May 15, 2012 11:07PM momof3boys wrote:
I finished 4 TC tx on March 2nd...I have hair growth all over my head. It's short and fuzzy, but definitely there. I think that SE is extremely rare, so try not to get worked up over it.
Hang in there!
Regimens, side effects, and support from others going through chemo.
Posted on: May 15, 2012 11:05PM
I had my first of 4 T/C today. Now I have run across some threads about PERMANENT hair loss with Taxotere. Can I please hear your experiences with hair regrowth with Taxotere? I'm really scared to death now. My onco said my hair WILL grow back but now I'm worried. I hope to hear some positive stories.
Posts 1 - 30 (129 total)
May 15, 2012 11:07PM momof3boys wrote:
I finished 4 TC tx on March 2nd...I have hair growth all over my head. It's short and fuzzy, but definitely there. I think that SE is extremely rare, so try not to get worked up over it.
Hang in there!
May 16, 2012 05:36AM Kcrab wrote:
It took 12 weeks after my last TC for my hair to really start growing. It seemed like a long time, but I think it's pretty normal. I just can't believe these chemo curls!
May 16, 2012 06:17AM Jennt28 wrote:
Your onc cannot guarantee that as it is well documented that a small proportion of people will have permanent hair loss from Taxotere. It's one of the reasons I asked for a Taxol treatment option...
Jul 8, 2012 06:36PM LtotheK wrote:
I can tell you this: my hair is absolutely thinner, and I think it "blew out" the soft hairs, like the ones at my temple, eyebrows and eyelashes.
Try not to get worried about it, because the truth is, beating cancer is so much more important right now. If you would like, try out rosemary oil, which is supposed to be excellent for stimulating growth and not problematic for ER+ cancers.
My doctor would not let me use cold caps. My feeling: if they were tried and true, they would be standard practice at most hospitals. Most women want to keep their hair. I rocked the bald, but got sick and tired of being the Cancer Spokesmodel for 2010 (hot flashes precluded wigs, I can't even imagine July in a wig with 20 hot flashes a day).
Jul 13, 2012 03:44AM curveball wrote:
What, exactly, is "extremely rare"? Has anyone seen a study or anything that gives a percentage of people treated with taxotere who lose their hair permanently? I just got my Oncotype test results back and am scheduled for my first chemo treatment of TCx4 next Wednesday. If I want to suggest a different regimen to my onc I need to do it before then. I tried to search PubMed through the library here and got a number of hits but most had no abstracts available so I was unable to find out what the results of the studies were. The possibility of losing my hair permanently has really got me anxious. I asked Dr. F (the onc) why TC rather than some other regimen, and he said because the alternative would be a combination that includes adrimiacin (sp). That carries a risk of heart damage, and is a longer treatment. I don't want to damage my heart but I think I'd be willing to do a longer treatment if it is as effective as TC but with less risk of permanent baldness.
Jul 13, 2012 07:35PM calamtykel wrote:
curve- are you talking about Taxol or Taxotere when your doctor says "TC"? Yes, Adriamyacin added to the mix is a whole other set of issues including nausea and heart related risks.
However, if you are having TC, it may be Taxol and not Taxotere.
Jul 14, 2012 04:04AM christina0001 wrote:
I finished TCH (still getting the H though) six and a half weeks ago and I now have the same amount of hair as a kiwi. It is coming back!
I searched and could not find any hard stats on how likely it is to have permanent hair loss from taxotere. Below is the information I did find. Honestly there are probably a lot of other, worse things that are more likely to happen than this side effect.
The taxotere website http://products.sanofi.us/taxotere/taxotere.html#section-9
does not even list permanent hair loss/alopecia as a side effect, although it's known to happen. The fact that it is not listed reassures me that it is rare.
Here is a study of six cases in which permanent hair loss occured after taking taxotere for breast cancer. If all they could find was six cases, again, that is really rare IMO.
Jul 14, 2012 04:24AM , edited Jul 14, 2012 04:31AM by rose50
Hi girls... I am 7 months PFC from TC.... I have a bald crown and zero eyebrows. I had a scalp biopsy last week and will get the results next week. How I wish I would have known this possible SE, I would have asked for Taxol. My onc still denies this as an SE. She promised me every time I saw her I would get my hair back... It is not that rare. Google A Head of Our Time. Hundreds of women from all over the world with permanent hair loss. I am holding out hope until I get my biopsy results, but I can tell you as a 47 year old single ex-fashion model that made her living off her hair... it is very devastating.I think any woman facing this would agree it's an aweful SE to have to deal with, especially if there were options not presented..
Jul 14, 2012 10:45AM curveball wrote:
I kept looking for more information, and eventually found the website A Head of Our Time, and one of the articles there led me to a newspaper story. A comment in response to that story included a link to information provided by the manufacturer of Taxotere to the Canadian health care system. One of the studies done on Taxotere was called TAX316. It compared TAC to FAC for adjuvant treatment of breast cancer. I am not sure what stage or node status the patients in the trial were at, nor how many cycles of chemotherapy they received. I quote verbatim from the section of the document describing "adverse events":
"Other persistent reactions: The following events were observed to be ongoing at the median
follow-up time of 55 months: alopecia (22/687)..." (see pp 15-18)
Twenty-two out of 687 is about three percent. I don't like those odds. I will definitely ask my MO about other chemo regimens.
Jul 18, 2012 01:01AM rose50 wrote:
I just got diagnosed with "Taxotere associated alopecia" yesterday. This sucks!!!!!
Jul 18, 2012 03:17AM christina0001 wrote:I am so sorry that anyone would have to go through this.
Jul 20, 2012 02:42PM sweetbean wrote:
robo, i am so sorry! that totally sucks. I had two friends that got Taxotere - one got her hair back, the other didn't. Oncologists are totally irresponsible when it comes to this side effect.
Jul 20, 2012 02:54PM lago wrote:
I found out about this after my first tx back in Oct. 2010. While my hair came back (I assumed it wasn't going to because I kept falling into that 2-20% category) I still agree we should be warned. My chemo binder specifically says you will get your hair back.
I first met Robo when she had hair… as you can see from her avatar she had a lot of it. Robo I truly hope you get more and that this diagnosis isn't 100% correct. Totally sucks. ♥
But Robo is still gorgeous.
Jul 20, 2012 06:21PM rose50 wrote:
Thanks girls... I am still in a state of shock and disbelief. I can't stop crying.(as lago knows) I know I have to deal with this, but I'm just so exhausted from this last year... I don't know that I can handle another 'diagnosis' right now. I went through getting the bc diagnosis, cutting off both breasts and going through 6 rounds of chemo like a champ. But this has truly socked me right in the gut. And to add insult to injury, my onc refuses to address or admit this. She just looked at me like I was some crying freak when I last saw her. I can't wrap my head around the fact that she can say that she's never seen this when it's all over the internet and was discussed at the 2009 bc symposium in San Antonio? I have never felt so betrayed....
Jul 20, 2012 08:12PM nikola wrote:
Robo, I am sorry you are going through this. I received 4 Tx of TC in 2010 and my hair did come back. BUT I remember going to see my onc two months after my last Tx and he asked me to see my head. When he saw my hair growing back he seemed relieved. He told me 6% of people develop baldness after TC. He never told me that before starting chemo. I think they are afraid we would choose another Tx (possibility to damage your heart) over TC if we knew the facts. I know I would consider other Tx if he told me 6% ahead of time.
Jul 20, 2012 09:55PM Char2010 wrote:
Robo, I am so sorry. That was one of my greatest concerns. I did not hear about this SE until after my first treatment - and was on pins and needles until the hair started to grow. The hair at my temples and eyebrows is definitely thinner and weaker though. Drs and the drug company are irresponsible whe it comes to this.
Jul 20, 2012 11:17PM ckolendar wrote:
Okay girls now I am totally freaking out. I was prepared to lose my hair...but not prepared for it not to come back at some point. I am scheduled to start TCH on 08.14.12...guess I better do some quick studying.
thoughs are with you Robo.
Jul 20, 2012 11:23PM 007_Kara wrote:
I had 4 rounds of T/C. When it started to fall out, I just shaved my head. It was very liberating to have some control over the situation.
I was still bald in the beginning of March but by early May I had a full GI Jane hair. Mine grew in pretty quick after I stoped the Chemo.
Now I am the fuzzy beast I always was, and maybe more now that I am on the Tamoxifen.
Just remember, everyone's body is different and reacts uniquely.
Jul 21, 2012 02:56AM rose50 wrote:
Hey Char!!Long time!! Hope you are well...Thanks girls for your words... I am super happy for everyone that got their hair back. I just can't believe I'm not one of them!! I have the "horse shoe" like an old man. And some hair on top, not much, but my crown is bald...like a grand-pa. Too bad I'm 47!! Yes, everyone reacts differently, but it would have been nice if my onc told me of this possibility and given me a chemo option, like taxol.... or I would have done the cold caps. But she talked me out of those with her promises of my hair returning.
Jul 21, 2012 03:04AM Rachel1966 wrote:
I finished my 4 Taxotere treatment December 2010... I have stunt growth. My hair did grow back, but it came back with severe chemo curl and ends before my jawline.... 2 years out and not one more inch in growth.
Jul 21, 2012 05:18AM mrsnjband wrote:
I had 3.5 doses of Taxotere. It made me horrible sick with permanent motion sickness. My hair was very slow to regrow, my avatar pic is 1.5 years out and it is about an inch long. It came in from the bottom up and was very thin on the top. I have full head of hair now but still much thinner than what I had before chemo. Very little eyebrows & almost no lashes. I was definately not warned about this side effect.
My doctor always seemed shocked when you get neuropathy or any other side effect. Like no one else has ever had that happen. I'm sure I am not the exception to everything.
Jul 21, 2012 01:49PM lago wrote:
Rachel, mrsnjband Sucks this has happened to you as well.
mrsnjband your doctor was surprised about neuropathy?! I remember after tx 2 my left heel going numb. My onc told me if it got worse she would reduce my dose. I still have the numb left heel (not too bad). I was told if it doesn't go away by 2 years PFC it's here to stay. I'm 18 months PFC. I'm not holding my breath at this point. Not too bad though and it really depends on the weather. It doesn't like humidity or cold so I am now good at weather reporting. (BTW I wear my hair shorter than yours. I actually love the short hair. Granted in my case it was my choice).
Jul 22, 2012 12:28PM , edited Jul 22, 2012 12:28PM by sweetbean
Ask about TH (Taxol + Herceptin) and FEC. I think it's TH x12 and FEC x4. It's one of the newer protocols for Her2+.
I did ACT +H and while my hair grew back, it took FOREVER, it's not thick, and one of my temples is super thin. So thin - it looks like a bald spot. I'm ready to rub Latisse on it, I swear to God. And my eyelashes are not back, either - I definitely want some Latisse for them.
robo, again, i'm so sorry. it really frosts me that your onc acts like this is something unheard of. I mentioned Taxotere-alopecia to my onc in conversation and she did the same thing. I thought she must be really uninformed or deliberately obtuse.
Jul 22, 2012 04:06PM rn4babies wrote:
When I asked my MO about side effects of T/C, she said "Peripheral neuropathy. And your hair WILL fall out and it WILL grow back". I didn't know about the possiblity of permanent hair loss at the time to question her about it. I know 3 women personally that were on T/C and all are growing beautiful heads of hair now. It must be rare, but sadly enough a possibility.
Jul 23, 2012 05:37PM pjgt wrote:
I started chemo 2 years ago August 10th and I was given Taxotere. I am one of those that has big bald spots and thin hair all over, thin eyebrows & few eyelashes. I have talked to my oncologist about it, & the suggestion was transplants, a spray on the scalp to help cover up baldness, etc. Before chemo, my hair was so thick that the hairdressers treatened to charge me twice as much. I have tried rogain with little if any improvement. All of this being said, I am so thankful to be cancer free and I have some really cute wigs. I will not go out in public without my wig, but it would be nice to look a little better around home. Has anyone had good results with Biotine and if so, how much do you take? In the meantime, be thankful for the treatment, good health, and get a cute wig. I can get ready faster than my husband now!
Jul 23, 2012 09:43PM , edited Jul 23, 2012 09:58PM by chelseasanfran
Dear Robo and Rachel, my deepest empathy to you and all of our sisters who were not informed about all of potential permanent side effects from chemo and treatments. It would be great if the Treatment and Side Effect Fact Sheets included this information, so that women don't have to keep going through these same issues over and over, combing through hundreds of messages and topics to find an answer to one specific question. I wish there was an effective search function on this website.
I am so sorry you've had no hair coming back. I posted a similar concern post- chemo when I lost it all into my second cycle of Cytoxan and Taxotere. I also posted a recent update with my hair returning - all below.
I started using Monoxidil post-chemo on my head and eyebrows but stopped when my head peach fuzz started, because I was growing hair on my cheeks under and to the side of my eyes. I have restarted the Monoxidil just for my head and mostly for my front forehead, where my hair line is starting much further back than it was before chemo.
My eyebrows have grown back thinner and a little wilder and my eye lashes have come back to maybe one third their volume. I describe my hair returning below.
I would recommend seeing a good dermatologist/hair replacement specialist who works with cancer patients and ask about Monoxidil. I have used it at the recommended the male strength concentration for many years. As for your eyelashes, there is Latisse: (bimatoprost ophthalmic solution), which I've never used but can also have permanent side effects such as darkening of the pigmentation on the eyelids and below. (also caution if you have high optical pressures). Both the Monoxidil and the Bimatoprost solution only work as long as you use them, so when you stop, the hair falls out again (somewhat like botox - not a permanent solution), but still worth investigating.
Re: Neuropathies, I had severe neuropathies during and post-chemo, primarily in my fingers and toes.
I also had a variant of lyphadema called cording, which is damage to the nerves leading from the arm pit (probably brachial plexus) and causing pain from my arm pit down to my wrist with arm extention.
1) I have been taking Gabapentin since starting Chemo. I now take Gabapentin 300 mg at bedtime for neuropathy and to help with sleep. Some recommend higher doses 2-3 X q day.
I now take lower amounts of items 2-4.
2) I took 10 gm L-Glutamine powder 3 times daily in between meals for the first 7 days post chemotherapy; then dropped down to 10 grams once daily on the rest of chemo cycle. I repeated this each cycle of chemo. Glutamine may help nourish mucosal membrane and fuels immune cells; it may reduce Taxotere related neuropathy. You can use is as oral swish, hold for 30 seconds and swallow to prevent mouth sores.
3) 600 mg alpha lipoic acid with meals. A few individuals (from the Cancer Center where I had my Chemo) report slight burning sensation taking alpha lipoic acid. Based on diabetes research, alpha lipoic acid may reduce neuropathy.
4) 1000 mg acetyl-L-carnitine 2-3 times daily with meals. One may want to take them a week after chemo if one has nausea/dyspepsia, as it can aggravate one's GI issues. Acetyl-L-carnitine may regenerate nerve fiber.
Re: Bone and Joint Pain
5) I also take Boswellia Serrata, which is supposed to be an herbal anti-inflammatory and help with joints. I take about 300 mg twice a day - some take it 3X per day and in higher doses.
6) Thee is some evidence that powdered Ginger Root may have a positive impact on osteoarthritis: 500 mg to 1 gram 2-3X q day.
7) A nutritionist at the Block Center recommended Michelle's Miracles - Concentrated cherry juice for osteoarthritis, but I haven't seen any evidence on this. I am still taking it, but it's been discontinued at Whole Foods and may be difficult to get soon.
Then I also take a variety of supplements (about 12) prescribed by Keith Block
Nails: My toe nails and finger nails became very deformed and still are - the big toes have come out almost completely. My finger nails have started to grow back in fairly normally, but my toe nails are still very quite deformed.
Below are previous hair postings and one photo message by Otter that I found very helpful. I hope it's not depressing for you. Otter's photos didn't transfer here so, if you're interested, go to the topic discussion under the Chemo Forum.
Topic: Very worried about hair regrowth (lost it all) after Chemo
Forum: Chemotherapy - Before, During and After
Posted on: Apr 28, 2012 07:54 PM, edited Apr 28, 2012 07:57 PM by chelseasanfran
All of my body hair fell out/off after my second chemo treatment with Cytoxan and Taxotere in early February - head hair, eybrows, arms, legs, genital region - entire body. My eyebrows were dark brown, and my hair fairly grey on the crown to start, but almost all grey-white after two cycles of chemo.
All of the wig services recommmended by the hospitals where I received services were pretty generic - only synthetic wigs, not a huge selection, and it was difficult to find a good style and fit and even with the more expensive ones, one that was comfortable to wear. After 2 hours in one store, I ordered two synthetic wigs, but then they got the order messed up and I finally just cancelled them both. I then thought about getting a made to order real hair wig, but noone could give me any referrals and with all the other things I had to deal with, researching, interviewing and visiting various wig salons seemed overwhelming.
So I've made due with scarves, hats and a bare head (which at least many say is quite well shaped). I bare my baldness with close friends and associates who either don't care or whom I don't care that they know or might feel uncomfortable with my naked head. It's been a little harder on the professional and social side though, as I can't really feel as though I am looking good or like myself with a hat or scarf, no matter how neat and fashionable the one I'm wearing may be.
I had my last cycle in early March and I'm now just beginning to get some growth on my head - mostly like peach fuzz - like newborn hair - lanugo. If it all grows back like this, it's definitely not going to look like normal hair and will be so sparse as to look like someone about to either lose all their hair or someone who is going bald.
All of the information I've read or gotten from health providers has been very general and varied. I've heard that it can take up to six months for it to grow back and that what does grow back is often very different in color and texture than the hair one had prior to chemo.
So, I'd really like to hear from women about their hair loss and regrowth experiences, including any of you whose hair may not have grown back to the point that you don't have to continue to wear a wig or hair pieces/covers.
I wonder whether any of you have used Monoxodil and if it helped in facilitating regrowth, and also if you've heard or tried any other treatments to help with regrowth (nutritional supplements, acupuncture, heat, massage etc.). I also wondered if anyone tried the scalp cooling technique or Monoxidil to reduce hair loss in the first place with chemo.
Thanks so much for any comments. I just recently started posting here and I really appreciate all the great feedback I have gotten from women.
Apr 28, 2012 08:23 PM, edited Apr 28, 2012 08:29 PM by otter
Chelsea, what you're describing about your hair loss is pretty typical. And, no, you most likely will not need Minoxidil; you just have to let Nature do things on its own sweet time.
It does take time. Like you, I had Taxotere & Cytoxan (4 rounds at 3 week intervals), and I lost all my hair, everywhere. The eyebrows and eyelashes hung in there until the 4th round of chemo, I think. What was terribly frustrating was that, although it took around 3 weeks to lose my hair, it took many months (many months) to grow it back. I think it was 8 weeks after my last chemo infusion before I started seeing a definite "5-o'clock shadow" on my head. Let's see if I can dig up those pics I took...
Here I was in October 2008, about 4 months after finishing chemo and well past the 5-o'clock shadow stage:
This is the progress as of December 2008, about 6 months after my last infusion:
Finally, here's my hair in February 2009, at the 8-month point. I had not had it trimmed yet, so there were lots of curly-curls!
I'd never had curly hair in my life. My normal hair was stick-straight, which it became once again after the curls grew out. Yes, the very first hair to come in was baby-fine and colorless. The normal-colored hair retained those wispy ends, making it look like I'd had my hair frosted. After a good trim or two, the wispy ends were gone and I was left with curls; eventually the curls grew out to my normal straight hair. There are no bald spots or especially thin patches where my scalp shows.
It's difficult to be patient, I know; but your hair will come back. Mine is the same color as before chemo and just as straight and shiny. It's a bit thinner overall, but that's probably because I've been on Arimidex (for estrogen suppression) for almost 4 years.
(ETA: I didn't take Nioxin or Biotin or anything else especially for hair growth. I do recommend the Hair Hair Hair thread, which is full of anecdotes and good advice.)
Diagnosis: IDC, Stage I, Grade 2, 0/3 nodes, ER+/PR-, HER2-
Jul 14, 2012 08:04 PM chelseasanfran wrote:
It's about four and 1/2 months out for me post-chemo with Cytoxan and Taxotere and my hair growth is pretty close to what Otter's was at four months, although it's somewhat thinner in amount and finer in texture (it was thinner before chemo as well). However, while the texture is still fine, it feels a lot healthier than before the chemo. Also, it's starting to curl. It had been curly/wavy most of my life, but then got really frizzy the last year or so before chemo when I was still coloring it. Re: color, I was getting grey and white on top, at the temples and crown just before chemo, then went all white during chemo and now it's growing back a bit more salt and pepper, but we'll see.
I'm not wearing hats much anymore, and never got a wig after all. I will post some photos soon and do so over the next year so that people can see my progress.
Again Rebo, don't give up and please let us know how things progress.
Jul 23, 2012 10:28PM , edited Aug 28, 2012 07:24PM by rose50
hey chelsea... what great info. Thanks. I'm hanging in there!! I saw a derm that put me on 8% minoxidil... have only been on it one week... so we'll see. The bottom half of my head is quite thick and curly, but the top, super thin, straight and wispy, with the crown pretty bald... I am 30 weeks PFC. I am still holding out hope that it may come back :-)... not sure for how long... I either wear a hat or use the Toppix powder or sray paint to go out. With the powder it looks so-so ... just can't get caught in the rain :-) But I'll have to figure out something else longterm if it doesn't come in. Also, maybe the longer it gets... I'll have more to 'work with" I know now that I am very lucky to have as much hair as I have...now that I know the scoop... I also know now that my onc was lying to me... Just all so unneccesary IMO. I could have covered the cost of the cold caps for what I spent on my scalp biopsy and monthly prescription Minoxidil.....and my nerves have been shot!!! I just still can't believe we are not told of this.. I know every possible SE from Viagra because it's drilled into my head every night at dinner, yet they with hold this very very important info from their patients??? Can't figure that one out....