Cold Caps Users Past and Present, to Save Hair
Comments
-
zlota: The caps definitely give you brain freeze at first, but I don't think my headaches were caused from the caps themselves. My entire body ached from Chemo and or the Nuelasta shot. The nurses blaming your headache on the caps seem dismissive. I've found that health care professionals are not as friendly as they should be. They may experience people with cancer every day, but it's a first for us!
lmflynn: You can do it! The first time is definitely the worst since you don't really know what to expect. The chemo itself was not scary for me, thought I'd feel it coursing through my veins, but I felt nothing. The first few caps are pretty darn cold and you'll think how can I do this? But, you can. I'm through my 4th treatment now and each one gets a little easier. The first 2 minutes of each cap are cold, so just prepare yourself, take deep breathes and know you can get through it. By half way through the day your head becomes pretty numb so each new cap isn't as bad. You'll be pretty exhausted when it's over, but know that the first time is the hardest. If you can make it through it's all downhill running from there!
0 -
Luckyo: my shedding was worst at about 24 days each time. I continued to shed until about 5 weeks ago (and that's 4 months post chemo). I collected my shed head-hair in a ziploc, so that when I panicked, I could hold the bag up to the mirror and see how much more hair was on my head. Nobody could ever have told (but I was so busy telling everybody about my PCC experience, they all knew!) My nurses also gave me the "some folks have it til 3-4 weeks" talk, and my doctor told me every week -- up until my 3rd treatment -- that my hair would definitely fall out that week. Ha! By third treatment, she stopped staying that. By 4th treatment, she was hugging me.
Hang in there! You are going to be fine!!!!
0 -
zlota: I had the worst headache of my life after my first chemo, due to chemo, caps, and I think also going decaf! Seriously! After about 4 days it let up. I then found that I'd have a little headache after subsequent chemos but nothing as bad as the first. Don't be afraid to take tylenol (or whatever other pain reliever you use) to help them go away. There is absolutely NO reason you should suffer at all. If you're like me, and usually shun taking meds to treat minor maladies, just remember you're going through chemo already -- there's no harm in taking an aspirin to make your headache go away given what all else you're going through! The sooner you feel better, the more active you'll be, and that will help you detox -- and it will lift your spirit.
The caps can be an intense experience, and by the end I had to get myself psyched to do it. It was totally worth it then and now! I still get occasional odd headaches and my medonc said they are leftover from the chemo, but not to worry.
Lymflynn: Enjoy that last warm hairwash, every sudsy moment!!! I can't wait until around Christmas when I can have a warm hairwash again. I'll be thinking of you on Thursday and sending best wishes and good karma :-) I took a beautiful Japanese shawl, a gift from an old sweetheart, to my treatments to keep warm and to protect me. I wrote him after I'd finished chemo and he was delighted that the gift had been there for me...and was even more delighted when it showed up in the GMA story in my photo. Reconnecting was one of the many beautiful gifts that has come from an awful diagnosis.
Cheers,
Susan
0 -
Okay, I had my first chemo session with cold caps yesterday (I'm on 6 rounds of Taxotere-Carboplatin). I'm the first person at my chemo place to use the caps, and none of the nurses had heard of it (oddly, I think,given the recent press). They tolerated the cap process, but weren't happy about the extra activity in their cramped space.
It was a bit tricky, because they wouldn't let my husband be in the room with me. So he had to stay outside with the coolers and caps, coming into the room periodically for cap changes. It was nerve-wracking for me, because I was always worried that he'd forget to come in on time. But he was terrific with the timing, and with dealing with the caps on dry ice -- getting them to the right torture temperatures, etc.
But boy, the caps were hard for me to deal with! I kept thinking about the women on this board that have talked about doing 12 rounds or more with the caps; I'm so impressed!
I think I'll take pain meds before the session next time; any suggestions?
It sometimes felt that the nape of my head wasn't staying cold enough; we strapped it in real tight, but the gel was thinner than elsewhere. The same for around my ears.
I'm keeping my fingers crossed that I don't lose too much hair. I figure that even if I lose it all, I'll continue with the caps to protect my hair follicles from too much permanent damage - my biggest concern here.
Thanks for all the advice, women! Couldn't have done it without the tips gleaned from those who've been through this.
0 -
Thank you to everyone for the encouragement. I will post when I can through chemo.... you all are my inspiration... I am planning on taking Tylenol and they are giving me ativan IV at my center -- so hoping that those two things make it much more bearable... either way I CAN DO THIS... even through the fear and cold....
I also find it so interesting that more people (especially clinicians) haven't even heard of the caps. And so many naysayers -- can't wait to surprise every one in my center with my hair!!!!
0 -
Bernbird-
im sure your husband likes having a job and a focus during chemo...it defiantely takes the stress off of why you are really there, especially if he cant be in the room with you. i know my mom and husband like having the coolers and caps to take care of it gives them something to do!
i am one of the crazy girls who is wearing caps for 12 straight weeks!!! ugh! i have four down and i have to say, i no longer need to take xanax before. just some advil but i KNOW i can do it so it is really mind over matter. Also my sister and best friend were worried that i was going to have a hard time with the coldness of the caps so they are so awesome the collected 150 cards, notes, letters, funny stories, and things from my family, friends, and co-workers. after each and every cap change my mom gives me a new envelope to open...it keeps my mind off of the coldness of the first few minutes of each cap and i actually get excited to see who the next mystery card is from! people have been so great...i have got funny hand writen stories...jokes written down, cut out comic strips, inspirational quoates and just notes saying they care....it helps my mom and i pass the time and gives us something to look forward to! weekly is tough but im a 4th of hte way done! yay!!!
Hang in there ladies...i was the girl who posted I CANT DO THIS!!! and was going to send the caps back after i did a trial run a few days before chemo started...now i dont even need xanax and its is just part of my WEEKLY routine! you can do it!!!!
0 -
bernbird: I'm really taken back by the fact that the nurses wouldn't let your husband in the room with the coolers and caps. You are the patient/ client, paying for treatment. I understand if somehow the coolers are blocking their path or something like that, but otherwise, you can have anything in the room with you that you want!0
-
I agree with Michcon, can you talk to your onc about it? chemo is such a long time and there is no reason why he cant be in the room with you...is it b/c of the caps or do they not allow visitors in the room?
0 -
Bernbird - I took advil 30 minutes before going into the chemo room and about 4 hours later. I was able to control the pain from the coldness very easily with just this little medication.
And kudos to your husband -- managing the caps really is a fine distraction from what is really going on with chemo.
Colleen
(who finds out in two weeks if she gets to do chemo AGAIN).
0 -
Great, I'll try the advil next time.
The reason that my husband couldn't be in the room with me: they have a general policy that no extras are allowed, because space is so tight. It's absurd, really, that they have so many patients crammed into such a small space: there's one long row of chairs sitting arm-to-arm, and at times every chair holds a patient. There is literally no room for the big coolers, and barely room for my husband to stand in front of me to do the cap changes.
It's a cancer clinic that started out small and now has more patients than it has the space for.
jpmercy: you are awesomely tough, going through all those weekly cold cap sessions! I love the story of all the special notes you're getting from family and friends to help you get through the cap changes. That is so sweet.
Thanks for all the encouragement, ladies! It makes a huge difference to hear that other women are getting through the cold caps successfully!
0 -
hi everyone, my wife starts TCH in a few weeks and we talked to our Oncologist about cold caps. He said there weren't any studies on their efficacy, but anecdotally he has had a few patients who have used them and have had good results.
He mentioned though that some are concerned about the potential risk from the cold cap slowing blood supply near the scalp, potentially limiting chemo's ability to reach potential cancer cells in that area, though again no studies have shown any link between cold cap use and higher recurrence rates. Have any of you thought about this concern or talked with anyone about it?
0 -
imatthew~
Before I used the Penguin Cold Caps at Christmas last year, I researched the potential risk of scalp mets. Frank Fronda, the inventor, was very helpful with statistics. My oncologist looked at all the information that he provided and she said after looking at all the data she was not worried about higher scalp mets recurrence. I was told that the percentage of women using Taxotere that NEVER get their hair back is 6%. If you look on the thread that has the Taxotere and permanent hair loss you can feel for them as many of their doctors stated "your hair will grow back."
Using the Penguin Cold Caps let me be in control over some part of my cancer treatment. It made my life easier with my 4 young children and it gave me strength to get up in the morning after chemo treatments and try to live my life. I will never regret using the Penguin Cold Caps.
0 -
imatthew: I researched the potential for scalp mets thoroughly before proceeding with PCCs. There is scientific published work (cited somewhere here in the posts I believe) which shows no evidence of scalp mets by PCCers. When my medonc and I spoke about this, I pointed out that I have a greater chance of developing leukemia as a SE of chemo, than of developing scalp mets from PCCs. That convinced her.
There are two studies underway (finally!) in the US and I hope this begins to quantify some of this for the medical community.
Best,
Susan
0 -
imatthew -- I am just aboiut to begin using the PCCs. Tomorrow! I am the type of person that does a lot of research - I work for a large medical company. I can honestly say I am more worried about the SEs of taxotere and an allergic rx than I am about scalp mets. Statistically -- I think I am making an informed decision and one that also helps me live my life more normally more quickly and helps with my self-esteem and feeling well. Each person should make their own decision and be content (peaceful) with what they decide is best for them -- Good luck to you and your wife.
0 -
Lmflynn~
I will be thinking of you tomorrow!
Good thoughts and prayers are being sent your way...
0 -
Hello girls, im just popping in to remind you, yes you can get through it!!! i got through 16 tx, A/C x 4 and Taxol x12, you can do it!!!! if my math is correct. (chemo brain) i think i wore them 144 hours!!!
crazy, i still have hair!!! and so will you, and when your done you will be so glad you did it!!its been a week since my last chemoi thought scalp mets is very easy to cure if it is the first place it occurs????
thinking of you all
Chey
0 -
Good luck to everyone starting with the caps. You can do it!!!!
I love having hair! I love a warm shower on my head more now than I ever did. I recently had the guts to cut and dye my hair. I still fear losing it but I finally realize it is here to stay.
The caps work. Try to relax and trust that they will.
0 -
Chey, i think of you all the time!! after reading what you went through and how often you wore the cold caps...i makes me KNOW i can do it every week!! just part of my routine now! congrats on being finished!!!
0 -
shadow2356 (and any other post-care peoples): when did you finally start having a warm shower on your head again? I'm 5 months out, and it feels like it should be soon.
lmflynn: I was thinking about you all day! I hope you are resting, comfortable, and getting snuggly warm (and drinking tons and tons of water!)
xo
Susan
0 -
So Ladies, I lost a lot of hair upon washing at Day 24 after post first chemo and am stressing about it, although it seems to have slowed down a little now. Very thin around the ears and back of my neck, and still shedding. I'm so scared to wash, comb or even rinse it again. What I'm wondering is, do you think that cold water is that much better than luke-warm? I thought "tepid" in the instructions meant "luke-warm", but am seeing now in some of the old posts that some of you are using actual COLD water. Think that really makes a difference? Thanks.
Also, some of you recommended Crystal deoderant, but that does have aluminum, just in a different form. I found a good non-aluminum one that works better (for me) than the ones from the health food stores--it's Bubble and Bee Herbal Spray--see bubbleandbee.com/deoderantchoice.html . You can customize the scent also, which is nice. Just thought I'd pass that on. Lucky.
0 -
Hi Lucky 60,
I've had five chemo treatments (1 to go). My hair is quite short and I'd say that before chemo, I never experienced (or perhaps never noticed) shedding. I never noticed hairs on my pillow and had very little hair accumulating in the shower drain. (In contrast, when my daughters showered in my shower, I'd often see their longs hairs in the drain.) Now, I notice hairs on my pillow and I certainly have hair in the drain when I wash my hair once a week (I do wet it and condition it everyday). A friend who had chemo said to me that if you can count the hairs on your pillow, you're not losing much! I think that's right. I've certainly lost no clumps of hair. And if I had to guess, I'd say I lose 20 - 40 hairs when I wash my hair.
I hope this helps. I know it's hard not to worry.
Now that I'm coming to the end of chemo, I'd love to know others' answers to Susan's question above. When will I be able to regularly use warm water on my head? When can I dye my hair again? What about getting a haircut?
Thanks all,
Katherine
0 -
Hey Katherine~
I had my hair dyed 5 months after chemo with a "gentle" dye that washes out that my hairdresser used. I was so afraid that it would fall out! Just used a regular dye today actually and my hair is finally feeling back to normal.
0 -
sebm9- Hi! You can certainly use the warm water 5 months out. I think I waited about 2 1/2 months. I waited until my chemo place said the drugs were clear for sure. It was heaven. I hope you enjoy it!!0
-
I'm about 2.5 months out from my last chemo and with the weather turning cooler (even in So. Cal.) I have stopped washing my hair in cool water this past week. I don't notice any extra shedding and I can see the new growth filling in the "thin areas". I am getting my hair cut on Monday. This is the second time since I started chemo (certainly don't read that on my other threads). I had about 3" of raggy ends trimmed in late Aug (between chemo #3 and chemo #4). I need another 2" trimmed now. Don't know if I'm going to go back to dying my hair. I'm 52 and at some point grey hair is expected. I figure it would be an easy time to make the change now. I haven't dyed my hair since last May.
Colleen
0 -
More questions---My deodorent contains--alumimnum trichlrohydrex gly 20%--is that a no no?? do I still need the crystal form--which is the best for a moderate sweater???
Secondly,--do you loss your finger and toe nails?? Any way to try to prevent loss???
0 -
Sashasz3 - I didn't loss finger or toe nails. I had them polished but that was it. Some women iced them, but I figured I was going to be cold enough with the Cold Caps. I had 4 TC.
And I switched to Tom's of Maine, but honestly i rarely use it. I'm not out much right now and I don't think it works that well.
Colleen
0 -
Sashasz3~
I did paint my nails BLACK before each treatment as a friend of mine who had done TCH did that and never had trouble with her nails...something to do with the light and the chemo.
I use Tom's of Maine but it has to be the ROLL-ON liquid. The stick version does not work on me. I sweat too much...
0 -
Ang7 -- hmm, I have the Tom's of Maine Stick version -- maybe that is the problem.
Colleen
0 -
Hi ladies, to all of those that wished me well I thank you.
Had my first TC on Thursday -- everyone was so right -- the PCCs keep your mind off the chemo and you become so engaged in the cap session you almost forget. I too as I think I read someone else said thought I would actually "feel" the chemo being put in me -- but really nothing. I was so afraid of an allergic rx but I was good. No problems.
I will say that first cap - is a hold on and wait moment. There is a second there where you think you just may not be able to take the cold and then a few deep breaths and you realize YES YOU CAN. My helpers, sister and good friend, were awesome! I don't know how you ladies have done the caps with one person -- kuddos to them b/c my helpers were BUSY!
I feel fine -- not perfect mind you but no major side effects yet. I think I have drank 2 tons of water, juices, green treas in 48 hours and have heard that it helps a lot with SEs.
I'm scared to even wet my hair -- any advice. I've taken a shower and not even run water over it....
0 -
Lmflynn~
Way to go! I knew you could do it. More positive power coming your way for the next time.
I did end up taking some showers without wetting my hair. I think as I became more comfortable with the fact that I still had hair I was able to wash it more. I did only wash it about once a week. The chemo seemed to make it dry so you could not tell that my hair was dirty.
Hope this makes sense...
0
