I've been posting a lot to facebook incrementally, but not really keeping up a cohesive story in my blog, which I really wanted to do. Since I have about 3 weeks worth of stuff to write about I'm going to break it up into a couple of different posts.
My last stay at Karmanos for infection ended on May 8, and I haven't spiked a fever since being discharged (as of June 1)
My consultation at UofM was at 8am on May 10. We left the house just before 7 for the drive over. It wasn't too bad of a commute, long but not awful.
The leukemia clinic is located in the newly renovated Mott Children's Hospital of the UofM Hospital campus. The facilities are very nice and the inpatient area is in an area next to and the next floor up from the clinic.
Meeting with Dr. Bixby - Acute Leukemia Team
Our first meeting of the day was with a Physician Assistant named Heather, who was extremely nice and knowledgeable. She went through my medical history, her understanding of my current situation and recent diagnosis/treatment, etc. We let her know that we weren't just there for a second opinion but we also had the intent to transfer all care to UofM from Karmanos. After talking with her a while she left and came back with Dr. Bixby.
Dr. Bixby was the type of guy who, when he walks in a room you just have a good feeling about him. He had a great bedside manner, was knowledgeable about the disease and took the grim prognosis seriously while still having positive attitude. He seems like he is the type of doctor to advocate for his patients. He speaks slowly and explains everything in both medical terms and normal people terms. He's just someone that you feel you want to be on your team.
Dr. Bixby had a great understanding of my case so far and where we were at. He also had developed a plan moving forward. Today was the 10th, and all of my counts were still low. He wanted to wait until the 16th for them to come up, and then Heather would perform a repeat biopsy to determine whether the induction phase chemo worked. After the biopsy I would come back on the 25th for an appointment with him to hear the results, and he said to pack a bag that day because if the leukemia was in remission I would be starting the first round of consolidation chemo over the weekend.
In addition to this, he wanted me to get an ultrasound on both of my arms before leaving that day because of how swollen they were from the reaction to the picc and mid lines from Karmanos. He also was going to have someone from his team contact interventional radiology to set me up with an appointment to have my port evaluated and fixed/replaced as necessary.
Meeting with Dr. Riwes - Transplant Team
After our meeting with Dr. Bixby we had some time before my appointment with Dr. Riwes from the Transplant team, so I got the arm ultrasound done, which came back with no clots.
When we met with Dr. Riwes it seemed like her entire job was to convince us to decide on our own that I didn't want a transplant. She gave us details on the process of actually receiving a transplant as well as the statistics associated with receiving one.
She told us that the process and recovery itself takes about a year overall. First you have to go through a battery of tests to make sure you are healthy enough to receive the transplant, this includes that the leukemia has to be in remission at the time of transplant. The main catch here for me is my pre-existing cancer, but more on that later. You also have to document that you have an adequate support system in place. After transplant you can't drive for 3 months, if you don't live within a certain radius of the hospital you have to move (or get a temporary place in Ann Arbor), you're basically in quarantine and for a certain period of time you have to have a 24/7 care giver. The caregiver has to have multiple alternates because if one of them so much as coughs funny they can't be in the same room anymore.
If you pass all of the tests and they find a donor, then you start the process, which begins with really intense chemotherapy in order to clean out your bone marrow and weaken your immune system. After the transplant they give you further medicine to suppress your immune system. The reason that you need to suppress the immune system is so that your immune system doesn't attack the new cells but also so that the donor's immune system doesn't attack your body, which can cause something called Graft Versus Host Disease (GVHD).
She also gave us the statistics about transplant outcomes. She said that about 20% of people don't survive the transplant itself. For my specific type of leukemia there is also a high recurrence rate even after transplant. Then there are the risks of GVHD, which can cause severe and chronic issues with your skin, respiratory system, digestive system, etc. and also the risks associated with my neuroendocrine carcinoma. There is not really any research or documentation on what complications the transplant could cause for that, and if the high grade tumors did decide to start growing again within this process I would be unable to seek treatment for them.
After all of this, Dr. Riwes said that the decision to transplant or not is generally made based on whether the doctor's thought they would be doing more good than harm. She said that she believed in my case it would be doing more harm than good, but that she was still going to present my case to the transplant board to get an overall consensus.
Overall a very good first experience with UofM and we were glad to have transferred my care to them.
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