Today’s results showed 2 new lesions in my liver and the tumor where i had surgery in my back has gotten larger and is threatening my spinal cord again. Yet, they cant do radiation again so soon. They can put me on the clinical trial, but there is no guarantee that i wont be put on the placebo. My oncologist has suggested perhaps putting me back on irinotechan. This will require permission from a pulmonologist as i had an allergic reaction that affected my lungs and put me on oxygen last time. But it would be the best option….so keeping my fingers crossed.
The past few months have been horrible. While the fall in the shower led them to find the brain swelling, another fall onto a ceramic tile floor caused a vertebrae in my back to break. They arent sure if it the break just from the fall or if there is cancer in there causing the break.
In the meantime they keep trying to start me on a clinical trial and every time somethinng else comes up. Ive had mri after ct scan after ultrasound of just about everything. The
latest was my liver function being too high so they did an ultrasound and found something. This let to an mri which shows i have new cancer in my liver…but it also shows something in my spine. So tomorrow i have another mri of my spine..even though i have had one less than 2 weeks ago, but they think something might be threatening my spinal cord again.
If it is, supposedly i will start radiation again. It seems so strange that it seems like it is constantly something. And i cant start the clinical trial which will give me coverage everywhere like chemo.
Fingers crossed that they can get this under control.
I lost 50 pounds in 6 weeks. Couldn’t eat, couldn’t hold anything down. Then my equilibrium went off. I took a terrible fall in the shower. I couldn’t get comfortable. Finally my family became so concerned that they called my doctor who feared, quite correctly, that my brain had swollen from the last gamma knife procedure. My brain has actually swollen and shifted 8mm to the right. It has caused visual deficits which means I cant see things properly on the left side. My arm and leg also have deficits so walking, driving, etc are all restricted.
The steroids seem to be working to bring down the swelling though. (if not, it means brain surgery in a few weeks to reduce the swelling). I spent the week in the hospital but I am home now. Got home just in time to see my daughter off to her senior prom!
Hope all is well with everyone else!
My brain MRI showed two new very small lesions in the brain (2mms a piece) so I had my second gamma knife radiation yesterday. It seems it was a little easier than the first time. Of course that is probably because the last time I was in the hospital recovering from the spinal surgery as well. It’s a little frightening having 2 new lesions after only 6 weeks. Hopefully they will get me into this new clinical trial and that it will work.
Well I finished all 10 radiation treatments to the spine. It hasn’t been easy. I have absolutely no appetite and when I do eat, I get ill. I finished radiation almost 2 weeks ago now and I still can’t eat. I vomit daily, and the fatigue is pretty tough. I lost 27 pounds in 3 weeks. Not that I don’t have it to lose, I did gain 65 pounds with chemo/steroid treatment so I can spare it. It just increases fatigue significantly when you have no fuel.
A little more on the scary side, 3 nights ago I had a pretty bad headache that went along with some confusion. I thought I was in my bedroom, but I was in my son’s old room. Then I proceeded to figure out how to get to the bathroom to get sick again. The doc says it is all from the radiation and it should go away the more time away from radiation I have.
I had another scan too, and my tumors in my lungs grew slightly by like 4mm each. I will get the results of the brain MRI on Monday to see if the gamma knife worked.
In the meantime the next plan is for a different clinical trial. A drug that is already approved in Europe, but not here yet. The one thing that sucks is that it is in the stage of trial where I might be given a placebo. So I am just going to hope that I get the real drug and that it works for me. They keep mentioning how very slow-moving my cancer is and how good that is. But I can’t help but be a little worried because it went to my brain and my spine. Time for new drugs to make their way down the pipeline and work for me.
The results of the spinal biopsy came in. It was indeed colorectal cancer in my vertebrae. When I asked how it got there she said it could have been there from the beginning, but simply dormant. OR that it recently spread from the pulmonary nodules through the bloodstream to the spine. NO real way to know.
Whatever the story, the docs are confident that they got both spots that were in the brain and that they got most of it in the spine. The intention of the radiation I am beginning next week should stop the rest of the tumor in the spine. They are incredibly confident.
As of now the plan is simply to do the radiation and then readdress the overall situation.
For now I think I am just going to take things one day at a time and face the radiation each day.
My doc at this point thinks that after the radiation it may be simply a time to take a break while monitoring closely.
I’m still recovering. The back surgery was pretty intense and I still am struggling to do every day things. I did manage to work the entire time thus far by organizing courses and assignments online. I will be returning to work next week with some help of a disabilities team who will transport me, carry my things, etc.
It should be interesting. For now, I am resting when I can and working when I can.
Everyone has been relatively surprised at the things I have done. Me, I’ve been frustrated at the things that hold me back. But I will get there a little each day.
7am on day 10 of my hospitalization. There is a possibility that I may go home today. ? I had the spinal surgery and had the gamma knife radiation. Both with some success I might add. That gamma ray thing is really freaky. I woke up a few times and you are just in what seems like a long white box. You start questioning where you actually are. Am I in a test? Am I dreaming? Am I really in the hospital or is this just some sort of weird dream cycle I cannot get out of?
Apparently watching me with the test freaked my boyfriend out. Seeing screws in your girlfriend’s head is somehow easier than dealing with an ileostomy? Who knew?
But I seem to be healing well now. Walking might be nice though. Haven’t even gotten down one hallway yet. Although my guess is that there will be little gremlin like people here to push me again. Yesterday, it was poop. You know, because it is necessary to fill your body with toxic amount of laxatives so that you can have enough bowel movement to clog the city sewers! But hey, what do I know!?
Thank you for all the well-wishes and prayers. I am definitely a believer that we have a group consciousness that can support each other in times of need. So, again, thank you! I will keep everyone updated.