Thursday, November 12, 2015

I finally had my 2nd DLI today

11/12/15 – After a few delays, I finally had my DLI today. The plan is to wait 4 weeks to have a follow up appointment being it typically takes 4-5 weeks to see any impacts of the DLI. My next appointment is scheduled for December 10th. If at that point there are no signs of GVHD, then another DLI will be scheduled. If there are signs of GVHD, then the GVHD will be treated. Once GVHD has successfully been treated then another DLI will be scheduled. This pretty much an ongoing process that will be followed until my immune system and my body come to terms with each other. It will probably take a long while before I get there. In the meantime, the hope is that my agitated immune system will be able to fight out any new MCL that comes its way. I sure know this is confusing stuff. Dr. Rowley does the best he can to explain everything to my wife and I. At the end of the day I have totally trust in him and his team.

Along with our busy DLI Day, today we handed in all our paper work to the oncology team to appeal denials from my insurance company (Aetna) and the drug company (Bristol-Myers Squibb) for a PD-1 drug called Opdivo (nivolumab). Our hope is that I finally get approved and that we add it to our arsenal of treatment options. We have certainly heard great things about this drug. 

“For God shows no partiality.”
Romans 2:11

More to come…

Friday, November 6, 2015

More Obstacles Present Themselves

11/6/15 – My DLI has been rescheduled for Monday, November 9th. Unfortunately I am running a high fever (102ish). I also have a sore throat and cough. If I cannot get well it is very likely that my DLI will need to be delayed yet again. 
Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.
James 1:12

More to come…

Monday, October 26, 2015

DLI Put On Hold

10/26/15 – Today I went to The John Theurer Cancer Center at Hackensack University Medical Center for my DLI and believe it or not we were not able to go forward with it. I have had an eye irritation over the past week and apparently dry eye is a possible symptom of GVHD. Although it is not a strong enough reaction to know it is definitely GVHD, Dr. Rowley decided it would be best to wait and see what develops over the next week. I innocently asked “what’s the harm if I had the DLI even though there may be a GVHD response developing?” Dr. Rowley’s answer was extremely “eye” opening. He said “its like throwing gasoline on a fire.” All I can say is YIKES!!! I guess it is an excellent idea to wait and see if a rash or any other GVHD symptoms show up over the next week.

I was able to schedule an appointment with an Ophthalmologist. After a thorough eye examination is was found that I had a slight case of dry eye in addition an eye irritation. I was prescribed an eye salve that should address the irritation and some eye drops that should relieve any burning and itching I have in my eyes.

We have rescheduled an appointment at the Cancer Center for Monday, November 2nd. If GVHD does not make a stronger appearance at that point we will then go forward with the DLI. In addition I have a follow-up with the Ophthalmologist on Tuesday, November 2nd.

So it is back to waiting and watching… Saying this, I am feeling great and thrilled to be headed in the right direction. I am so blessed to have such great family and friends who have been so very supportive and who have provided their non-stop prayers for me to get well.

And whatever you ask in prayer, you will receive, if you have faith.”
Matthew 21:22

More to come…

Tuesday, October 13, 2015

Remission Accomplished!!! … Again!!!!

10/13/15 – On December 12th 2008 I reported that I had achieved remission. On October 28th 2013 I again reported that I had achieved remission. Today, October 13th 2015, after meeting with Dr. Goy, I am again happy to report that I am in remission from my Mantle Cell Lymphoma.  All I can say to this is: REMISSION ACCOMPLISHED!!!! …. AGAIN!!!!

Will this third time be a charm for me? I certainly hope so. One way to help ensure that I stay in remission would be to make sure my immune system is strong enough to fight off disease. At this point in time it is not believed that my immune system is strong enough. This is where Graft Versus Host Disease (GVHD) comes into play. GVHD is the evidence we are looking for to show that my immune system has the ability to ward off any and all outside illnesses, infections, diseases, etc... Unfortunately since my stem cell transplant, back on November of 2013, I have never developed any sign of GVHD. We again tried to force GVHD by having a DLI on August 3rd but that too appears to have failed in getting any GVHD. Our current plan of attack is to attempt to bring on GVHD by having another DLI on October 26th. GVHD reveals itself in the form of a rash. As strange as it may sound we are praying for me to get a rash.

During my appointment with Dr. Goy today he mentioned that he will also be looking give PD-1 another try. It seems that it is starting to be used and be more accepted as a treatment for Mantle Cell Lymphoma. He feels more confident that he can get me in a trial/study as well as getting it approved through insurance. If this does happen I will be getting PD-1 treatments once every two weeks… more to come on this.

Up next for me… I have a follow-up/pre-DLI appointment with Dr. Rowley, my transplant doctor, on Thursday, October 22nd. The DLI will follow on October 26th.

So… it sure feels like everything is headed in a very positive direction for me. I truly feel that Jesus has wrapped his healing arms around me and he just won’t let go.
Here is a YouTube link to great song by Matt Redman called “You Never Let Go”. Enjoy.

Then they cried to the LORD in their trouble, and he saved them from their distress.
He sent forth his word and healed them; he rescued them from the grave.
Let them give thanks to the LORD for his unfailing love and his wonderful deeds for men.
Psalm 107:19-21

More to come…

Friday, October 2, 2015

Initial PET Scan Results Looking Good

10/2/15 – On Thursday, October I had a PET scan. I followed up with the Cancer Center on Friday, October 1st. Although I know Dr. Goy is not available until October 13th I really wanted to get an idea of what the results were so I called the Cancer Center and spoke to one for the nurses from the Lymphoma Team. The nurse was able to tell me that there was a great improvement from my last PET back in July but was unable to get into the specifics. She would really need Dr. Goy to interpret the results. I passed on the good news to my nurse practitioner from the Transplant Team. I heard back from her with a more details about the scans. This included the following:

Reviewed the results and I was much more impressed with what I read than what you wrote. There was RESOLUTION of FDG uptake in the mediastinum (chest) and the soft tissue mass was decreased in size… Previously in the chest the avidity had an SUV of 18.1 then 7.7 now NOT MEASURED AS ACTIVE, resolvedthis is AWESOME!!!!!!!!

This sure is sounding like very good news. When I meet with Dr. Goy on October 13th I will learn more about what this all means.

I still have not had any signs of a GVHD rash. If this continues I will have a 2nd DLI the week of October 26.

Over all it is looking like I am headed in the right direction. God is Good! God is Great!

Worship the LORD your God, and his blessing will be on your food and water. I will take away sickness from among you
Exodus 23:25

More to come…

Wednesday, September 23, 2015

Waiting is the Hardest Part

9/23/15 – On Tuesday, September 22nd 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 1st with a follow up with Dr. Goy on October 8th. 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!

What then shall we say to this? If God is for us, who can be against us?
Romans 8:31

More to come…

Tuesday, September 15, 2015

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…