Topic: hair loss....gemzar cisplatin

Ok, so I read that cisplatin can make one lose their hair. It said it can, not that it always will. What does that mean? How many of you lost your hair?

The problem is,in Sweden we can ask for a cold cap that basically freezes your scalp so you dont  loose your hair. My husband's collegue used it and she said it was so painful that it was worse than the chemo but she was glad she did it. I know losing my hair will upset me, yet I dont know if I can do something to me which is painful just for vanity. I am torn. I am really dreading the day I look like I cancer patient. I am scared of how people will treat me differently.

Does anyone know what percent of people loose their hair? If it isnt that high, I will definately skip the cold cap. If most people loose their hair, then it becomes more confusing....

Any advice?

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: hair loss....gemzar cisplatin

Hi Kris;
I was on Gemzar/Xeloda the first time. I had thinning (luckily I had really thick hair). After the 7th month my hair was pretty thin compared to what it had been but still Ok and no need for wig/hat. This time I am just on Gemzar so far and getting Neulasta/Neupogen injections. I dont know whats happening but I am thinner now after 2 months than I ever was before. Washing my hair is always a reminder because my hands are covered with hair. I have not been on Cisplatin yet, but I get scan results tomorrow so that may be next. I was told that you usually dont lose your hair with Gemzar. Depending on what others say about their experience with Cisplatin/hair loss maybe you could try the cap and see how you do with it. Maybe you won't feel it's that bad or if it is you can stop using it after you try it. If I had been given an option that would have prevented the hair loss I probably would have tried it at least once and then made a decision. Just my thoughts!
Take care and God Bless,
Jamie

Re: hair loss....gemzar cisplatin

Hi, Kris,

I was told I would probably lose my hair when I had chemo. My biggest concern was for my husband because he always liked looonngg hair. I gave him warning and time to think about it. When it seemed like I spent longer cleaning hair out of the tub than I spent cleaning the hair on my head, I asked him to shave the head. He did, and couldn't get over how the hair didn't do anything, the head has a beauty of its own. He explored a website that showed pictures of lots of women without hair before we cut my hair. I had him do it because, with 4 sons, we have good hair clippers. At church that first Sunday, our priest did a double-take and then he was fine. I saw one little girl stare at me but when I smiled at her, she smiled back. Other than that, I had no adverse reactions. I had people ask if it was Okay for them to feel my head. My hair was short, but never totally shiny bald. After the first chemo series, the hair came back pretty much like it had always been. When I faced a second series of chemo, my hair became an incentive for my son's boy scout troop. I was doing the accounting for a fund-raiser, and I offered that if they had the money all turned in by some date, the boys would get to cut my hair. The boys thought that was funny. They met the goal, but when I took the clippers to get my hair cut, some of them were not willing to touch the clippers or work on my hair. They were funny. After the meeting, my husband still needed to trim it up a little. None of the scouts were interested in holding the ear out of the way so they could trim around it, and none of them were interested in "shaving" the neck, but finishing my haircut after the boyscouts started it only took Tom about 10 minutes (or less) compared to 45 minutes or more the first time. The hair seemed slow returning after the second chemo, but the radiation that followed may have been a factor. When I got the hair trimmed, removing the thinned hair made the thicker new growth underneath visible, so I had to laugh when people started talking about how much hair I had after I got it cut. As it has grown back this time, it actually has some curl. The color is still the same as always. Somebody I work with was telling me last week that she was asking herself who I was until she realized that my hair had finally grown in enough that I no longer look like a current cancer patient. We both had to laugh about that.
One day, my husband and I had gone out to dinner. A perfect stranger assumed from my short hair that I had cancer. She asked if I would mind telling her what kind of cancer I have, what that meant, how was I doing,... She finished by asking for a hug and offering to pray for me and my family. I never felt my hair made people upset, afraid, or unnatural. Yes, I continued to go to church regularly and I teach at a community college, so I never knew what strangers would notice my hair. I had a couple of wigs, but they were more uncomfortable than people's reactions or thoughts on my lack of hair. I also had a couple of fun hats, but those were usually not needed. I did wear some turbans, but more for temperature control because the head would easily get chilled. The hardest thing for me with the Gemzar/Cisplatin combo was that it put me into menopause. So if you think of hair as just another accessory, dress it up any way you like, have fun with it, be comfortable. A friend used her chemo as an excuse to collect scarves, and she was always finding ones for her professional wardrobe at the thrift stores. They were also welcome gifts from friends.
Once upon a time, a woman with little or no hair was pitied or ostracized. Now, as long as you are comfortable with your look, the length of hair is no more important than the length of skirt, pants, ...
Keep smiling! It makes people wonder what you're up to.
Louise smile

Re: hair loss....gemzar cisplatin

Hi Kris - I was on Gemzer & Cisplatin for 5 months last year, and again this year for  3 months so far.  Last year my hair thinned quite a bit, not that I ever had super thick hair to begin with just a lot of it.  Last year I did *seriously* think about shaving my head butwent off chemo for surgery and never did shave it.  This year's chemo has basically been the same, thinning but not yet to the point of shaving my head.  I might be starting a new chemo treatment soon (FOLFOX), since the Gem/Cis is not working.  Also, the gem/cis combo only put me down hard for 2-3 days, I took Zofran, Ativan, & Compazine, along with some Immodium for for about 4 days after the gem/cis combo treatment.  The gemzar alone never made me feel bad, just a bit tired for about 24 hours after.  Hope this helps.  Hang in there Girl!

- Suzanne

Re: hair loss....gemzar cisplatin

Thank you to you all for the info on thread.  I know the thread is several months old but my sis has recently started on Gem/Cis & has been wondering what it will do to her hair.  At the moment, her hair looks in great condition but she's only had two doses so far.

She's asked me if anyone can tell her what "thinning" actually means in real terms, so I'll print this off for her.

Julia xx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

6 (edited by scarman2009 Fri, 06 Nov 2009 23:43:52)

Re: hair loss....gemzar cisplatin

I had some thinning on my chest, back and legs. (on Gemzar)

My head held its hair (so far),

Re: hair loss....gemzar cisplatin

hi. I am a 38 year old female who had these drugs 2 years ago and my hair did thinn out. I did miss a cycle of chemo (which may have helped) because of low blood counts....but i did not loose my hair. It did get darker though.
Advice on spoiling kids, especially ones that are not ours, is something i am very good at. If you tell me how old they are I might have an idea on that too. By the way I was very sensitive to the sun for many months after. I am fair skined and blond and burned easily.
This is the first time I logged on to this web site and the first time in 2 years that I have seen/ heard from another young female. I know you wouldn't want to be the person to do this for me (because really who wants this disease?) but knowing you are out there, hanging on too, makes me feel....so much less alone.
thanks.
Beth O

Re: hair loss....gemzar cisplatin

Welcome, Beth!!!  You will certainly not be alone here!!  This is such a wonderful site so please come back often & tell us how you're getting on.

Thanks to you & scarman, too, for your comments on the thinning.  My sister has now had 2 full cycles (4 doses) & slightly more hair is shedding - but there's still not much coming out.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: hair loss....gemzar cisplatin

Welcome Beth. I am so glad you found us. There is no need to be alone when you are going through something like this. And yes, we are too young for this disease, but I guess there isnt a right age to get it...though sometimes it does seem unfair but I try not to catergorise what is fair and isnt, who deserves cancer and who doesnt. There are a couple of us younger ones here.

I too am very sensitive to the sun...I dont burn, but the number of age spots have doubled, no tripled this year, even though I am a sunscreen goddess. I wear hats all the time (even when I swam in the ocean) and still I got loads of age spots.

My little godson is just a baby, but I am already planning on how to spoil him. He is the closest I will ever have to having a baby (THANKS CC!) so spoiling him is top priority. We have a box going of gifts for when I get to see him. He lives in Scotland and I live in Sweden, so it is hard to get to him given my chemo schedule and the fact that I am still taking Swedish classes.

If you need anything, please feel free to email me. It might take a couple of days to get back in touch since the email address I signed up with, i dont check that often, but I do check it eventually!

Take care.
KRis

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: hair loss....gemzar cisplatin

I know that these posts are a few months old, but just wanted to comment for future readers.....I was on Cisplatin / Gemzar for about 3 months.  The nurses kept commenting that they thought I would lose my hair.  I had thinning (lost about 1/2) in that every morning I would have a lot in my hands when I washed it, or combed it.  I was told if I was going to lose it all....it would fall out in clumps and be gone in a few days.  It would not go over a matter of weeks.  My white blood count dropped low for about 3 weeks.  That's when the hair started thinning.  When the count came back up, the thinning stopped.  That was it.  I had long hair & cut it shoulder length to not show the thin bottom so much. 

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: hair loss....gemzar cisplatin

Thank you, Linda.  Your information definitely helps those struggling with the possible loss of their hair.  It is very much appreciated.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: hair loss....gemzar cisplatin

Hi all,

Just a quick comment about possible hair loss!  I used to be the person that never wanted to cut my hair.  I had hair below shoulder length and even though it wasn't a thick head of hair, I appreciated what I had and was protective of it (before CC).  My brothers helped me to see things in more perspective.  I was more afraid of the change.  It wasn't losing the hair that bothered me as much as the change and the negative aspects of hair loss.  When I thought I was losing my hair, I went to get a wig as soon as I could so I wouldn't be "without".  My brothers helped me see it as an adventure, and asked that I experiment with the look.  Get something that was a little more out of the "box" for me.  To try out my "daring" side and who knows, I might find something that I really, really wanted to try (new color, new style, whatever). 

I only wore the wig I picked out a few times.  I have 2" new pieces of hair all over as what thinned grows back.  However, I know at any time with the new chemo. I could again begin to lose it or lose it all.  I'm prepared with that wig again, and don't look to it now as a negative thing.  I've become more daring and experimental!  My husband actually made suggestions on colors too!  He joked it would be nice to have a "new red-head on his arm" (I'm dark blond).

Get out there!  Experiment!  Be your daring self.  After all we are going through, shouldn't we be able to make ourselves feel better in this way too!  Live it up.

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: hair loss....gemzar cisplatin

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