A way to avoid losing hair with chemo

pinky104

I talked to an old friend of mine last night, one who'd had breast cancer 19 years ago.  She'd had chemo back then, and she expressed her desire not to lose her hair from it with the nurse at her first chemo appointment.  The nurse suggested she try an ice cap during chemo.  My friend had this cold, heavy ice cap placed on her head for all her chemos.  It worked--she never lost her hair at all.  She said it might have had a different wave to it afterwards, but it was all still there.  She did say it was uncomfortable having to wear the thing the whole time, but it was apparently worth the discomfort.  Has anyone else ever heard of this?  I'm wondering if it affected her circulation and that's why it worked. 

Kaleena

Hi Pinky:
I have never heard

Hi Pinky:

I have never heard of this.  But it may have been the type of chemo she was one.   I was originally to have Carbo/Taxol but had an allergic reaction to Taxol.    I was told I would lose my hair with taxol.   After the reaction, my oncologist switched me to Carbo/Gemzar.   I did not lose my hair with this treatment.  So it might depend on the type of chemo.

 

Kathy

NoTimeForCancer

I have heard of the ice cap,

I have heard of the ice cap, but there is also so controversy over whether it interferes with the "good" the chemo is supposed to be doing.  Someone I know who wore one said it was pretty cold and rough. 

pinky104

Kaleena

I thought exactly what you thought at first, that it was the type of chemo she had.  However, she told me the nurse had told her she would lose her hair, and suggested this alternative way to go so she wouldn't, and it worked.

pinky104

NoTimeForCancer said:

I have heard of the ice cap,

I have heard of the ice cap, but there is also so controversy over whether it interferes with the "good" the chemo is supposed to be doing.  Someone I know who wore one said it was pretty cold and rough. 

NoTimeForCancer

She did say that it was uncomfortable to wear the thing, that it was really cold.  She didn't seem to know about the controversy with it.  My cancer center never even mentioned it to me.  Perhaps it's because of that controversy.  She's still here 19 years later with no recurrences, so it must have worked well in her case.    

ioanna

pinky104 said:

Kaleena

I thought exactly what you thought at first, that it was the type of chemo she had.  However, she told me the nurse had told her she would lose her hair, and suggested this alternative way to go so she wouldn't, and it worked.

I tried the cold cap during

I tried the cold cap during my first two rounds of chemo. I had cisplatin/taxol. It was awful as it is freezing cold and replaced with a new colder one every hour. Also, the cap needs to stay on for two hours after the main chemo has finished.

 

I can't handle cold well and the results were not worth the trouble. After the first two rounds I ordered a hos-2 hair replacement (it's like a wig but you can't remove it. You get to wash it and style it any way you want.) Most people didn't even notice I was wearing a wig!

 

Hope I helped

pinky104

ioanna said:

I tried the cold cap during

I tried the cold cap during my first two rounds of chemo. I had cisplatin/taxol. It was awful as it is freezing cold and replaced with a new colder one every hour. Also, the cap needs to stay on for two hours after the main chemo has finished.

 

I can't handle cold well and the results were not worth the trouble. After the first two rounds I ordered a hos-2 hair replacement (it's like a wig but you can't remove it. You get to wash it and style it any way you want.) Most people didn't even notice I was wearing a wig!

 

Hope I helped

Joanna

I hope I won't ever need it, but where do you get something like that?  My cancer center provided a free wig for me, compliments of the local Rotary Club, but I found it very uncomfortable, especially in the hot summer weather.  I tried to get one close to my natural hair color.  I remember someone at my work who hadn't seen me recently telling me she liked what I'd done with my hair.  I had to tell her I was bald underneath the wig and that I had cancer.  I think she was sorry she'd said anything.

I don't like being cold, either.  I keep my house extra warm, so I probably couldn't handle the ice cap any better than you did. 

ioanna

pinky104 said:

Joanna

I hope I won't ever need it, but where do you get something like that?  My cancer center provided a free wig for me, compliments of the local Rotary Club, but I found it very uncomfortable, especially in the hot summer weather.  I tried to get one close to my natural hair color.  I remember someone at my work who hadn't seen me recently telling me she liked what I'd done with my hair.  I had to tell her I was bald underneath the wig and that I had cancer.  I think she was sorry she'd said anything.

I don't like being cold, either.  I keep my house extra warm, so I probably couldn't handle the ice cap any better than you did. 

I got the hos-2 wig in a hair

I got the hos-2 wig in a hair clinic (Bergmann Kord). It costs about 1500 euros and my insurance only covered 300 euros. I made an arrangement to pay in monthly installments. I know it was really expensive but it was totally worth the money. I had to work and no one could tell it was wig.

 

 

I was told that this technique is also used in Hollywood but the could lie. Anyway I am sure that if it's available in Greece, it's definitely available in the U.S.

Double Whammy

ioanna said:

I got the hos-2 wig in a hair

I got the hos-2 wig in a hair clinic (Bergmann Kord). It costs about 1500 euros and my insurance only covered 300 euros. I made an arrangement to pay in monthly installments. I know it was really expensive but it was totally worth the money. I had to work and no one could tell it was wig.

 

 

I was told that this technique is also used in Hollywood but the could lie. Anyway I am sure that if it's available in Greece, it's definitely available in the U.S.

No regrets

 I think the jury is still out on the cold caps.  I have read mixed things about them.  Two schools of thought - might help keep your hair and on the other hand it might not, but the big thing for me is some folks believe it keeps the chemo from crossing the blood/brain barrier.  Some day - probably not in our lifetimes - chemo will become a barbaric thing of he past and folks will wonder why they put patients through such horrors in the first place.

Anyway, I did lose all of my hair on chemotherapy (Taxotere and Cytoxin) for breast cancer.  I was not the least bit concerned about it, because it was supposed to be temporary.  I had a very rare side effect (that I was not told about) and my hair did not all come back.  Some of it did, but  I sort of look like the crypt keeper.  I have male pattern baldness, with very thin fine hair where there is any, no eyebrows, and puny little eyelashes.   "Other" hair is sparse, but that may be age related.   After I got over being totally devastated, I have learned to live with this. It took a huge toll on me and took me  at least 2 years to make peace with it and I still have bad days.   I wear wigs and my wigs look better than my hair ever did, I've had permanent eyemakeup (tatoos) on my brows and eyeliner and for a while I was wearing lash extensions.  I shave what hair I have on my head and the wigs fit well and stay put with no effort or worry (not too much worry at least).  I have considered a permanent piece like Ioanna and know of others with this permanent side effect who have used them.  I do think they're very nice, but I like change and having the ability to change colors and styles in a matter of minutes and not having to style anything other than arrange it has turned out to be rather liberating.   Oh, yes, I'd rather have my own hair - any day.  But it is what it is.

 I have no regrets.  I knew my hair was going to fall out and it did.  All of it.  Everywhere.   I'm on this side of the grass under any circumstances.   I had both breast and endometrial cancers diagnosed at the same time and that scared the you know what out of me - more than losing my hair that's for sure.  (I do hate it when people say "it's only hair", because our hair is very important).  There are many reasons women lose their hair, chemotherapy is only one of them and for most that's temporary.  There is a reason the wig and hair replacement companies stay in business.  Thare other medications that cause hair loss, there is alopecia for no known reason, there are other illnesses that cause hairloss, and there's ageing.  Yep, many women lose a whole lot of hair with just plain old ageing.  And guess what?  They either wear wigs or pieces or don't care (I do).  It is a horrible experience for a woman whose crowning glory is her hair, but there are solutions.   They may not be ideal, but dammit it is what it is, and for those of us left permanently bald or bald for other reasons, the cold cap debate just makes my blood boil.

Off my soap box.

Suzanne

NoTimeForCancer

Double Whammy said:

No regrets

 I think the jury is still out on the cold caps.  I have read mixed things about them.  Two schools of thought - might help keep your hair and on the other hand it might not, but the big thing for me is some folks believe it keeps the chemo from crossing the blood/brain barrier.  Some day - probably not in our lifetimes - chemo will become a barbaric thing of he past and folks will wonder why they put patients through such horrors in the first place.

Anyway, I did lose all of my hair on chemotherapy (Taxotere and Cytoxin) for breast cancer.  I was not the least bit concerned about it, because it was supposed to be temporary.  I had a very rare side effect (that I was not told about) and my hair did not all come back.  Some of it did, but  I sort of look like the crypt keeper.  I have male pattern baldness, with very thin fine hair where there is any, no eyebrows, and puny little eyelashes.   "Other" hair is sparse, but that may be age related.   After I got over being totally devastated, I have learned to live with this. It took a huge toll on me and took me  at least 2 years to make peace with it and I still have bad days.   I wear wigs and my wigs look better than my hair ever did, I've had permanent eyemakeup (tatoos) on my brows and eyeliner and for a while I was wearing lash extensions.  I shave what hair I have on my head and the wigs fit well and stay put with no effort or worry (not too much worry at least).  I have considered a permanent piece like Ioanna and know of others with this permanent side effect who have used them.  I do think they're very nice, but I like change and having the ability to change colors and styles in a matter of minutes and not having to style anything other than arrange it has turned out to be rather liberating.   Oh, yes, I'd rather have my own hair - any day.  But it is what it is.

 I have no regrets.  I knew my hair was going to fall out and it did.  All of it.  Everywhere.   I'm on this side of the grass under any circumstances.   I had both breast and endometrial cancers diagnosed at the same time and that scared the you know what out of me - more than losing my hair that's for sure.  (I do hate it when people say "it's only hair", because our hair is very important).  There are many reasons women lose their hair, chemotherapy is only one of them and for most that's temporary.  There is a reason the wig and hair replacement companies stay in business.  Thare other medications that cause hair loss, there is alopecia for no known reason, there are other illnesses that cause hairloss, and there's ageing.  Yep, many women lose a whole lot of hair with just plain old ageing.  And guess what?  They either wear wigs or pieces or don't care (I do).  It is a horrible experience for a woman whose crowning glory is her hair, but there are solutions.   They may not be ideal, but dammit it is what it is, and for those of us left permanently bald or bald for other reasons, the cold cap debate just makes my blood boil.

Off my soap box.

Suzanne

Suzanne, people have no idea

Suzanne, people have no idea - heck I have no idea!  I lost my hair but I was fortunate enough to get it back.  I agree with your hating "it's only hair" comments, it ranked right up there with "maybe it will come back curly" for me.

I remember seeing over on the Long Term Survivor board someone asking if there were any other survivors who had recieved COBALT!  COBALT?!  Things do continually change, and eveytime we see some new, promising treatment we all wonder ''when is that coming to a store near me?"

Thank you for sharing with us, it was never taken as being on a soap box by me.

pinky104

Thank you, ioanna

Sorry I got your name wrong before.  Thank you for the info. on the place.  I'm not sure where the nearest hair clinic is.  I know there isn't one in my town. If I should ever need this done, I'll try googling the name to see how far I'd have to drive.  Except for some shortness of breath from chemo induced anemia, slight loss of appetite, mouth sores for a few days, and some peripheral neuropathy which has never totally gone away, losing my hair was the worst aspect of my chemo.  I guess I was lucky that I had no other problems. I was never sick with it as I was given Emend before each round of chemo.

And yes, being bald is better than the other case scenario.  

HellieC

Quite common in the UK

Use of cold caps is quite common in the UK.  But I had 6 cycles of carbo/taxol and my oncologist told me that the taxol is so harsh that even with a cold cap I was likely to lose my hair anyway. I don't know how successful it is for other treatment combinations.  You have to wear it right through each treatment and for another couple of hours afterwards, which would have made a very long day.  I did see other patients wearing them while I was having my treatments.  I hate the cold, so, for me, losing my hair was the lesser evil and just part and parcel of the whole treatment.  I wasn't looking forward to it, but I can honestly say that it wasn't half as bad as I'd imagined. I used wigs, scarves etc depending on what I was doing.  I was lucky that it was winter, so wearing hats didn't look odd.

Kindest wishes
Helen

ioanna

pinky104 said:

Thank you, ioanna

Sorry I got your name wrong before.  Thank you for the info. on the place.  I'm not sure where the nearest hair clinic is.  I know there isn't one in my town. If I should ever need this done, I'll try googling the name to see how far I'd have to drive.  Except for some shortness of breath from chemo induced anemia, slight loss of appetite, mouth sores for a few days, and some peripheral neuropathy which has never totally gone away, losing my hair was the worst aspect of my chemo.  I guess I was lucky that I had no other problems. I was never sick with it as I was given Emend before each round of chemo.

And yes, being bald is better than the other case scenario.  

I am ok with the name Pinky.

I am ok with the name Pinky. It's Ioanna in Greek but Joanna in English so you didn't get it wrong ;-)

 

I had extreme nausea after the fifth chemo in August and I have been hospitalized four times since, so my hair was the least of my problems.But I have a 2.5 year old daughter and I didn't want her to see me without hair.

 

 

I wish you the very best

Ro10

Double Whammy said:

No regrets

 I think the jury is still out on the cold caps.  I have read mixed things about them.  Two schools of thought - might help keep your hair and on the other hand it might not, but the big thing for me is some folks believe it keeps the chemo from crossing the blood/brain barrier.  Some day - probably not in our lifetimes - chemo will become a barbaric thing of he past and folks will wonder why they put patients through such horrors in the first place.

Anyway, I did lose all of my hair on chemotherapy (Taxotere and Cytoxin) for breast cancer.  I was not the least bit concerned about it, because it was supposed to be temporary.  I had a very rare side effect (that I was not told about) and my hair did not all come back.  Some of it did, but  I sort of look like the crypt keeper.  I have male pattern baldness, with very thin fine hair where there is any, no eyebrows, and puny little eyelashes.   "Other" hair is sparse, but that may be age related.   After I got over being totally devastated, I have learned to live with this. It took a huge toll on me and took me  at least 2 years to make peace with it and I still have bad days.   I wear wigs and my wigs look better than my hair ever did, I've had permanent eyemakeup (tatoos) on my brows and eyeliner and for a while I was wearing lash extensions.  I shave what hair I have on my head and the wigs fit well and stay put with no effort or worry (not too much worry at least).  I have considered a permanent piece like Ioanna and know of others with this permanent side effect who have used them.  I do think they're very nice, but I like change and having the ability to change colors and styles in a matter of minutes and not having to style anything other than arrange it has turned out to be rather liberating.   Oh, yes, I'd rather have my own hair - any day.  But it is what it is.

 I have no regrets.  I knew my hair was going to fall out and it did.  All of it.  Everywhere.   I'm on this side of the grass under any circumstances.   I had both breast and endometrial cancers diagnosed at the same time and that scared the you know what out of me - more than losing my hair that's for sure.  (I do hate it when people say "it's only hair", because our hair is very important).  There are many reasons women lose their hair, chemotherapy is only one of them and for most that's temporary.  There is a reason the wig and hair replacement companies stay in business.  Thare other medications that cause hair loss, there is alopecia for no known reason, there are other illnesses that cause hairloss, and there's ageing.  Yep, many women lose a whole lot of hair with just plain old ageing.  And guess what?  They either wear wigs or pieces or don't care (I do).  It is a horrible experience for a woman whose crowning glory is her hair, but there are solutions.   They may not be ideal, but dammit it is what it is, and for those of us left permanently bald or bald for other reasons, the cold cap debate just makes my blood boil.

Off my soap box.

Suzanne

Suzanne

I can totally relate to your thinning hair, and male baldness pattern.  I have had chemo three different times, so I did lose my hair each time.  The first two times my hair came back thick.  After the third round of chemo I started on Aromasin.  My hair is so scarce and thin on top, and I have a bald spot on the top back part of my head.  I have some length to my hair, so I wear a cap whenever I go out.  People think I just like hats.  If they only knew what was under that hat (or what is not under the hat).

I too have only parts of eyebrows and almost no eyelashes.  The eyelashes never came back after the first chemo. I have thought about getting permanent eyeliner, but have not got the courage do it yet.  I have read of so many problems that some people have had.  My sister had the eyeliner  tattoos done and is very pleased with it, but she lives about two hours away from me.  I need to find a reputable person. 

I totally empathize with you, but am so happy you are doing well otherwise.  Your picture looks great.  In peace and caring.