Go Platelets!

1/28/16 – I continue to be at the John Theurer Cancer Center to treat my ITP and low platelets. My day can include me getting platelets (HLA or cross matched), IVIG, Rituxan, NPlate, etc…

Yesterday was one of those days. The day started with my platelets at 6. I received IVIG, and two bags of HLA platelets. The day ended with my platelets at 58. Woohoo!!!!

The hope now is that they stick.

I will head back to the cancer center on Friday, January 29^th for a similar treatment where I will get IVIG, platelets (cross matched) and an NPlate shot.

I would really love to get to the point where we know what is causing ITP in me… what works best in treating it and what’s not working. This of course requires patience on my part being we are going through a process of elimination.

We did find out that my stool sample came back negative for H. pylori. It is clear that it is not the cause of the ITP. In addition I can resume taking Penicillin V potassium, Bactrim and Livalo. They were not found to be a cause either. On top of that I am being weaned off the prednisone being it wasn’t helping with the ITP.

Next week should prove to be very informative. I’ll get my third Rituxan treatment. It seems that with treatment we should be able to tell if the Rituxan is working.

From the perspective of keeping the eye on the Mantle Cell Lymphoma ball, I will have a PET Scan on Friday, February 5^th.  This ITP issue has caused a setback but the fight against MCL still needs to be in the forefront. Being in remission and keeping it from coming back is my top priority. I am very much looking forward to be able to begin with the PD-1 (Opdivo) treatments… but I need to be patient.

Be still before the Lord and wait patiently for him; fret not yourself over the one who prospers in his way, over the man who carries out evil devices! Refrain from anger, and forsake wrath! Fret not yourself; it tends only to evil. For the evildoers shall be cut off, but those who wait for the Lord shall inherit the land.

Psalm 37:7-9

More to come…

http://mantlecell.blogspot.com/

Another ITP Update

1/22/16 – After a week of my trying to get my platelets to rise we started today with a count of 8. Following 2 bags of platelets the count hit 19. In addition, I received an IV of Amicar and a shot of NPlate. This should get me through the weekend. I need to be back at the John Theurer Cancer Center on Monday, January 25^th for additional platelets, Rituxan and whatever else my medical team feel will help treat the ITP.

Another development with the ITP is that one of my blood tests came back showing I was positive for an infection called H. pylori. A stool sample was taken to see if I truly have this in my system. If it is true, H. pylori can be a cause of ITP. I should hear back on the results of the test by early next week. From what I hear it is fairly easy to treat with antibiotics. This could end up being a good thing. Of course I would rather go down this road than have a splenectomy.

Everyone at John Theurer have been supportive and compassionate.

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…

http://mantlecell.blogspot.com/

ITP Update

1/19/16 – Last week we continued to treat my ITP and it seemed like we were making good progress. After a platelet infusion and a couple of IVIG’s had my platelet count was at 26. At today’s checkup my platelets were at 9. The feeling is that the current course of treatment I am on is not working. Today I started with a new course that included stopping 3 of my medications (Penicillin V potassium, Bactrim and Livalo). In addition I received IV steroids, 2 bags of platelets and Rituxan. After the first bag of platelets my counts went to up 15… but believe it or not after the second bag my platelet count fell down to 12. It would seem that my immune system and platelets are in a bit of a tug of war. I will continue with this course of treatments for the next 3 weeks where I will get 3 more doses of Rituxan. If things do not improve the next course of action will be to remove my spleen (aka splenectomy). With low platelets, which translates into an inability for my blood to clot, I do have concerns with have a surgical procedure. Saying this I do fully trust my doctors and medical staff. I am very sure that all the proper precautions will be in place if we do go down this road.

The million dollar question is why I developed ITP. In truth, it can be from a number of things: medications, years of chemo therapy, an infection, blood infusions, etc… I guess it falls under the “it is what it is” category and we just need to take care of it in any way we can.

I will be back at the cancer center either tomorrow or the following day to get more platelets.

For the next period of time I will need to be cautious and avoid any activities that can cause me to bleed or hemorrhage. This can be the hardest thing for me being I do have extreme difficulty sitting still. Thank God for my wife Sue who watches me like a hawk and will make sure I stay in my bubble until it is safe for me. I am very blessed to have great people in my life.

Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me.

Psalm 138:7 

More to come…

http://mantlecell.blogspot.com/

A Case of ITP

1/8/16 – We were planning to start treatment with PD-1 (Opdivo) next week but I run into another obstacle. I started to bleed from my nose and mouth. I have also developed a bad rash on my legs… and it’s not GVHD. The rash is pinpoint red spots, also known as a petechial rash. I went to the cancer center today to have this checked out. The first thing we learned was my platelets were 8 which is very low (Normal platelets counts are typically around 150). Also I was diagnosed with ITP.

ITP (Idiopathic thrombocytopenic purpura) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. It is typical that persons with the disease have too few platelets in the blood.

I guess my new immune system, the one that was put in place to help keep my MCL in check, has the ability to work against me and destroy my platelets. I’m thinking that this is just another challenge that I will get passed.

Today I was treated with IV steroids and an infusion of platelets. In addition I was put on prescriptions of prednisone and fluconazole. I have a follow up appointment on Monday. January 11^th. If the current treatment is not effective other possible treatment options can include an IVIG or Rituxan.

Once the ITP is under control and my platelets have rebounded we will revisit starting treatments with Opdivo.

Here is a YouTube link to a great song of encouragement called “Brother” by NEEDTOBREATHE feat. Gavin DeGraw. 

https://www.youtube.com/watch?v=61Wm_qlVD4Q

Enjoy!

Three times I pleaded with the Lord about this, that it should leave me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.
2 Corinthians 12:8-10

More to come…

http://mantlecell.blogspot.com/