Stressed to the max. This week is almost over, and I am finally ready to talk about it. We are still no closer to a decision on what to do with the remaining cancer. Last Thursday my doctor took my case to the 'tumor board' where all the specialists help decide what is best for certain cases. They called me back that day and told me they thought radiation might not be our first choice. That I might want to do a trial they are conducting here at the Huntsman. It is something similar to the very first first trial I tried to get on a couple of years ago. They inject your tumors with a common cold virus, which attaches to the cancer cells, the body picks up on them as foreign, destroys, and even potentially gets the immune system to track down other cancer cells.
In theory, anyway.
This was not one of the 4 options that was presented to me when we got the results of the scan. I was cool with any of those.
was a trial that I didn't qualify for in January, but they have changed
the rules since. It was the inject the tumor with IL-2 and IPI.
I liked this because I'm pretty sure that that would give my tumor
hell, as I had a great response with both of these drugs. In January
you needed a tumor to inject the drugs into (my armpit) and another
accessible to to watch
and biopsy (my adrenal tumors would have been too difficult to get at
with a needle). They have changed the rules to where you would only
need one. Well, when they looked into the qualifications, now that
tumor is too big for the trial (I think it has to be under 2 cm).
Another option was surgical removal. I am okay
with this, but the doctor thinks anything I can do to stimulate my
immune system is a better choice. Okay, makes sense. Which is why he
recommended radiation (we will call that option number 3). However,
another option we are looking into is getting this tumor out surgically
at MD Anderson (Texas) and growing the TIL cells from it, freezing them
in case I am eligible for a TIL transfer (chemo to deplete your immune
system, then they give you your own T cells back, with the ones that
where fighting the cancer in great numbers. Also adding a little IL-2
to the cocktail. It is a pretty miserable treatment, but I am so game
for this, always have been). The thing is, I don't even know if they
will grow your T cells and freeze them. I am doubting they would as it
would be very expensive for a patient that isn't even doing your trial.
So I wonder if that is even an option, the doctor is looking into
that. I was up at the hospital on Wednesday getting some blood work
done to see if I have the right blood for that anyway.
The other thing we are throwing around is an antiPD-1 trial (the drug I wanted in Oregon) that is designed for people who did have colitis while on IPI.
This one is only in Florida. I would so do this too, but it requires a
trip out there every two weeks for as long as it's working, as my
doctor and I are not sure if we need to get that extreme yet.
you getting a picture of how confusing this all is? So to add to my
stress, a PET scan was ordered for this week to make sure we did indeed
have a complete response in my bones, as the trial they are doing here
excludes patients with bone tumors. I have been doing brain MRIs
and CT scans every 2 months, but not PET. PET scans are the ones where
I sit still for an two hours and stress like crazy as the radioactive
sugar tracers tack down the tumors. But it does make the cancer easier
to find. And I haven't had one since September (the one you saw).
after my scans, the study nurse came to talk to me about the trial.
She was running through the qualifications and one of them is you
couldn't have had more than one systemic treatment. I have had three
(IL-2, IPI, Temodar). She said she didn't know, but maybe they would only count the Temodar
because it is the only one that is technically 'chemo.' She would have
to ask the principal investigator about that. So I don't even know if
that is going to be an option. Wow. The thing is...
Josh and I found a house one morning, Tuesday I think.
put an offer in the first 24 hours it was listed. There were three
offers made. Ours was chosen. I was laying in bed on my side reading
through the contract, smiling about this dream come true. A walk-in
closet! A large kitchen! Big widows with plenty of sky! Somewhere in
the middle of these thoughts I happened upon a round, hard, tiny, but
familiar lump on the posterior side of my armpit. I had to use all my
logic to convince myself that I was not in the middle of one of my
nightmares. Because this is just how I find them in my dreams.
course, it might not be cancer. It might be a lymph node working hard
right there by the tumor to attack it? It might be a ball of fat? I
don't know though, this has all the feelings of something sinister. Can
you imagine my disappointment?
I signed the
papers. As my sister pointed out, there really isn't ever going to be a
good time to move for me. I mean next month alone could find me in
Texas, Florida, or my local hospital for frequent visits. WHO KNOWS?
So now what? We put our house up, we wait to see what the scans show, and we move on. Literally.
this has been a hard week. And here are my kids that need me to
function. And here is my house that needs my attention. And here is my
husband who needs me to pretend it will all be okay.
This is the kind of weight that has me wondering how tough I am.
A prayer this week that we will choose the right thing to do would be very much appreciated. It is difficult for me to not know where to put my energy and hopes. I need a game plan, and quick.