Cold Caps Users Past and Present, to Save Hair
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I will be done with 8 caps Feb 25. I am in Washington state.
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Advance will ship the elasto gel helments, not cranial caps, anywhere. Check their site. You need to follow the PCC protocol. The dignicaps are trying a -5C system, but I would stick with the -30C until their research at UCSF and Wake Forest are further along and results published.
Using the -30C we are not wetting the hair as the dignicaps protocol does.
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mdg - Sorry, haven't been on here since I returned to work. I did the caps at Providence so had to do it with dry ice, but my friend did them at Beaumont and I helped her. The 4th floor freezer does not work properly. The caps were about -15 which is not cold enough. 1st floor is supposed to be ok. You can not share from 1st floor if you are on the 4th. When are you starting?
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Michcon - I am doing them on the first floor and was told those freezers work better. I am crossing fingers. I don't have a start date yet as I meet with med onc tomorrow to finalize things and hopefully have a date. I am 17 days out from BLMX and hope to start chemo in a few weeks. What chemo did you get? I am doing TC x4. Can you share with me how you kept hair detangled during and after cold cap days? Any advice or suggestions from your two experiences using them on yourself and friend? I am nervous.....
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mdg - I totally understand. I was a complete mess before I started the caps and chemo, so overwhelmed. This discussion board helps a ton. I did TCH x 6. I'm 2 months out and my hair is doing great. Still shedding, but not too bad the last week. My hair didn't get tangled from the caps. I found that the caps would almost slide off my head. You just have to watch your hair getting caught in the velcro. Tell your helpers to remove the cap slowly. My friend was the same way. We both have straight hair a little past the shoulder. If you can see my pic, that's my hair, about an inch or so longer now as it's been growing. Other women here with curly hair had some tangling issues after washing hair. You just have to go really slow with a wide tooth comb and start at the bottom, holding your hair as you go.
A few days before your chemo, go to the cancer center and check the temp of the freezer and a cap. There should be a thermometer there to use, there was on the 4th floor. If the cap is not at the -32 or close then you should think about bringing a cooler with dry ice. I do think the 1st floor freezer is ok from what Geralyn said a few months ago. Even go now if you are nervous about it. They shouldn't have a problem with you checking it.
Emster and Golfergirl on here did the caps at Beaumont and had success. Their posts would be back to the fall and summer. My friend just ended up with the 4th floor bad freezer, thank goodness she thought to check it before starting.
I've been on both sides of the caps, so any questions ask away! You can PM if you like.
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Well here I am 4 days past my 2nd chemo treatment. Starting to see some shedding now but I don't this others would notice. We tried the Elasto Gel helmets the second treatment. They were easier but I'm not sure they were cold enough on the sides and edges. I'm keeping my PCC for inbetween treatments.
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I spent today totally on the cold caps issues, researching every scrap of info I could find.
Dr.Michelle Melisko, at Helen Diller Cancer Center, UCSF, is doing a Penguin cap study. Dr. Hope Rugo of same is doing a Dignicap study.
I am trying to get the actual protocols for each: details of subject's dx, tx, temps of caps when on scalp, temps when removed, etc. I have read that the Dignicaps have some spots colder than others so they compare to our experience with the penguin caps. I need to do more testing on the Elastogels. They did seem a bit warmer inside after 30 min and also had temp difference in side, but they cooled to lower temps more quickly so maybe if we change them every 20 min it would be better..
Some web info says Digni are used a -5C, scalp cooled to +5, but another said 41F; Penguins are -30C when put on and were between -7-9C when removed. We used the elastos at -30-32C and they seemed to warm to 6 or 7 after use. Anyone else have someone keeping tract of temps?
The Penguins' cost prevent many from using them and the Digni isn't here yet and will probably be expensive with all the cooling machines. Elasto is the least expensive and if you buy them, you can resell them and cover your costs. I just want more women to have the option if they want it.
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Steph42 - Daddy and I don't see any sign of hair loss. Looks great. Can you post first pics next to these for comparison?
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here is a comparison from day 7 to day 24 past 1st chemo
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Pretty hair congats!! Keep up the great work--love the posts!!
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Hair is beautiful!!! I am also impressed that you can post these pics!!!
Thank you!
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Steph~ Great pictures! I too am impressed on how you post the slideshow! You cannot tell any difference in your hair.
Happy Valentine's Day everyone! Sending hearts of gratitude to all Penguinistas (and Gelinistas!) You ladies have no idea how much this board helped me get through some really tough times.
So I am approaching my 100 day mark (Day 95!) For me this is such a mental finish line. (My personal chemo marathon!) I was so afraid of chemo and losing my hair ... one was much easier than I thought and the other -- well you all know -- I still have my hair. I am feeling so much more like myself and the energy is returning .. I walked/jogged almost 6 miles yesterday. I am getting my hair colored and trimmed on Thursday (5 weeks PFC) ..only using a glaze tint .. but hey ... the gray should be gone! I'll post pictures after this.
For those of you starting or in the midst of your journey...it can be done! And there is a finish line! to chemo.
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To all of my fellow penguinistas,
I finished all off my chemo treatments over a week ago - I did TC x 4. The caps were completely successful for me. I have basically all of my hair with the exception of only very minimal shedding. I used 16 caps each session. All of the skeptical nurses and oncologists at DFCI could not believe that I have all of my hair and were impressed. Hopefully it will be the beginning of a change in attitude at the center where I received my treatment.
J
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SO I was at the med onc office today and my their office has freezers and caps for me to use. I mentioned I was going to use them and she immediately had to remind me that "many patients don't have success with those and many patients just give up because it's too difficult and uncomfortable to do". Thanks for the nice, positive encouragement! I said to her "I realize this can vary from patient to patient, but it also depends on what type of treatment you get and I have been told I with Taxotere and Cytoxan it has a good success rate. When I see that myself, I hope to be a poster child for your office and be a person other patients can call for support and encouragement". She said "that would be great. We don't really have anyone like that". Can I just tell you that this hospital did some of the studies on the cold caps? THey only have 1 patient using the caps right now at all and the caps are available (you don't even have to order them - they have their own in the freezer in the infusion room). I am shocked! I seriously need to get the word out when I am done with this. That is so unfortunate that no one uses them or knows much about them.
So do they really not work? What is with these people??? My doc says they have a 50% success rate. I feel like they are all setting me up to fail. So this thread is filled with ladies that have had success. Who has not had success? Do those people just avoid the thread or not exist? I am just overhwelmed...they gave me my first chemo date so I am freaking out that this is really going to happen - starting March 2nd. Someone talk me off the ledge today! I am going to go eat some chocolate now....that should help, right??
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mdg,
Enjoy your chocolate but do the cold caps. I am doing my fourth TC this Thursday. I still have all of my hair. I shed a little after each treatment, but it isn't noticeable. It's scary wondering each time if you will keep the hair but so far I have. My oncologist wasn't encouraging at all. She frankly told me it wouldn't work, but I had read everything on this board which gave me the courage to insist that I wanted to try it. I'm glad I did and the oncologist is changing her mind about it too. So go for it. Follow the protocol closely and I bet you will be showing off a full head of hair in May.
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mdg - That's how all the nurses on the 4th floor were towards my friend. As she's getting her first chemo drip, with a cap on her head, 2 nurses told her it wouldn't work. Really? Where's their bedside manor? I stood up and said, hey, I've done 4 out of 6 treatments and look at my hair. They shut up after that.
We need to get the word out! Crazy to me that a hospital with the freezer and caps hardly has anyone using them. Most women I encounter at that hospital don't know about them at all.
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mdg - I wonder if the caps aren't successful because patients aren't being given proper instruction like cap temps and how many hours to keep them on your head, how often to change them etc. etc....and you mentioned that one of the 2 (i.e. 50%) of the freezers aren't working properly. Definitely get off the ledge - you will be fine!!!
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HI All - totally agree on the issues with the hospital...they need to get a clue from the people that have been successful!
Question - what is the exact protocol from a temperature perspective. I emailed Frank and Carl 10 days ago and no word from them on the exact temp. I am going in on Monday for my third TCH.
Our temp in our freezer was -34, then bounced around...down to -28.
Thanks!
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This may be a self selecting group, but since I have been involved as a user and then helping others with coldcaps, on this forum and others who are non-bc, i have never heard of a single person who has not been successful with cold caps. That is 16 months-worth of only positive results.
It is utterly astonishing that the word hasn't spread more, especially with the great coverage on GMA and in the Wash Post article.
Methinks MUCH better publicity is needed, including marketing among oncologists via professional societies and journals. As with most of this "culture", those are the folks that need to get onboard, beginning with the recognition that it is patients' RIGHT to know of this OPTION at the outset of receiving treatment plans that include Chemo.
This should be regarded as an inalienable right, same as preventing nausea. Also, the various Awareness movements might regard this as part of, well AWARENESS, rather than propagate the media image of the brave bald woman as the poster child for this disease. It is mortifying that the marketing campaigns find this invasion of privacy an acceptable image.
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The temps for Penguins and what we are using for elastogel are between -30 C (-22F) and -32C(-26F).
Routine: 20 min 1st cap or helmet, 20 2nd, 30 for the rest. Start chemo at 10 mininto 3rd cap or helmet.
We use velcro-elastic straps that I made around the head from the nape of the neck to the forehead, another under the chin and over the top with the elastogel. Made 2 more for next time in case we need a tighter fit.
DO NOT wash for at least 2 days before and after uisng a mild organic shampoo diluted and same for comb in conditioner. Use wide tooth comb and don't pull on the hair.
Follow chemo with 4 hours of 30 min each cap or helmet. We also do the day after for at least 2 hours since the dry ice lasts for a few days in a closed cooler.
Drs. Rugo and Melisko at Helen Diller, UCSF, are doing trials with penguins and with the Dignicaps. Penguin Trial- 10758 and Dignicaps Trial 10758 if you want to contact them.
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Thanks for this very useful info (and for everyone's extremely helpful responses via pm). We'll be doing our first (EG) coldcaps in a couple of days and I'll post our experiences.
Do you by any chance have a temp measurement after the caps are taken off? Or have you found the 20-20-30- routine to ensure coldness. Also approx how long does changeover take?
Thanks again
Sam
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Hi all,
ToSam: The change over should be quick, and it will be as you get experience. Try it at home before, to get comfortable and used to it. Trails at home will help improve your tecnique and speed. After chemo, do caps at home 3 times a week for 2 hours chaging every 30 min. If you put them in home freezer, it won't be as cold, but it will help. It doesn't need to be as cold, because there is no chemo to block, you are just keeping follicles cold, which helps to maintain hair and it keeps it growing. Ain't that a jolt-instead of loosing our hair, we are growing it!!!
To everyone else: Regarding publicity, I think we should all put our heads together and figure out how to get this on OPRAH.--Then everyone will know about it!! Maybe on DR. OZ too!! We can mention all the types, but let everyone know that you don't have to loose your hair from Chemo. Certainly not in all cases, and that you have a choice!! I live in New York, so I can try to reach the Dr. Oz show. If I am successful, maybe they can give me a lead to Oprah. Write me with any ideas, suggestons or offers to help. Keep Positive!
Nancy
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Here is the link for suggesting show ideas to the Oprah organization.
https://www.oprah.com/ownshow/plug_form.html?plug_id=216
(I was on her show in February 2008 because of my music career.. they actually DO respond! It was a trip.)
In my opinion, the caps topic should really be pitched framed in the context of patients rights and having choices in treatments/options.
Another vehicle for coverage could be More magazine.
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I think we should all write into Oprah...get perspectives from many, since this is multifaceted issue. I will do mine right now!
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Oh, and I have my onco appt tomorrow at noon. He was the onco on the Good Morning America piece. I will ask him what he thinks. Honestly, though, until the clinical studies are completed and published in peer reviewed journel (JAMA, NEJM, etc.) clinicians do not change their minds. So, it will need to be patient driven...
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MTRI - send us your link to YOUR Oprah show. That must have been so exciting...very impressed that you were on the show. That is hallowed ground! You must be talented!!!
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But this is what i don't get: WHY any of this has to do with clinical trials. It is a CHOICE! an option.. not a guarantee.
So, offering, or at least providing, information about the option of scalp cooling seems tantamount to offering an advertisement for wigs, which are CERTAINLY found in those folders!
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I totally agree with you Mtri...
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Totally agree too...I will get my onco's perspective on this tomorrow. Will need to write that down, getting a bit of chemo brain. Just stood at the bus stop for my 1st grader and he does not take the bus on Tuesdays, I pick him up. Good grief. I will tie a string on my finger for tomorrow. If I remember.
Also, I am going to call Rapunzel and ask them what they have done, to date, from a marketing/PR perspective.
Annie
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Now, after seeing the posted pics of what it does to nails, lets talk about nails and tax-o-terror.
Here's what I came up with. I cut the finger tips off a pair of knit gloves. When worn the finger nails are exposed and stuck in the bag of frozen peas. I slip a HotHands Hand Warmer (sporting goods dept of Walmart, Dick's etc) into the palm of the glove after shaking it to get the heat going. Same for the toes using socks. The peas are in zip lock bags and used like any other ice pack, just more flexible.
For the ears under either type of cap go to www.improvementscatalog.com and look for Ear Pops. They come in different sizes and fit over the ear with out a band over the head. 1-800-642-2112.
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