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/

DLI Follow-up Appointment

8/31/15 – I met with Dr. Scott Rowley today to review where I am with the Stem Cell Transplant, the DLI from August 3^rd and the recent challenges I have run into. He was very thorough and answered a lot of questions.

For one thing he is thinking that my DLI was not necessarily the driver for the GVHD rash that appeared. Typically a DLI takes longer to bring on GVHD. It is very possible that the rash (and other GVHD symptoms) was coincidental. The DLI will likely start showing its signs in a week or two. In addition there is a plan for me to have a second DLI at the end of September once I am weaned off of the prednisone.

While Dr. Rowley was meeting with me he had a phone conversation with one of my cardiac doctors. The feeling of the cardiac team is that my syncope/passing out/heart issues are not due to a bad heart. They seem to be related to certain events (para influenza, GVHD, etc…). There is no doubt that I have been hit a number of new medications over the past two weeks. There is certainly a level of trial and error that comes into play being everyone seems to have a unique response.  Dr. Rowley did make it clear that GVHD is like playing with fire… and I think I can have the burns to show for it.

As far as my blood counts go, my platelets were on the low side. I have an appointment on Thursday, September 3^rd to check them again and possibly receive a platelet infusion. All my other blood counts were in pretty good shape.

Since my release from the hospital last week we have been constantly checking my heart rate and blood pressure. For the most part everything has been looking good. The one thing that is a bit of a concern is my ongoing lightheadedness. Sure, it could have to do with my fall from passing out and hitting my head. It could also be the mix of my medications. Maybe it is just me recovering from two unplanned weeks in the hospital.

I have a follow up appointment with Dr. Rowley on Tuesday, September 8^th.

So, yeah… with my chemo treatments complete you would think that everything would start moving back to normal, but with DLI now the primary means to fight my MCL things seem to be getting more complicated. There is a high level of enthusiasm with this approach from my doctors. This makes me and my family very hopeful.

Surely there is a future, and your hope will not be cut off.

Proverbs 23:18

More to come…

http://mantlecell.blogspot.com/

So what exactly is going on with me?

8/28/15 – It has certainly been a couple of interesting weeks for me... Fevers, GVHD sighting, low heart rate, etc…

My new cardiology doctors are looking to monitor my heart. I guess with a history of passing out it may be smart to see if these episodes are related in someway. 

Also, it would be great if all my doctors were on the same page but it may take some time to get there. There are just still so many questions:

Are all the mix of medications causing issues?

Is the GVHD causing the wows?

How about my MCL being fought by my immune system (brought on my GVHD)?

Do I need more research on my new heart ailments?

Do I need a pace maker to give my heart an extra boost when it is needed?

There is no doubt that I have more questions than answers.

It was great to get released from the hospital yesterday. I will be back at the cancer center on Monday, August 31^st  to meet with the transplant team to follow-up on my DLI that I received on August 3rd. While I am at cancer center it is likely I will also meet with oncology to follow-up on my recent hospital stay.

But to you who fear My Name The Sun of Righteousness shall arise With healing in His wings; And you shall go out And grow fat like stall-fed calves

Malachi 4:2

More to come…

http://mantlecell.blogspot.com/

Quick Health Update - Back in the hospital

8/26/15 – As a follow-up to my hospital stay last week… I had an appointment at the Cancer Center on Monday, August 24^th. I am sure it wouldn't surprise you that I would encounter a challenge or two. With this visit my heart rate ran a low 30. At one point I actually had an episode where I passed out in the hospital bathroom. I had a team of doctors work on me, perform CPR, pound on my chest and get me back to consciousness. It would seem that it was most likely due to a too high dosage of the steroids I am on called prednisone that is for managing GVHD. It does appear that everything is starting to stabilize. I am hoping that I will be discharged over the next few days.

Lord my God, I called to you for help, and you healed me.

Psalm 30:2

More to come…

http://mantlecell.blogspot.com/

Crossing the line into GVHD (Graft vs Host Disease)

8/20/15 – Looking at the events of the past week for me it shows just how crazy a ride this adventure could be. With my last post I had mentioned that I have managed to avoid any hospital stays… well that has changed.

On Wednesday, August 12^th I was in the ER with fevers in the 102 range. I was given the normal work up, where they took blood cultures etc… I was given an antibiotic and after a few hours my temp was gone, my blood counts were normal and initial blood cultures were clear… so I was sent home.

I had a follow up appointment at the Cancer Center on the following day; I was given a CT scan and was told that they show GREAT improvement of my MCL. But there was nothing that caused concern of the fevers.

On the morning of Friday, August 14^th I was again running a fever and headed over to the Cancer Center. We reviewed all my tests. Being there were no signs of infection with my blood cultures,  it was decided that this was most likely something viral. If fevers did return I should take Tylenol. Any Virus will simply run its course.

Well... it is just never that easy.

On Saturday, August 15^th at around 10PM I had a fever of 104.3. Knowing full well that this is more than viral… I ended up in the ER again. The ER drew blood, put me on antibiotics, and gave me Tylenol. I was eventually admitted into the hospital by the morning of Sunday, August 16^th.

While in the hospital my fevers were treated with antibiotics, Tylenol and cooling techniques (chilling blanket and being packed in ice) but it seems that each day I still hit a fever of over 102.5.  

If you think about it… the Tylenol and cooling techniques simply mask what is really going on. In my case I was being given antibiotics that we not working… could it be that I was being treated for the wrong thing???

Each day I was visited by my doctors from Oncology, Infectious Disease and Transplant. I would get my normal checkup along with some very similar questions:

Do you have a rash?

Do you have diarrhea?

Is your mouth dry?

Are you experiencing any indigestion?

It was as if someone from above wanted to give assistance in solving this mystery, on Wednesday, August 19^th all of a sudden I had a rash on my arms and legs, I had dry mouth, I had diarrhea and I was starting to feel some indigestion.

It was now clear to my doctors that I had Graft vs Host Disease. By adding steroids to my IV regiment my fevers were soon gone. If all goes well I may be released as soon as tomorrow. That would make me very happy. I am ready to go home.

I would be completely negligent if I didn't say THANK YOU to my wife who has been by my side every second of this most recent episode. I am a very lucky man to have someone who loves me so much. I truly love my wife of almost 31 years.

.

Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.

Matthew 7:7

More to come…

http://mantlecell.blogspot.com/