Here is an update on my current condition and what is in store for me in the next couple of months:
I had the "last" of my tests done at the end of February. The tests showed that I still have "activity" in my left arm pit and middle of my chest. I had a bad feeling about this since my left lymph in my arm pit swelled after the finally chemo and has been painful since. The activity or brightness of the lymphs shrank a lot since my last test, except for the one in my left arm pit which is bigger.
This left me with two options: radiation or a bone marrow transplant. I met with specialist from both radiation and the bone marrow department over the last month. Because my symptoms (itching, weight loss, and night sweats) have come back so fast all the doctors thought the bone marrow transplant was the best way to go.
I decided to go with the bone marrow transplant option for my follow up treatment. This was not an easy decision because it very invasive and really expensive. It looks like it is the best option for me. It has the best "quality" of life options after the initial treatments. The ration option would have been "full Nodal" which is basically radiation everywhere. There would have been a very good chance of other issues down the line. There is less likelihood of far ranging issues with the BMT, though putting that much toxin in your body can still have side effects.
The Details: The timeline is still a little fuzzy but here is what my next 3 months or so looks like. I had surgery on March 30th to put in a 3 valve port next to my heart. It looks like tentacles coming out of my chest. It's not terribly painful, just a little uncomfortable.
I will start the first round of new chemo on Wednesday, April 6th. This new round is called ICE. It is a fairly strong dose of Chemo. It will last three days. The first day will be about 3 hours long. The second day is 4-6 hours long with them giving me a pack of chemo that will enter my body for 24hours. The last day is 3 hours long. Then I have two weeks off. They then do another round of ICE. After two weeks I will have to get another set of PET and CT scans and probably a bone marrow biopsy. They are looking for some sort of remission. If this happens than we move to the prep for stem cell collection.
With the stem cell collection, the doctors inject me with a variety of drugs to help boost my stem cell production and increase the number of stem cells in the blood. This takes 10-14 days. After there are enough stems cells they will hook me up to a machine that cycles out my blood, collects the stem cells and cycles the blood back in to my body. This can take several days to get enough stem cells. They want to collect double the normal amount in case I have to do a second BMT.
A day or so after that I will start the MAJOR chemo process. This is called BEAM. They basically nuke my body. This takes 6 days full days in the hospital. After that I get a day off, after which they put the stem cells back into my body. For the next 3-4 weeks I have to be in the hospital as my white blood cells and bone marrow recover.
I will have to get another PET and CT scan after that. If the first round has not done the trick they will wait 4 weeks and repeat the BEAM and Stem cell transplant process The doctors will also radiate my large lymph under my arm as a precaution.
It's going to be a long process but I'm very happy to start and get done with this next phase. Thank you for your support and emails.