Cold Caps Users Past and Present, to Save Hair
Comments
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I highly doubt it means you will lose excessive hair on the back/sides - I wasn't numb after capping and I kept my hair! (minus the normal shedding pattern)
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Hi all,
I am so happy that all of you who are using cold caps are successful to keep your hair, my oncologist has refused to let me use cold caps. He just said I need to find another doctor if I want to use it. The bummer is that he is a very good oncologist - so my family is not happy to change doctor. I was kind of looking forward to keep my hair, but now have to get used to loosing it, did any of you have any experience with wigs and have any suggestions. Will appreciate it.
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Jennjdance, and others doing taxotere/carboplatin (with or without herceptin) -- I finished 6 rounds of every 3 weeks TCH back in February, with excellent results. After lots of research, and conferring with my oncologist, I decided to keep the caps on for only 2 hours after the TC (and reduced to about 1.5 hours on the last 2 rounds, when I was experiencing extreme fatigue). Taxotere is the hardest on the hair, so we did that first, followed by carboplatin (which also causes some hair loss, but is not as bad as taxotere), and herceptin last. By the time I was done with the herceptin, line flushing, etc, I was always at least an hour past the end of carboplatin. I did one cap change right before leaving, and then one more change after getting home (keeping each cap on about 30 minutes).
My oncologist and chemo nurses all said I had the best results they'd seen from the half dozen or so cold cap users they'd had. That's not a big sample, and I'm sure individual factors play a big role, but limiting the post-infusion capping time sure didn't seem to hurt my results. I also found one study that actually compared results with two different time periods for post-infusion capping, with the two groups of patients all on the same protocol (not TC), and the shorter time actually got slightly better results. I didn't bookmark the study, but it was one of the many studies done in the Netherlands, where they're using the cold cap machines. I know how nerve-wracking this process is, and how we all want to be super extra careful not to do anything that would hurt the results, especially when going to so much expense and discomfort. There's a natural tendency to think "more pain = more gain", but a couple of extra hours of this for each round is a LOT of extra misery, and might actually do more harm than good.
I also found a document on the Paxman cooling machines website that gave info on recommended post-infusion cooling times for a lot of different chemo drugs, both individual and combinations. Unfortunately, not all of the common combos used in the US (e.g. taxotere-carboplatin) are included, but it's still useful as a guideline.
http://www.paxman-coolers.co.uk/patients-downloads-resources-centre/ click the "Recommended Scalp Cooling Times" link
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blueflowers, so sorry your oncologist does not feel comfortable with cold caps, but I understand if you do not want to change oncologists. I do not have any experience with wigs, but there is a thread on bco called Hair, Hair, Hair (search for it) which will be very helpful to you.
Adrielle - fascinating! So cool to hear there is research (and your personal case study) showing a shorter time period is possibly more effective...as that 4 hours post really does SUCK royally, lol! Thanks for posting!
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jennjdance, I'm glad you made it through infusion #1 OK. I never felt like the caps made great contact with the crown of my head (back end of the top) and the top part of the back of my head. I tried to remember to push down on the caps in that area some of the time, to get better contact. The velcro straps should work to hold the caps in close enough for most of your head. I would agree that your hair on the back of your head is probably thicker and insulates your head more. You should be just fine.
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Is anyone putting on the caps during the week to help stimulate growth? I read earlier threads from a few years ago where women were taking them out of the freezer and wearing them for a few hours a week.
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I couldn't bring myself to look at them in between infusions, lol.
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Blueflowers...it is really unfortunate that your oncologist is closed minded and not supporting you. Did he give you a clinical reason for not allowing you to use them? I am so frustrated when I hear that doctors don't support their patients with this especially if they don't produce clinical information demonstrating why they feel it would be harmful to someone. I hope your treatment is with minimal symptoms and you can get through all of this ok.I also had scalp soreness on the top of my head but not anywhere else. I think I may have gotten a little frost bite up there. It was sensitive for a long time after chemo - it didn't hurt, but it was sensitive. Now it is normal. I think feeling that is normal.....you won't lose your hair!
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Chicago land- it doesn't hurt anymore but 6 hours after treatment ended it's now numb. How do I know if it's frost bite? And if it is- will I lose my hair there??? Ugh. It's right on the top front. That would be just awful.
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Jennjdance-I too experienced pain in the front of my head for about 5 minutes with ever cap change. It felt numb and then tight days later. I did get a frost burn;( That part of my scalp has been flaking for the past two days but I am 13 days past my first treatment and have had virtually no shedding. Admittedly I can't stand the flaking and I have picked the flakes out of my hair and unfortunately a few times a few stands of hair came too;( Trying hard not to pick!! My doc said if I was going to lose my hair it would happen 12-14 days past my treatment so for the past 2 mornings i've been afraid to look at my pillow! Hang in there.....if you do have frost burn try not to scratch or pick.
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Adrielle- I just finished a trial for PAXMAN cold caps. I had 4 x T/C. PAXMAN does not work NEARLY as well as PCC. I lost 80% of my hair and cannot go out without head coverings as I have obvious bald spots, Recession and and ponytail so thin a small elastic slips out. I will have to cut my once shoulder length hair dramatically short. It will take me a year at least to get back what I lost.
I WOULD NOT USE PAXMAN or their guidelines for any valuable advice.
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Blueflowers- MO won't support you using CC? I would find another MO as many of BC have done. We are the customer! Chemo is an MO'scash cow, they usually don't like to see patients leave. You live in an area were there are many MO choices. Permanent hair loss after chemo is real Taxotere has a reported 6% permanent hairloss. There are many threads on these boards that address that.
One thing I've learned during this BC journey is to trust your instincts. Your instincts said to CC, I would encourage you to keep exploring your options.
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barremom, I'm so sorry to hear about your hair loss with Paxman. Were there others in the trial at the same time as you that you've talked to? Did everyone in the trial use the caps at the same temp and for the same amount of time? I'm just wondering if they were experimenting with the regimen and you drew the short straw. :-(
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Thanks Patin- Yes, there were others in the trial. One other girl was on the same schedule as me so I saw her results which were also poor. The nurse who ran the trial said everyone had the same results as I did. The staff seemed disappointed with The results of the Paxman systemas well. Everyone received one of two machines that ran a one consistent temp. There was actually nothing to adjust in terms of temperature control. One on and off button. There were not two groups per say one receiving the correct treatment and one not. If you were selected into the trial you had the machine. If you weren't selected you didn't get the machine at all.
I took a chance and it is what it is. Just moving forward and will contribute my knowledge of Paxman when warranted as I want others to learn for my experience
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barremom you do your fellow cold cappers a great service by staying on this thread and advising about your experience with the Paxman system. Thank you. Perhaps Paxman will use this to adjust their parameters for a more successful outcome in the future. Too bad they didn't design the trial to look at different parameters.
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Just got some bad news today from my cancer center. I was willing to donate one of the freezers and they will not allow it (said it was too much of a liability and caps are not FDA approved.) I was still okay to use the coolers, dry ice, etc., but now they are not sure about the dry ice coming in to the center either because they are dangerous chemicals. I assured them it would be kept in coolers and only my friend and I would be anywhere near it. They are worried about the fumes from the ice being a hazard to other patients. UGGGHHH!!!
I have put in so much time researching, making phone calls, reading all of the posts here, etc to prepare to use the cold caps and now I may not get to.
I had BC in 2006 and of course lost all of my hair. I just can't go through that again! Has anyone else encountered any of these same issues.
Thanks! Any help is very much appreciated!
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pinkflipflopsTell the brain trust over at your chemo center that dry ice is simply the hardened form of carbon dioxide- you know, the stuff you breath out. As long as you're not in a closed room for hours breathing it in, you're fine.
I had a nurse and then a hospital administrator try to tell me it was policy not to allow electric blankets. It's was a scene. I've used an electric blanket 9xs already and now it's policy? Long story short, I told them they had ostensibly changed their policy by allowing me to use it 9xs. And if they tried to take my blanket, I was leaving. The administrator said she was going to get some saftey officer. Long story short, it was high drama and I yelled at one pointthat "she could get God himself but she wasn't taking my blanket." I cried afterwards but I kept my blanket. I say all this because you must remember to be your own advocate.
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Daniella - you go girl! Sorry they are being stupid and causing you so much stress. Are you almost done?? I know you must be getting close. Hang in there girl!Pinkflip - that is ridiculous. They are trying to do anything they can to make things difficult for you. Have you contacted the hospital's patient advocate (if it's at a hospital)? So do they want you to go elsewhere to be treated? I hope they work this out for you. You don't need the extra stress right now. Don't give up! I know too many people that have had permanent hair loss from taxotere.
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MDG two more to go. Tomorrow is number 11. As for the blanket scene - it will go down in infamy at Sloan Basking Ridge. The nurse was a jerk. I waited 3 hours for a chair. Then after she tells me that "oh no, it's hospital policy, blah blah." She goes and gets this administrator who proceeded to stand over me (she was at least 6 feet in heels standing over me, in my cap, sitting in the chair)waving her hands in my face about policy, safety issues, etc. It was awful. I couldn't believe this women had the nerve and lack of compassion to yell at a cancer patient. I told her the only safety issue would be if she took my blanket and I didn't get my chemo. When she stormed out I yelled out "I'm a lawyer, I'll be here all day...with my blanket...so bring it!" It got ugly fast. I was so upset and I still am. I couldn't cold cap without my blanket! After, my favorite nurse came over and said basically wtf policy are they talking about. He said that they were all gossiping about the patient with the blanket. Yeah, so I'm excited to go back tomorrow. Good times!
Pinflipflops - I'm angry, done, don't feel well and annoyed with all the stupid people involved with administration that we all have to deal with along with the cancer. So if you want, I am a great lawyer, I'll call your cancer center since I'm on a roll anyway
Sorry for typos and grammar. This site has a delay on my computer and won't let me edit.
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So it's been 24 hours since my treatment ended. My scalp is still numb and my forehead is a little swollen. I did reach out to the company and they said it has happened before and usually just scabs up and flanks off. I'm still worried. Especially my fore head being swollen. Ugh!!!!
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Daniella - I had to laugh at "I'm a lawyer, I'll be here all day...with my blanket...so bring it!" But what the h.... were they thinking? Unbelievably poor decision-making on the part of the jerk/nurse and the administrator. I'm so happy for you that you only have 2 treatments to go!
Jennjdance - did you use moleskin to protect your forehead? I'm not sure what would cause your forehead to swell, but hopefully that and the numbness will go away soon.
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yes I did. We are thinking that the problem was I used the gold strap for thick hair and my hair isnt really too too thick.
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You go Daniella! The "blanket policy" is just plain stupid, almost as stupid as the supposed dry ice hazard. Pinkflip, have you considered changing chemo centers?
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Daniella...I am LMAO! Sorry to be laughing about your story but your comment "I will be here all day.....with my blanket" just got me! I also had stupid people while going through chemo. My favorite was the fact that the nurses and my MO really pressured me to get a port (I was only having 4 TC's so I did not want a port). They would not let up so I finally gave in and got the stupid port. I show up for blood work and they REFUSED to draw blood from the port....they ONLY use that for chemo. WTF???? When I lost it with the PA she said "well if you are too traumatized by getting blood drawn from your arm....." I never heard the rest of the sentence...I went NUTS! I yelled "traumatized???? really??? I just had both of my boobs cut off....the needle isn't the issue. If you make people get a damn port then you should be using it!" They basically only had lab techs draw blood and they can't use a port and it was "too inconvenient" for the nurses to draw blood because "they are busy giving chemo". Glad I got a port so I could go through another procedure just so it could be convenient for you. OMG! REALLY? I don't understand how people like this are allowed to work with cancer patients. Don't get me started on the idiot that coded my BMX as "breast augmentation" and then sent us to collections because we refused to pay the bill............ She kept saying "we don't cover cosmetic surgery"..............OK...I will stop now 0 -
Daniella - I think I love you.
:-)
Pink flip - what nonsense. Is there an alternative infusion center?
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Daniella - you f*ckin' ROCK! I love your determination and self-esteem!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Keep on, keepin' on!
mdg...no freakin' way! Unreal, just unreal how awful some people can be in healthcare (I work in it...I see the worst stuff behind the scenes, too!) Ughhh!
Jenndance - hang in there sweetie! I'm glad you called the company and got feedback about what likely happened. It does sound like it got too cold. I'm guessing the forehead swelling is an inflammatory response. Sure do hope it improves soon {hugs}.
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OMG Daniella and mdg!!! You ladies are awesome-wish you would have been one of the patients I've helped with the caps. You're both so brave!
Daniella- I LMAO when I read what you wrote, "I'm a lawyer, I'll be here all day...with my blanket...so bring it!". I would have so loved to have been there to see that! I have helped dozens of women with the caps. At first I was first shocked by what I would see/hear, now I'm just mostly disgusted. I don't think patients realize that these nurses are little more than receptionists trained for specific tasks. Chemo is routine for them.
"I just had both of my boobs cut off....the needle isn't the issue." Oh, there ya go mdg, being one of the 'problem patients'
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Thanks everyone but really, I cried my eyes out after the stupid jerk in her high heels left. I really felt so helpless sitting there in my chemo chair, with my cold cap and having this amazon schooling me as if I was a child. It was a surreal moment. The jerk nurse got me back by administering my premeds one at a time, taking about 1.5 hours. So I ended up having to wear the cold caps much much longer between the blanket situation and the premeds.
I really dread tomorrow's chemo. I am just done. Done with my life being out of control because of cancer. Done seeing my hair all over everything. Done looking in the mirror and seeing a reflection of a person that I don't recognize anymore. I feel like I have aged 50 years since my diagnosis. I am starting to look like it with the grey hair, sallow skin and sadness of watching my life implode. I'm thankful for these boards and all of you. I thank God that even though my caps were truly the crappiest ones available (I had to have 5 replaced!), they saved my hair, so far. I'm thankful that chemo is almost over and am trying not to dwell on the rest of the treatment that will go on for much longer. Like all of you, I am just sick and tired of being sick and tired. I am praying tomorrow goes smoothly and they don't give me any crap about my stinking blanket!
MDG - parlato come una vera Italiana!
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Oh Daniella, I'm so sorry to hear about the drama they put you through. That's horrible. Are they crazy? expecting you to do cold caps without electric blankets? Don't they understand the risk? You could get sick and that's very dangerous for someone going through chemo. They shouldn't be lecturing about their stupid policy. If they have a valid reason for that policy (I don't think they do) they should be thinking about alternative they can provide to the patients. Good luck tomorrow. Hopefully they realize what jerks they are, and treat you with respect and compassion. You are almost there, 2 more to go. You can do it!
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Hi everyone, I haven't been on in quite a while, but wanted to drop in and see how many pages the forum had reached. 408! I was one of the early users and first showed up back on page 16...I'm approaching my 5-year cancer-free mark and have coached hundreds and hundreds of happy PCC users. I believe there will be a presentation about PCCs (and also the Dignicap) by Hope Rugo, MD (UCSF) at this year's San Antonio breast cancer conference.
DaniellaD: what you experienced is atrocious. It also violates your Patient Rights, and you should file a complaint with the Patient Advocate at the hospital, and also tell them you intend to file a complaint with The Joint Commission -- the organization which accredits, or not -- all health care organizations by conducting unannounced surveys. In fact, it's very effective to ask the Patient Advocate for the number for The Joint Commission...if you want to see things turn around quickly, that is about the fastest way I know. (I work in quality improvement at a large hospital.)
For anyone whose MO won't let them use caps, I *strongly* encourage you to at least talk to another MO. First, your physician isn't listening to you, and this can be literally fatal. The other important reason is not so much with the caps, but breast cancer treatment is a very fast-moving field. You will be managing this for probably many years, and you want someone who is up to date on the new treatments. When I went through my treatments in 2010, I benefitted from many treatments, techniques, and tests which were very new out of clinical study. But not all docs stay on top of it or have experience with them. So, for that reason, if your MO isn't able to do a very simple PubMed search on their own, or pick up the phone and speak with Hope Rugo MD at UCSF who has led the clinical studies on PCCs and Dignicaps, then will they really be able to keep up with the many changes in treatments and protocols? You deserve the best, but most of all you deserve a physician who LISTENS. To You. PCCs are not some shady fly-by-night scheme. They are safe. They work. It is the only effective way to manage the most visible and devastating side effect of chemo.
If you decide not to use PCCs, the choice should be yours, not your doctor's. I'm hard-core on that difference.
Keep on keepin on, everyone! This list was my main support, back when there were few of us. So glad to see everybody helping the new users and paying it forward.
Cheers to all,
Susan0
