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Old 12-29-2015, 06:32 PM   #12
agness
Senior Member
 
Join Date: Aug 2014
Location: Seattle, WA
Posts: 285
Re: My leptomeningeal journey

--- part 11 ---

After I had my brain tumor removed it was a weird time. My kids were off for the week with their dad, my parents were caring for me, I was walking slowly, I had increased ear ringing, it was so hot and dry and everything seemed surreal. I thought I was dying but then I looked up the side effects of the dexamethasone that I had been on and it matched up to be related including muscle wasting, acne, and more. Oh, well that is good to know. Actually while the dexamethasone saved my life at the hospital I knew that it wasn't good to be on it long-term. It depressed the immune system and increases blood and CSF glucose levels -- totally bad for cancer. I weaned down quickly and a friend who's wife died of primary brain cancer sent me some links about Boswellia Serreta which also reduces cerebral edema without the side effects. I asked my naturopathic oncologist about it and decided to take the plunge, I could always take more dexa if I needed and frankly my threshold for cerebral edema was really quite high at that point. I found that taking 6-8 caplets a day (two per dose) was equavalent to 4-8 mg of dexa per day. You can also mix the two to get the benefits of each and not have the side effects which was good to know. The Boswellia had an added benefit in that it also is used to treat arthritis and my bone and PET scans that were done after my brain surgery showed pre-arthritis in my shoulders from chemo.

Evidently if I had rads to the tumor before surgery then there would be less of a chance of disease spread when they operated on me but we didn't have that chance at the time as my disease was so progressed.

I started researching a ton and delved more into this board, Inspire.com, joined the breastcancer.org brain mets board, and read a ton of research about cerebellar mets.

Basically anyone with brain mets is dealing with an under-researched condition. They historically excluded patients with brain mets from drug trials and couldn't even decide on how to measure any improvement in disease progression until pretty recently. Cerebellar mets and HER2 brain mets seemed to be something that you would expect to find more about and yet there wasn't that much out there. The ASCO recommendations for HER2 brain mets from 2014 rather embarrassingly were based not on studies but on what they thought was working best. Oy.

I have since read that there is a 40% chance of developing leptomeningeal mets if you have surgery in the posterior fossa, the area of the brain where the cerebellum resides. This was never mentioned. I read the stories here and on the http://www.brainmetsbc.org/ site about treating brain mets and I asked my team to do more. They were hesitant. I said I have young boys, this isn't a game to me. They wanted to wait and see. They didn't know about that increased risk of leptomeningitis for me.

I arranged to have LINAC SRS to the tumor bed -- the neuro-onc said 4-6 weeks after surgery. I don't think it made a stitch of difference in my outcome now, but maybe in the tumor bed itself. I had 5 fractions and did water-based fasting during treatment to try to increase its efficacy. My hair fell out in the treated area a couple weeks after treatment started as I was told. A bummer but from the front you could still see nothing, I was still just me.

In October I went down to see a HER2 brain mets researcher at UCLA. There was no accounting for the fact that I had a pathologically complete response to neoadjuvant chemotherapy either. I had mets and that was the end of the story. The MO said that she would have me take lap/cap or kadcyla for the rest of my life, probably starting with lap/cap (Tykerb/Xeloda -- see Landscape trial of 2013) since my brain was my first site of mets. We felt discouraged but knowledgeable.

My team in Seattle still said wait and see. They could put me on drugs that would make me sick or they could just wait and see what I was dealing with. I was given a 50% chance of living longer than two years -- and they thought those were good odds.

I had no presentation of disease but I was completely expecting the other shoe to drop. I decided to just sit tight and enjoy my kids because nothing was coming too easily.
__________________
  • 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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brain, it herceptin, ketogenic, leptomeningeal, mets

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