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Permanent hair loss taxotere

ohilly
Posts: 446
Joined: Jan 2008

I haven't posted on this board for a long time (although I often read the posts and silently cheer all you ladies on). I have a specific request: I want to hear from someone else whose hair has either not grown back from chemo they had several years ago, or has grown back but is very thin. I had my last chemo of June of 2008: before chemo, my hair was naturally thick, and now I have hair, but very thin. I have to disguise it with an expensive haircut and make-up (if anyone's interested, it's called "Hair So Real" and is natural kerotin fibers that you sprinkle on your head and it covers the thin spots). I researched Rogaine, but it had so many side effects and didn't seem worth it. I discovered another internet support group called 'Taxotears' where many women have written about permanent hair loss from Taxotere, and there is also a large thread about this on Breastcancer.org

Don't get me wrong: I am happy to be alive and still would have chosen to have the same chemo regardless (4 treatments of Taxotere/Cytoxin). But I am upset that no doctor ever told me it was a possibility that my hair wouldn't ALL grow back or be thin. If there is anyone else out there like me, I would like to hear from you.

Ohilly

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Dear Ohilly,

My mom was on the same cocktail as you and while the hair on her head came back, she never did have eyebrows or eyelashes. The hair on her head was very thick before the chemo, and it never came back as thick as it was before, but does not sound as thin as yours. But her eyebrows were never the same. She literally only had about five hairs on each side for eyebrows, she was good with makeup and drew them on, but she did look odd without any makeup. And her poor eyelashes, again, only about two or three on each side.

In the pamphlets they gave us before her chemo, they told us that permanent hair loss was a possibility, but we never want to think we'll be 'the one' who suffers those consequences. I'm so sorry that you're having to deal with this.

New Flower
Posts: 3944
Joined: Aug 2009

even 18 months since I finished Chemo treatment. I never lost all of them but they are not growing back. I am having short, and thin eyelashes plus I cannot wear makeup because my lids got swollen. As for hair they are different texture, very dry and not shiny. I actually link hair texture to Tamoxifen. Do you think that thin hair cold be a result of Arimidex? or lack of estrogen?

ohilly
Posts: 446
Joined: Jan 2008

I am on Femara, which also thins hair, so I did think about the lack of estrogen. For a long time I thought it was the Femara doing this to my hair, but then I read things on the internet about Taxotere and permanent hair loss (see www.taxotears.org). It's difficult to know if it was the Taxotere or the Femara, or (my guess) probably both. But in either case, no doctor ever told me permanent hair loss was a possibility.

Ohilly

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

I am not on Femara and I didn't have chemo Ohilly, but, the lack of estrogen can also cause hair loss and thinning. Sorry that this happened to you.

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

This is an old thread and we have communicated through email, Ohilly, but my hair is by no means the same. My last chemo was Oct. 2009 and it is now July 2011 and I have to wear my short and with various things to cover my scalp otherwise you can see it through my very fine, thin hair. It is so upsetting. I am only 43 and I feel like I look much older because of my hair. I miss the days when I could just put it up in a pony tail and be on my way. Now I have to buy this messy, expesive powder and makeup stuff to cover up my scalp. No one told me my hair wouldn't come back. THey all look at me like they have no idea why my hair didn't come back. It's very distrubing when these Drs are at a loss and I am left to go about my life looking and feeling like a freak. I am okay with it, then a mess over it all over again. I seriously don't know how much longer I can deal with this. It was easier being bald during the chemo because that is expected. Now I just plain feel like a freak because it was two years ago and my hair is supposed to be back...well it's not. I was on taxotere, carboplatin and herceptin. Took tamoxifen for about a year then went off recently because I got so depressed on it I couldnt function.

mollyz's picture
mollyz
Posts: 737
Joined: Sep 2010

There is a bright side to this ah! you are alive and i think that's what the Dr's are trying to do keep us alive the choice is ours do we want our luscious hair or do we want to be alive don't get me wrong I was feeling the same way I told my husband just yesterday i went out for the "first" without a covering on my head and i was in another town of course and i made the statement i wish it would grow a little more so i wouldn't feel bad when i go out and he looked at me with joy and said "your alive" and i thought about it yes i am and that's the point to all this we go thru.they sell wigs by the tons. Fight like a girl and be happy we're alive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOL

ohilly
Posts: 446
Joined: Jan 2008

Hi, Kellyk123. Sorry I haven't been on this site for a long time, and just noticed your post and private messages now.

I can really identify with your feelings about your hair. Yes, my hairdresser did mention she saw some new growth in the front, but I really can't tell myself. I think it's still thinner. My chemo ended in June of 2009 and I am still on Femara. I often wonder when my 5 years are up on Femara if my hair will grow back then because I believe it was the Femara and the lack of estrogen (not the Taxotere) that did this to me.

Although other BC survivors mean well, at least in my case I felt they could not understand because their hair grew back and it was 'just' a temporary loss, whereas ours is permanently affected. It made me feel worse when other women said their hair grew back just fine or even thicker than before, or when people imply we should be grateful that we are even alive and not worry about the hair. Sorry, this was a real loss for me and I can see it's the same for you. I, too, felt I would have dealt with it differently if I had not EXPECTED it to grow back, or if doctors had only told me the truth in the beginning (although I still would have had all the treatment I did, at least I would have known). What kind of 'set me free' is accepting that my hair will never be the same and stopping looking for it to grow back. There was a defining moment after I went to a dermatologist and she told me this. After that I stopped obsessing about it, although I am still sad. It also helped that I used the concealer, HairSoReal or Toppik, which covers up the thin spots pretty well: is this not working for you, or if not, have you tried it? The place to order the products is www.thinninghairsolution.com

Please write to me and let me know how you are doing. I care because I have been there myself.

Ohilly

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

among the three of us is Taxotere. Ohilly is on Femera, Kelly was on Tamoxifen and I'm on Arimidex. All list alopecia as a side effect, but they're still different drugs. My medical oncologist is suggesting I switch to Femera in 6 months if my hair doesn't get better because she said even though they all have alopecia as a side effect, some women have different side effects on different AIs. I really think it's the Taxotere. She did tell me that any chemotherapy (not just Taxotere) can result is some permanent hair loss. Rarely.

I'll have to ask a woman I know if her sister was on an AI. She did not get all her hair back until 2 years after chemo, but she did get it back. For 2 years after chemo, she would not go out without her wig or a hat.

I'm trying some "snake oil" treatments now. The woman who did my permanent makeup (I have no eyebrows, but my lashes are coming back) insists she can stimulate my hair follicles by "needling" my scalp. www.estellesplace.com. I hold out very little hope for this, but she wanted to try it. She needles my scalp and I apply minoxidil. So if it grows, will it be the needling or the minoxidil or time?

This is sort of like non cancer people not understanding what we go through emotionally with cancer and its treatments. Yes, at least we're alive and I do believe there are worse things than not having hair, but it just plain sucks and is a constant reminder of having had cancer.

Anyone else missing their hair after Taxotere?

Suzanne

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

Thanks Ohilly. I know you understand and I feel like we had the exact same emotions during the initial realization that something was very wrong when our hair was growing back and the constant search for answers that no one seemed to have. Yes, thank you for the Toppik hair stuff. That has saved me. It's just so messy. I also use the convour...I think it's called. The powder gets all over the bathroom etc. But it does work and I am thankful for that. It's just a constant reminder that I am not back to normal, which is the deeper issue. It does make me upset when people say, well at least you're alive...and, It's only hair...it's not just hair, it's health and the feeling that we are healing...at least for me. Thank you again, Ohilly, for all your help. I really do appreciate it. It's easy to feel very alone when no one can relate to what you're going through.

ohilly
Posts: 446
Joined: Jan 2008

Kelly, try HairSoReal - it is cheaper than Toppik and I think, less messy. You can order it from www.thinninghairsolution.com

The comment made by someone else (sorry I can't look on the screen to see your name just now) that Taxotere is a common thread between us women who have alopecia got me thinking. I think it would be easier to deal with this side effect as well as others if we only knew WHY. I would be interested to hear from others who suffered permanent hair thinning which drug they think caused this. The reason I think it's the Femara is because I talked to a lot of other women on the Femara who had this same problem.

I also suffered another side effect which was pretty devastating. I became very, very depressed for absolutely no reason, and had to go on anti-depressants for the first time in my life. Yes, I did have a 'reason' to be depressed because I went through the whole cancer experience, but I would start crying and not even be thinking about that. Also, it felt chemical, not situational. Now, two and a half years later, I finally got off the anti-depressants and am fine. But I am still wondering what caused such devastating depression. I think it was: 1.) the Femara - depression is listed as a side effect because of the estrogen loss or 2.) the rapid change my body went through from having a lot of estrogen to almost none when I went on the Femara caused depression.

I am interested to hear from other women if they had these experiences (alopecia and depression) and what they think caused them. I still don't know, and neither does any doctor I talk to.

Thanks!

Ohilly

ohilly
Posts: 446
Joined: Jan 2008

Kelly, try HairSoReal - it is cheaper than Toppik and I think, less messy. You can order it from www.thinninghairsolution.com

The comment made by someone else (sorry I can't look on the screen to see your name just now) that Taxotere is a common thread between us women who have alopecia got me thinking. I think it would be easier to deal with this side effect as well as others if we only knew WHY. I would be interested to hear from others who suffered permanent hair thinning which drug they think caused this. The reason I think it's the Femara is because I talked to a lot of other women on the Femara who had this same problem.

I also suffered another side effect which was pretty devastating. I became very, very depressed for absolutely no reason, and had to go on anti-depressants for the first time in my life. Yes, I did have a 'reason' to be depressed because I went through the whole cancer experience, but I would start crying and not even be thinking about that. Also, it felt chemical, not situational. Now, two and a half years later, I finally got off the anti-depressants and am fine. But I am still wondering what caused such devastating depression. I think it was: 1.) the Femara - depression is listed as a side effect because of the estrogen loss or 2.) the rapid change my body went through from having a lot of estrogen to almost none when I went on the Femara caused depression.

I am interested to hear from other women if they had these experiences (alopecia and depression) and what they think caused them. I still don't know, and neither does any doctor I talk to.

Thanks!

Ohilly

helenkay
Posts: 9
Joined: Jul 2011

Yes, I've experienced the same. My hair used to be so thick and now it's like baby hair. My eyebrows have not grown back either. I pencil them in. Anastasia's eyebrow kit is awesome. My eyelashes are tiny and have not grown back to their original length. I used Ovation to thicken my hair. My daughter said she noticed a positive change. But it's been 4 years since my Taxotere treatment, and no luck. I know how you feel, sister. Stay positive. Hugs, Helen

kellyk123's picture
kellyk123
Posts: 23
Joined: Sep 2010

Hi Helen. I just got ovation and am trying it out. Do you think it's working?

Ohilly,
thanks for the tip on thinning hair solutions. Also, I had the thinning hair and depression as well. I think it is the hormones. Hormones, estrogen specifically, influences our hair growth and mood. I am starting to doubt my hair will ever go back to normal. I was not on femmara, but was on tamoxifen which is an anti-estrogen as well. I have been off of it since May and have seen no difference in my hair. I went off of it because of depression and have not felt much relief in that respect either. I don't think my estrogen has increased being off the tamoxifen because my hot flashes are as bad as ever. I am getting more and more convinced that the lack of estrogen is the reason for the depression and sparse hair. I ordered a lace wig but do not think I will feel comfortable wearing it. I am getting more and more depressed over the hair. I can't shake it no matter what. I think I am mourning the loss of who I was and I feel like I didn't have any warning that this would happen.

New Flower
Posts: 3944
Joined: Aug 2009

Sorry Kelly,
Please see a therapist, you probably need to take an antidepressant. Chemo has changed the chemistry of our brains and we need help to come back. Medications could help.
Hugs

ohilly
Posts: 446
Joined: Jan 2008

Kelly, what is ovation and where do you get it?

Is it working?
Ohilly

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

I have a very dear friend that had her first diagnosis of BC in 1982. Her hair never got back to normal. Very thin in front still. It is very frustrating for her. Like everyone else, she expected it to come back after treatment. I am not sure what she tried but she did keep a couple of the wigs from chemo.
I think the hardest part is that it is so noticeable and it is not suppose to happen to women.

Cindy

PS aside from recurrence on the other breast, she has been cancer free for over 23 years!

VickiSam's picture
VickiSam
Posts: 8226
Joined: Aug 2009

I agree with everyone .. being hairless - sucks! My eyebrows are thinned -- maybe 10 each brow, lashes not as thick .. My hair -- so so. I see new growth every now, and then with the appearance of new eyebrow hairs -- so there is hope.

I take Biotin vitamins -- and used J/A/S/O/N biotin shampoo -- cheaper purchased on line.

Chemo therapy saved our 'lives' .. I consider my hair issues, just another lingering side effort of chemo.

I am happy to be alive, so no more tears for me.

Vicki Sam

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

about this hair thing. I don't believe it's going to get any better for me, either. If I were younger, I know I would be devastated. A couple of my friends are sure that my hair is thicker than it was a month ago. It isn't. It's just longer. I haven't given up, but it sucks.

I think it's the chemo(probably Taxotere) not the Arimidex. The reason I think that is because I didn't start sprouting hair at all for over 2 months after chemo and it was always dismal, not like others I've seen. I didn't start Arimidex until 3 1/2 months after my last chemo and it was obvious (to me) that my hair was not making a comeback like it should long before I swallowed that first pill.

The sparse hair is consistent all over my body, not just my head. My eyelashes are short and sparse, but my permanent eye liner helps a lot there. I have 0 eyebrows (didn't have many B4 cancer) and have permanent makeup there, too. It is a wonderful invention. Should have done it before I started chemo.

I don't think there is a product out there that is going to make a difference for me. I think it's either slow in coming back and will in it's own good time, or it's not going to come back at all.

I just wish I'd been warned that this is could be a rare side effect. I still would have had chemo and the only reason this is even remotely ok with me is that I have a great wig that's really flattering and I'm 64, not 34. My heart goes out to you younger women who are dealing with this.

Suzanne

padee6339's picture
padee6339
Posts: 765
Joined: Jun 2009

I had taxotere/carboplaten. Everyone told me my hair, which has always been very fine, would probably grow in thick and curly and maybe even not gray. Yeah, right. I have less hair now than I had before, including a very thin area right in the front. My scalp shines beautifully through it. I thought I was just unlucky. Its good to know I am not alone in this.
Pat

ohilly
Posts: 446
Joined: Jan 2008

Pat, as I indicated above, this happened to me too and it really helps to use cosmetic solutions. You will find two concealers, Toppik and HairSoReal, available at www.thinninghairsolution (or solutions, I can't remember). They really work to cover the thin spots.

Ohilly

lynn1950's picture
lynn1950
Posts: 2571
Joined: Jun 2008

Hi, Ohilly. It is good to hear from you. My hair still has some thin places, too. As you know I suffered from depression big time. I too am doing much better. Like you, I don't how much is chemo and how much is Arimidex. I'm hoping it's the Arimidex. We're more than halfway! xoxoxo Lynn

ohilly
Posts: 446
Joined: Jan 2008

Lynn, did your depression go away? I was on Lexapro and Buspar for 2 years, recently got off both and feel file, although I gained a lot of weight from being on these drugs. At least in my own case, I am convinced my depression was from the rapid shift in hormone levels (a lot of estrogen to almost none overnight) that occurred when I first got on Femara. Now I feel perfectly fine, in fact, better than before the whole thing started which is strange. Let me know how you're doing.

Ohilly

lynn1950's picture
lynn1950
Posts: 2571
Joined: Jun 2008

This summer has been a turning point for me as far as depression goes. I feel pretty good, but I still take Zoloft and Abilify. This has been a wonderful summer - I became a first time grandma on August 3. Glad to hear that you are doing so much better. xoxoxoxo Lynn

IzzWizz
Posts: 1
Joined: Oct 2011

Hi

My hair hasn't grown back since I completed 6 cycles of FEC-T chemotherapy (3 x FEC and 3 x Docetaxel also known as Taxotere) in Spring 2010 in the UK. I haven't taken any drugs since completing chemo and radiotherapy as my cancer was hormone receptor negative (triple negative). There is so much anecdotal evidence of permanent and long term hair loss from Taxotere that there can't be any doubting it surely? I also urge oncologists to warn patients of this potential serious side effect. It's really important to know the full facts before going into treatment so that you can prepare yourself for different eventualities.

Fortunately, I live in a moderate climate! I have to wear a wig and I find it pretty intolerable during hot weather. I really do feel for anyone who lives in heat year round.

Izz Wizz

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Some of my hair has sort of returned. It's not fit for public viewing, that's for sure. I finished chemo Sept. 2010. Since many women have a really hard time with losing their hair, I think we aren't warned about this potential side effect because maybe some women would not opt to have chemo if they knew there was a chance it wouldn't come back. I was only told about common side effects. I didn't have those, I had only the ones I wasn't told about! Go figure.

Suzanne

ender
Posts: 167
Joined: Apr 2011

Hi Suzanne,

Im sorry to hear about your troubles. I also had 4 rounds of Cytoxan/Taxotere. I finished on July 13 of this year. My hair is coming back, but so far its much thinner than before. I used to have a lions mane of thick hair. I still have hopes that the hair will come back like it was before.

I hope this was useful.

Eva

ohilly
Posts: 446
Joined: Jan 2008

You can see from my posts that I also had major problems with my hair after chemo. Sounds like my problem was less severe than yours (I don't mean to make you feel bad, I have sympathy for your problem) in that my hair did come back, it was just thin in certain spots. But it was still a huge adjustment because prior to chemo I had thick, thick beautiful hair.

I am also astounded that no doctor ever told me about permanent hair loss from taxotere being a possibility. It would have been easier to accept, although still not easy, if I had at least known it was a possibility.

I am due to get off Femara in summer of 2013. I have never been sure if the Taxotere or Femara was what caused the hair thinning, so I am anxious to find out if any hair grows back once I stop taking the Femara.

Feel free to PM me or post on this board if you want to talk.

Ohilly

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

Check this out: www.hatswithhair.com. A little pricey, but cute.

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I see your comments and I pay attention. You seem to know quite a bit. In this particular "thread" I see everyone saying that the chemo may the culprit to hair loss. I wouldn't know anything about this, as I have "not yet begun to fight" with this therapy. However, I have a friend who did the radiation therapy and the hormone therapy. She was on Tamoxifen for 5 years and now she is on Arimidex (?). She has not had any hair loss whatsoever. SO, I am thinking chemo is truly the culprit. AND I pray that I do not have to deal with hair loss and then the non return of the hair. BTW --- I did go to hatswithhair. Really nice cover ups. I Love ' em.

xoxo
Mary

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

I just found this site::::love their products!

www.headcovers.com

I really like the wigs and I could not believe there are eyebrows made with real hair. If I need hair on my head and face, I am going to give this place a try

minorbc
Posts: 1
Joined: Dec 2012

I was treated for breast cancer beginning in December 2009 and finished my last treatment of chemo in April 2010. I started radiation and hormonal therapy with letrozole ( a generic version of Femara) in May 2010. It is almost January 2013 and the hair on the top of my head and crown is still so thin that I continue to wear a wig. I expressed my belief that it might be the taxotere that had caused this to happen, but both my radiology oncologist and surgeon believed that it was the Letrozole that was the problem. I remain hopeful that the hair will grow back once I complete the 5 years using the letrozole. My hair was incredibly thick and coarse prior to treatments and I had often said to my hairdresser when she was spending a considerable amount of time drying it that at least I wouldn't have to worry about thin hair when I was older. I guess that statement has come back to bite me! The wig works well and it is very realistic, but I do find it a trifle warm in the summer. I wonder: are there other drugs that could be used for treatment of breast cancer that could be substituted? However, I would rather go without hair if I thought that the taxotere was the most effective drug on the market. 

Double Whammy's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

And I really believe it was the Taxotere.  I've had blood work, been to the dermatologist, used extra strength men's Rogaine faithfully for 6 months as suggested by the dermatologist, and it is still horrible.  I've complained to every MD I see and they just shrug their shoulders.  My pcp says it's either the Taxotere or arimidex, but thinks the taxotere killed hair stem cells and you can't resurrect the dead.  Dermatologist says it just could be the Taxotere. Oncologist just sort of says "not me, I didn't do that".    My last chemo was Sept 23, 2010 and I did not start Arimidex until January 2011.  I was pretty suspicious about my hair before I started ever started Arimidex and I'm pretty convinced it's Taxotere.  I actually met a woman with the same results and she believes it's the Taxotere, too.  I don't know anyone who has completed AIs and whether their hair got thicker again, but I do know that some women do have thinning and slower hair growth on the AIs.  My hair seems to grow lenghtwise just like it used to.  My hair is thinnest at top and crown but is also pretty thin on the fringes.  It sucks.

Suzanne

salls41's picture
salls41
Posts: 340
Joined: Apr 2012

I agree, Taxotere was one of the combo's in my cocktail. Been done with chemo since april and my hair is so not coming back as they said it would. I miss my eyebrows the most I think. Frown

daluse
Posts: 1
Joined: Jan 2013

Hi Ohilly,

 

I truly believe that I am also a 'victim' of taxotere. Between november 2011 and march 2012 I received 6 TAC treatments. 
Now, ten months later, my hair on top is extremely thin and sparse, you can see my scalp and I still have to wear caps and hats.

I'm 43 yrs old and prior to the chemo, I had a full head of long, thick, curly hair. It is very difficult to cope with the (permanent) loss of my hair.
My oncologist says that he has never encountered this side-effect with taxotere and he is not convinced that it is due to the taxotere. Six weeks after TAC I started Tamoxifin, and he thinks that could be a more likely culprit.

 

However, I noticed before I started on tamoxifen that my initial regrowth was very sparse and different to onther post-chemo patients in my environment. I have researched taxotere and hundreds of posts about persistant hairloss related to taxotere extensively and I'm convinced taxotere is the main reason for my permanent hairloss and that Tamoxifen only aggravates the situation. As in your situation, nobody ever told me that my hair would not all grow back. I want to warn as many women as possible in the Netherlands that Taxotere can have this side-effect. There is a very good alternative in AC with Taxol, I wish they would have given me the choice in my hospital.

After reading your post I have ordered HairSoReal, it should arrive this week. Does it not have any bad side-effects for the remaining hairs at all? I would be devastated if I lost the hair on top that I do have! 

You also write that you researched Rogaine but that it had so many side effects that it didn't seem worth it. Can you explain what you mean by that?

I'm also a 'member'of the Taxotears group, great ladies!

I'm aware that your orginal post is already a few years old but I still hope to hear from you and wish you at te beginning of this new year all the best for 2013!

 

Daluse

frostbiter
Posts: 1
Joined: Feb 2013

I had four cycles of TC in 2008.  The last 3/4 to 1" at the front of my hairline never re-grew.  One eyebrow regrew about 10%, the other not at all.  The eyelashes came back nicely with Latisse.  Btw, don't pay the premium for Latisse if your insurance won't pay for it.  My internist confirmed it is exactly the same as Lumigan which is used to treat glaucoma.  He Rx Lumigan, and I got it filled by a Canadian pharmacy with the generic, bimatoprost, for under $30.

In Dec 2012, I had a contralateral tumor and am currnetly undergoing DD ACT.  I went to Dana Farber for a consult.  The oncologist at Dana Farber confirmed that Taxotere does cause permanent hair loss in a significant number of patients. 

Breast cancer x2's picture
Breast cancer x2
Posts: 1
Joined: Jul 2014

My hair never came back after taco tree my last treatment was April 26 ,2013 and today still no hair in the middle I look like a man with male pattern baldness. My doctor never told me my hair won't grow back. The first time I had breast cancer my hair grow back in 6 months no problem.

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