Meeting the new doctor

Today was an informative day. Bev and I went to Presbyterian/St. Luke's to the Rocky Mountain Cancer Center in Denver. We met my new doctor, Jeff Matous. He spent a fair amount of time questioning me and looking over the file that Dr. Myint had sent him. He was in essence giving us a second opinion as to whether to proceed with a transplant. He gave us a brief synopsis of lymphoma as follows:
There are two kinds of Non Hodgkin's lymphoma. Tcell or Bcell. There are a few dozen kinds of Bcell, the most common being DLBCL - diffuse large Bcell NHL. Second most common is FCC - follicular center cell NHL. DLBCL can arise on its' own or develop from a previous follicular which is called "transformed". This is what has happened to me. In many patients, they see both follicular and diffuse large Bcell. Ft. Collins thought originally that I had follicular and gave me rituxen, because follicular is less aggressive. He said that with follicular, they follow the patient, that it is not curable but highly treatable, and that they manage it through life. More aggressive is both follicular large cell and DLBCL. They treat this with RCHOP which is the 8 rounds of chemo that I had. They treat this with curative intent, the goal being complete remission of DCBCL.
After RCHOP, if I was clear, they would monitor and if relapse occurred they would do high dose chemo and autologous stem cell transplant. Since my PET scan was still abnormal, he doesn't know if what remains is follicular or large Bcell. Surgery is out due to location of tumor and he said that some might remain in other locations. So what's next?
If there was a fair amount of NHL left they would do a 2ND round of chemo using "RICE" then go to the transplant. Luckily I have minimal NHL left so he thinks we should go straight to transplant. We asked the difference between bone marrow and stem cell transplant. He said that the stem cells most of the time reside in the bone marrow so they interchange the words often. In my case, I can donate my own stem cells out of my bone marrow instead of having to get a donor. This is a safer and somewhat easier procedure than using a donor.
So our typical next steps are:
1. Pre-transplant testing. They will test my heart, lungs, kidneys and all other organs to make sure I will be able to withstand the upcoming treatment. This testing will start this Thursday. They will also do a bone marrow biopsy. If all goes well, I will proceed to step two.
2. Collecting cells. To get the stem cells to come out of the bone marrow, they will give me 2 days of chemo with cytoxen and UP-16, followed by a neulasta shot. This will kill more cells but bring out the stem cells out of the marrow to help boost my immune system. 17 days later they will collect these stem cells by hooking me up to a machine that separates the blood into platelets, stem cells, and other items. They will harvest the stem cells, test them for cleanliness, then freeze them.
3. High dose Chemotherapy. I will receive 4 drugs they call "BEAM" for 6 days in a row. The coordinator said the B drug with make me act drunk and even nauseous and have a headache the next day like a hangover. The E and A will not have much side effects but then the M will make me nauseous in a few days afterward. Then they will wait for two days and start infusing my stem cells into my blood stream. I will have zero white blood count which is the most dangerous part because I would not be able to fight any infection. As the stem cells take hold, my white blood counts will go up. They call the day I receive the stem cells, day zero. It will become my second birthday. All days afterward will be based on day zero.
The best thing I found out is that all of this can be done as out patient instead of being in the hospital. That made me very happy. Jeff, as he wants to be called, said he has done this for 19 years as outpatient, about 200 procedures a year. Of course if something were to go wrong or I developed an infection, then they would hospitalize me. They said that might happen in about 25% of the cases. As long as I follow the plan and procedures, I should be okay. Jeff has four other partners all of who trained in Seattle where transplants were first done. I feel confident in his knowledge and he was very personable.
Because we live 58 miles from the hospital, insurance will assist with a per Diem amount to cover food, lodging and travel. Their cutoff was 50 miles, so we lucked out. Besides the initial testing of my body parts, we are now trying to plan with the insurance company where we might stay. Also, we have contacted work as to qualifying for short term disability as I will be out for 60 or more days. Vicki the coordinator is going to send us a tentative schedule but we have not received that yet. But the rough plan is to have the preliminary work done and start the high dose chemo Thanksgiving week. If all goes well I might be able to come home around December 21. Just in time for Christmas, which is my Christmas wish, to be alive and home this Christmas.
We will keep you updated as to the schedule once it becomes more clear. Thank you so very much for all of your support. God Bless You!