Posted on: Jun 14, 2009 04:04 PM
Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair. I am on FEC100 X3 followed by Taxotere X3. My dosage unfortunately is not a guaranteed success. I am 40 days out from my first treatment and will have my third June 17. So far I have thinned but have not required a wig. I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there. All in all, I am pleased to still have a good covering. If you are using or have used the Cold Caps, I would love to hear your experience. Take care, Candy
Posts 6511 - 6540 (8,385 total)
Jul 19, 2012 12:22 PM ang7894 wrote:
I was never told about this, I would have tried anything to keep hair.. I still have numbing in my finger tips and on my 2 big toes.. I have been out of chemo for about 2 1/2 months I am Begining to wonder if I will ever be back to some what of ANY normalcy for my body.
Jul 19, 2012 02:30 PM dancetrancer wrote:
I'm sorry too Angie. Sucks. I hope your SE's get better soon!
Jul 19, 2012 03:22 PM Laura5 wrote:
Angie, I'm sorry too.
No one told me about them either. My daughter happened upon them on the internet. My oncologist hadn't even heard of them. I don't understand why this is so unknown.
Soon you will start feeling like your old self again, hang in there
Jul 19, 2012 07:27 PM NicoleJasien wrote:
I have never heard of this....wish I would have before I shaved my head. Do you store yours in a normal freezer?
Jul 20, 2012 03:14 PM, edited Jul 20, 2012 03:17 PM by Hortense
I'd never heard of cold caps either; and worse, not one of many the doctors, nurses or technicians I had seen, in all the various offices and hospitals I had been to, told me about them. Not one.
I happened to stumble across a mention of cold caps saving hair buried somewhere on this website - though that didn't happen until my third day of prowling around trying to learn more about breast cancer and its treatments. When I read it it, I was amazed. I started searching for more information, almost afraid it might not be true. I ended up using Cold Caps and can say that while I have shed alot and my hair has thinned considerably, I do still have my hair and that feels so good.
My last chemo treatment was eight days ago and I am curious about what will happen now. I am still shedding, but I expected that based on what my pattern has been so far. I have tiny bristly new hairs sprouting on the two quarter sized bald spots that got frost bitten the first time I used the caps. My caps were too cold and I failed to check the protocol for them - my fault and I learned my lesson. No other hair anywhere seems to be regrowing yet.
I am very happy to report that The Moderators have recently put a link to this thread, "Cold Cap Users Past and Present, to Save Hair", on their Important Chemotherapy Threads for Newbies links page which is excellent. I hope this will help women to find it more easily and learn about cold caps therapy so that they can decide if it is for them.
Jul 20, 2012 04:32 PM Laura5 wrote:
Hortense, Wow, that is great that the mods put a link to this thread in a prominent place! I try to mention cold caps when ever I notice a new thread on chemo has started. I was so thankful that I found out about them before I started chemo. It just makes me sad and mad when someone posts that they would have used them, had they known about them. Why aren't oncologists more informed? I wish I could have told them. Maybe some women don't mind losing their hair, but every women should have the option of keeping it. I gave my doctor several brochures, and asked him to please mention cold caps to his new patients. I feel like it is up to those of us who have used them, to try and get the word out.
Nicole, The caps must be around -33c on chemo day, so they are kept in dry ice or stored in a biomed freezer if the center has one.
tc9876, I think heat was not to be used for 6 months post chemo.
Jul 20, 2012 04:59 PM dancetrancer wrote:
Hortense - that is great news that they put a link to this thread in there!
Jul 20, 2012 09:25 PM Hortense wrote:
Laura5 - good for you to put a mention about cold caps saving hair in new chemo threads. It is a great idea. For all I know, that may be how I found out about them in mid April. If so, thank you very much! I hope other women will spot your posts and look into using cold caps.
Honestly, each of us should make an effort to spread the news, but I understand that we are all dealing with so much right now. I tell everyone I can about cold caps hoping each person will pass on the information to others at some point. The majority have never heard about them.
My local paper would like to write an article about me using them, but I am simply not up to facing it right now. I'm just recovering from my last infusion and not ready to have a photograph taken or answer a lot of questions. Just typing this requires quite an an effort as I have to redo so many typos and trying to make sense is hard as my thoughts tend to drift around on their own. As we all know by now, each day past a chemo session gets better and easier.
I have promised myself to write the head of Memorial Sloan Kettering which would not allow me to use cold caps, forcing me to find a new oncologist and hospital. I'm very happy with my new oncologist team and thrilled that New York Hospital Weill Cornell's Breast Center allows cold caps and really supports women who choose to use them. I was given a very helpful multi page packet of tips for cold cap users by women who have used them there in the past and offered all kinds of advice and help. What a difference the right hospital and cancer center can make.
Jul 20, 2012 10:09 PM sebm9 wrote:
Nicole: the caps are stored in a regular refrigerator freezer inbetween infusions; most of us use dry ice on infusion day in order to get them to the -30C - -35C range at which they are used. A few hospitals have deep freezers for the caps, but it is still relatively unknown in the US. I am one of the earlier users and work constantly to help spread the word.
Hortense, I'm very sorry that MSKCC would not let you use the caps! Three weeks PFC I attended a birthday party for a friend, who has a foundation at MSKCC. Murray Brennan, distinguished cancer surgeon and former chair of the department of surgery, is a very good friend of my friend (and was the surgeon for my friend's daughter, who passed from sarcoma). My friend introduced me to Murray, and told him about my recent adventure. Murray was astonished, as was his wife. He had never seen a chemo patient not lose their hair in his career; he grilled me on my SEs, energy, etc. He was absolutely astonished that I had just completed chemo 3 weeks earlier. His wife, of course, was even more impressed, teary-eyed even.
I had hoped he'd spread word at MSKCC, but obviously not. You absolutely should write to them and let them know that their lack of support sent you elsewhere. I am so impressed that your cancer center has actual organized, supportive info for patients - that is how it should be!
Moderators: THANK YOU for linking cold caps to the new users groups! THANK YOU a million times, for the millions of women who will finally know they have this option.
Jul 20, 2012 11:13 PM Hortense wrote:
sebm9 - Memorial Sloan Kettering also lost a lot of income when it lost me as chemo is expensive, mine ran about $30,000. They must make money on it, even at insurance contracted prices. I had my surgery done at MSK and was quite happy with my doctor and how I was treated there, until I got to oncology when I hit a brick wall.
I will be writing the head of MSK, and when I do, I will be sure to mention to him that at the same time I made my decision to move, Geralyn had four other women who were being treated at MSK call her to ask about cold caps. I have no idea if those women eventually stayed at MSK and went bald, left for elsewhere and used cold caps as I did, or decided against having chemo at all, but he should know that there were five of us in May who wanted to use them. If all five left, MSK would have lost a significant amount of money. (5 x $30,000 = $150,000). How many more might also be leaving throughout the year?
Jul 21, 2012 01:54 PM, edited Jul 21, 2012 01:55 PM by Laura5
Hortense, Try adding a years worth of Herceptin for anyone who was Her2+ and you can add $78,000 per patient on top of the chemo drugs.
I hope you do write to the head of MSK, they need to get out of the dark ages. It is bad enough, that so many oncs and nurses are unaware that the caps exist, but it is far worse, when they do know and tell their patients they cannot use them. I also hope that you write an article for your paper when you start feeling stronger. I do know how you are feeling. While I was in the midst of chemo, Rapunzel (a non-profit founded by a former Penguin CC user) asked me if I would speak at a fundraiser that was scheduled a month after I would finish chemo. When the time came, I felt very emotional while writing about my experience. I knew I would have trouble recounting what an incredible feeling it was, getting to keep my hair. My wonderful, amazing daughters who went to the event with me, came up on stage with me, and read my experience to the audience. If that evening helped even one person discover the caps, I am happy.
On another note, that is awesome that your center was so supportive! Mine was not very supportive, but they did adhere to my protocol as far as timing etc.
Jul 21, 2012 02:44 PM Leveled wrote:
Has anyone who has used the caps not have their hair grow back? I am almost 10 weeks pfc and I am still shedding like crazy......my hair is so thin it's even hard to wear it up in a clip. My lashes and brows are growing as well as chin and mustache hairs but I don't see any growth on my head. Does your hair grow while shedding? ugh this is so depressing.....
Jul 22, 2012 03:12 PM, edited Jul 22, 2012 03:14 PM by Hortense
Leveled - From what I understand, our hair starts to regrow about three months after chemo, so you are almost there. I suspect your's will start very soon.
I'm almost two weeks post chemo, so not as far along as you. I'm shedding, but not as much as I was three weeks ago. My hair is definitely thinner, but it's not to the point that other people notice. While it is hard to tell, I think I may have lost 35%, possibly more.
I haven't lost all my eyebrows or eye lashes, although those too are much thinner. I look very pale and bland, almost as if they weren't there. My lashes have been itching for about two to three weeks so I am expecting to lose them entirely.
I do have hair regrowing in two spots on my head where I had peeled from frost bite. No other areas are growing, so I think I have to wait until hair normally regrows after chemo for the rest of it to start. I didn't realize that my bald spots were regrowing until the new hairs got long enough to bend slightly. I had thought the roughness at both spots was dry and peeling skin. Why they are regrowing and not the rest of my head, I couldn't begin to guess.
Jul 22, 2012 06:00 PM soccergirl wrote:
Leveled- Your hair will come back. It sucks to shed a lot and have thin hair. Remember that although your last infusion was 10 weeks ago, you are really only 7 weeks out. It takes 3 weeks for chemo to leave your system and the affects are cumulative. Although my last infusion was 10 months ago, my oncologists say I am 9 months post chemo treatment.
My last infusion was 9/22/2011 and I noticed regrowth around December. My hair dresser noticed a lot around January and my hair is filling in nicely. I highlighted my hair with no problems at the end of January. I am a perfectionist and I still use clip in extensions. I don't need them but think I look much better with them. I used a hairdryer and flatiron on my bangs 3 months post pcc but was confident that part of my hair was in good condition. I let the rest of my hair air dry.
My eyelashes are thinning for a third time and so are my nails. I got more latisse because I want them thick and long again. I am curious to see when I stop Herceptin 8/7/2012, will my nails become more healthy.
If you ladies are shedding a lot and taking supplements and not seeing results, I am wondering if adding more protein to the diet would help. There are many foods that promote hair growth. I eat them daily because I think Herceptin does affect hair growth. My hair is growing 1/4 to 1/2 an inch a month. With all the shit I am doing, I think it should be a little faster. I will know soon because I am so close to the finish line! I will let you all know if I see a difference.
On another note, I climbed the Half Dome in Yosemite two weeks ago. 18 miles round trip, F*** cancer.
Jul 22, 2012 07:07 PM CousinItt wrote:
I just had round 4/6 TCH on Wednesday. For the second time, when removing the moleskin, several .5 to 1" hairs came off. So, my hair is growing during chemo. Hah! Take that chemo! I win that round. Of course the chemo has won most of the other rounds. Been really sick, tired and weak. Then very busy with my work. I have had greater than normal shedding but my hair is VERY long...3 feet. I expect it will be shorter by the end of this process as the longest hairs will go first. My nails are doing good. Eye lashes and brows are pretty thinned out. I have been taking a silica product, SiONa, which may be helping my nails and hair regrowth. I'm also considering buying one elastogel cap to use bi- or tri-weekly after the PCCs go back. Anyone else tried something similar?
Jul 22, 2012 08:02 PM sebm9 wrote:soccergirl: congrats on your climb! That's fantastic. Last year I swam in Swim Across America's SF Bay event (1.5 mile openwater swim in SF Bay, from the Golden Gate Bridge to Crissy Field). It's a fundraiser for cancer research, including at the hospital where I work. I'd wanted to do it in 2010 but had just come out of rads and didn't have the stamina. The swim was a blast, and I just received the postcard for this year's event. Actually, I received two copies: one for my husband, one for myself. I was about to toss one, then stared and stared at the picture: three women jumping off the boat, the fog in the background. I thought, they sure are having fun! It sure was a great event...then I looked hard: it was a picture of *me*!!!!! Side view in a rubber suit, with a latex cap on my head, goggles, tattoos on my face, and screaming my head off as I leap off the boat into the freezing, choppy water....not my first choice photo to be a "cover girl" of anything, but I'll take it! I guess I need to do the swim again, since I'm a poster girl :-)
Jul 23, 2012 05:38 AM soccergirl wrote:
Thank you Susan! It felt great to reach my goal, now I feel I can do anything. I don't feel like a cancer patient and never really did. Keeping my hair was the biggest factor for me.
Congrats on your swim across the the SF Bay! That seems so cold! That is amazing. The old perception of Breast Cancer is changing and we are making it happen.
Jul 23, 2012 07:00 AM Leveled wrote:
Thanks Soccergirl and hortense......
soccer....you are an inspiration.....My hats off to you. And doing with hair is even better.
Susan, your just truly amazing I wish I had half your stamina and positive attitude.
Jul 23, 2012 08:23 AM hbb wrote:
Soccer girl,F cancer is right! Congrats on your climb! And I definitely believe protein,iron TONS OF WATER,and over all healthy eating helps this whole adventure. Question,you used latisse and still lost your brows/lashes? I'm three in with one to go and I've been religiously using the latisse but I can tell they're thinning. Anyone else have any latisse experience?
Jul 23, 2012 11:01 AM Leveled wrote:
Hbb, I used lasttise befor during and after. I lost all my bottom eyelashes and most of the top. I have like 5 left on each side. I wouldn't describe them as pretty. I lost them 8weeks pfc........they are coming back ever so slowly, but I am continuing to use latisse as well. My brows thinned a lot but they never fully exited.......yet!
Jul 24, 2012 02:03 PM ArleneA wrote:
Susan: I know you did (and probably still are doing) acupuncture. I started today (better late than never, I know) and my DOM is adding Neural Therapy. Are you familiar with this therapy? She has several breast cancer patients (although, I no longer consider myself a bc patient).
Jul 25, 2012 10:58 AM juneaubugg wrote:
Help! I start A/C on Monday. I'm in the northern new jersey area Morristown Memorial. I need help if any one can direct me to any organization or anyone who can help me get prepared and try these??
Jul 25, 2012 02:14 PM Leveled wrote:
Juneaubugg, I am in n.j. and used the cold caps. I also was at morristown memorial. I finished chemo on may 17th. Anything I can do to help I will. Private message me for anything or a phone number and I will call you.
Jul 25, 2012 08:45 PM Hortense wrote:
Juneaubugg - you should contact Geralyn at Penguin Cold Caps to see if you can get caps in time. You need to see if she has them and can ship them to you in time, although as today is Wednesday and you say you are starting Monday that might be cutting it too short. You might have to delay starting chemo a few days until you get them and get them frozen.
Do you have someone who can help you with the caps? You can not manage them alone. If not, perhaps the hospital can give you the name of a person who can be hired to help with you them. I went that route. I hired someone who was familiar with cold caps and who had helped other people with them before me.
Does your hospital have a freezer to store the caps in between treatments? Leveled used them there so she should know if it does.
Jul 25, 2012 09:28 PM juneaubugg wrote:
Jul 26, 2012 06:22 PM Mamacath wrote:
Soccer Girl: congrats on your climb! inspiring for sure. I hope to do a triathalon in Sept but am still in chemo until Sept 25 so I am not sure...I might just go for it and walk if I have to! or travel to a warmer climate and do one in Jan.
does anyone have specific brands of Biotin, Silica and iron that you used to limit shedding? does one brand work better than others? I use Solgar gentle iron 25mg/Kal Silica plus.
3T/Cs down and 3 more to go...hair is thin but still here. so thankful!!