Cold Caps Users Past and Present, to Save Hair
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Well, who knew? I had thought my scalp was really itchy because my hair was dirty. Turns out, the rest of my body followed suit the next day. Saw the NP today, and she thinks I have reactive hives due to the taxotere. I’m on day 12, 2nd infusion. She gave me a script for Methylprednisolone, and will add more steroids to my pre infusion next time. I have never been to the pharmacy more in my entire life, and I’m 58.
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HEAD ITCHY/HIVES: I developed hives on Day 8 after 3rd infusion of Taxotere/Cytoxan. All over my body. For my final/4th, my MO changed Taxotere to Taxol. There was also a possibility that the hives reaction was to Neulasta, which I wasn't given for my 4th infusion. No need, since there wasn't a reason to keep my WBC up and stay on the chemo schedule. My hives responded well to a high dose of steroids (8mg Dexamethasone every 12 hours), and I stayed on that for a few days and then tapered down the steroids, and was off of them by the next infusion date.
So, weird things happen--just wanted to share that you're not alone with this weird reaction. Same---my head felt itchiest of all, and I think there were more hives there than anywhere, weirdly....
Before the 4th/final infusion (because of the hives reaction), I had to take 20 mg Dexamethasone the night before, then 20mg 2 hours before infusion, and then they ran more in an IV (10 mg, I think), and I was given an Rx to fill, Just In Case, because they don't mess around with hives reaction. The goal is to cure us of cancer, not kill us with anaphylaxis!
At night, I usually took 2 Benadryls + 1 Lorazepam on those high-dose steroid days, so that I could sleep, and that usually worked pretty well.
YES, I feel the same way. I'm 61. SO MANY pharmaceuticals, both OTC and Rx in my life during treatment! Thank heavens, because each one has had its special role....
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Is there a company that will sell you the whole cap system verses renting it? I will always be on a chemo so it would probably be cheaper just to buy it. When I pass hubby wants to donate it to our cancer center.
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For reference, I am four months post TCHP and I cold capped all six rounds using Paxman. I used the Paxman shampoo and Loma conditioner on Mondays and Thursdays. I would cry when I saw the amount of hair in my hands, and both dread hair wash day and look forward to hair wash day (because it felt SOOOO good). In between washes I would use the water sprayer that came with Paxman filled with water a bit of conditioner to help with the dryness and flyaways. I would also rub coconut oil in the palm of my hand and lightly rub it in.
I'm saying all this because, even though I thought my hair loss was so evident, no one knew about my treatment unless I told them. I knew my hair was different, but no one else did. Also, four months out (last treatment May 8th), my hair is coming in super thick. I've had three hair cuts since then and colored it twice. It is all sorts of different lengths because I could tell it fell out treatment round two and started growing in maybe treatment round five or something. It's also not coming in "chemo curly". It's coming in normal, the same color, not grey or black. No, it doesn't look like it did before I started chemo in January, but I have hair! It's so thick in places (the underneath) that it pushes the "leftover" hair UP and makes it look like a hoverboard!
To be fair, I had zero cold pain because of that lovely Lorazapam drip.
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Dianarose --My heart goes out to you. I used Paxman. The machine is at the chemo infusion room. The cap is purchased by the user. It was about $1500. With Paxman, the company has an agreement to have the oncology clinic manage / turn on / operate their machines. The patient purchases the proper size cap--my inner cap is size medium and my outer one is size small. My oncology clinic sized me. I would be happy to donate mine to someone, and I need to find out if my clinic helps facilitate that. Just finished chemo a week ago, and will look look into it.
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HikingLady and Anniescouch, thank you so much for sharing your experiences! It helps so much. I had thought the hives were so weird coming this late after the infusion, and starting in my scalp. The steroid is helping-the hives have gone down, still red though, but the intense itching is gone, thank God.
HikingLady, I didn't realize you bought the caps with Paxman. It is wonderful of you to look into donating yours.
Diana rose, you can still buy a cold cap made by Elastogel on Amazon, but they do not look like the Elastogels Polar and Artic use. The ones on Amazon look thinner, and have an opening in the front. You would probably have to buy multiples and figure out a way to really tie it down to get good contact with your scalp. Some of the reviews indicate it doesn't stay cold very long either. You also will need dry ice and at least one capping buddy. If any infusion centers in my area had Paxman, I definitely would have gone that route. If you don't have that option, talk to some of the rental companies, and explain your situation. Maybe they can do something for you. You can rent used caps from Penguin at a significant reduction, but you have to ask about it. They don't advertise it on their website. Maybe they will agree to do more, given your situation. Sending some prayers your way!
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How much dry ice do I need to get each time? Never bought it in my life. Also how soon in advance doI put the cap on and how long after the infusion
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it depends on the type of cap. All the rental companies will give you specific instructions for the temperature, amount of dry ice, and wearing times based on a prehistory you give them beforehand. If you chose to buy the Elastogel caps on Amazon, your best bet would be to search this thread for anyone that did that and get some tips from them
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Just an update and possibly some encouragement for those constantly shedding. I am 3 months PFC after using Penguin Caps with 4 rounds TC. Didn’t lose much during chemo, but have shed constantly PFC. What you see in the sink I lose at least 3 times/day, every time I style or just running my fingers through my hair. I’m not loving my hair these days, but I somehow still have coverage. Hopefully it stops soon, but just want to help people (like me) who worry they’ll be bald by the time this shedding crap stops! Amazing how much hair we have. Still waiting for new growth.
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Rwns, I've been wondering about your hair situation. Maybe I just misread your post, but did you intend to post a picture of the sink showing your hair loss? I'm 11 weeks PFC and (fingers crossed) the shedding definitely has slowed way down. I've probably lost about 70% of my hair though. Yesterday, my MO gave me the ok to use haircolor to cover up all the "chemo white" new growth, which is about 3" long. I don't know what ideas my stylist will have for my hair. I've got all this white, baby-fine new growth and then a very small amount of scraggly, thin original brown hair towards the back of my head. It will be a test of his creativity. I know Penguin says to wait 9 months to color hair, but I just can't wait much longer. I'm so over wearing baseball caps and trying to wear the wig. But as you said, it is amazing how much hair we have.
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Hi Maggie...yes, I’ll try again with photos. How nice to get some color. I think I have a new (gray) hair here and there, but real slow going. I’ll try pics again
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Here is the pic of my 3 times/day haul 😝. And shampoo day is a lot more.
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Rwns, your hair looks great! You are certainly a success story for cold capping! From the front, I look like I have a shorter version of Albert Einstein hair. As I read on this site months ago, some have much more success with cold capping than others. I’m definitely in the “other” category.
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Thanks Maggie...but gosh, I either need shedding to slow or hair to grow!!! Do you like the false eyelashes? My eyes are so bald. I think I’m just a slow grower! Let us know how you’re hair appt goes!
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Rwns, I agree with Maggie! Your hair looks great. You have more hair than I do, and I’m only on 2/4 TC
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Appyfan-Thanks, and hang in there...you’re 1/2 way there!!! Wishing you minimal SEs!
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Just wanted to share with everyone what I read: “Drinking alkaline water during chemotherapy helps with side effects.” I thought you might want to try it. My last chemo was 5/30/17. I wish I had known about the alkaline water while I was on chemo.
Rwns - Your hair looks great!
Good luck and excellent health to everyone
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Thanks Rwns
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Rwns, your face look familiar- you are not from Massachusetts by any chance? Nice thick hair ! Thsnks for sharing !!!
Hiking lady - congrats , how your situation with hair? I will post mine after chemo sometimes in October probably , but I m shedding after / 2 chdmos, my third infusion is on 19 of September! And my hair got do dry and developed matts and have bold spot when brushed off the matts on one side
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My hair is really quite great. Paxman. All finished now, 4 x TC, every 3 weeks, although final was Taxol instead of Taxotere because of hives allergic reaction (then same happened with Taxol, so I'm still finishing steroids) I know I've been shedding all along. Maybe I still have 60% of my head hair, so I can style it carefully and it looks pretty normal.
One thing I spent a lot of time doing in the oncology suite's bathroom, right before each infusion was wetting down (water + conditioner) the first 2-3 inches of hair, super flat all over my head under the cool cap and combing it to be slicked down under the cap. Didn't worry about long hair ends, but was very obsessive about trying to flatten all of the hair down by the scalp so there'd be good chill-contact at follicles.
I didn't wash my hair often, at all, throughout all of chemo. Just on Day 3 to get out the chemicals that are working out those first few days, as is suggested, and otherwise, not much. Except if there was a special occasion. Mostly just combed it, and wore a shower cap for most showers. Got used to it---chemo seems to have been drying my scalp out, so hair wasn't too greasy, just not fluffy. When home, wore a snood and kerchief a lot to keep the house from looking too hairy, and always when cooking. Sometimes I wear a hair band when going out, to disguise the thin places.
Apparently, an invisible sheep dog (who sheds about 20-50 hairs a day) moved in with us when chemo started, and it drops 4" gray hair all over the place, so that's been something to get used to. I hear that maybe after 4-6 more weeks, he moves out again?
My hair is fairly evenly thinned out, but there are some bare areas, and a wide part. 50% eyebrows, 50% eyelashes, all still dropping. But, overall, I'm super glad I did Cold Capping. THIN SPOTS, but the illusion of a full head. Still shedding. Bare places are possible to style over, and I'm sure no one knows, to look at me, that it's been a chemo summer. The downside to that: I can feel like crap and go out and do things and people probably wonder why I look exhausted and slow ---no bald head--- SECRET chemo, I suppose.
I have noticed itching and tingling all over my scalp around Days 19-21 each time, and that's when more hair falls out.
Eyeliner and eyebrow pencil do the trick if I want my eyes to actually be visible at this point.... But, my eyes are currently especially sensitive to all make-up, and they aren't loving eyeliner right now---I think it's a Taxol thing, so I'm looking a bit eye-less right now most of the time. Eyeliner no matter now non-allergenic kind of makes them reactive at the moment, and same for mascara. Can brush powder on eyebrows to make them show up.
TODAY: DAY 14 PFC --I slept on wet hair last night after I washed it before bed, so it's messy and I haven't styled it today. 61 years old, Natural hair--whiter in front than in the back, and the last picture shows up the silver the most, so it's several shades of gray around my head. Crown is thin--showing that on left photo.
Daughter's wedding day (final photo below) was 1/2-way through chemo, and hair has thinned a bit since this photo--it was 3 weeks after #2 TC infusion, but I can get my hair to mostly look kind of like this still.
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Hiking lady, thsnk you do much for sharing! You look so great and your hair is absolutely flawless after chemo!!! We all complemented on a pics for your daughter wedding!!! I m doing Paxman as well !! Good luck to you what ever next chapter of your life is!!!
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Hi Bostoniangal-nope, I’m a CA gal, but have visited Boston and fell in love with it! Maybe I have a twin 😊😊
Hiking lady- very pretty hair, color and texture!
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HikingLady, you’re another great success story for coldcapping! Rwns, yes I noticed your long eyelashes. I never did try the fakes. Within just a couple days of losing the last eyelash, they started quickly growing in. They aren’t quite as long yet as my original, but they are as thick. Maybe it makes up for the lack of success I had with cold capping
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HikingLady - Hair looks great! I had a long-haired Irish Setter move in to my house in early June and it hasn't left yet! I still have 5 more treatments and then the PFC shedding, so I think he'll be around for a while yet!
Sorry to hear about the make-up sensitivity! Have to say I love your glasses! I purchased new frames in June to help camouflage the lack of eyebrows & eye lashes somewhat, but I haven't experienced any sensitivity to eye makeup. Don't wear makeup often as I work from home, but I did this last weekend for a fund raiser and a wedding. Wore the wig so I wouldn't scare people!
It's quite weird, while I've lost probably 80% of the hair on my head, I do still have eye lashes, hair on my arms and hair slowly growing on my legs. Eyebrows are down to a few stragglers. I'm continuing with cold capping because I also have regrowth started all over my head with over 1 inch and more filling in every day! So the pics below show how thin my hair is, it isn't really showing such a huge difference over the last month.
Kim
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Kdrake-congrats on the growth!! Wondering if you and Maggie are taking any special supplements? I have little to no growth on head or eyelashes...still shedding though
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Kdrake, it’s great to see new growth! Penguin didn’t work so well for me in keeping my original hair, but I’m glad I cold capped. I’m not quite 3 months PFC and I have about 3” new growth.
Rwns, I’ve been taking Biotin. Both the MO and dermatologist said it may help. The downside is that it seems to help all hair grow. I have quite the facial peach fuzz now too
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Rwns- we all have a twin somewhere on this planet sometimes people think I m their friend or someone else 😉and I love Cali, someday I will visit it!!!
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maggiey2/ great news!!!
Kdrake, with taxol success rate with cold capping is less than with other treatments, so you lucky to have decent amount of hair/ congrats!!🎊🎉
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I am cold capping. So far I have had 2 chemo treatments (tchp). There was some fall out after the first round, but A LOT of fall out after the second round. I was beginning to think the cold cap was not put on properly and was yelling at my husband for it. I still do have hair and only I can really tell it’s thinned out ( I used to have very thick hair). There’s a slight bald spot on top but I can cover it up. So I guess it could be worse. But my question is, will there be a lot of fall out with each round?? If so, at this rate I will be bald by the time all 6 rounds are done
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