taxotere and permanent hair loss

TennesseeMichele · April 2008

I've been following this thread with interest since starting taxotere. I'm so sorry you're having trouble with permanent hair loss. I do hope with all my heart that it grows back.

I ordered some great scarves from 4Women.com. They're called BeauBeaus and the ones I've gotten are very comfortable. Of course it's not the heat of the summer yet. They're much more comfortable than the wigs I wore 17 years ago when I lost my hair during treatment for Hodgkin's lymphoma.

Thanks for the suggestions about Nioxin and Vit. E. I'll be checking in later.

Michele

okblessed · April 2008

Thank you for the reference to the site!

I am very humbled - one of the photos is of a child - I have had a wonderful life and should not even miss a beat when all I have lost is my hair. May we all somehow promote research to find the cure - especially when it comes to the children.

RoxanneNJ31 · April 2008

I really believe that the true issue here is that "cancer" patients are treated like second class citizens and both the government and pharmaceutical companies need to recogonize that we are humans, have a voice and can beat this diease if given the right options. The American government need to stop worrying about the almight dollar and work in the best interest of "patients". It saddens me so much of all cancer patients have to endure and they are faced with secondary issues from the side effects from the drugs we are taking to help save and prolong our lives. If the government was less worried about money and stastics and more focused on the healing and treatment of all advanced illness patients, then we would have the cure and not the drugs that make the money.

I am so sorry about your permanent hair loss and all the other side effects, it sickens me that you have to deal with that, you should absoluetly go after them monetary since that is the only option that seems to have a voice in their eyes. Hit them hard in the pocket because Taxol and Abraxene are also on the market. I have taken them both and they seem to have less side effects and I know Abraxene doesnt' cause allergic reactions.

if they don't want to help us, they should at least give us a choice considering its not hop scotch play for us, its the difference between life and death and permanent disfigurement.

If you need me to sign a petition on your behalf, please forward it to me and I would be happy to sign it for you....

Good luck in your righteous crusade.

okblessed · April 2008

I really wanted to make a statement to the drug company but that one lady made me feel so bad that I guess I lost my momentum. Yes, cancer is rampant - my grandmother and 2 of her daughters have died of breast cancer but the BRAC shows no connection. I am the first niece ... 3 of the 8 women I work with have had bc in the past 2 years. Something is causing this and it seems like cancer is such a Big Business that no one is really concentrating on the search for the cure. I am not sure how we can unite. I did file an 'incident' report with the taxotere drug manufacturer but haven't heard anything back. If anyone has ideas as to how we can make an impact please share. I appreciate everyone's caring and support for one another.

okblessed · April 2008

I really wanted to make a statement to the drug company but that one lady made me feel so bad that I guess I lost my momentum. Yes, cancer is rampant - my grandmother and 2 of her daughters have died of breast cancer but the BRAC shows no connection. I am the first niece ... 3 of the 8 women I work with have had bc in the past 2 years. Something is causing this and it seems like cancer is such a Big Business that no one is really concentrating on the search for the cure. I am not sure how we can unite. I did file an 'incident' report with the taxotere drug manufacturer but haven't heard anything back. If anyone has ideas as to how we can make an impact please share. I appreciate everyone's caring and support for one another.

okblessed · April 2008

Thanks Pam. As you know by experience, we are really 'tender' walking through this and it is hard not to get hurt. I am going to develop a myspace page and provide the contact information for people to voice their concerns to the manufacturer of taxotere. I believe that will be the most effective way to get the 'side effects' message changed to include long-term/permanent issues. Without the change, doctors are frequently unaware also. I really think my doctor is shocked that I burned so badly and that my nails all fell off - he had no idea about the hair. Please know that all comments, offered in empathy and compassion, are truly welcomed. We are here to walk each other through scary and difficult times. I am so grateful for your positive remarks - the lady who came down so hard on me surely does not realize how much that hurt. I can't imagine that any bc 'victim' would want to cause pain to another. Have a wonderful day and know that we are very blessed to have the opportunity to share our lives with one another!

jacqueline56551 · April 2008

ok blessed: sorry to hear about your permanent hair loss. I finished taxotere last June and although my hair is starting to grow back I still need to wear a wig. When I was on taxotere I had such painful joint and muscle pain that I spent most of my time in bed despite being on prednisone. After finishing treatment I tried to find information about the debilitating side effects that I had (my ribs and lower back are still sore) however I couldn't find anything. I think sometimes the drug companies fail to tell the whole story.

Good luck on your struggles with the "big" drug company.

Jacqueline

Maeve · April 2008

After becoming frustrated at my lack of hair growth after receiving Taxotere I thought I would google taxotere and hair loss and I'm so glad I did, I know it's not much comfort but I too have had no eyebrow re-growth and my head is rather monk like. I was diagnosed at 29 and I too suffered from awful joint pain during treatment. If there are any helpful hints on how to promote regrowth I would be so grateful.

heatherpalmerton · April 2008

Hello, okblessed, I am so sorry that you are going through this. cancer just sucks for all of us. whether we are stage 1 or stage 4. I'm stage 4. I am now at the end off my first 3 month cycle of taxotere. When I went for my nurse consultation they went through everything about taxotere, thank God they were very thourough. The percentages of all the possibilties with reactions to taxotere, Yes hairloss was one of them. I was also the 2% to have a drug reaction. OH that was fun, anaflactic shock was pretty scary. Once again, I thank my ONC and staff for being there and making it so I could continue my treatment. I truly believe this is working for me. I also wanted to share with you and you may have allready gone there, (taxotere.com) It explains alot about this drug. In my opinion I feel the pros out weigh the cons. When it comes to living or dieing I would rather live.

I can say this because I have defied death several times do to scleroderma and breast cancer. please don't get me wrong, I do understand your passion, I think that the drug is doing more good according to stats and that would be very hard to fight. I hope that your ONC are allways thorough with you. Also one thing that I have learned about coming to this site, you definatley have to be your own advocate when it comes to your health. Also there are alot of ladies who have done alot of their own reasearch or just have experienced it.You will find they can be a great help. I hope the best for you and Good luck with your journey. Heather

Also, I had a customer come in to safeway and tell me she HAD alopecia, the drs said it wouldn't come back. she had a full head a hair. we talked about diet. getting rid of simple sugars and changing her diet helped her hair grow back. I wish i could have talk to her more.

okblessed · April 2008

Hi Heather! YES - I wish we could learn more. I am truly going to do everything I can to get hair regrowth because it is so hot here in Oklahoma in the summer [actually it is hot in a wig about 50 weeks out of the year]. I am designing a 'hairpiece' actually a 'half' wig that fastens onto a crocheted headband that is really cool and looks 'cute'. At least I feel feminine in it and can workout, walk whatever and not get so hot. Perhaps we can solicit results from others who have been told they 'had' alopecia and regained hair.

I just had a visit with my oncologist last week and he said I am still his only patient with this significant hairloss for this duration of time. Makes me wonder what else it has effected that I don't know about.

Any ideas on how to find formerly 'hairless' people for advice?

I think I would do just about anything as the days are approaching the 80 and 90s

Pam in Oklahoma

okblessed · April 2008

Hi Pam - nope, just the same little balls of fuzz. BUT my cat scan came back that there is no cancer on my lung, it is only scar tissue associated with the radiation. I have been sweating that for the past 90 days - blessed once again!

I am designing a wig that fastens on a wide headband that hopefully will be more comfortable for the summer and for working out. If I can put it together as I 'envision' it then I will even be able to swim in it.

I am getting a breast casting done on saturday = which i will artsy up - it will be one of about 15 auctioned off for breast cancer research. Glad to be able to participate!

Thanks for checking on me - how are you?

jensjourney · April 2008

Hi All I am brand new to this site:

I just went to the website for Taxotere and it does acutally mention the nails may fall off, and uses the terms Generally hair will return, it doesn't actual say it will. Check it out, I am sure they have covered themselves with the generic statements for any lawsuits. Let me know what you think. I am going for my 2nd treatment on Tuesday, I still haven't lost my hair yet though, just waiting everyday so I can shave it Kiss okblessed I would love to see what you design, let me know when it is done. I will look for some more info for you on regrowth, etc, for your hair condition, I completely understand. Maybe we have something out here in CA. Like I said I just started chemo 16 days ago, I have a year of it, I on doing TCH, I have two cancers in the same breast, one her + and the other - so it is rare and only being 34 self diagnosed on top of it, with my two little kids, I am tired already. Any tips out there on feeling good, I got sick already from the kids they are 3 1/2 and 5, and always have a cold. thanks I love this site it already has been useful. Has anyone changed their diet? My Drs have me on a very strict diet, which I am already 5'6 129lbs, and barely eat anything but steamed veggies and brown rice. They want NO hormones and only organic products anyone else?

http://www.taxotere.com/consumer/taxotere_treatment/side_effects.aspx

okblessed · April 2008

Great! These are the changes I asked for on the 'side effects' warning. I filed a complaint 'request to update side effects' in September of 2007 with the company and they were really ugly in their response so I thought it would take the FDA to get the information corrected, reason I sent a copy of the request to the FDA.

Thank you for noticing that they have added the updated side effects.

okblessed · April 2008

Hi - I had horrible side effects but really managed to do pretty well. I took lactobacillus - probiotics to help build my immune system so I never got a cold, flu, virus [and I work with the public]. I also took Vit C faithfully everyday 1000 - 2000 mg. I ate no raw fruit or vegetables [watched out for bacteria- frozen are safest]. I sat to do everything. Ate a lot of sandwiches [hold up on whole grains because your insides are raw from the drugs] and had a chair in the shower. The hardest part was letting my friends come in and do daily chores. One mopped and vacuumed once a week, one did laundry once a week --- all those things while I sat on the couch and smiled. That was hard - first to ask for help. Then to sit and watch friends and coworkers do my stuff. You CANNOT do it without asking - ask one friend to solicit and coordinate help. We have bonded in ways no other friends bond - women helping women do the things that they would never want anyone to do for them.

My best advice --- ASK FOR HELP! ASK EVERYONE!

okblessed · May 2008

Hello - Just checking on you to see how you are doing. I hope that you are pushing through and that the worst parts are over.

I am wearing my 1/2 wig and have sewn bottons on it so that I can change out the headbands - works pretty well. I have found a brand of wigs called Outre Quick Weaves [jillian, kendis are the styles I am using]. I get the wide crochet headbands, sew buttons on the wigs and then 'button' the wig onto the headband. It works better than a full wig and makes me feel a bit less self-conscious. Stays tight - you can actually swim/shower in it [and works for other intimate times also].

If anyone has any other hints or ideas, especially for surviving hot summers, please let me know.

heidiandcompany · May 2008

Hello-

I have 3 severe reactions to Taxotere with extreme dizziness,constipation and profuse sweating from my head for up to 6+ days after treatment. This is dibilitating, and worse than the double mastectomy. To cope I must lay down and just endure it. I am drained from the exterience.

I just completed my 3rd of 5 chemo treatments and I can't imagine getting 2 more. Constipation problem was fixed with new meds, but what about the rest?

Has anyone had similar problems, and did anything help? My docture says my reactions are rare and I am allergic. I can stop treatment if it is too bad.

I want to go on, but need some answers.

okblessed · May 2008

Hello Heidi - I also had extreme reactions [see previous entries] and after my first round the doctor said I just needed to allow my body time to adjust. After the second round, i could hardly walk, bathroom was an extreme issue, my eyes teared so badly that they had to enlarge my tear ducts, ... he cut my dosage considerably. Honestly, I was so sick that I can hardly remember the details. All I can say is that your doctor might consider lowering the dosage to a point that your body can tolerate but the drug still be effective. My cancer has not returned despite the lowered dosage.

This will pass, I know you are miserable now but you WILL get through it. Pamper yourself, sleep as much as you want and eat whatever sounds good, drink as much as possible to flush your system [move the drugs through and out your body]. I took soaking baths everyday with epsom and sea salts to pull the toxins out also. The warm bath also helps you with bathroom issues. Sometimes all I did in a day was drink a shake, coke, crackers, take a bath and 'sleep' to old movies. Friends came in and cleaned, did my laundry, changed my linens - and quietly left.

Just know that this is for a short time only.

OkBlessed

Kathy61 · May 2008

I wish to stand up and be counted among those who have experienced permanent hair loss from taxotere. I finished my treatment in January 2007. I expected my hair to grow back just like it did after I received CEF treatment in 2002. This is what did not go back to normal for me. The middle half of my eyebrows are barely visible, and the outer half are bare. They used to be brown/black. I have a couple of underarm hairs (too bad the Taxotere couldn't just target those areas), and less hair on the rest of my body than I used to have. I have thin hair all over my head. It is the same texture and color that it used to be, but there is hardly any there, and the top of my head shines like glass in the sunshine. I am interested in hearing about who else this has happened to. I also had abdominal bloating and looked pregnant while on treatment, and for months afterwards. One of my eyes continually waters, and they are too sensitive to routinely use eye makeup. Frustrating, when one is trying to "look good" and "feel better." My scalp still feels tender and itchy.

okblessed · May 2008

Hello Kathy! So good to hear from you. I had forgotten to mention the bloating - I can't wear any of my clothes from before bc. They all fit except for my stomach - which despite walking, giving up my daily coca cola, eating tons of salads, ... will not go down.

Now that we are establishing that there are numerous ones out their with no hair 'regrowth' what shall we do?

I spoke with a doctor in NY yesterday who is sending me a formula of minoxidil and something else [will fill you in when comes in mail] that he says will stimulate the follicles for regrowth after taxotere. I am to take photos for documentation so that he can monitor growth by email. I will share with everyone what effects the product has. I am trying to not get my hopes up - but am glad to have any hope. The doctor spent a long time on the phone with me asking all types of medical and nutritional questions as well as kinds of shampoo I use.

If anyone else has ideas - please share!

Pam

okblessed

heidiandcompany · May 2008

Thank you okblessed for your message.

I had no idea what the TC would do to me. I am worried about permanent damage to my body. Damage like weak bones, or being in too bad of a condition for breast re-construction surgery-ever. I recently heard these things happen frequently.

Also I have stomach bloating,and my face is swolen; but I thought it was from the steroids I take and before & after a chemo treatment.

Does anything relieve the bolating?

Thx

Heidi

okblessed · May 2008

Hello Heidi - I am sure that part of the bloating is from the steroids. Try to remember that all of your 'insides' are dealing with the drugs also - I remember how swollen my mouth and throat were - and how much things 'going out' hurt - all of your mucus membranes are struggling and all of the 'fast' growing cells are being destroyed and then they try to rebuild themselves. Your body is going through extreme trauma. Treat yourself as kindly and gently as possible. I know how hard it is to just 'rest' but you need to not feel guilty about allowing your body to heal. This is the time to relax and visualize those cancer cells being destroyed and carried out of your body and new, healthy cells replacing all the old ones --- gosh, just the thought of how hard your body is trying to heal itself should allow you to just rest and be in awe of the amazing processes going on.

You are going to be a totally new woman soon! with a strong healthy heart! and beautiful new skin!

okblessed · May 2008

Hello Heidi - I am sure that part of the bloating is from the steroids. Try to remember that all of your 'insides' are dealing with the drugs also - I remember how swollen my mouth and throat were - and how much things 'going out' hurt - all of your mucus membranes are struggling and all of the 'fast' growing cells are being destroyed and then they try to rebuild themselves. Your body is going through extreme trauma. Treat yourself as kindly and gently as possible. I know how hard it is to just 'rest' but you need to not feel guilty about allowing your body to heal. This is the time to relax and visualize those cancer cells being destroyed and carried out of your body and new, healthy cells replacing all the old ones --- gosh, just the thought of how hard your body is trying to heal itself should allow you to just rest and be in awe of the amazing processes going on.

You are going to be a totally new woman soon! with a strong healthy heart! and beautiful new skin!

Kathy61 · May 2008

Heidi,

Did you ask your Dr. if the stomach bloating and swollen face is from retaining fluid? Maybe they could give you diuretic medication to relieve it. I had a bloated stomach while on Taxotere, and because the pamphlet mentioned only leg swelling, it did not occur to me that fluid could be retained in other places. I never complained about it, but I wish I did.

okblessed · June 2008

update on hairloss

i have been using the minoxidil + retin A formula for a month now and am seeing quite a bit of regrowth to areas that had nothing before

NO I STILL DON"T HAVE HAIR but I have fuzz where there were only slick spots before so the formula is doing something and I now have HOPE for hair!

Also, you might want to visit www.breastimpressions.com to see my breast cast in the art show. The organizations casts womens breast prior to surgery -- this year they selected 15 post surgery casts for auction.

It was a fun experience! Can't wait to see if my creation generates any money for the organization.

Blessings to everyone!

Pam

okblessed · June 2008

How are you doing? Any updates on your hair? Pam

okblessed · June 2008

Hi CalGal - just checking in to see how you are doing. Please update me on hair regrowth and your well-being. Hope you are strong, healthy & 'hairy'!

Blessings,

Pam

okblessed · June 2008

Hi dhettish - wanted to check on you also. How is hair progressing? I am really excited to get this fuzz on the bald spots. The way it was explained to me is that minoxidil does regrow hair - but the retin A sloughs off the skin [like it does on the face for acne] and opens the surface of the follicle so that the minoxidil cn saturate the follicle. Makes logical sense to me. I am working with a hair professional who 'restores' hair and he is going to test the formula too to see how it works on some of his clients.

I am still wearing - and loving - my half wigs buttoned onto the stretchy, crocheted headbands - much cooler than full wig AND believing for more hair with the formukla.

Please let me know how you are doing.

Blessings,

Pam

okblessed · June 2008

Pam to Pam

How is the hair? I am posting because I am getting some small fuzzy stuff on my bald spots Laughing

It looks like my legs if I didn't shave for a week - not great but something! I promised myself I would try this formula for three months. The doctor said it would take that long for the hair to 'cycle' into what looks like real hair.

My other Pam friend has had two real haircuts now so I guess I will have to cross her off our 'hairless Pams' list --- just want you to know I appreciate you sharing this experience with me.

Blessings, Pam in Oklahoma!

okblessed · June 2008

Hello Pam - I know you must be stressed about a second round but stay strong and please let me walk through this with you.

I would really like for you to try one of the half wigs I wear with the crocheted headband. If you would like to try one give me your favorite 'haircolor' and I will make one for you. I am actually going to market them later on and you can be one of my 'reviewers'!

If I can do anything please let me know.

My email is kirbypk@yahoo.com

Just another bump to work through.

Blessings,

Pam

carol1949 · July 2008

Hello, friends,

I also am on taxotere, so a little concerned, as I had thin hair before the dx. However, as a former hairstylist and educator, let me remind you that there are many things that can cause hair loss. One in particular that is considered possibly related to b/c, is thyroid issues, and certainly stress. If you do some research, I think you will find that many people have thyroid issues after chemo &/or radiation, if they didn't have it before.

There is also a product line from France that is very good for promoting hair growth without the chemicals that are in Nioxcin or Minoxidil type formulations. (Phyto - products) (Phtologee)...You can check their program out on line. They have a product that works as a vasodilator, and also vitamins for the hair, etc. I used them with much success prior to my b/c dx. The nice thing about them, is they are plant based, and the theory is to teach the body to take over what it is supposed to do, where with the others... they are a life long commitment.

All in all, I agree, that this should be disclosed and I will take one day at a time to deal with it's posiblility, For now, I am grateful for each day I have, and I pray for everyone of us.

Continue the research and see if the thyroid is a possibility.

taxotere and permanent hair loss

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