new growth---about 1 1/2 inches was what I ended up with but honestly it was such a refreshing cute pixie cut that I walked out of the salon with a big smile. I was expecting the hair to come out all at once but for me it was strand by strand....I kept trying to hang onto it just so I wouldn't be bald while exercising or playing tennis but eventually I just couldn't stand the way it looked anymore. I wore a wig for the last two weeks before I threw in the towel and got the pixie cut. I LOVE not having the daily maintenance of long hair! Men have had it easier than I ever imagined. And its growing fast and is so nice and healthy! I do intend to grow it back out again but only to a short bob. I've always had long hair but I look younger in the short hair. If I ever have to go thru this again, I will not fear the hair loss like I did this time.
I was diagnosed in March of this year with IDC, Stage 1, Triple Positive, Lymph Nodes Negative.
Went for a Bilateral Mastectomy, no radiation 🙂 Underwent Chemo Weekly with Taxol and Herceptin, was done last week with no major issues, thank god. Will be taking Herceptin once in 3 weeks for next 9 months.
I have a very thick long hair, cut it short and noticed hari started thinning out in the 4th week of Taxol and Iit is still going on. Purchased an expensive wig and didn't use it yet. I was told that I will loose all my hair and at one point wanted to shave my head but changed my mind thinking will see how it goes. I am glad I went with my instinct. Have put on around 20lbs and belly weight sucks. This is my main problem and I am hoping that it is temporary. I took it easy all these months, planning one day at a time, took off 3 months and last couple of months working part time from home.
Hi - I finished 4 rounds on 3 week interval of Epirubicin and Cyclophosphamide and on my 7/12 on Paclitaxel which i do weekly. I lost my hair on my 2nd session of chemo, shed some tears more than my hair but it has started to grow back. I did notice however that it has started to shed again now that I am on Paclitaxel. Not as significant when i started shedding. I got my eyebrows tattoed with the expectation that my brows, too will shed. So far they haven't but have read here that shedding doesn't stop fully when chemo stops... so best to prepare 🙂 My cousin who is also a breast oncologist shared to me - Every hair that falls is a cancer cell that dies, every hair that grows is a year added to our life! So let's celebrate the hair loss 🙂 it means the medicines are working! Cheering on everybody here!
I finished chemo 7 weeks ago, (12 weeks paxlitaxel and will now continue with Herceptin until March 2018) my experience is as follows; Head hair started coming out around week 4/5 in handfulls then suddenly stopped, although all body hair went completely. I still had a good top covering of hair on my last day of chemo and all eyebrows and lashes so thought I had got away with it! Within 3 weeks of finishing chemo the remaining top layer of my head hair fell out, but luckily there was already slight re growth underneath so I was never totally bald, but did eventually lose all of my original head hair, albeit in stages. 4 weeks post chem and I lost both eyebrows almost overnight, but they have already grown back. Just today as I went for my last Radiotherapy session I noticed that most of my eyelashes have now gone too! Also some of my fingernails and toenails went black about 2 weeks after finishing chemo, so for me most of the side effects came after finishing chemo, I was suprised as nobody warned me that these side effects can happen after finishing treatment. Good luck with the rest of your treatment.
I am currently starting week 9 on weekly taxol and every three week with herceptin and perjecta. So far, I haven't loss all of my hair and still have my eyebrows. Does anyone know if I will continue to lose hair?
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
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
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 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!
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
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.
Do you still have these weekly chats? I was diagnosed early october with BC and am undergoing weekly taxol and herceptin treatments.
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.
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!!
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.
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.
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
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!
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.
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.
sisters in this journey.
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
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?
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.....
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.
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.
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.
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.
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?