Cold Caps Users Past and Present, to Save Hair
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jbandkb, AC knocked a lot of us for a loop. The nausea for me lasted for about 3 or 4 days and I was constantly taking compazine and ativan and I've heard non cappers say the same thing so I'm going to assume it's from the AC. If the pills you have aren't helping much I'd ask your MO if you can take something stronger! I had asked for zofran but was denied bc the anti-nausea pill I took on treatment days had zofran in it and was extended release. Everyone else raves about it!
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Hi everyone! I just completed my first cold cap and about to start my second this week. So far no hair loss but know the shedding is about to start. So I have a few questions for everyone here who has been through the process. I am about to go to my second round of AC with 2 more to go (every other week) and then 12 weekly rounds of Taxol.
1. Any additional tips?
2. Does anyone have success with really short hair? I cut it short (I cut off 14 inches) to make it easier to care for while I am going through all of this. I am worried about potential bald spots now and since it is short not being able to cover it.
Thanks in advance!!!
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I had nausea all through my chemo. Nothing seemed to work. I had heard Emend was good so I requested that and it worked better than the other drugs. The nausea was definitely chemo related, not cold cap related,for me.
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Thanks everyone!! Today I feel fine a little tired here & there but laying down when my daughter naps. I we definitely talk to my Dr about other anti nausea meds. I heard about a anti nausea patch that some say works too. I'm not sure how much I was give. During premeds. At this point I'm waiting to feel like crap later in the week and not just first day. I think it was more the chemo since I felt blah right after the AC was done so I'm probably sensitive too. I know my Dr is good about stopping all SE if she can. I took my anti nausea meds today regardless. Thanks again everyone. This is a tuff joinery it's nice to have others when you can feel alone
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Jb,
the caps made me nauseous, (mainly the first one) so I sucked on pieces of raw ginger while capping if I felt sick. My MO also had me take 2 norco an hour before chemo for pain from the caps so I was pretty sleepy during the procedure which helped.
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kgirl, I'm on the same treatment plan. I did/do have to thinning and balding spots and I went out and bought Toppik powder on amazon. It's a live saver! I think even with really short hair it should mask the thinning bald spots if you end up with any. It kind of just makes everything the same color so your scalp is glaring through. My MO also suggested taking biotin for my nails but it's supposed to help with hair too. I also take silica based on the Penguin recommendations.
I'm drawing a blank right now for any other advice but if I think of anything I'll be back!
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hi,
Just a quick update and hopefully some encouragement. I'm finally getting around to posting some pictures. I am 9 weeks PFC. I had really big sheds the past 2 weeks--as big or bigger than during treatment, but now this week almost nothing (comparatively). This is about 1/10th the amount that came out last week. Sorry for the gross hair in sink pic.
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Now here is my hair today before washing (ugh ugly roots). You can see part is a bit expanded/shows bald-ish area, but second photo shows how it looks after normal styling (much better).
I shed lots and lots and lots of hair, it sometimes brought me to tears...but this is proof cold capping works!!!!
I am so happy to have my hair and it's all anyone can talk about at the Onc office.
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So awesome BeatIt!!! Your hair looks great!
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Do you use a blow dryer??? I can't wait to straighten and highlight my hair.
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I mostly let my hair air dry while in treatment but am now using blow dryer on cool and sometimes flat iron, but not close to the scalp. I'm still using gentle shampoo and cool water to wash. I try to just comb out once a day. I've been using a little bit of hairspray, trying to avoid scalp.
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Looks great BeatIt! I can't wait to style!!
I am now 5 weeks PFC and my shedding has slowed down to about 25-50 hairs a day - 25 on non-wash days, 50 on the shampoo days. I couldn't stand the grays over my ears and at my temples, so I broke protocol today & colored with Natural Instincts. I only applied the color in those areas & left it on for just 10 minutes. My hair is air drying now but it looks like the color took and it didn't cause any immediate shedding. Time will tell...
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Thanks for the pics beatl2015 very encouraging for us all, you must feel pleased
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Pain while cold capping, the first cap often triggers an emotional reaction (I sob loudly in the waiting room) I think the pain plus overall situation of long term chemo etc. I've been in search for methods of distraction, this week I brought donuts and ate one after the first cap, it indeed worked (I ended up crying at the end of all the capping maybe due to relief another CC day was over) I'm glad to have hair on non capping days but man are those first caps cold and I have to re-committ to the process all over again. Anyway , what do you all do for coping and pain? I tried 2 Vicodin without much success, but 2 klonapin seem to help but I think this is difficult but worth it. Thanks, susan
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here I am 3 mo PFC
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eyelashes !!!!
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Suladog you look be
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Finally my stubby little original eyelashes are back
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I am about to start using the cold caps with my first chemo. However, I am really worried about the consequences of wearing these cols caps for almost 8 hours - like hypothermy, sinusitis and other health problems I might consequently have. Can anyone share their experience on the feeling of using the caps and any complications you had after using them?
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Svetka,
I used the caps and had no adverse effects, I bought a small electric blanket to throw across myself and used dr scrolls pads cut up to protect my face from the cold . I bought one of those microwaveable neck warmers ... Here I am doing my chimp impression
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Hair-Raising Capping Experience!
Hi ladies,
Just wanted to share my capping experience from yesterday. I had my 3rd TC treatment yesterday (only one more to go, yay!) I had everything prepared beforehand, capping stuff packed neatly and organized, infrared thermometer tested, etc. Once in the chair, we accessed the port, had the premeds going and my sister, who is helping me, was getting out the first cap to check the temperature in preparation for the 50 minute cooling session. Guess what? The thermometer up and died. It simply wouldn't work. Didn't come on, changed fresh batteries 3 times, the thing is apparently defective. I have no idea why it died, but it did. The next 30 minutes involved frantic online searches and phone calls that finally yielded one tool supply store that had a thermometer that went down to -50 degrees C. Just one in stock! I paid for that sucker over the phone and my sister dashed out to pick it up - an hour round trip. She and my onc nurse literally saved the day. The onc nurse helped with the internet search. Thank God she is supportive of the capping even though they've never done it at this facility before.
The glitch delayed my chemo for an hour but at least I was able to cold cap! Freaky day! At one point, I really felt like I had slipped into some weird reality show with all this drama! I'm just grateful that I could source and purchase a better thermometer directly from the chemo chair - a last minute Hail Mary play for sure!
The defective unit is going right back to Amazon and I am requesting a replacement. Next time around, just for redundancy, I plan to have to 2 thermometers (the one I purchased yesterday and the replacement that Amazon better send me). Be aware - stores like Home Depot and Walmart do not have infrared thermometers in stock that go as low as we need in degrees C. We had to look hard to find a specialty electronic/tool/hardware store and I was lucky to be in an urban area that had one nearby.
I have been prepared to expect the unexpected throughout chemotherapy, but equipment failure was not on the list! Sheesh!
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wildflower, I'm so glad you got the thermometer fixed so soon! My first capping session I had a similar issue but it was a battery issue. The thermometer came with a battery and it seemed to work when we tested it. Of course we get to the treatment center and turn it on and whenever we aim it at a cap we get an error. But yet when we aimed at our arms or hands it worked! We didn't have time to play with it so just threw the cap on. I quickly thought to change the battery out since I had brought two extra and voila it worked! Crisis averted but I was freaking out. So who knows what tempthat first cap was at!
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Yikes Wildflower - that is indeed stressful!!!
I found my thermometer at Sears.
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Steflove, up till now I've regarded the capping as a welcome diversion to the chemo routine, but yesterday - yikes!
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Suladog,
Thank you for your reply. What happens with the eye brows and eyelash when using the ice caps - do they fall out?
Anyway, I am still terrified to wear these ice caps for 8 hours. Maybe I would go for a wig at the end.
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Good thing you had the flexibility from the hospital. I'm possibly going to go through chemo depending on my lymph node biopsy on aug 17. How much pain is involved with the cold capping
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Lori, it is really cold when you put on the first cap for the first few minutes, but I've found it bearable. After my head goes numb, the remaining caps aren't so bad. Yeah, I feel the coldness when each new cap is placed on my head, but nothing I can't tolerate. It helps to complain loudly when each cap goes on, lol
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Thank you so much for the info. It's nice to actually hear from someone who is actively using the caps. How many times have you used them. I was considering taking a pain pill lo
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I've used the caps for 3 chemo sessions so far. I have just one more session to go. I don't take any pain pills. My pre-meds include a steriodal anti-nausea med, plus Emend, and Ativan. That mix seems to be enough for me to keep the nausea away, and I didn't want to upset that balance...some other people have used pain meds, I think, so maybe if you look back on this thread and search you'll see their feedback. For me, the worst pain went away pretty quickly, in about 5 minutes as my head got numb, and as I said, it really didn't bother me a lot from that point on.
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Lori, I also wanted to say, if your lymph node biopsy comes back negative, you might still want to ask them about the Oncotype test if you are early stage breast cancer and hormone receptor positive. That oncotype score is what landed me on the chemo side of treatment even though I had no node involvement.
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I had no adverse effects from the caps. The first one feels very cold and for me it was a bit painful for about 1 minute. Then my head was numb and I didn't feel anything else all day using the caps. Using the caps during the chemo sessions was a great distraction and made the time fly by. Using them for 4 hours after coming back home was a bit tiresome, but I could do it by myself and didn't need help since I could check everything in the bathroom mirror. I highly recommend using the dr Scholls moleskin on forehead-- this really helped with the cold.
Honestly, I have had worse pain from eating ice cream too fast. I found the cold caps very tolerable.
Friends gave me a crown ski cap to wear over the cold caps so I would feel like a princess
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