Wednesday, June 22, 2016

School's Out

6/22/16 – WOW… it’s like I am a school kid starting summer break. I met with Dr. Goy today with the expectation that I would be starting PD-1 (Opdivo) today. We started with reviewing the results of my PET scan (yes, I had a PET on 6/20 in preparation for beginning PD-1). Dr. Goy happily reported that all was clear. He then said “you have been through a lot and now you are doing so well. I think you deserve a break.” He then proceeded to tell me that he wasn’t going to start me on PD-1 today. He wrote a script for another PET scan in 6 months… at that point we will see how I am doing.

In truth,  I am a little relieved. If my scans are clear and I am doing well, why introduce a new drug when we are unsure on how I would respond to it. I would rather take a break and enjoy my good health. So, I am really happy with this decision.

My next PET scan is scheduled for December 19th. I also have a bone marrow biopsy schedule for September. This is to follow up on the MDS… but I am not even thinking about that at this point. I have an entire summer in front of me to enjoy.

In celebration of my good news and time off, here is a link to the Rock N Roll classic “School's Out” by Alice Cooper. Enjoy!!!

Return to your rest, my soul, for the Lord has been good to you.
Psalm 116:7

More to come…

Tuesday, May 31, 2016

All Quiet on the Health Front

5/31/16 – It’s been about a month since my last post and not much has changed for me. My blood counts continue to be great… one may even say that they are normal. As far as it goes with my most recent challenges, we will revisit my MDS in September when I will have another bone marrow biopsy. Also, I will be scanned in August to hopefully see that I am still in remission with MCL.

In the spirit of “life goes on”… today I received a number of vaccinations - Diphtheria, Tetanus, and Pertussis as part of the DTap vaccine. In addition I received Hib (Haemophilus influenza type b) Hepatitis B, Polio, and Pneumococcal Disease. Vaccination wise I am now on par with a 1 ½ year old.

On the exciting side of things, I have an appointment with Dr. Goy on June 9th to discuss starting my PD-1 (Opdivo) treatments. For someone with lymphoma this is really pretty cutting edge stuff. The hope that comes with this is longevity… and I am all for it.

Other than that all has been quiet on the health front… and I must confess that living a quiet, boring, normal life is a very good thing.  

And we know that for those who love God all things work together for good, for those who are called according to his purpose.
Romans 8:28

More to come…

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…