Cold Caps Users Past and Present, to Save Hair

I would be very interested in renting them,leetasun.   I am actually in southern Ca., will be starting chemo in October.  We will be in the bay area, when do you actually end chemo?  My hair is long and thin, not sure if this would work but I'm willing to try anything not to be bald!

I will be on Taxotere/Carboplatin/Herceptin, TC every 3 wks x 6, then Herceptin every 3 wks for a year, my hair is really long, but thin. I'm soo sad about having to lose it, and I know the treatment is completely necessary so I shouldn't complain about my hair, I just feel completely out of control about everything else!

Dawn 84- I am also on the same regimen and had my 2nd tx yesterday which went great.  Caps are cold pretty much for me for the 1st minute of each but very doable and worth it.. I have yet to lose any hair, bare minimum shedding. I lost more when I washed my hair everyday. Now I am only washing with a ph special shampoo every 4 to 5 days. I chose an onc who did clinical trials on the caps with a very high success rate of 80-90% depending on tx type so he actually bought a freezer and his own caps and I pay $200 for every treatment which is much cheaper than having to buy dry ice, coolers, etc. PM me if I can help any way

Ang7- At what point did you lose the rest of the hair on your body?  I have yet to lose any so I am fearful that my time has yet to come with my hair to start really shedding? 

Emster~

I started losing hair from "other places" between my first treatment and my second treatment.  I started my chemo in December and my oncologist told me I would be bald for Christmas.  I was not.  Try to keep the faith...

I'm not sure when I started to lose body hair -- it may have been just before or just after my second chemo treatment.  That said, I've just had my third treatment (so it's been almost 7 weeks since my first chemo) and I'm quite sure I haven't shaved, or needed to shave, my armpits or legs for at least a month. (And I do have a full head of hair, though I am shedding more than I used to before chemo.)

I've had half the chemo treatments I'll need (3 of 6).  I'm wondering about others experiences with the side-effects of chemo (specifically taxotere, carboplatin, and herceptin).  My sense is that the side-effects may be worsening each time but only slightly.  And they've been somewhat different each time, perhaps as a function of what I've eaten, what my schedule is (do I have anything that demands that I be up and energetic or can I give in to fatigue), and the extent to which I've chewed/sucked ice during treatment (preventing or lessening mouth side-effects).

What have others experienced?

Best wishes,

Katherine

Hi everyone,

I was TC x4@3, Some SEs I only had with my first chemo -- a few days of acne, flakey dandruffy hair, and some hip pain about a week after  my neulasta shot. My chemo was during hayfever season so I was already taking claritin, but the first chemo I also took one tylenol and my hip pain went away. I never had bone/hip pain from neulasta after my other chemos. Other SEs were mild but had kind of a pattern: usually a bout of diarrhea about 7 days after chemo (quickly cleared by Immodium), sometimes a tinge of queasiness about 3-4 days after chemo (and after my two days of Emend were done), but I took a compazine and was fine. I did have a pretty grand headache after my first chemo, but probably a combination of chemo/brain freeze from the caps/going off caffeine. (I've stayed off caffeine, something I've tried to do in past.)

My most noticeable SE was towards the end of the Chemo 3 cycle and into Chemo 4: unbelievable fatigue in my thighs, specifically quads. I had energy, but my quads were screaming tired. I live up 3 flights of stairs and walk alot in the hills, and it was a very very difficult task to do either. The worst of it was the 2nd/3rd week after Chemo 4, which was my final chemo. At that point, there were a few days were a good power nap didn't make me feel refreshed, and my daily swim was exhausting but I kept talking myself through it, saying "You're done with chemo and you haven't missed a swim yet, don't stop now!" It's counterintuitive, but the exercise oxygenates your tired red blood cells and as my nurses promised, I always felt better at the end of my exercise/walk/movement. 

Best,

Susan 

I'm a week out of 2nd Chemo and still have my hair. Not really any shedding either, just normal like it was before this crazy Cancer Train. I know I should be happy, but I just won't completely believe it until it's closer to the end. My doctor said he thinks it's working, so that should make me feel good.

I haven't lost hair anywhere else yet, so I'm kind of using that as a sign for when hair should really be gone. Is that normal? To lose hair on the rest of your body later than hair? 

I didn't lose all my body hair right away. I really didn't notice when I did except the "down there" area. I lost about 75% of that in one shower between my second and third chemo. One day towards the end of my chemo I just happened to notice that I had no arm hair. Then I started really looking and noticed I had almost no hair anywhere. My body hair is super light so I guess I really just didn't notice. My legs and underarms were like Ditah. I just shaved and it didn't grow back.

I lost my eyebrows and lashes but not until after I finished chemo. I also lost some hair on my hairline and near my ears. I really knew I was sheading but it wasn't very evident until it started comiing back.

I did taxotere, carboplatin and herceptin. It has been six months sinceI finished and all body hair is back. I would have been fine if it never did except for the eyebrows andlashes. They are still thinner. I am hoping that changes when I finish herceptin.

Good luck to everyone using the caps. The saved my hair and helped to keep me sane.

Hi,

My lumpectomy was on Tuesday.  By doing chemo first, the tumor shrunk enough to do breast conserving surgery and the BS was great.  Other than the incision scar, you can't tell anything was done.  I am very amazed that with the PCC I kept my hair and with neo-adjuvant chemo I kept my breast.

Crossing fingers and toes for clear margins!

Colleen

That's great Colleen! Hope you have a quick and painless recovery

Yeah Colleen!

I did it!!!! Got my hair colored today!! I am really happy with the results. As I said, I went to a place that uses organic products but it's still a permanent dye. The color took pretty well but I can still see some rogue grays in there - 10,000 times better than before thought. I did the whole 9 yards - color, cut, blow dry and flat iron. Tuesday will be 12 weeks PFC. I think my hair looks a little thinner than before but not noticably at all. The condition of my hair isn't bad either. Guess I'll know for sure when it's time for me to wash and style it myself.

Michon - you're doing great!!!

Hope the rest of you guys are doing well too!!! 

I'm pretty sure I had flakiness too. Are you careful to wipe the frost of the cap before each use? I feel like at one point my scalp got a little frostbite and then started to peel in the front part. I think it's normal for your scalp to be dryer during chemo and certainly after putting those frozen caps on your head. I don't think I did anything about it - just brushed the flakes off.

Just got the good news -- lumpectomy margins are good enough to be considered "clear."  The margins next to the IDC is 3mm, but the margin next to the DCIS is only 1mm. The breast surgeon, pathologist and radiation oncologist all consider this good enough.  I am having 5 weeks of whole breast radiation and then a 1 - 1.5 weeks of boosts. 

Radiation simulation is next week and the real stuff starts the following week -- the end is in sight!

Colleen

Hi jpmercy - there are of course no guarantees but the caps have been known to have great results with weekly taxol. I know someone on here used the caps for weekly taxol but I believe only had 6 weeklys before she had to stop. I don't think she lost any hair. She had a very similar diagnosis to yours - similar age too. Hopefully she sees your post.

I know I am amazed that I have a full head of hair and it really helped me get through chemo.

Good luck with whatever you decide.