Questions for those who completed taxotere treatment.

JadeShiva

Hi everyone. I am going to start taxotere/cytoxan next week. I have been doing research about permanent hair loss after treatment and there is a factor I cannot find research on.

Please share your experience with me if you are willing. I would like to know-

1. Whether you were premenopausal, peri-menopausal or menopausal.

2. Your age at time of treatment.

3. Whether your hair was thinning, thick or in the process of thinning naturally.

4. How much grew back after treatment.

Thank you all who reply, and thank all of you here for the time you've taken over the years to share your experiences and support.

IntegraGirl

Prior to treatment, I was premenopausal, 49 years old, and hadregular hair with no thinning. I'm 6 weeks since my last docetaxol treatment and my hair is returning. It's coming in dark brown.

JadeShiva

IntegraGirl, I'm so happy it's coming back in for you! May it be thick and lush. Is dark brown a new color for you?

KBeee

I was 43, premenopausal, with fine hair. It all came back, but I had an area on each side that was delayed a year behind the rest; looked like male pattern baldness for a bit.

HappyHammer

JadeShiva- hugs to you as you start this journey.  As you can see on my tagline- Taxotere was a part of my chemo/bio cocktail.  I really think Taxotere caused most of my SE's...I had some major finger and toe nail issues that only resolved after abt a year post treatment.

To answer your questions:

1. -I was post menopausal as I had ovaries removed in 32013 due to constant issues with ovarian cysts.

2. just turning 56 at dx

3. I always had think hair with a lot of body- it had thinned some but was still straight and pretty thick prior to dx.

4. I was mousy brown/dishwater blonde with a bit past shoulder length prior to dx....wore it pulled back often as it was easier.  Lost hair completely day 18 after first treatment.  It started coming back in several weeks after last treatment but sloooowwwwly.  However, I was still getting Herceptin.  Anyway, it did come back in very curly and silvery white initially- it took a long time to fill in- and stayed curly for over a year...currently, I have a short bob, lots of body, gray/brown, it is much thinner but still good coverage except thinner in one area above forehead- I can deal with that with a side part....I use some hair products like mousse or sprays to add a bit of lift.  

HappyHammer

BTW- KBeee- you look great!!  SO god to "see" you!!

IntegraGirl

JadeShiva, I coloured my hair for so long that it's hard to remember what the actual colour was ....dark brown seems to ring a bell !!!

I'm sorry you have to start this treatment but it's doable. I hope your SEs are minimal. I followed the Valter Longo fasting protocols for chemo and my SEs were pretty nominal with the exception of losing my hair and increasing fatigue, especially with the Docetaxol.

LeesaD

Premenopausal and 49 yrs old. My hair was super super thick. Always was blond and then chemically induced blond. Am 10 weeks post final chemo and my hair has started growing back. It's coming in white and grey which I did not expect. Can't tell yet if it's thinner as not enough growth yet. Finally had to shave my legs earlier this week for the first time since May. I lost all hair on my body except eyebrows and eyelashes go figure... then all of a sudden the eyebrows and lashes just fell out three weeks ago out of the blue 7 weeks after I finished treatment. Did not expect that.

TizzyLish

1. I was premenopausal. I've had a hysterectomy since completing chemo, though, so am now postmenopausal.

2. I had just turned 43 when I was diagnosed.

3. My hair was of average thickness prior to treatment and probably about 50 percent grey.

4. My hair fell out about two weeks after my first treatment, and my eyebrows and eyelashes didn't fall out until the last one. I had been told that might happen, but it still seemed weird! My last taxotere was almost two years ago. My hair came back curly at first, and it's always been very, very straight, so dealing with that was weird too. It was curly for six months or so. Now it's straight, maybe 75 percent grey, and actually much thicker than it was before. I think it's because of the grey hair which is pretty coarse.

I just wanted to chime in since I'm one who definitely did NOT suffer from permanent hair loss. It doesn't happen to everyone. 😊 Good luck to you!! ❤️

MARIONSGIRL

I was post menopausal and age 64 when I was diagnosed. My hair was thick and gray. It started to come out in large clumps about a week after my first chemo. I was taking a shower and washing my hair when it happened. I was told to expect it but thought it wasn't going to happen to me. I ended up getting it all cut off since there was hair everywhere, on the sheets and clothes. My sister got a buzz cut to support me! It was winter so I wore a lot of hats.

My hair did grow back and it was not as thick and was curly. I had never had curly hair. It was still gray but didn't look healthy. I let it grow for quite a while and then got a short haircut which was more attractive. The curls went away. I have been on hormone therapy since March 2016, first Aromasin and now Tamoxifen. Tamoxifen has made my hair much thinner and not growing very fast - especially since I wish it would grow!

hodges

Hello. Glad to help.

1. Menopausal

2. 49

3. Thick

4. All grew back. Stylist remarks that hair is as thick as before treatment.

Sending Hugs your way

lrwells50

JadeShiva,

1. i had a hysterectomy 20 years ago due to ovarian cysts.

2. 66 at time of treatment.

3. My hair has always been pretty thick, but I've been coloring the gray for so long I really didn't know how much gray I had. My hair has always been medium to light brown.

4. I'm 9 weeks PFC, and lost my hair about 13 days after the first chemo. Once I started losing it, I had my hairdresser buzz it to about 1/2". Don't shave it, in case you have ingrown hairs when it comes back. I had a very small percentage of hair that I never lost. Mine started coming back in a couple of weeks ago, but is fine down like a newborn. It's VERY white on the top and sides, but dark in the back. It's very likely it was that gray before, but because I colored mine every 4 weeks it was hard to tell. I always hated sitting with color on my hair for thirty minutes, so will try to just leave it natural. My hair has always grown very fast, and I wear it short, so I'm guessing it will be long enough in 4 - 6 weeks to cover my scalp and ditch the wig. It's hard to tell at this point whether I have any thin or bald spots, but it doesn't look like it.

I've worn a wig since I buzzed my hair, and am still wearing it. I bought scarves and hats, but am not comfortable wearing them. I'm going to a tailgate and football game in the wig Saturday, and the forecast is 93 and sunny. If it's bad enough I'll resort to the scarf.

FWIW, my MO said he's only had 1 person have permanent hair loss on Taxotere, although there are several posters here that have had it. I was a lot more worried about neuropathy on Taxol, which the first MO I went to wanted to prescribe

octogirl

I was 61 at diagnosis, post menopausal. My hair was thick and wavy, and no thinning at all...also no gray. After taxotere it took what seemed like forever to come back (almost five months before I had enough that I felt comfortable going hatless); it took so long that I was certain it wasn't coming back.

Now, two years later it is slightly thinner than before, but still thicker than many if not most women my age...and quite curly rather than just wavy. just a few strands of grey, otherwise basically same dark brown as before tx. It looks and feels soft and healthy. Objectively, I have come to realize that it actually is probably the most flattering hair I've ever had (I get a lot of compliments) but it has taken me a long time to come to terms with the fact that it is different. Now that I am finally happy about it, I am starting to see some indications that the curls may be loosening and going back to my former waves....

stephincanada

Hi there. Here are my answers:

I was 45 at diagnosis.

Premenopausal

Had very thick hair, straight hair

Like Kbee, I have patches on each side of my head that are quite thin (like male patterned baldness). The rest is very full. In the back it is curly, in the front the hair is wiry. My eyebrows have only grown back about 30%; they are very sparse. Eyelashes are very short. I am 10.5months PFC.

Like a previous poster on this thread, I was concerned about permanent neuropathy that is associated with Taxol. I figured that I would rather be permanently bald then have permanent pain. My mom developed permanent neuropathy from Taxol.

Good luck with your choice. Treatment decisions are stressful.

JadeShiva

Thank you everyone for your feedback. I discussed using a different taxane with my oncologist and she said she would see if research had been done swapping taxol for taxotere. She got back to me after the weekend and said there is no research showing a swap could occur. I'm annoyed as I see a lot of people using different treatments yet I want to believe she has my best interest at heart.

They offered me another option not involving a taxane, but I worried about past treatments not being as effective at beating the cancer. I still need to research and I'm running out of time! It feels vain to not want to look like I have cancer the rest of my life but it's the truth.

Cooljewels

I had 5 1/2 months of TC which is Taxotere and Cytoxan I was done with treatment in July 2017, and it is now 11 weeks out and I still do not have any hair. I am sad.

juskym11

I feel your pain.  I completed taxotere on August 25, 2016.  About 2 weeks before treatment ended I heard that Taxotere could cause permanent hair loss.  That of course freaked me out.  However, it seemed that my hair started growing back at first.  Now it's about a year out and I have to accept the fact that I have such thin hair that I have bald patches all over my head.  Some areas are worse than others.  I am very depressed and angry that I was not informed that I could take Taxol as an alternative.  I'm even thinking about suing my doctor, and hoping for enough of a settlement to at least pay for a hair transplant and eyebrow tattooing.  I know that sounds bitter and litigious, but I'm really not either of those things. It's just a very depressing thing to think of having practically no hair for the rest of my life.

juskym11

I recommend taking Taxol.  My hair has not grown back completely after Taxotere, and I've read that it affects about 2% of patients this way.  I do not have any lingering neuropathy though, and my neuropathy during treatment was basically limited to just extreme numbness in my fingertips and toes.  To the point of not being able to button or zip, and not being able to open bottles.  But not to the point of pain.

In answer to your questions:

1. Whether you were premenopausal, peri-menopausal or menopausal.

Post-menopausal

2. Your age at time of treatment.

53

3. Whether your hair was thinning, thick or in the process of thinning naturally.

My hair was in the process of thinning naturally, but no where near what is now.

4. How much grew back after treatment.

I would say about half of my hair grew back after treatment.

Unfortunately, I am also prescribed Letrozole for the next 10 years, and I've read that about 5% of Letrozole users also suffer from permanent hair loss.

I hope this info helps you in making your decision.  Or, if you've already made the decision, possible reconsidering if you chose Taxotere.

Jackster51

Permanent hair loss with Taxotere is 6-10%. I did not get my hair back, and that was 5 years ago. It is your decision what treatment to take and Taxol has been proven to be equally, if not more effective than Taxotere. There are multiple trials showing this. I would ask for Taxol as well.

OCDAmy

I have had three rounds of TC with one left to go in two weeks. I buzzed my hair and I am surprised that there is still quite a bit left. I don't know what will happen after the fourth round but so far I have not lost it all. I am 53 and had very thin hair to begin with. I still have my eyebrows although they are thin and still have my eyelashes although I have lost some. No hair growth so I don't have to shave. I am hopeful that I will keep some hair but of course who knows what will happen after the last treatment. I have been icing my fingers and toes during T and I have had no neuropathy.

tracikay3

I had five treatments. I was pre menopausal. 41 at treatment. It was normal, straight and moderately thick at the start of treatment, medium brown. My last treatment was August 2nd 2016 and it began growing back at the end of September. I know have thick, curly hair that is possibly a shade lighter than before.

JadeShiva

Thank you all for replying. After reading through your posts and thinking a good long while, I decided to go with the taxotere and try the cold caps. I had it in my mind that those with the most vigorous hair would be most impacted, but there doesn't seem to be a theme.

I'm one long week post treatment. My hair is still hanging in there. I would expect to see changes in another week or so but who knows? Maybe the caps will work.

On a side note, I'm a hairy lady. My darn chin hairs are growing as vigorously as ever! 😆

Leatherette

Another hairy lady here-my hair started growing back during my third round. I lost quite a bit, but now I have growing stubble and new fuzzy growth. I still have most of my eyebrows and eyelashes. I am getting my 5th infusion as I type, and know I can still lose all of it, but I at least think the follicles are still alive! I knew I wouldn't follow through on cold capping, so didn't want to set myself up to fail. Some people have great success with it.

I was premenopausal, 45, and had thick dark curly hair withmaybe 5% gray.

Wendiwithani

Please share your experience with me if you are willing. I would like to know-

1. Whether you were premenopausal, peri-menopausal or menopausal - premenopausal

2. Your age at time of treatment - 44

3. Whether your hair was thinning, thick or in the process of thinning naturally - thinning naturally at the temples just a bit. I've always had fine hair

4. How much grew back after treatment - all of it (slowly thanks to Herceptin) and it came back in exactly the same color, texture, etc. as before

SueRobbo

I'm post menopausal

Aged 66 when treated with FEC T (Epirubicin and docetaxel), 6 rounds administered every 3 weeks over an 18 week period)

My hair was a fine silver and shoulder length. Very full and shiny with a lot of bounce.

I'm 6 months post chemo and my hair is a mass of fine white curls on top; the back and sides are very thin, with my scalp clearly visible. The hair directly over my ears, and around the nape of my neck is a hilarious pie crust frill of tiny white curls.

My hair fell out 2 weeks after the first chemo. I developed dry eyes. My eyelashes, all other bodily hair and nails fell out mid way between the first and second docetaxel. My face became very sore and scabbed over, forming painful pustules.

My Hospital has since withdrawn FEC T chemo due to adverse side effects. I was told the cost of cold capping was £1,500 to the UK NHS and so declined it, but I wish I had been more forceful in asking for it, as my experience has been if you don't ask you don't get.

Apart from Alopecia, I have chemo induced peripheral neuropathy in hands and feet, weak and broken nails, weight-loss, and extreme dry eyes that make prolonged reading impossible. The veins in my cannula arm have painful chemo damage.

Alopecia is upsetting, and I realise that is the focus of this thread, however the pain from peripheral neuropathy is ever present and I stumble frequently, which has caused complete lack of confidence when going out. I can wear a wig for my Alopecia although I am concerned about the cost of doing so long term).

I'm 6 months post chemotherapy and on Accord brand of letrozole (although prescribed Femara due to comorbidities, my dispenser won't give it due to cost). I do know other people locally prescribed Femara for no other reason than the side effects are considered to be less. This makes me feel worthless at times, although I realise I mustn't give into it.

I'm finding the side effects of letrozole seriously debilitating (pains in bones and stiff limbs that make walking painful, sleep disturbances due to hip pain, nausea and stomach cramps, headaches and blurred vision). I've all but given up driving due to the latter.

I've recently made arrangements privately to see a dermatologist with regards to my Alopecia as my Hospital have told me a) my hair would have thinned anyway due to my age, b) hair will come back, c) it isn't anything they've done, d) my hair looks nice. The usual rubbish answers I gather.