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Old 01-01-2017, 05:16 PM   #44
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

I continued with treatment, all of it, and also took my friend's suggestion to heart -- I had to use food as I did medicine, I needed to push it into me to be strong and to fight. I was determined to gain at least 10 pounds and I've just about done it. I just bumped up my carb intake a little and then I just eat and eat and eat. I was able to give up the support of the cane after a week. I tolerated treatment pretty well overall and basically just need to treat myself with dexamethasone on IT treatment days, just about 3mg with a extra liter of water and 500 mg of Tylenol keeps any headaches away.

Meanwhile, as all of this is going on I'm having to help out with my boys, attending school meetings because my 6yo threw a pencil across the room in his class, helping out my 9 yo with school projects. My life alternated between saving my life and being mommy. My kids were told that my cancer "was back" and it hit them hard, especially when I needed to have a vascular port put in -- even though that was secondary to treatment and prognosis and only to help save the veins in my right arm from so many pokes.

In November I started feeling better, it seemed to me that the HBOT was part of it. The HBOT was three fold: to force oxygen into the cells, to force IV therapies deeper into the cells, and also to help my body to heal from trauma. I also had confirmation from my MO, my cancer was growing on the outside of my brain and so as the cancer died my body should regain faculties as the trauma healed. Interesting, and something to give me hope.

I had another brain scan this past week and finally things are starting to show retreat -- lesions are shrinking and disappearing. I rationalized that something was going to fail and we just started with partial brain rads. The fact was that chemo with targeted therapies dissolved my original breast cancer -- this cell line has demonstrated that it is susceptible to chemo and I just to happen to have a type of spread that allowed it to be more easily treated in the brain. I've called this my epic battle.

My one neuro-onc said to keep doing what I'm doing because its working. My other neuro-onc apologized to me, basically admitting that she missed it. I told her that she shouldn't be sorry because she has helped me by ultimately being willing to give me what I wanted, drugs that I never would be able to prescribe and administer on my own. Having that kind of support from your docs means a lot, even if sometimes things go a little wonky.

I will resume IV therapies this week, I had to take off a couple weeks due to the kids being off school. My next scan is scheduled out for March, a more normal time frame for monitoring brain mets than I've been on which is huge. I don't know what will happen but you know what? I got to celebrate my 20th anniversary with my partner, I celebrated another Christmas and New Years with my family. I might be in triple overtime but I don't take a second of it for granted -- I'm still here.

The amazing thing is that just before Christmas I took my kids ice skating, I was actually ice skating. The next day I brought the kids up to the mountains for a skiing lesson. While I wasn't skiing myself, not this time, I was able to traverse uneven surfaces, hiking up snow drifts and stairs -- and I know I couldn't do that in October.

Here's to a better 2017.
__________________
  • 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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