Waiting is the Hardest Part

9/23/15 – On Tuesday, September 22^nd I had another great appointment with our nurse practitioner from the transplant team. My CMV is gone and I have been taken off of Valcyte.

Also, I have been taken off of prednisone. Now that I am off of prednisone we are in a “wait and see” mode where we are looking for signs of GVHD to appear. As soon as I see signs of it I am to take a picture of the rash and send it to our nurse practitioner. If we do not see signs of GVHS we will then move forward with a DLI in the late September/early October time frame.

Also, I am now off the heart monitor. I have a follow up with my heart doctors on October 5th.

Other than that I have a PET scan scheduled on October 1^st with a follow up with Dr. Goy on October 8^th. Understanding where I stand with my MCL is critical for the go forward plan. There is certainly more to come on this. I wish I could fast forward through the next week and a half. This is where it is best for me to be patient. I’ll just make sure I take this time to enjoy life and not worry. It’s back to having Faith, Hope and Belief in God.

Here is a link to a great song by Chris Tomlin called “On Our Side”. It stresses how God is truly on our side. Enjoy!

https://www.youtube.com/watch?v=AsomneOrQsE

What then shall we say to this? If God is for us, who can be against us?

Romans 8:31

More to come…

http://mantlecell.blogspot.com/

A Good Appointment

9/15/15 – On Thursday, September 10^th 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 14^th 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 15^th 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 5^th 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…

http://mantlecell.blogspot.com/

Looking for answers

9/9/15 – I had another follow up visit with the Transplant Team on Tuesday, September 8^th. 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 9^th. 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 Jesus

Philippians 4:6-7

More to come…

http://mantlecell.blogspot.com/