Looking for answers

9/9/15 – I had another follow up visit with the Transplant Team on Tuesday, September 8th. In reviewing my overall health situation there are still questions on what the plan is to get me 100% well.
Since my relapse back in March I have had 4 Chemotherapy cycles on RBAC. Although my scans show that this has been effective with greatly reducing my MCL, some disease still exists. There are currently no plans for any additional RBAC cycles. 
Also, I have had one DLI treatment back in early August. There is a plan for me to have a second DLI in the late September/early October time frame. Certainly boosting my immune system to where it fights MCL on its own is awesome. It is not clear that this will get me to the goal of remission. I guess I will learn more over the next few weeks from the Transplant and Oncology teams.
There is a new drug called PD1 that has been mentioned as something that shows great promise. Unfortunately this has been denied by insurance. I have worked with the Cancer Center to request being a hardship case with Bristol-Myers Squibb but this has been denied also. It would seem that PD1 has been effective with a number of cancers but there is not a lot of information on how it will work on MCL. Based on this it is looking like this potentially effective treatment drug will not be available to me within the near future. I don’t know, although these types of medicines come with ridiculously high costs maybe I can look into how much it costs and see if I can come up with money to pay for it on my own.
Besides my MCL, I am still working with the cardiologist team. I will be getting a heart monitor on Wednesday, September 9th. In my opinion this is more precautionary… but it is better to be safe than sorry. There has been some thinking that the location of my MCL tumor may be the cause of my syncope/passing out issues.  If this is the case it adds to me looking to get to a remission sooner vs later. 
So as you can see there are plenty of open questions that I would love to get to the bottom to. Over the next couple of weeks I expect that I will have a much better understanding of the collaborated plan that will be in place with the medical teams of oncology, transplant and cardio.
I have a follow-up visit with transplant next week, a follow up visit with oncology the following week and I will be scheduling a follow-up with the cardiologist team after I spend some time on the heart monitor. With this I have great hopes that I start getting answers to my questions. Ultimately, I am looking to hear how I get a full remission.  
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ JesusPhilippians 4:6-7
More to come…


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