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Old 11-10-2015, 10:46 AM   #10
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: Did anyone NOT lose hair OR nails on TCH protocol? All replies appreciated!

I know that hair loss is the most prominent side effect of breast cancer chemotherapy but I don't believe that embracing this unintended side effect helps anyone. It is what it is, or, if you can afford it (since at present it isn't available to everyone) you can use cold caps.

The reason that breast cancer chemotherapy drugs cause hair loss is because they are targeting skin cells -- our breasts, while glandular tissue, also are predominantly evolved from our epidermis. Our hair also emerges from our skin, and so the two are connected. Effective chemotherapy drugs for treating the one unfortunately equally affect the other, especially since our hair cells are continually dividing (chemotherapy drugs are cell phase specific, going after rapidly dividing cell predominantly).

It isn't often discussed but it is known by the pharmaceutical companies, and doctors as well, that 3% (or more) of patients receiving breast cancer chemo will experience permanent alopecia -- that means that you hair doesn't grow back after chemo. Suddenly a temporary badge of honor, unintended as it may be, becomes a small chance of permanent disfigurement. (see http://aheadofourtime.org/)

I heard from a MO and researcher that I should use cold caps because she was noticing this from young TCHP patients that she was treating and that sealed it for me. Using cold caps costs around $2500 out of pocket, including ice chests and dry ice if your facility doesn't own a proper freezer. I had two friends, but you could do it with one, who helped me out on the day of treatment with cap changes every 30 minutes. It was a hassle and as my hair loss increased during treatment the caps became colder but no one knew I was going through cancer treatment which made it a profoundly different experience for me -- both good and challenging.

The additional benefit of wearing cold caps is that it protects your follicles from chemo when the cells are done with the resting phase and starting to grow again. I had a good quarter inch of new hair growth around my final chemo dose which put me about akin to my chemo group sisters who stopped chemo (with no ongoing Herceptin) about 6 weeks before me.

Hair regrowth is weird during Herceptin for sure, in my group we noticed that the regrowth felt more fur like. It also slows things down -- kinda makes sense since again, we are treating the skin. Since stopping Herceptin the texture is much better. My hair is thick and full and a little uneven still. My stylist and I are slowly growing the new stuff through the old to get it eventually to a smart bob.

Here's a great discussion thread to learn more about the experiences of cold cap users:
https://community.breastcancer.org/f.../735873?page=1
__________________
  • 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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