Cold Caps Users Past and Present, to Save Hair
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ang7 and sebm9, That is great that you are able to help others. I hope I get the opportunity to help others too. I was so worried about doing something wrong and losing my hair and would have loved to have had someone to demonstrate.0
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Me too! It's so wonderful that you both help to get the word out and help with the specifics. As much as I am grateful to PCCs for keeping my hair, I do think that info is lacking somewhat. Plus Geralyn is so busy that questions do not get answered very quickly.
Susan, my list of pills and vitamins is so long now, like yours. Can you describe your Chinese herbal regimen more, and did you run it by your oncologist?
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Laura5: you will definitely get the chance to pay it forward! Everything I learned was through Frank's video, the list he provided, and from a handful of women on this board and from my nurses. And my own experience, of course. The writeup I share to new users is everything gleaned from that.
ckk: Yes, my oncologist is on board with my nutritional supplements; my acupuncturist is part of my integrated care team at my cancer center -- not only the acupuncture but the herbal regimen. My cancer center also includes a social worker, nutritionist, Qi Jong (martial art), yoga, visualization, and many speakers and talks. If I'd wanted, I could have attended a class or session every day. Plus, my cancer center offers free massages (for life!) on Fridays.
I take the PharmaNex Lifepack, plus the TeGreen and the Reishi mushroom, which is key. Reishi mushroom boosts the body's immune system, specifically t-cells which fight cancer. (It also reduces blood pressure, reduces cholesterol, and helps with anxiety and many other ailments.) It has been researched extensively especially in China and Japan, where it is officially recognized as a cancer treatment. Much of cancer therapy is now focussing on t-cell studies; reishi mushroom naturally boosts that response, killing any cancer cells which are hanging out in our bodies, getting rid of them before they can become an "event".
Ever since I've begun taking the Lifepack and Reishi mushroom supplement, I feel incredible. I've always been active, but I have the energy I had 20 years ago.
I'm very lucky in that my entire cancer team focusses on nutrition, diet, and lifestyle as the key tools for health and wellness. I've had many doctors who just push pills, but I've learned so much from my team about natural approaches to maintaining my health and preventing recurrence.
Susan
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Hello everyone,
I used the Penguin Cold Cap treatment through all of my chemotherapy treatment (Herceptin, Taxotere and Carboplatin). I finished my chemotherapy 6 weeks ago. I will continue on Herceptin.
I kept about 60 - 70% of my hair. Since the end of my chemotherapy treatment my hair has been shedding everyday. I am surprised there is anything left. Somebody suggested I continue to use the cold caps. Somebody also mentioned that I take iron.
HELP! - before my hair is all gone.
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Christine: I took iron after I finished chemo and it helped me a lot. I stopped shedding after 5 weeks post chemo. I had TCH *4. I ate protein at every meal and took silica, fish oil, and vitamin D. I would have your vitamin levels checked to make sure you are not anemic because that can increase shedding. The shedding will eventually stop you can purchase clip in hair extensions to fill in missing hair. I am almost 5 months post pcc and can't get over how much easier it gets. Some ladies have used the cold caps after treatment. I have also taken up yoga since treatment and downward dog does send the blood to the head. Once the shedding stops, hair comes back quick. You will be there soon.
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I had my 3rd treatment on Friday. Still have tingling and have two tiny bald patches around my part, not sure why cause my husband had them fitting tight. Also have quite a bit of shedding.
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I feel your pain - I finished t/c x 4 six weeks ago -shedding like crazy! I wonder if anyone has gone bald post-chemo after keeping hair through-out with PCC - I'm taking iron, silica, black currant seed oil, vitamen D and a multi-vitamen - I think I eat plenty of protein, veggies and fruit -
My husband keeps saying - this too shall pass - and that's the takeaway from the other ladies who've been where we are - hope it passes soon - and before all of my hair is gone!
Good luck - keep us posted. Lucky
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Hi- today was my first treatment, and I experienced intense queasiness with each cap change, mainly in those first few painful minutes... has anyone else experienced this? Anything help for it?
I used the moleskin on my forehead, but I don't think it was enough, the cold was very painful just on that area, next time I'm going to double up the moleskin- any other suggestions?
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I always took an oral dose of Ativan before leaving home for chemo. I also had benedryl and ativan in my pre-meds and had no nausea. As far as the moleskin I used the extra thick one. I think I got it from CVS. I had bought moleskin and then I was at another store and saw one that was labelled "extra thick" or something like that. It was noticeably thicker than the first package I had bought. I only used the thick moleskin. I have a photo in my blog of how I applied it along. YOu can see me wearing it before I put my cap on if that helps. I also covered ears with panty liners. You will see that in the photo too.
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I've been cutting the moleskin to follow my hairline. I made a template by looking in the mirror and using a piece of waxed paper to draw the shape with a sharpie on the paper as it was held in place on my forehead. I used the extra thick moleskin sheets (purchased from Amazon), and then cut out the shape using the template I made. That seems to be working well.
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Yes, i took ativan before my appt, I could tell it was working because I wasn't freaking out on the drive it
And I did get the benadryl too in my iv- they had me take an oral zofran at the start of my appt too. I will look for the extra think moleskin, or maybe just double what I have because I just got the multiroll pack in the mail that I ordered from amazon.
Anyone experienced the nausea around cap changes even with those meds?
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Just gathering info as newly diagnosed. Surgeon and oncologist want to do preop chemo of three.....taxotere and cytoxin & adriamycin x 6. Saw somewhere the PCC will not work with that combo? Any input would be great. Think I will be starting soon. MO left msg. today to finalize my decision on the treatment?
Thanks in advance!
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Hannahsnana, Did you try contacting Frank? In my instruction booklet from Penguin, it lists AC as compatible, as well as TC.
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Wow, haven't been here in a while and as usual Susan has great information.
Odd about the rib thing because mine has been hurting too and my new onc (not the one who treated me during chemo and rads which was done in NV) didn't have a clue about the pain so she sent me for an xray which showed nothing. Hmm, wonder if it could be from the rads too since it is on the same side and goes completely away when I take an Advil.
Taking your advice on the Fish Oil, etc. I already take calcium and 3000 IU of Vitamin D which does seem to be a common denominator among us BC girls. Mine was extremely low. Everyone bc person I've talked to so far also had the low Vitamin D levels and now I understand studies are underway....but too much Vitamin D messes with your calcium so it is a real balancing act. My once checks it every 3 months.
Nice to see everyone and I need to go back and read all the posts.
Arlene
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Laura5 Haven't tried that since I'm just getting started looking into all aspects of chemo, but I will. I did see where it was compatable w/tc, just wondered about the combo of all three. Not seeing alot of post for that period. Thanks for the comment. Lots of great stuff here, but so much to read and a little overwhelming.
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KID, I was nauseated (and threw up) as soon as the steroids hit, so I don't know if my experience will help you, but my nausea did increase with each cold cap pain -- from the movement and the discomfort of the cold cap (I think). Make sure they are giving you plenty of anti-nausea drugs. I also stayed on Lorizapam orally after I left the infusion unit until I finished the cold caps. I had nausea the next day with the steroids, so went back on Lorazipam until the steroids were done.
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Arlene A: That rib pain is inflammation of the rib bone, from rads. Uncomfortable but not harmful. If you add Vit. C and Vit. E to your Vit. D I'll bet it goes away in 24 hours or less. You have to take it every day or the pain comes back. I think I take 500 ius of each and it works (I take 2000 ius of Vit D but it is starting to slip.
All my oncologists say VitD is the new cancer marker and there is much study to be done. Hope this helps!0 -
I finished treatment 2 today (TC). Avoided overwhelming nausea (and throwing up) this time by taking a phenergan the night before, 2 Ativans 1 hour before chemo, and starting premeds with Emend rather than steroids. I started having problems with the Taxotere, so the nurse flushed the line and gave me iv Lorizapam and then resumed the Taxotere. With all of these precautions, this infusion was much better than the first with very little nausea this time. I kept my fingers and toes in ice during the chemo portion and ate popsicles and drank cold fluids. I had consumed 50 ozs before chemo and managed another 20 ozs or so during chemo. I also took my claritn at the end of chemo to plan ahead for Neulasta on Friday. I will take Claritin for 7 days.
I also have a port, to which I generously applied EMLA cream at 1 hour, 1/2 hour and 15 minutes before the stick (covered with tegaderm). Nurse said the length of time was the most important, so put the cream on that full hour before. I pasted the cream on very thick! The stick was painless.
Cold caps were much colder this time, so we hope that we have saved my hair despite not having them quite cold enough last time. Cold cap pain was manageable with one oxycodone for the entire day of cold caps. So far, I haven't lost strand of hair, but MO said the hair loss would not begin until after the second treatment, so we will see.
After we finished with the cold caps around 5:30 (at home), I had a grilled cheese sandwich and took a three-hour nap (thank you, Ativan). I am about to top off with another 50 ozs of fluids before bed to start the flushing and will take antinausea meds, Effexor, Miralax, and colace.
I have to work (at home) in the morning, take my claritin, get my Neulasta shot at 1 and exercise and drink plenty of fluids to start detoxing after the shot. So far, due to the improved nausea control, I feel much better than the first round. Now we have to watch for chemo fatigue and Neulasta side effects, but I am working to counteract both with fluids, exercise, rest, and Claritin.
Hugs to all with treatments this week!0 -
Hey Mom2JJ~
It appears like we might be neighbors. I am also in VA.
I am almost 3 years out and if you have any questions or want to hang out sometime let me know...
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Hi Everybody, just wanted to share my experience. My sweet boyfriend (bless his heart) found out about the cold caps right around the time when I first started my first chemo. He spoke to MS Worldwide but they said that unfortunately, it was too late for me -- that cold caps had to be arranged at least a month before starting chemo, because they have to be stored in the hospital.
So my hair fell off right exactly around the time my oncologist said it would -- between 17 to 25 days after the first session.
It was a bit painful -- the scalp was really tender to the touch. In order to minimize the pain, the Drs. recommended that I cut the hair really short. Since I have a young son, we decided to do it in stages so that it wouldn't be too shocking -- first shoulder length, then a couple of weeks later really short, and then finally a couple more days we shaved it off.
Have to confess that it was pretty traumatic, and one of the things that helped me to purge out the experience was to create a series of drawings about it.
Good luck and I hope this helps,
Eni
PS: I'm new to this forum, can't seem to find where to add my diagnosis to the bottom line. Anybody? Thanks!
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Hi,
I had my third treatment Tuesday. One more to go! I find I feel nausea for the first several minutes a new cap goes on but not so bad that I will throw. I think I will ask my nurse for extra nausea meds in my iv for the last one though. When I think about all the places I have been able to go and people to see without looking like a cancer patient, there is no question that the extra work and slight nauseasness is worth it. Although I continue to shed, it has not been as bad as it was after the first session. I have to say I am sick of my hair all over the place, like my shirt, the floor, coats, etc. but how can I complain when I still have the hair! At my last treatment my nurse said I am an enigma to them. I am glad the caps were a success and have changed their minds about them.
Susan, is the inflamation on your ribs from your rads permanent? I will be sure to mention your problem when I get to that point. I asked my med. onc. about Reishi mushroom supplements. She stressed to stay away from them while I am still having treatments but that we can talk about things like that when I am finished.
It has been a comfort during the days of my treatment with a whole day of cold caps ahead of me to think of you all and know I am not alone going through it.
Luckyjnjmom- good words from your husband!
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Hello all, I'm fairly new to the chat room. Just wanted to say that I start March 1 with my first chemo (TCHx6) and I will be using Penguin's newest invention, the cold cap machine, which works without cap changes. I haven't seen it yet but, from what I've been told, it continuously circulates cold water through the cap and uses pressure to get the cold through your scalp. It is not as cold as the regular cold caps but I'm told it works just as well. It appears that it costs a little bit more but I like the fact that I can actually sit and relax without worrying about a cap change every 30 minutes. I'll try to let everyone know how it goes. My biggest concern is that I have almost arm-pit length kinky hair (African American). With all of the restrictions with this system, I have the feeling that I will be looking pretty crazy these next 6-10 months.
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tc9876, Wow, that is exciting! I didn't know Penguin had come out with that. Does the machine stay at your chemo center or is it small enough to tote back and forth?
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Laura, It stays at the center as they only have one.
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tc9876, I am African American too and we have different challenges using the caps, my hair is unrelaxed so styling without heat really limits what i can do. I am trying to keep my hair as straight as possible to make sure the caps fit tightly. Please keep us posted and good luck.
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When I spoke with Frank when I finished chemo a year ago he mentioned the machine to cool our scalps. He was very excited because all of the data collected at that point indicated that the results were the same if not better than with the caps. Congratulations on being the first on the forum to try the machine. Keep us posted with your results and experience.
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OMG I read somewhere about the circulating cap but I thought it was years away!
How exciting for you - please keep us posted. I'm convinced we are the pioneers - that someday people will look back and say "they packed coolers full of dry ice? Really?"
I tell everyone who might be interested but I don't think they believe me - I'm one weird looking unit these days with about 8 eyelashes, thin (!) eyebrows, two inches of mousy brown/grey roots in chronically dirty hair (I've never understood when it was safe to wash it more than once a week), always in a pony tail (I've also never understood when it was safe to cut it).
I'm not a marketing department dream....
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I am almost 6 weeks PFC. I have had virtually no shedding until the last ten days. I'm not freaked out - clearly the caps work so I'm not thinking all my hair is going to fall out.
The shedding is most apparent when I wash it - I'm talking like 10 hairs in the bathtub which is 10 more than I remember seeing - maybe it has been that way all along? Then it comes out in the comb.
My daughter is sharing an apartment with a friend and my daughter commented that, while it was something she would not have noticed before my chemo, she noticed that her roommate leaves hair in the shower etc. I have never given a thought to how much hair I usually lose - virtually none. I can't honestly say whether I'm losing more/less/the same amount of hair since I have no clear picture of what I lost before.
Just throwing that out there as one experience.
The hair that comes out has a bulb at the end - I think that means new hair is coming in?
And it SEEMS I lose more the day I wash it -- maybe because I don't much touch it in between washes.0 -
Hi Marie3: Congratulations, you are almost ready to do the Penguin Walk graduation! Isn't it fantastic to watch your care team learn something new? It's a revelation to them as well. And it will make it so much easier when the next patient comes through and wants to use PCCs. You have paved the way! Re: inflammation: yes, it is permanent. My RO specializes in a deep breathing technique (raises the chest, lowers the heart and lungs) and the aim was to avoid any scatter to heart or lungs, which we did. But because of my size and the location, a slight bit of scatter hit the rib area. It causes me absolutely no issues whatsoever. You should not use the reishi and other antioxidants while you are going through treatment. Wait til chemo is over.
tc9868: I'm so excited to hear about the new PC machine. When I met Frank 2 years ago it was in development but we were sworn to secrecy. Please let us know how it goes!
Susan
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Hello all, just finished my last TC tx last week, and sent the cold caps back to PCC. I am so glad to be done, and so glad that I used the caps! I have had very little shedding, most of it after the first tx. I have about 1.5 inches of new hair since starting chemo.
Question: I have reached out to a "green" salon in town that uses semi and permanent hair dyes that are ammonia, ppd, and paraben free. The colorist wants to check with PCC before trying anything on me. Does anyone know who at PCC to contact that she can talk to about this, who can review ingredients and methods with her?
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Update, I just received a reply from Geralyn at PCC about hair coloring with info that contradicts the original email sent to me by PCC with instructions for returning the caps:
The original mail:
Q. How long until I can color?
A. At least 1 month depending on the condition of your hair. (If it is still shedding - hold off from coloring). Color your hair using vegetable coloring but no peroxide or ammonia based products.
The mail I just received:
Q. How long until I can color?
A. At least 6 months after your last chemo. If you want to color sooner you can color your hair using vegetable coloring with NO Peroxide or Ammonia based coloring kits 3 months after your last chemo.What have been your experiences with timing of coloring?
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