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 11th. 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.
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
2 Corinthians 12:8-10
More to
come…
6 comments:
Rich
We aream sorry to hear about yet another bump in the road. Everyday, we pray that the adventuress you are going through will yield the desired results. I know you have great trust in the doctors.
My wife has started down the allogeneic transplant route. Tomorrow, she will receive the cells from our son, a partial match donor. We were turn down at another hospital because they did not want to confront medicare about payment. We are unsure even if we will succeed in getting payment from medicare. But the hospital in Charlotte, is willing to do battle with them. Like you, we trust in the staff here.
Our continued prayers that the Lord will provide your doctors with the guidance needed to overcome this bump and lead you to a cure.
Hi Charles,
My prayers are certainly with you your wife and your son on a very successful allo transplant. This a a process that requires time and patience but it is well worth in. I am sure your wife will do great. And it is so wonderful that your son is able to be the donor. It is great that you have trust in the medical staff in Charlotte. There is peace of mind when you know your doctors are in your corner.
Thank you so much for all your continued prayers and support.
Rich
Hi Rich,
Any updates? I hope you are doing better. How was your follow-up on the 11th?
Joanne
Hey Joanne,
Thanks for checking in. I head back to the cancer center today for another follow-up. Last week my platelets fell as low as 5. After getting a couple of IVIG's they hit 26 on Friday the 15th. I am hoping that my platelets will start going up on their own (without the need of IVIG and platelet infusions). Also, I have been on steroids. I would love to start getting weened off of them and move toward my next phase of being treated with PD-1. It all comes down to patience on my part. I'm sure all will start to fall into place soon.
Thank you again for all your support,
Rich
Just checking in again, Rich. Love how you handle the obstacles, but we know 2 steps forward and one back is still moving forward! Had my first virus in 2 years. It has taken a few weeks to feel human again, but I love the fact the "we" we're able to knock it. Prayers continue for you!
Hi Janet,
I am so glad that you were able to knock out the virus. With people like us obstacles become a part of life. We just need to keep positive, strong and faithful. Thank you so much for your continued support and prayers.
Rich
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