Cold Caps Users Past and Present, to Save Hair
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Sebm9-Why are you not recommending the Elastogel caps for use during infusions? I imagine you were told the same thing I had been by Frank(the Penguin cap inventor). He told me they didn't work and I believed him, until I read of the success stories on this topic thread. I was finally convinced that the Elastogel caps did work after helping a patient who had received 5 treatments of Taxotere/Cytoxan and still had 85%-90% of her hair! I am hopeful that more women will learn of the Elastogel caps. They are much more affordable and less worry than the shipping and deposit problems associated with renting caps from the Penguin Co.
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makingway - agreed! I've been really excited to read about the success people have had with Elastogel. I want more women to know there is a less expensive option that women have had success with. Although I am forever grateful to PCC's, I realize they are financially not possible for the majority of women. And I just want more women to have option to save their hair. It has been such a blessing for me!
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Daniella - Congratulations! You look wonderful, as does your hair. I am glad that you stuck up for yourself. MSK needs more women with the guts to do that.
My surgeon at MSK's NYC location, Dr. Alexandra Herdt, told me in the spring of 2013 that the higher ups at MSK had finally decided to change MSK's policy to allow Cold Caps. They made their decision after months of reviewing information about cold caps that she had gotten in the summer of 2012 from my oncologist, Dr. Anne Moore, who is the Medical Director of NY Hospital's Breast Center where about 50 women have used cold caps. I was elated by the news. It seemed like progress. No more women would have to go elsewhere after surgery at MSK to cold cap during chemo as I had been forced to do, and as I suspect others had also done.
MSK was fully aware of all of the equipment needed to cold cap, including electric blankets, because they had received all of that information from Dr. Moore. When you are feeling up to it, I hope you will consider writing a letter to the head of MSK about what happened to you, copying it to the head of the location you had your treatments. Please include pictures of your hair to show how successful you were in saving your hair. I suspect few doctors at any MSK location are aware of how well the caps work, or have seen actual results. Your picture would be a revealtion.
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Thank you all for your kind words and praise. I haven't lost much, if any. Hard to tell without color and blow drying. It's so grey at my hairline and throughout. I'm hoping there isn't much shedding and it stops in time for me to color before the holidays. I'll be 40 in a few weeks and it was important to me to look like me that day. That was my birthday wish - feel normal, no cancer and my hair.
Hortense I intend to write MSK about my experience. My MO still mentioned the chance for scalp metz saying "we know some people have gotten scalp metastis..." I wanted to yell "who? Who is this one person that unfortunately used cold caps and later developed a scalp metastis? Isn't it more likely that this person already had some predisposition for it?" Ugh. They are just too hardcore and refuse to accept anything that may effect their cure rate. I plan on the same fight over tamoxifen. Great hospital but you must be your own advocate for quality of life issues
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Daniella- YOU DID IT! Your hair looks amazing, if there's any grey I can't spot it!!!! You're done!
HUGE HIGH FIVE!
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Daniella - It's interesting that your MO mentions the possibility of scalp mets, which mine dismisses as so small as not to be worrisome. Does he or she also mention the approximately 4% of women who end up suffering life long problems with thin hair or baldness after chemo? Now, THAT would be an interesting warning to hear from a doctor.
I do think we have to be our own advocates. I had to push for an oncotype test when at MSK as my MO there told me I didn't meet guidelines for it, when I actually did. I like the hospital, and in fact went back to one of its satellites for radiation. I think as patients we have to inform ourselves as best we can and not just blindly accept what we are told, because it might not always be right and other factors might have to be considered that may have been overlooked - as happened with my oncotest.
Best of luck going forward.
And, Happy Birthday !!!!!
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I noticed on the instructions for the Elastgel caps that you only put them on 15 minutes before chemo and leave them on 45 minutes after. With Penguin, I put them on an hour before and leave them on four hours after. I would think you'd need to buy several, tho, to keep them cold enough. I'm alternating around 12 or so PCCs during treatment
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I think I used 8 PCC's with dry ice.
Daniella, when he mentions he knows someone who got scalp mets, tell him you know someone who got endometrial cancer from Tamoxifen. They do exist on this board. I had to stop Tamoxifen b/c of excessive polyp growth...all benign so far, thank god.
There are risks and benefits to all interventions. Women should be informed so that they can make a choice. We have a right to choose to take that very small risk of scalp mets in order to keep our hair. It is wrong for a doctor to take that choice away. We should be provided with ACCURATE information and then allowed to decide. That's what INFORMED CONSENT is all about, IMO.
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We all have a higher probability of getting leukemia from the chemo than scalp mets. We have a higher chance of having permanent hair loss than scalp mets from taxotere. They never mention that...... They don't want to promote or endorse cold caps because they are not FDA approved. I use to be a sales rep for pharmaceuticals and medical/surgical devices. I know how this works. If they made money off cold caps, they would endorse them...trust me! I use to try to sell newly approved medications that had been used and approved overseas for years before getting approved here in the US and doctors were still resistant to use them even though they were FDA approved. There are always a few pioneers out there, but the majority won't want anything to do with anything like this. The other thing is, doctors are simply treating the cancer....not the whole patient. I am sorry but they should at some point realize that the mind body connection exists and if a patient feels better about themselves, they seem to do better through treatment. It's just sad they can't figure this out. I know their goal is to treat the cancer, but at some point you have to realize there is a person with feelings and emotions standing in front of you....not just a disease. We should write a book to enlighten these doctors and health care workers, but they would not even read it......so sad! In other industries, people have to worry about "customer service". Why don't doctors and healthcare workers worry about that??? OK....putting my soap box away for the night now...
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Well said, MDG! I'm so glad I found this forum otherwise I might not even have known about the cold caps.
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Just received my caps from FedEx!!!! Wow, they are much heavier than I thought they'd be! Now I'm just a nervous wreck about actually doing this. So afraid I will screw it up somehow!
Everything has to be so precise with exact times to the minute, and exact temperatures to the degree. I could really use some encouragement before I start my 16 treatments on Wednesday!
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Pinkflipflops- Don't worry about being precise with everything. I was far from precise. Caps stayed on too long, not long enough, they were too cold, and too warm. I never wore them for the entire 4 hours after chemo either. I couldn't bare it. Don't worry. You will do fine
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pinkflipflops, those of us who did weekly taxol have had great success with the caps. I'm not sure about carboplatin - just did a quick search and it looks like hair loss is a rare side effect of carboplatin, but brittle hair is common. When I started my weekly taxol I was really concerned that my helpers had 12 times to mess up - but they did great and I kept virtually all of my hair. I was blessed to have a medical freezer at my facility, so I didn't have to deal with dry ice, but we did have several occasions when the freezer wasn't working properly and the caps weren't as cold as they should be. Nevertheless, it all turned out great! My chemo nurses were very accommodating with timing - they got the drugs from the pharmacist and we just let them know when we were ready to start with taxol. Daniella got unlucky with the nurse(s) from hell, but I think that is the exception. Every chemo nurse at my facility was kind, friendly and helpful. Just make sure you practice with the caps ahead of time, make your cap changes as quickly as you can, and drink lots of water on chemo day.
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FL sunshine- Thanks for your reply, it makes me feel much better! It seemed like everyone on here was so strict about every aspect of using the caps, I thought there was no way I could get it all right! So happy for your success!!
PatinMN- After a LOT of work I was able to convince my center to get the freezer. I was thinking about keeping 6-8 caps home on dry ice on chemo days so I could leave and do those last 3-4 hours at home. My center doesn't seem to be thrilled with me staying all that time after treatment is over. Any thoughts or suggestions?? Thanks so much!!
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Help!! I'm experiencing ALOT of shedding over my ears and it doesn't seem to be stopping! I'm afraid it's just going to continue creeping up! Anyone else experience this shedding pattern
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Jalsgal,I think several women experienced the shedding around the ears. What round of chemo are you on? I'm 19 days out from my first round and so far not much shedding anywhere.
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Pinkflipflops, I'd get the dry ice and take the caps home. My onc doesn't have a freezer so we drag in two coolers of dry ice, then I wear the cap home and continue to change out caps for four hours
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Leslienva-It's 4 days after my second TC treatment. I started shedding on day 18 after my first treatment and hasn't stopped. I'm on a 21 day cycle so I've been shedding for 8 days! Just seems like a lot! When I lift my hair over my ears, it looks very thin;(
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Pinkflipflops, I had no problems staying and continuing to cap at the facility. I was in the "cold cap room" - a small private room with the freezer, my chair, and a couple of chairs for my helpers. I just had to be sure to get started early enough in the day to be finished by 5:00 p.m. when they closed. do you know where the freezer will be located? Since you are the pioneer at your facility, I guess I would start them on the path of being accommodating to future cappers, which means allowing them to stay as long as necessary. After all, one of the big benefits of the freezer is NOT having to buy dry ice!
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I'm on day 13 and when I run my hands through my hair I'm getting a few strands. I know the big shed is coming. Nervous!!!!!!!
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Is anyone using the eyebrow bands? I tried them but couldn't deal with them along with the cold caps. I may try again on Monday, tho. I bought that Brian Joseph eyebrow gel and started using that. It's supposed to help save eyebrows and eyelashes and has no "harmful ingedients". Has anyone used it
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I'm using the Brian Joseph gel now. I had suggested it earlier on these boards when my oncologist said she's seen good results with it. I'm only 13 days past my first chemo though.
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Leslie - I used eyebrow bands each time and didn't do so well because they didn't always rest on them enough to keep them cold. I ended up losing my eyebrows, but they came back quickly. Goodness I looked so funny without them. I hadn't appreciated how much definition eyebrows give to our faces until then.
Jenn - You may just be losing hair where the caps might not be giving you full coverage. I think quite a few women have had that experience. I am slim, but I have a big fat head. My wonderful, experienced caper helper used extra bands wrapped around my head below the caps in back and on the sides to be sure everything was covered.
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Jalsgal, you and I are on the same schedule and I'm not experiencing that pattern, but instead have been shedding heavily for 8 days from all over my head!
I started shedding Day 16, with a big shed starting Day 19. Still shedding pretty heavily every day (it's now day 24) .... just did TC treatment #2 two days ago. I'm supposed to wash my hair today - per PCC directions - but I'm too apprehensive! I haven't lost clumps but hair continually cascades off my head, 24/7, so it's already looking very sparse..... can't imagine there will be anything by my next treatment.
Maricela, how are you doing? I've thought so much about you since reading your post and know you had another treatment....
BarreMom... I'm trying to adjust my sails! I so feel like you did (throwing yourself off the roof) but think there may be something not working. Maybe ALL my hair follicles are old!
One big lesson is that it takes nerves of steel to cold cap. I'm SO grateful for everyone's encouragement but am wondering whether (as perhaps everyone does) whether I'm that person cold caps may not actually work on. Taking it day by day but oh my!
Jane
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Jalgals, shedding around the ears is pretty common because it's hard to get the caps to fit properly there. Did you get the extra headbands? If so, use them to wrap along the edge of the caps around your ears. Fortunately, it's easy to hide hair loss around the ears.Leslienva, most of us used the bands around the nape of the neck and around the ears- not on the eyebrows. Although they were originally designed for the eyebrows, I think most women said no way. I used Brian Joseph's but didn't start until after my second chemo infusion. My eyebrows thinned a lot but didn't all fall out. I have no idea if Brian Joseph's worked at all. It's hard to tell because, unlike the hair on your head, not everyone loses their eyebrows.
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JC254, sounds like a better use for the eyebrow bands! I'll try that!
For those that are shedding a lot, maybe try using the caps in between chemo rounds?
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Jiilmare -- For those of us who are heavy shedders, wash day brings us A LOT of apprehension, you're not alone. There's no easy way to get through the wash you just have to do it, but I dreaded it and still do. I think every new cold capper wonders if they are doing things "right" and perhaps even doing something wrong. You're not alone. But PCC has had excellent results with T/C. It will work for you!
((Hugs))
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I am using the Elastrogel caps and they are working. I have bald spots on the top of my head but I think that is because on the first treatment it was not tight enough against the top of my head. It is now 12 days past my 3rd chemo treatment and I haven't lost any more hair. I did cut my hair short when I started losing it but I really have to say that if used properly they do work. I purchased 4 caps on Amazon and my husband starts putting them on my head 1 hr. before the chemo starts and we keep them on 4 hours after the last treatment. I will post in about 5 weeks to let you know If I lose any more hair. I still have to wear a wig for work but at home don't. We just buy dry ice that morning and change them out every 30 minutes for the entire 7 hrs. and it really is not that hard. My oncologist recommended them over the Penguin cold caps because they were so much cheaper.
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Jiilmare,
Hang in there! The shedding is always scary as hell.
Daniella! Congratulations!! You look fantastic and you handled the bully nurses spectacularly!
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PCC says to drink lukewarm water during chemo but the remedy for the metallic taste and mouth sores is supposed to be chewing ice. What did you all do
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