A Good Appointment

9/15/15 – On Thursday, September 10th I received a call from the Transplant Team. They wanted to let me know that my last blood test came back positive for CMV. This is fairly common for people who are on prednisone. They immediately prescribed Valcyte. This is a drug that typically causes blood counts to drop.
What is CMV (cytomegalovirus infection)?Acute cytomegalovirus (CMV) infection is a condition caused by a member of the herpesvirus family.Most people come into contact with CMV in their lifetime. Typically only people with a weakened immune system become ill from CMV infection. Some otherwise healthy people with acute CMV infection develop a mononucleosis-like syndrome. Many people are exposed to CMV early in life but do not realize it because they have no symptoms, or they have mild symptoms that resemble the common cold. People with a compromised immune system can have a more severe form of the disease. CMV is a type of herpes virus. The virus remains in your body for the rest of your life. If your immune system becomes weakened in the future, this virus may have the chance to reactivate, causing symptoms.
On Monday, September 14th my wife had a discussion with my nurse practitioner from the transplant team. She was checking in on how I was doing and wanted to give us a heads up that my counts will probably be low due to the Valcyte and that I most likely will need platelets. Hearing this I voiced my doubts about needing any infusions. I have been feeling so much better that last few days it was hard to believe that I would need anything. At my follow-up appointment on Tuesday, September 15th my blood counts were good and I didn’t need platelets after all. I guess after all the years I have been going through MCL treatments I am able the read my own body.
I continue to get weaned off of the prednisone. I am down to a half a pill per day. I will need to be completely off of prednisone before I move forward with my next DLI which is targeted for the end of September. Of course if I show any signs of GVHD I will not need the DLI.
In my last post I had mentioned that I was denied PD-1. I have had friends and family who have offered to pay for it and fund raise for it. This is a very expensive drug. I did a Google search on the cost of PD-1 and it returned results that has a cost of about $150,000 per year. I really need to get a much better understanding from Dr. Goy on if this is truly something that I need. Especially before friends and family offer to help pay for it. In speaking to my nurse practitioner from transplant it is possible I will not need PD-1 if I am able to get a good GVHD response. The thought being that GVHD will kick off my immune system to start fighting my MCL.
I have a PET scan scheduled for October 1st followed by an appointment with Dr. Goy on October 8th. The PET scan will give us a status on where my MCL stands. I am hoping that I walk away from the appointment with Dr. Goy with a clear picture on what we need to do to get me to remission.
The other health item that requires follow up is my heart. I have been on a heart monitor for about a week now. I will be meeting with the cardiac doctors on October 5th to review the results from the monitor. I am still thinking that my heart is fine and that it had more to do with the medications I am on… but this is just a guess and I am no doctor.
So I still have a few open questions. The good news is that today’s appointment was a good one and I feel like I am getting stronger every day. God is good!
 Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom can be no variation, neither shadow that is cast by turning.James 1:17
More to come…


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