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Re: Can Cold Cap Prevent Treatment From Working?
My RO assured me that external application of cold caps would not affect the internal temp of my brain. As you might recall the brain is highly vascularized and all that hot blood isn't going to be easily influenced by a chilled scalp.
There is also no evidence that my cerebellar metastasis was at all connected to my use of cold caps during neoadjuvant TCHP two years ago. There's a 30-50% chance, if you are going to develop HER2 mets, that it will go to the brain as the first site of mets. There is a 70% chance that breast cancer in the cerebellum is HER2+/HR-. With locally advanced HER2 affecting my full left axilla and my internal mammary node (behind breast bone) I'm kinda predictable as far as having metastatic breast cancer. Wish my docs were a bit more scientific and understanding of these realities before I almost died.
When I was having partial brain rads earlier this year I mentioned to my RO that I had previously used cold caps, plus that I had not had my hair cut during my craniotomy nor when my Ommaya port was placed in my skull -- it's why my hair is below my shoulders even with some big haircuts to cut off the chemo damaged hair.
My RO thought that was great and said that I could use cold caps with brain rads too. This was confirmed by the Penguin Cold Caps rep. I needed fewer cold caps than during chemo and the cold application was less specific than during chemo so I ordered two Elastogel cold caps -- and am forever thankful for the awesome customer support rep in Georgia who expedited them to me.
I figured I had one shot to have the cold caps help my hair follicles during treatment -- it would either help or do nothing. If I didn't use cold caps and my scalp/follicles were damaged then there was no going back. What I found was that using the cold caps helped to get rid of some of the heat from my head; it felt good to cool things down. I used them almost daily (I did my best) for 1-2 hours at a time, sometimes I could use them twice in a day (with only two cold caps I needed them to refreeze).
All my docs told me that my hair would regrow around 3 months, they seem pretty sure of that fact. I did read stories where new hair was thinner or diminished though so I worried. My Chinese Medicine doc put me on an additional herbal formula for my Kidney Qi, evidently in that mode of medicine the hair is associated with kidney health. Low and behold around 3 months post rads, about 3.5 months after my hair fell out, I got some peach fuzz new growth.
Now I've got two cold caps sitting around and I'm afraid to get rid of them in case I need to use them again. Hehe -- know that feeling.
Anyhoo, I hope this helps.
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- Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
- Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
- 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
- 10/27/15 atypical uptake in right cerebellum - inflammation?
- 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
- 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
- 3/2016 - stable scan
- 5/2016 stable scan
- 7/2016 pseudoprogression?
- 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
- 11/2016 Cyberknife to temporal lobe, HBOT just prior
- 12/2016 - lesions starting to show shrinkage
- 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
- Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
- Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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