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Weekly paclitaxel (taxol) and hair loss

122 REPLIES 122
James731
Member

Re: Weekly paclitaxel (taxol) and hair loss

Just the 12 weeklies. Then I’m done. 
I had a unilateral mastectomy for stage 1B invasive ductal carcinoma.  I had a huge DCIS mass with some microinvasion.  After surgery, they found just a little invasive foci so they recommended the Paxil for 12 weeks.  Tomorrow is week 5. So far no hair loss, my body hair still grows, albeit slower than usual. No neuropathy bc I’m cooling my hands and feet during the taxol.  Oh yeah, I’ll do herceptin through next July once every three weeks. 

angela1234
Member

Re: Weekly paclitaxel (taxol) and hair loss

@James731 

How many rounds of taxol you will have? I will have 4 rounds of EC after 12 weekly taxol. 

James731
Member

Re: Weekly paclitaxel (taxol) and hair loss

I’m going for my 5th Wednesday and haven’t lost anything yet really.   Using dignicap 

angela1234
Member

Re: Weekly paclitaxel (taxol) and hair loss

@James731 

Use coldcap, it worth it. I will have my 6th Paciltaxol on Thursday and I did lose 5% of my hair. 

James731
Member

Re: Weekly paclitaxel (taxol) and hair loss

Did you use the cold cap?  I’m starting 12 weeks of taxol next Wednesday.  I don’t want to lose my hair. 

Annie Denise
Member

Re: Weekly paclitaxel (taxol) and hair loss

I am on the same regime currently. Have had 4/12 so far plus am having Herceptin. Not too bad but feeling really cold (I am sitting with fire on in coat, sweatshirt, woolly hat and two pairs of socks with a duvet over me! Also some Leg pain…. But Chemo is my friend and I will always remember that.

Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

Had both Taxotere and Taxol and lost my hair both times but came back. 

Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

I had chemo twice. ( Metostatic breast cancer) I had Taxotere first time .Taxhol second time.all my hair grew back but it fell out completely both times. But yes it's suppose to grow back. It won't be the same color probably but it is usually very soft. 

Masha05
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi,

 

Several months gap from chemo and when you start Taxol again did your hair fall out or just thinned? I had two AC and my hair fell off. Then there was a two months gap as I did the surgery. My hair started to grow a little. But I have to now continue Taxol weekly. I am afraid that my new hair will fall out. If so will it grow back again?

 

Thanks

M

bobbysue
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hello! 4th week of Herceptin/Taxol.

Try Baking Soda with a little water( like a paste). I used a cotton swab, as I had spots all over my arm. It took the itch away and swelling. Still have the marks, but I feel much better. Try an organic store for the Baking Soda, that’s the best way to go.

God bless! 

Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

Cdc1811 thank you for commenting. Yes I do have a good support system. But have a lot of other issues to deal with. I'm in a small mobile home. Was just me and my brother after husband died. I needed my daughter very much but had to take in her family of five. Needless to say barely one person helping me with bills and not that much. My whole house is occupied. I love them all so much but way too crowed here.
Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

That comment was for Pinklily from hopeful61
Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

Thank you for your kind words. I did great through the first six then I got lymphedema and that is really a pain to keep under control. I am now about 18 treatments in and lost both big toenails and n.ow I think its affecting my fingernails. Have neuropathy in hands and feet but vitamin b6 helps with that. I'm getting tired all the time. New Pet Scan tomorrow. That will determine how much stronger I can be. If its good she is taking me off Taxol for awhile but keeping me on Herceptin. Good luck to you and God Bless. Keep in touch. I didn't even know I had replies till just now.
kathyx
Member

Re: Weekly paclitaxel (taxol) and hair loss

I lost my husband of 30 years 3 years ago and actually I'm happy that this didn't happen while he was alive as it would have upset him so much. Sometimes it's easier going through stuff on your own rather than having to cope with other people's worries which is why I never told my elderly parents when I had breast cancer back in the 80s. It was easier for me to deal with it without worrying them and I've always felt that it was one of the best decisions I ever made.

pinklily
Member

Re: Weekly paclitaxel (taxol) and hair loss

Lovely Hopeful61, my heart goes out to you, I've been married 45 years and can't imagine how I would cope without him by my side going through this, I hope you have a close family to stand by you.
Have you had any other side effects from the taxol in your hands or feet? I've just finished EC and should start paclitaxol on the 16th January, but I'm desperate to know what side effects people have experienced from it.
Try to stay strong, I think we all suffer with our own demons when we have cancer. I have to make the choice of stopping treatment and having a short but good quality of life for a few years, or going on with the treatment and being left alive, but with poor quality of life.
I'm sure there are people like us, who value our husbands and never imagine them not being there with us. Just sharing makes you such a brave lady, I hope I can carry on and be as brave, you are indeed an inspiration to us. xx

Janie2503
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi, my hair started falling out on cycle 10 of 12 of weekly taxol - I finished on 4th December and I’m still really shedding, very thin on top especially... These comments have really helped as I can see I’m not the only one it’s happened to! I can’t wait to see my hair coming back, whenever that may be!
Mercier100
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi Thommo79

 

Just wondering how your treatment went.  I'm on the same but I didn't cold cap now I'm paranoid that my hair won't come back.  Do you know of anyone who didn't cold cap and got theirs back?

Mercier100
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi there cdc1811 and other ladies on weekly taxol- 

I notice you say your hair started to grow back recently.  I'm on 12 weekly taxol and 3wk Herceptin.  I have a very wispy covering of fair hair.  I'm concerned this is as good as it is going to get.  How is your hair growth?  I want it to have a normal covering at some point and I'm getting concerned.  

 

Did anyone else have this type of wispy growth that changed into something more normal.  I didn't do the cold cap because I thought it might be best to ensure the chemo got the scalp and I hate having a cold head.  Regretting it now.  Anybody in the same boat with a success story for me?

Regards

cdc1811
Member

Re: Weekly paclitaxel (taxol) and hair loss

I’m so sorry to hear you are going through such an awful time and facing BC again especially after the loss of your husband.  Life can be so cruel.  My Mum discovered she had another primary Breast cancer two months after my dad  died. About a year later as she waa finishing treatment I was diagnosed. I’m Er+ but not HER2+ 

 

  I just wanted to send a massive hug to you..  Do you have a good support network around you.  I have found the forums invaluable as people really do have some idea of what we’re all going through.  I’m  now on weekly Paclitaxel but on a reduced dose of 80%- my hair started groing back when I finished AC and I’ve still got a fluffy growth so not sure if I’ll keep mine either.  

Please let us know how you are getting on xxx

Hopeful61
Member

Re: Weekly paclitaxel (taxol) and hair loss

I have Her2 +++was in remmisson for almost a year had 14 lymphnodes removed (axillary nodes) and I think around 30 rds. Of radiation. Now its back and I have 4 small tumors but not on any organs. I am on taxol, herceptin and perjeta every three weeks and taxol weekly supposedly smaller doses. I've had two big treatments so far which u could say. After my 2nd big treatment I starting losing fairly good amounts of hair( that I just got back)I'm worried cause this treatment is ongoing and I feel like my time is running out. On a good note I'm still eating and havent lost any weight. I just wanted to share because I don't know anyone who is personally going thru this. Just wanted some feed back from anyone who can make me feel better about this. To add it is Oct. 24 2018 and I lost my husband of 31 years on the 4th of July this year suddenly of a massive heart attack and was told in August my cancer is back. I too have the facial flushing from steroids.
cdc1811
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi Lindyloo Ho Bonnie
Hi thanks for your replies regards to the facial flushing. It does seem to be a common issue. I’ll mention it before my next weekly cycle. Will ask about the Aveeno and QV cream too. I have some Factor 50 somewhere so will dig that out and start using it daily. Great advice. . X
Bonnie52
Member

Re: Weekly paclitaxel (taxol) and hair loss

I have the same problem and today the nurse at the chemo day unit gave me a couple of creams that should help. They ar ethe Aveeno moisturing cream and QV cream. Both were free so I don't have to do to the shops! Worth a try. I also use sun cream factor 50 whatever the weather when I go out and that helps

LYNDYLOO
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi CDC regarding red face it is down to the steroids they give you before the treatment. I have the same problem for a couple of days after each treatment think I had been out too long in the sun.

cdc1811
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi I started my first of nine weekly Packlitaxel yesterday. I had to change to this regime after my first dose of docetaxel (after 4 cycles of AC) caused a severe reaction - hand/foot syndrome and ) could hardly walk spuds to blistered and sore feet.
I, not worried about hair so much as mine started growing back recently so I imagine even if Inkose it again it won’t take too long to to grow back. I want to ask if anyone has had a bright red face whilst on P? I thought I wa having a hot flush this morning but my face (and chest area to a lesser extent) has remained bright red! I could stop traffic! At least with the hand/foot syndrome the redness was less noticeable to others! Just hoping it will go down soon as I don’t want to look this way for another 8 weeks!!
ACBTNBC
Member

Re: Weekly paclitaxel (taxol) and hair loss

Cold capping can be very effective, I've been using one, you wear 30 mins before chemo and up to 90 mins after, wearing hats after treatment or sun glasses on your head does not affect result?. I've had 6 sessions so far, no hair loss
Dave79
Member

Re: Weekly paclitaxel (taxol) and hair loss

I'm sure it works. Just the process is very strict. Blew me away with the care process involved.. not everyone loses there hair during chemo either. I'm happy that people found something that works for them. 🙂
SallyG63
Member

Re: Weekly paclitaxel (taxol) and hair loss

Research is not the same as doing.

I'm halfway through paclitaxel and my hair is thickening up again . I cold capped through 4x EC and the heatwave and have kept at least 75% of my hair.

Another lady I saw had 12 weeks of paclitaxel cold capped throughout and lost nothing.
Dave79
Member

Re: Weekly paclitaxel (taxol) and hair loss

Cold Caps seem very strick, the process requires alot of effort not only during but months after to be effective. Just one hat on a cold night or your sunglass held on top of your head to ruin its effect. Call a company they will explain the nuances. Perjeta is a targeted drug used to fight her2 positive breast cancer. Herceptin does the same as I've seen people asking above. They are taken in combo with chemo drugs usually taxol or taxotere as well as carboplatin. My wife was going to attempt cold caps but was turned off after the process was explained. Good luck all and I'm pretty well versed ask a question I'm done my research
Sallysue
Member

Re: Weekly paclitaxel (taxol) and hair loss

what brand of cold cap and what is an alice band?
Sallysue
Member

Re: Weekly paclitaxel (taxol) and hair loss

I had great relief from neuropathy with acupuncture.
Sallysue
Member

taxole hair loss and cold capping

If you did cold capping, what brand did you use? Was the cold bearable?

Duerden
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi I am on week 2 of taxol I have been told I will loose my hair and I won't so only time will tell, didn't try the cold cap it out so much time on your treatment.

i looked at it like this treatment is hopefully saving my life so what is loosing hair it will go back.

i am 62 not a young person which I could imagine effecting more.

never hear of this perjeta will look it up.

i am on same treatment as you plus I am have a acid injection every 6 months for 3 years.

after the taxol I am to have radiation therapy but haven't asked how many etc will cross that bridge when I come to it.

i wish you well in your journey I haven't found mine to bad yet and will keep you updated on my hiarloss if any I have been told week 2/3 .

take care cin up.

🙏😜

Duerden
Member

Re my journey.

Hello I am new to this just joined today don't normally join anything like this, but thought I would put my experience down as I have read loads and found some very useful.

all so a lot I have found are years old.

 

so to start I had 2 breast lumps one which I found and say someone sent it to me, you see my brother has just died of prostrate cancer , which could have been avoided. It's a long story which I am not going into details but 

if some one at some hospital had passed a message on to his doctors 2 years ago he would still be hear.

we are not miracle  works and mistakes happen. 

 

So one morning i woke up to a very small lump on my left breast thought Nothing of it and would normally have not gone straight to the Docters, my normal thoughts would have been it a little cyst and will go away in a few weeks.

but no due to my brother I went straight away, with in 10 days I was at hospital having all usual test!

to my amazement with in 7 hours I had had I don't know how many mammograms, scans and a biopsy.

my head was blown away. They actually found 2 lumps and as it happen there was a big one at the back grade 3 already and as they put it didn't like the look of it and it was hiding away, thank goodness for the small one who I say God sent. Someone did anyways.

long story short had to have 2 operations, found to be connected to the prostrate cancer have all the receptors family now having gene testing. My brother just died at 68, my father at 62, his brother 94 that's good there dad at 78 and his father at 50ish. I am the only girl in the family .

i am now on 3 weekly herceptin and Taxol every week for 12/18 weeks depends on how I deal with it. 

Also I am on a injection every 6 months to protect it from going into my bones or hopefully kill any that might already be there, only time will tel.

my effects do far are last week on tues had my first dose of all 3 lol.

tues ok Wednesday well hyper they said it was the steroids. Thursday what a come down where had all my 

energy gone felt really off ache all the time felt like really bed flue didn't like food Didn't taste sane at all, coffee tasted awful so got a lot of juice in.

found out with not having as much coffees got bad head so now drink a bit more must have been lack of caffeine.

friday wasn't as bad as Thursday but still not good, sat came to a bit had a lie down afternoon so I could go to my sons BQ after football he had just arrived home he works abroad and it was his birthday 6th he was 35 my middle one.

sunday managed church for a few hours had  BQ we had people over from Chicago but came home felt achyand a bit off Monday not to bad. 

Today Tues was my second dose of just taxol went well but was very tired, so went to bed when I came home and apparently you could hear me snoring down stairs, so will see what tomorrow brings.

really hope this helps someone just starting and I will continue to put on every week, I do really say how it is no sugar coating I can't see the point. So far I have found it's no where near as

Thommo79
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi teach124, I am on week 6 of paclitaxel. I haven’t lost my hair but I am cold capping. I hear that most people lost in the first two weeks if they are going to at all but I may be wrong. I am also her2 positive and tali herceptin every 3 weeks for a year. I haven’t been given perjeta and just wondered if you are taking that as part of a trial or for other reasons. I had a 15mm Tumoir removed before starting chemo, no nodes involved. My treatment plan is paclitaxel for 12 weeks and herceptin for a year. Should I question about perjeta? Thank you
Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

Thank you ladies..am rubbing cbd balm into my fingers, however, am on a reduced dose already, so not a lot of choice....still have numb feet from 2001 ...

 

 

mx

Lane
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi ladies the muscle aches and pains are quite painful at times mine seem to start around treatment 6 of 12 hot baths seemed to relieve this a bit and some painkillers; I also had the itching in both arms and the antihistamines seemed to help a bit also some unperfumed moisturiser, hang in there girls it all seems to ease off a few weeks when chemo is complete xx
Confuseddaughter
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi Moijan

Sorry for the delay just seen your message but thought I'd reply. My mum is on this regimen and last one Thursday (countdown!) however she has started getting sore muscles, bearable but more so tightness in her joints.

Side effects wise other than tiredness mum was fine untill about two weeks ago when she got a rash on her arm that was a bit inflamed but has died down but is still itching her like mad! oncologist wasn't alarmed and just advised her to take the steroid cream and Antihistamine and upped mum's pre meds, hope you feel better xxxx
Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

Re Paclitaxel ....doany of you get sore, aching muscles at all’? I find under my bra straps and along under my bra at the back is very tender.

 

also I get a reddish arm on the 3rd day which I thought could be cellulitis, but don’t think so now as it goes away...but my arm muscles hurt if I do too much.

 

be greateful to hear if others had the same?

 

thank you

 

Moijanx

Bald Head Day
Member

Re: Weekly paclitaxel (taxol) and hair loss

Message for Teach 124 - I have just had third cycle of epicirubicin and cyclophosphamide and will then receive Herceptin and Perjeta with - Docetaxel, I would prefer Paclitaxel to Docetaxel but am told I cannot have that combination, can you please tell me where you are receiving your treatment?  I have a DCIS and HER2 pos.  I hope you are doing well.

Best wishes

Jay68
Community Champion

Re: Weekly paclitaxel (taxol) and hair loss

Do mention numbness to your oncs - if it gets too bad, it may not be reversible after treatment. I still get neuropathy in my finger tips and toes - over 6 months since chemo finished. I'm now on herceptin injections and asked onc if it was this which was causing it but she confirmed no - it would be lingering effects from chemo! I'm so hopeful it will go eventually.

Another good cream for sore hands and feet is the udderly smooth (with urea) - you can purchase on line. Also bathing in epsom salts is good.
Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

Yes, I’ve been burying my hands in a bag of frozen peas...but it’s rather painfulxxx

Fluffy4g
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi mx,

 

i know now a lady who was having issues with neurological numbness in her fingers and toes.  To prevent it, she just used regular ice packs icing, wrapping it completely around her feet and hands, icing off and on every 20 minutes and it worked for her.  No fancy methods.  Hope this helps.  I may consider it because I do feel  little tingling in my toes right now.  Nothing big but I have one more treatment of AC then 12of T before I am completely done.

Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

Ladies, sorry to be boring here but did any of you get bright red feet? Sore fingers etc? Have recently discovered that the Christi usefreezing gloves and socks...my Hospital doesn’t. 

 

Do do any of you use these?

 

mx

Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

Thank you for all your advice....I was really fussy last time, so far it does seem to be working XX

Moijan
Member

Re: Weekly paclitaxel (taxol) and hair loss

 
SBH85
Member

Re: Weekly paclitaxel (taxol) and hair loss

 

I had weekly paclitaxel for 12 weeks and I finished it in November 2017.  I cold capped all the way through and it was 100% worth it.  I have kept almost all of my hair. I'd say I shed les than 10% which is a brilliant result.  Do note that every one is different and they say that there is a 50/50 chance of it working.  It did wonders for me.  

 

What I would say is, persevere with it.  The first 15 minutes of wearing it are the worst, but after that, it was fine - I kind of reached a plateau if that makes sense.You really get used to it very quickly.  I was really meticulous with my planning and I think that really helped  and what i would advise is the following:

 

- Wear warm clothes -  Take a big scarf, blanket and if you have thermos flask with a hot drink in it as this will help keep you warm while your head is freezing!

- I had to take my own conditioner (try to make sure it is one without too many harsh chemicals) 

- a comb

- a spray bottle (like the one that they use in the hairdressers) as you will need to prepare your hair.  Some nurses offered to do it for me but mostly I did it myself.

- A couple of alice bands

- A hat (to wear when you finish on your way home).  I even wore a shower cap underneath the hat.  I didnt wash my hair until the next day though as I was too exhausted from the chemo on the day I had it.

- I used a small suitcase with wheels to carry everything which was really handy

- The most important thing with the cold cap is the fit.  This is key.  You have to make sure that it fits tightly and correctly. Be fussy.  Don't let them start it, until you are sure that it fits perfectly.  The top of the cap needs to be touching the top of your head otherwise it won't work.  I used an extra alice band on top of the strap holding the cap down to help secure it even further - I don't know if that actually made a huge difference but I felt that it helped me.

 

I hope it works for you too and that this is helpful.  

 

All the best x

 

 

Kristylamar
Member

Re: Weekly paclitaxel (taxol) and hair loss

May I ask if you did anything in particular to keep your hair from falling out ? Nine weeks is great. Minimal washing certain shampoos?
LMRS
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi All,

I begin my 12 weeks of Taxol plus Herceptin on November 22nd. I am going to try the Chemo Caps that may help prevent some hair loss. Has anyone on here tried the caps?

Mamagib
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hi justkelly— I have the exact same stage 1 IDC negative nodes diagnosis. I have the same plan on treatment and just finished treatment 2. So far so good. I actually bought an expensive wig also as I have been warned and want to have it ready if needed. I look forward to your further posts and successful treatment and words of advice!
CryBaby
Member

Re: Weekly paclitaxel (taxol) and hair loss

Hello Julieo

 

Same here with the lashes and eyebrows.  My regimen was same as yours (weekly Taxol x 12 then Herceptin every 3 weeks for a year).  Worst side effect for me was diarrhea beginning the second week and now 4 weeks after chemo completed still have episodes which make it inconvenient to say the least with morning appointments and errands.  Back to the hair loss.  I started losing hair by the handfuls week 5 of Taxol.  Went to salon to get it buzzed off.  Thought I was going to keep my brows and eyelashes but 4 weeks after completing chemo I've noticed lashes are thinning and brows as well.  Geez, I'm disappointed that the physician or nursing staff did not mention that I could have delayed hair loss.  Glad to know that this is normal. Thanks for sharing.