Thursday, April 28, 2016

Crazy Times

4/28/16 – I met with Dr. Rowley today and learned a lot more about my situation with MDS. It all points to chromosome 20. Basically the bone marrow biopsies are showing a 20q abnormality. The crazy thing is that I am feeling better than I have in a very long time.

With that said, as long as my counts stay good we will take a wait and see approach and hold off doing anything for about 6 months. At that point I will have another bone marrow biopsy. Of course if my counts drop before then (which can be a sign that the MDS is progressing) I will have a bone marrow biopsy sooner. If this does progress it seems that the best treatment would be for me to have another stem cell transplant… but let’s not get too far ahead of ourselves. For all I know I could have a clean bone marrow biopsy in 6 months.

In discussing why this 20q abnormality is happening to me one thing that has been speculated is that it could be donor derived. This doesn’t mean my donor had MDS. It means that if my donor had chemo therapy that there would be a good possibility that he would have developed MDS afterwards. How crazy is that???

Another thing that has come up over the last two weeks is that I have an itchy rash on my neck, arms, chest and back. It is not a bad enough to be considered GVHD but it is bad enough to be a reason to delay treating me with PD-1 (Opdivo). Apparently PD-1 and GVHD do not play nice together. If there is the slightest chance that my rash is GVHD then it is better to play it safe than sorry.

So… I think my word of the day is “Crazy”. I guess it’s fair to say that things are never boring with me.

I have a follow up with Dr. Rowley in two weeks on Friday, May 13th. Friday the 13th??? 
I’m sure nothing crazy could happen…. Right?

Check out this song by Jars of Clay called “Crazy Times”

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.
Philippians 4:7

More to come…

Wednesday, April 20, 2016

Bone Marrow Biopsy Results Are In

4/20/16 – Over that last few weeks my counts have been awesome. My platelets have gone from 97 to 123 to 126 to 137. I couldn’t have asked for more. With everything trending towards good news the thinking of those a heck of a lot smarter than me was that I should have nothing to worry about with my latest bone marrow biopsy (taken on April 8th). 

Well the one wild card is that this is me and when have I ever followed what was supposed to happen?

I heard from Dr. Rowley today via a phone call and I was told that the test results again showed positive for MDS (Myelodysplastic syndrome). This certainly was not the news I wanted to hear. I did not get many details. I’m sure we will get into this when we meet face to face at my next check up on Thursday, April 28th. Dr. Rowley did say that with my counts being so good that there was no reason to rush into anything and if my counts stayed good we could hold off doing anything for about 3 to 6 months… and at that time I will have another bone marrow biopsy to see where things stand.

So now I just need to keep positive, have faith and keep the hope.

Here is a YouTube link to a great song by Rend Collective called “Joy of the Lord”. It is a wonderful song for keeping my focus on what matters.

Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
1 Thessalonians 5:16-18

More to come…

Saturday, March 26, 2016

A Very Good Friday

3/26/16 – Yesterday was one of the holiest days of the year. Good Friday is a day commemorating the crucifixion of Jesus Christ and his death at Calvary. As Christians we know that Jesus’ death is not an end… but a beginning. Good Friday is followed by Christ’s resurrection and us being delivered from sin.

It is very interesting to me that on this day by counts decided to take a turn for the “Good”. My platelets leaped to 91, my white blood cell returned to normal and my red blood cell and hemoglobin are on the rise. All of this with no treatments. Certainly a Very Good Friday for me.

I will have a follow up count check next Friday on April 1st.

I would like to take this posting as an opportunity to wish everyone a Happy and Healthy Easter.

Here is a YouTube link to a wonderful song called “Jesus Messiah” by Chris Tomlin that is truly in the Easter spirit. Enjoy!

He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: “The Son of Man must be delivered over to the hands of sinners, be crucified and on the third day be raised again.”
Luke 24:6-7

More to come…

Monday, March 21, 2016

Each day seems to bring something new

3/21/16 – The last few updates to my blog have been difficult because it seems each day brings something new and it is hard to carry one topic into another. My blood counts have taken a new direction of late. My platelets are actually gradually increasing. I was at 67 today. The issue is my white blood cell, red blood cell and hemoglobin have been dropping. This is causing me to be weak and tired most of the time. I am able to keep myself productive… as long as I keep moving. The problem is when I am not active the tiredness takes over and I have to fight myself from falling asleep. This also causes my legs to be very weak.

We have decided to not take any action at this point and simply allow this to fester to see what happens over the next few weeks.

We are planning to have another bone marrow biopsy the first week of April to see if the MDS from the last test is something to be concerned with… or not.

With today’s update along with PD-1, ITP and anything else I may have left out… I have many balls in the air. I just need to keep hopeful, faithful and positive.

the LORD delights in those who fear him, who put their hope in his unfailing love.
Psalm 147:11

More to come…

Tuesday, March 8, 2016

A Quick MDS Update

3/8/16 – With all the twists and turns of my life it seems like plans fall through more often than not. Since I was at the cancer center on Friday I have been feeling feverish and achy. After meeting with the medical staff from the Transplant team it ends up that I most likely have the flu or rhinovirus.

Dr. Rowley did stop in and he said that now that he has had a couple of days to think about my situation that it would be his preference to put off me meeting with the Leukemia doctors for a while. Instead, he would like to redo the bone marrow biopsy in another 5 weeks. Also, just because I am not meeting with the Leukemia doctors doesn’t mean that they are not aware of me and my case. Dr. Rowley plans to review my case with them this week.

So what’s next? We will continue to treat my ITP. I will get IVIG and an NPlate shot on Friday, March 11th. Oh… by the way my platelets were 50 today, which is fantastic.
Also, we are going to start looking at when we can begin treating me with PD-1 (Opdivo). It would seem that the very positive results being seen with this is cause for me to start receiving it sooner versus later.

It comes down to trusting that my doctors know what they are doing,… and then of course there is me putting this all in God’s hands.

And those who know Your Name put their trust in You, for You, O Lord, have not forsaken those who seek You.
Psalm 9:10  

More to come…

Friday, March 4, 2016

Myelodysplastic Syndrome (MDS)

3/4/16 – Over the almost 8 years I have been on this MCL journey I have had and many discussions with medical people. There are times the discussions are short and sweet… There are times when the discussions are long and detailed and informative… and then there are times when you are getting a long explanation on how good everything is, knowing full well that something else is coming. You can just tell that your medical friend is trying to come up with the correct words that follow the “BUT”.

Well this kind of happened with me today as we reviewed the results of my bone marrow biopsy. I heard that there were no signs of lymphoma, that my platelet production was good. I even was told that 19 of my chromosomes were normal… which was followed by BUT we need to discuss the 20th chromosome. I was then told that this chromosome is showing signs of a per-leukemia disorder known as Myelodysplastic syndrome (MDS).

Here is some information I found on MDS:

Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder”. MDS is primarily a disease of the elderly (most patients are older than age 65), but MDS can affect younger patients as well. To help you better understand MDS, it might be helpful to first consider some basics about bone marrow and blood. The bone marrow functions as a factory that manufactures three kinds of blood cells: red blood cells, white blood cells, and platelets. Healthy bone marrow produces immature blood cells — called stem cells, progenitor cells, or blasts — that normally develop into mature, fully functional red blood cells, white blood cells, and platelets. In MDS, these stem cells may not mature and may accumulate in the bone marrow or they may have a shortened life span, resulting in fewer than normal mature blood cells in the circulation.

Radiation and chemotherapy for cancer are among the known triggers for the development of MDS. Patients who take chemotherapy drugs or who receive radiation therapy for potentially curable cancers, such as breast or testicular cancers, Hodgkin’s disease and non-Hodgkin’s lymphoma, are at risk of developing MDS for up to 10 years following treatment. MDS that develops after use of cancer chemotherapy or radiation is called “secondary MDS” and is usually associated with multiple chromosome abnormalities in cells in the bone marrow.

In the early stages of MDS patients may experience no symptoms at all. A routine blood test may reveal a reduced red cell count, or low hematocrit, sometimes along with reduced white cell and/or reduced platelet counts. On occasion, the white cell and platelet counts may be low while the hematocrit remains normal. However, some patients, particularly those with blood cell counts well below normal, experience definite symptoms.

It is very interesting to learn a cause of MDS is having had chemotherapy. In addition it does make me wonder if the MDS is the reason I really never fully responded to all the treatments for ITP. It certainly seems to impact platelet counts.

As a result of today’s new findings I will be meeting with leukemia doctors at The John Theurer Cancer Center at Hackensack University Medical Center on Monday, March 7th. In addition I will be back on Tuesday, March 8th for a possible IVIG and platelets being I still need to be treated for my ITP.

So now what? Sure, I could feel sorry for myself and say “Why Me?” But saying that, Why not me? I am a strong positive faithful person. I just know I can get through this with the love and grace of God. I am committed to use this new bump in my road as an opportunity worship and praise God… which does make me think of the many great songs on praising God through adversity. Here a link to an awesome live version of Casting Crowns-"Praise You In This Storm". Enjoy!

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…

Saturday, February 27, 2016

Another Quick Platelet Update

2/27/16 – I must say this process of figuring out what’s up with my platelets is pretty slow moving. My platelets had continued to trend down in recent weeks but now all of a sudden they jumped to 46. No one really can explain it at this point other than it could have something to do with my weekly IVIG’s and NPlate Shots.I'm sure that in time we will get to the bottom of this.

As a precautionary thing, I had a Bone Marrow Biopsy yesterday. Hopefully it will come back clear but it may shed some light on things and even show if there are any other under lying issues that may be driving my counts other than the ITP.

I will be back at the cancer center on Monday, February 29th for another IVIG.

This is back to my need to be patient with the process and trust in God that things will eventually be all resolved.

I would be remiss not to mention just how wonderful all the nurses have been at the John Theurer Cancer Center at Hackensack University Medical Center. They are all compassionate, caring, kind, understanding, friendly and great healers.

When he went ashore he saw a great crowd, and he had compassion on them and healed their sick.
Matthew 14:14

More to come…