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 1^st.

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!

https://www.youtube.com/watch?v=FwJzTV1uurU

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…

http://mantlecell.blogspot.com/

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…

http://mantlecell.blogspot.com/

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 11^th. 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…

http://mantlecell.blogspot.com/

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 20^th 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:

WHAT IS 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.

WHAT CAUSES MDS?

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.

WHAT ARE THE SYMPTOMS OF MDS?

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 7^th. In addition I will be back on Tuesday, March 8^th 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!

https://www.youtube.com/watch?v=Ype1xE0wzsg

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…

http://mantlecell.blogspot.com/