Sunday, February 14, 2016

Platelets Trending Down Again

2/14/16 – At my Friday, February 12th appointment my platelets were down to 18. With recent check-ups I have gone from 67 to 59 to 26 t0 18. Certainly things are not moving in the right direction. It would seem that my 4 Rituxan treatments have not worked as expected. Also although getting cross matched platelets and IVIG does increase my platelet count the results are short lived. The jury is still out on whether the NPlate shots are effective. I have had 4 shots at this point but it can take as many as 6 to 8 shots to take effect. The one adjustment we did do to my meds is we replaced my steroid of prednisone with dexamethasone. If the NPlate and dexamethasone doesn’t work we will probably start talking about a splenectomy.

I’ll be back to the cancer center on Monday, February 15th for another check-up and a possible platelet infusion.

Today is a very special day on a couple of counts. It’s Valentine’s Day, a day I need to give very special thanks to my wife Sue and daughters Jill and Alli for being so supportive to me. I truly love my girls very much.
Today is also the first Sunday of Lent. The Psalm of the day carries a main theme of:  FAITH in the lordship of Jesus gives us all HOPE for salvation. How great it is that today’s focus is Faith, Hope and Love. May this day be a very special one for you and your loved ones.

Be with me, Lord, when I am in trouble.

You who dwell in the shelter of the Most High,
who abide in the shadow of the Almighty,
say to the LORD, "My refuge and fortress,
my God in whom I trust."

Be with me, Lord, when I am in trouble.

No evil shall befall you,
nor shall affliction come near your tent,
for to his angels he has given command about you,
that they guard you in all your ways.

Be with me, Lord, when I am in trouble.

Upon their hands they shall bear you up,
lest you dash your foot against a stone.
You shall tread upon the asp and the viper;
you shall trample down the lion and the dragon.

Be with me, Lord, when I am in trouble.

Because he clings to me, I will deliver him;
I will set him on high because he acknowledges my name.
He shall call upon me, and I will answer him;
I will be with him in distress;
I will deliver him and glorify him.

Be with me, Lord, when I am in trouble.
Psalm 91:1-2, 10-11, 12-13, 14-15

More to come…

Friday, February 5, 2016

More Good News

2/5/16 – I was back in Hackensack today to check my platelets (and other blood counts), get an NPlate shot and then have a PET Scan. The day started with the me receiving news that my platelets were 59. This was good news. Although this is still low it does seem that they are holding their own.

Next I headed to another building on the Hackensack University Medical campus for my PET scan. While I was waiting for my scan the cancer center called. They said that they would like me to return there after my scan so they could infuse some fluids. Apparently my kidney function was low as a result of a high creatinine. Once my PET was complete I headed back to the cancer center. While the fluids were infusing into me one of the nurses noticed that the results of my PET scan came in. Soon after this the results were delivered to us from our favorite APN. On the report from Radiology was drawn a picture of a smiley face with the words “Looks Great!” 
Yes, the scan was all clear and I am still in remission.

So things continue to look up.

Sure I have to complete my treatments for ITP. I’ll be back for my 4th and final treatment of rituxan on Tuesday, February 9th. Hopefully this will do the trick and bring an end to this ITP saga. I will need to continue to get NPlate shots for a while until my platelets are able to maintain themselves at a normal level.

All and all this was a great day.

O give thanks to the LORD, for He is good; For His loving kindness is everlasting.
1 Chronicles 16:34

More to come…

Tuesday, February 2, 2016

Quick Platelet Update

2/2/16 – I was back in the cancer center on Friday, January 29 and Monday, February. On Friday my platelets were at 39. Although they did go down it was a positive sign that they didn’t drop to single digits as in the past. Based on this I only received IVIG and the NPlate shot… I didn’t need platelet infusions. On Monday, February 1st my platelets were at 67. Now this was awesome to hear. My platelets seem to be going up. I’m not sure what the cause for these good results is. It has to be either the Rituxan or the NPlate. There is still some work to do with my ITP/platelet issues but all signs are looking pretty positive. I did have my 3rd Rituxan treatment yesterday. I’ll receive the 4th (and final) Rituxan treatment next week.

I will be back at cancer center on February 5th for another NPlate shot and a PET scan.

A joyful heart is good medicine
Proverbs 17:22

More to come…

Thursday, January 28, 2016

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 29th 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 5th.  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…

Friday, January 22, 2016

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 25th 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…

Tuesday, January 19, 2016

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…

Friday, January 8, 2016

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 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. 

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…