2020 What's going on...

January 30

Last week i had scans. MRI/NMR and CT-scan.
Now had a meeting with the doctor for results.

MRI:
There is a new tumor in my brain (frontal lobe), so possibly will need radiotherapy again for that. The other tumors in my brain have a slight growth, but not alarming. So, they want to hold off a while before starting radiotherapy and everything that comes with that.

CT:
No new things to be found, but what is there shows growth.
I am currently on Topotecan chemo pills, so it's a matter of time before the cancer breaks through. Could be a month or 6 months, but it will happen.
There is a study in a hospital 50 miles away i could enter into. My oncologist is going to ask for more information there, but of course there is always a risk playing test bunny. Also, if my cancer gets worse when i switch to the test-drugs, what then?? Can i get Topotecan again? This and more questions i need answered before i say yes, because the final decision is mine.

In my current state i feel ok-isch, so i would like to wait a bit until i get next scans. And then decide what to do. But by then the study will probably be full and no more room for me. I also don't know yet how many times i would have to make the trip. And for how long i have to stay, a day or maybe be admitted and stay there? All i know now is that they want to do a new biopsy to start.

So, this is what i have to think about. Oncologist will call tomorrow or Monday with more info about the study.

I will update the post when that happens.

Bye for now.

February 12

After talking it over with oncologists we decided it would be better to wait with the experimental drugs. If i get worse on the current chemo (Topotecan), i can always try the first chemo again (Carboplatin/Etoposide) to which i reacted well  last year when the whole thing started and i was really sick.

I am still taking the CBD on my own since i feel it helps. I'm taking 20mg/day now and it makes me sleep better and helps with my breathing somehow.

Since we are on the topic of alternatives, i have been looking into a few things.
What really interests me is a hospital in Tijuana called "Oasis of hope".
https://www.oasisofhope.com/

I started reading up on that when i found an other SCLC patients blog.
https://mysclc.co.uk/
The guy is from UK and is there in Tijuana now. His SCLC history seems to be very similar to mine. So i'm going to try and contact him for more information.
Like what will it cost in a private clinic like that? I don't suppose our national healthcare will help me over there? Need to find out.
But they use traditional meds like chemo along with other therapies that aren't approved yet.
All this for later of course as a last resort, but i need to think about it. My SCLC will come back and will kill me, that's 100% surten according to all specialists.
All we can do is try to make it stay away or in it's current state as log as possible. But it's growing slowly on every scan, so...













Comments

Char G said…
Thanks for being you, Martin. Keep up the good fight, we love you. #GZRfamily ❤️
Only you know what the best decision and I’m sure you pick the right one keep kicking it’s ass Marty! Alohas
Jana said…
Get well ,
Marty , we love you .
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