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Old 12-10-2015, 10:15 AM   #8
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

--part 6 --

Surviving Active Rads Treatment

I found the room I was receiving treatment in to be freezing; it was the late Fall. I ended up wearing tights under my pants, bringing my own wool blanket with me, brought a long-sleeve wrap cardigan to wear under my gown, wore extra fuzzy socks just during treatment, and had them put warmed blankets over my arms -- and then I was comfortable.

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I tried a bunch of different recommended lotions, ointments and creams during treatment. Here's what seemed to work best:
Aquaphor
Calendula lotion
Silvadene
Lubriderm



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For dry and wet desquamation the silicon dressings by Mepilex worked best. They cling without adhering and the foam versions can absorb exuded fluids.



For wet desquamation I found Silvadene cream covered with a hydrogel dressing and held in place with a larger piece of Mepilex over the damaged area was amazing. The hydrogel dressing is a wet dressing and it lets the wound heal without further trauma. You can keep the hydrogel pad in place for a couple days before changing it (I looked it up).



Johnson & Johnson used to sell hydrogel pads as part of their consumer bandaging line and I still had some in my first aid kit. Your treatment facility should be able to order some in for use with patients. My facility was reluctant for some BS administrative reason. You don't need much and you can order it online but it usually comes in packs of 10 larger sheets.


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At the end of treatment I started feeling itchy all over and felt like I had too much histamine in my body. The body produces histamine as part of the inflammation used to heal injuries in the body. I had some modicum of relief when I took liquid Claritin (Children's, was on-hand and the liquid works rapidly) but I still felt icky like when I have had bad allergies - nauseous even. After reading up about histamine intolerance I realized that rads had overwhelmed my body's ability to break down histamine -- there was too much inflammation. Anti-histamines only block histamine receptors but histamines still circulate.



DAO is the enzyme your body produces to break down histamine, but I speculated that my body couldn't keep up. My naturopathic oncologist heard me out and gave me a DAO supplement (HistDAO) and within a couple of days I felt better. Use more things if you need to because you don't have to feel like crap.
__________________
  • 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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