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Jul 23, 2012 08:43PM, edited Jul 23, 2012 08:58PM
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.