Cold Caps Users Past and Present, to Save Hair
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Curly, great pics! You did lose a lot of hair, but you are still way ahead of the game for the process of growing it back. I hope you had several cocktails last night!
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tripper4ya...hang in there, don't touch it more than necessary, deep breaths, and you will know when the times comes if it is not working. Very good sign it's still there at day 22. Know that you've done all you can, and know that you couldn't have done more. Only time will tell at this point. Good luck to you
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with the TH The only place I have hair left on my body is on my head...can you say Brazillian??? My pale redheads eyebrows are still there but there are hardly any of them that arevisible even in normal times and my eyelashes are like those on a white rabbit normally too so not many changes there. My mo says the slowest growing hairs eyebrows and lashes fall out last and come back last but since what's there normally it's not much without "enhancement" that' s not an issue for me, I stopped using mascara about 2 weeks before chemo just so I'd get used to seeing myself that way
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Hi, Dancetrancer :-)
I am glad you mentioned about holding onto our medical receipts for taxes. I almost forgot.
Do you happen to know if we can use the expense from our cold cap rental too?
And the expense of all that dry ice. That REALLY added up!
Thank you.
Lynda
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Hi Lynda!
Here's what the IRS describes as medical expenses:
What Are Medical Expenses?
Medical expenses are the costs of diagnosis, cure, mitigation, treatment, or prevention of disease, and the costs for treatments affecting any part or function of the body. These expenses include payments for legal medical services rendered by physicians, surgeons, dentists, and other medical practitioners. They include the costs of equipment, supplies, and diagnostic devices needed for these purposes.
Medical care expenses must be primarily to alleviate or prevent a physical or mental defect or illness. They do not include expenses that are merely beneficial to general health, such as vitamins or a vacation.
http://www.irs.gov/publications/p502/ar02.html#en_...
Specifically, regarding wigs:
Wig
You can include in medical expenses the cost of a wig purchased upon the advice of a physician for the mental health of a patient who has lost all of his or her hair from disease.
http://www.irs.gov/publications/p502/ar02.html#en_...
Clear as mud?
Of course there is nothing specifically in there about cold caps. You will have to look at this and decide if you think you can justify it as a medical expense if audited. Everyone has their own comfort zone regarding these "gray area" kinds of decisions.
I would certainly say we all believe cold caps are for our mental health in dealing with hair loss, just like a wig! Would the IRS believe that? Not sure. A letter from your doc about cold caps being needed would provide lots of support for the deduction, should one be audited.
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Hi, again Dancetracer :-)
Thank you so much for all of that information. Sorry, I should have thought to do that! DUH!
My MO actually wrote me a script for my cold caps, so I think I am going to give it a try.
If my accountant thinks it is okay. I certainly do not want any problems with the IRS.
Thanks again!!
Lynda
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Hi, Gatomail and Curly.
CONGRATULATIONS on completing chemo!!!
Curly-I really like your new look :-) Not everyone can pull that off. I look like sh^t with short hair.
Gatomail-God Bless you for making it through everything you have had to endure . You are an amazing woman!
Jennzila-your hair looks so good! And your so pretty.
Oh, I have a question for all of you too.
Has anyone had a problem with your teeth after going through chemo?
Last week I had a tooth break. Thank God, it was more like a big chip, but I have never had any problems with my teeth and I am almost 50. So, it got me wondering if that damn chemo could have made my teeth brittle or weak.
Anyone experience anything like this? Note-I finished chemo 4 months ago.
Thanks in advance :-)
Lynda
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You are so welcome Lynda! That is awesome your doc wrote you a script for them - that surely would be sufficient for me personally to proceed. I mean if a doc writes a prescription for vitamins that changes them into something deductible, so it just makes sense to me that a script for the caps would carry a lot of weight!
Our medical expenses haven't been enough to itemize for federal (but I have been able to take the HSA contribution deduction - yay!), but they were enough to itemize on my state return and lowered my state tax bill!
These are things that are hard to handle when you are actively in treatment. But at a minimum throwing all receipts into a folder until tax time can save survivors a chunk of change.
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Chemo does change the natural saliva in the mouth and puts one at risk for more cavities and gum issues. A broken tooth - don't know if that is related. Make sure you tell your dentist about your chemo history. Fortunately, most mouth issues go back to normal after chemo, but you may have some damage that started while on chemo - not sure?
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joeyJames,
Yes I wound up losing about 4 teeth due to none weakening because of CMF 25 yrs ago. The teeth were replaced with bridges etc but I later got 4 dental
Implants as my insurance covered it. I wound up needing s sinus bone graft as the bone was eroded because of chemo and the resulting bone loss.everything was covered by the Writers Guild Insuranc
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Curly, thank you for posting your pictures. My hair seems similar to yours in thickness and length and it is encouraging to see my that my hair looks about like yours at the one month mark since we both are AC-T treatment. As much as I hate the thought of having to use those caps for another 14 treatments, knowing that I could have a result like yours makes it worthwhile at this point. I'm so happy for you! Thank you, too, for the port info. When I talked to my patient coordinator, she said they likely will take it out at the mastectomy surgery which is scheduled 7 weeks after my chemo ends. Hopefully, i can get it done sooner.
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Hi Ladies,
Does anyone here know if these cold caps are used in the Netherlands as part of Chemo treatment?
Thanks! Veronica
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curly girl, you look great! It looks like a cute short cut for summer. And you look healthy and rosy cheeked too! I sent my caps back yesterday. So weird. Washing my hair gently today, first PFC. I love writing that!
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Hi all,
Successfully had my first chemo last Monday, March 2. It was a little bit of a nightmare as it took the pharmacy a good two + hours to have the second pharmacist approve my pre-meds to send up. So I ended up cold capping for maybe 2 hours before first chemo treatment due to that mishap. I guess that couldn't hurt... just annoying. Especially for my first visit, and a 4-5 hour day turned into a 7 hour day at the hospital, with me being the last patient in the infusion center. I felt bad for the nurses that had to stay with me. But at least it was dark when I left the hospital so I didn't have to deal with the stares of leaving the center with the caps on my head (although that's really the least of my worries). I was extremely gentle on my first wash post chemo, and I don't think I got all the grease out of my hair. I'll have to find a better method of washing to make sure it gets clean but without being too aggressive. Does anyone have any technique suggestions?
For now I'm trying not to worry about the major shed, but it's on the back of my mind of when it's going to happen. I have a wig picked out and ready to go just in case this isn't successful for me.
Another question - did anyone have a bad acne side effect with their chemo? My face, neck, and chest broke out in horrible cystic acne this past week. I tried a new face wash, so I'm not sure if it's the chemo or the face wash, or a combination of both. But it's pretty painful, and extremely embarrassing. I don't even want to leave the house that's how bad it is. My face feels like it's on fire. I emailed my oncologist - waiting to hear back if this is common and if he can prescribe anything for it. Yay... another pill to take. (I'm not a big fan of pills, and here I am taking things for nausea, diarrhea, pain, neuropathy, and sleep....)
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wpmoon...more time can only help not hurt, so good going! First one down! Congrats! Acne may be because of steroids, my acne actually cleared up from most of the chemo. A little extreme when compared to proactiv, but silver linings! Ask your MO, maybe lay off the face wash for a week too. Good luc
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hi wpmoon,
I had horrible acne after my first tx - not sure if it was the TC or the dexmethasone, but I was really worried that it wouldn't clear for the 4 months I had chemo. Happily it went away after first tx and never came back. Instead my skin got REALLY dry through the rest of treatment. So weird.
Sorry the pharmacy was a pain. No fun. But congrats on first treatment...how many do you have
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One down, five to go! Doing 6 rounds once every three weeks of TCH-P, and then Herceptin only once every three weeks to complete a year of treatment.
I'm laying off the face wash and make up for the next few days since I'm off work and don't really have to leave the house for much. About to go try a warm compress so help since it's pretty painful...
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Hi, Veronica :-)
I am not sure about the caps being available in the Netherlands, but I found an office in London at the bottom of this page:
https://penguincoldcaps.com/contact-us/
I would definitely contact them and ask.
Good luck!
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Is it Friday yet?
- that is my hair wash day.My scalp is so itchy! Is it from dirt, from chemo induced drying-out (although it's so greasy already that I don't think so), or is it about to fall out?
DaniellaD - I was soooo tempted to wash it last night again, but was too afraid after I put it through the trauma of velcro rollers. And I was a little lazy last night too. You mentioned Giovanni Tea Tree Oil shampoo. I know it's paraben free, but what about sulfates? Is sulfonate OK? And all I'm finding now is Giovanni Tea Tree Triple Treat Shampoo, can't seem to locate the Oil Therapy one. Would you mind telling me where you got yours?
Jennliza - same with your shampoo - I see it's paraben free, I don't see sulfates, but sulfonates, so I suppose that is fine? I'm using Dermoganic shampoo and it feels nice after washing, but like Daniella pointed out, might be not helpful with the greasiness. I have a question about the reasoning behind not using brushes? Is it because of the pulling?
Angiel, Hope49 - I do see a lot of ladies mention the Sea Chi conditioner, but I probably should wait until my hair starts drying out.
I have two doctor appointments tomorrow. I don't want to leave the house! Ugh.
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RE: acne. I had it bad, too, after my first tx but never again.
Doc told me to use only Cetaphil for cleaning my face - it's very gentle. In fact, it's all I use now!
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I got a rash on my neck after my first treatment and on my chest after my second treatment. Benadryl and Aveeno body lotion helped me
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BB, I ended up having an itchy, flaky scalp so I used about a teaspoon of apple cider vinegar added to my shampoo and about two teaspoons of the vinegar added to two cups of water for my rinse. It really helped.
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Thank you, Leslienva, I'll add the apple cider vinegar to the grocery list. I'm at a point where I'll try anything (so many more weeks to go...).
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I had 17 pimples on my face after my 1st infusion and then it cleared up completely. When I asked to look more youthful I did not mean acne.
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In today's NY Times: http://well.blogs.nytimes.com/2015/03/09/keeping-y...
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great article!!!
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301724, thanks for sharing the article. It helped to read something verifying what I'm putting myself, will be worth it!! Hopefully insurance will help others down the road in the near future!!
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I have number 3 of 4 rounds of TC coming up on Wednesday. I did have a pretty big shed today. It falls exactly on day 19 after my treatment. Which is the same thing that happened to me after treatment 1. So I'm hoping I don't have a big shed after every round. I have/had thick hair, but it is fine, so it does show. You can see light through my hair when I wear it down, its so weird. I think it may be clumping a lot at the roots due to being dirty. With that said, I will be thrilled to have round 3 over. I'm hoping my onco looks at me Wednesday and is surprised. When I went in for round 2 he just said, "sometimes it takes 2 rounds of chemo to knock all of the hair out..."
Such a negative nelly. My scalp is itchy and dandruffy and just yuck! So I have actually resorted to putting a small amount of apple cider vinegar and water in a spray bottle and spray it when it itches. My family says I stink. Yeah, I know, but my head stopped itching!
My eyelashes are hanging on, my eyebrows are thinning.
I have read that a lot of people lost their eyelashes at the end of chemo, I hope not. I'm using Latisse to try to salvage what I can.
I hope you are all doing well.
Congratulations to everyone that has finished chemo! I'm sure it's a great feeling.
My last treatment is April Fool's Day, I'm not sure if it's funny or not......
Michelle
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Hang in there Michelle! You got this! I lost lashes about 6 weeks after chemo but I was using Latisse and they grew back really fast. Brows - I only lost about 50%. They thinned and I had to fill in with make up and play "connect the dots" with them. You are almost done!! Yay!
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My last dose of chemo was 7/2/14. My last dose of Herceptin was 1/28/14 (I did 16 doses instead of the standard 18). My eyebrows are thinner than they were before, my eyelashes are half as long and both still shed every few weeks. I still have them and I'm glad for that but it is seeming like I'll be spending more on makeup to compensate for their inadequacy. I didn't use Latisse as I've got blue eyes and didn't want to chance any chance in iris color.
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