Member
Posts: 2
Registered: ‎10-07-2018

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.

🙏😜

Member
Posts: 2
Registered: ‎10-07-2018

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

Member
Posts: 1
Registered: ‎15-05-2018

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
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Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Member
Posts: 100
Registered: ‎27-02-2017

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
Member
Posts: 23
Registered: ‎20-10-2017

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
Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Member
Posts: 1
Registered: ‎09-03-2018

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

Member
Posts: 1,346
Registered: ‎24-03-2017

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.
Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Member
Posts: 1
Registered: ‎23-02-2018

Re: Weekly paclitaxel (taxol) and hair loss

[ Edited ]

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.

Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Community Champion
Posts: 3,286
Registered: ‎04-02-2016

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

Community Champion
Posts: 3,286
Registered: ‎04-02-2016

Re: Weekly paclitaxel (taxol) and hair loss

[ Edited ]
 
Member
Posts: 2
Registered: ‎20-10-2017

Re: Weekly paclitaxel (taxol) and hair loss

[ Edited ]

 

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

 

 

Member
Posts: 1
Registered: ‎27-12-2017

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?
Member
Posts: 1
Registered: ‎06-11-2017

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?

Member
Posts: 1
Registered: ‎20-10-2017

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!
Member
Posts: 1
Registered: ‎13-09-2017

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.    

Member
Posts: 7
Registered: ‎14-03-2017

Re: Weekly paclitaxel (taxol) and hair loss

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.