APPROVED!!

USS IOWA VISIT

Well it has been a long month! After our visit on August 15th….we waited for the Insurance to approve  the request, which took a few weeks. After he was approved, Steve needed to complete and "pass" 4 tests; a Bone Marrow Biopsy, a Urine Test, Full Lab Tests and a Bone Survey before the Manufacturer, Celgene would approve him.

We went in on 9/3 for all 4 tests…….but just before the Bone Marrow Biopsy we were speaking with the Nurse Practitioner (Rose) who is the Clinical Research Coordinator, about what treatments Steve had in the past. Her previous understanding of his treatments was incorrect and based on the new information she felt that Steve would not be eligible for the trial:-(

So she held off on the Bone Marrow Biopsy and said she would contact Celgene and see what they had to say. After we left we felt fortunate that Steve was able to avoid a very painful test. One he didn't need if he couldn't be a part of the trial. Then we waited to hear from Rose.

Rose called us the next day and surprisingly Celegene said YES! Steve was scheduled on Friday, 9/5 for the biopsy and said he would be okay, no need for me to go.

Now you have to understand something……..I have had many sleepless nights worrying about Steve getting this biopsy without sedation…….I know his pain tolerance is low and I hated to think about him going through this procedure….so when he said "I'll ride my motorcycle to UCLA, get there quickly and be home as soon as it is over, so don't worry about me." I cringed inside. I was anxious all morning.

He told me later that everything was okay until she began the aspiration (pulling the bone marrow out of the bone) then it became extremely painful, she had to do this TWICE! But he got through it and I felt so much better that it was over! Thank you Lord!

Now to today…….we got a call on Tuesday from Rose, Steve passed all the tests and she wanted to know if we could come in on Friday? Absolutely! Today we went to UCLA for the new medicine, more lab work and the results of his previous tests.

Results:

• The Bone Survey-Outstanding!
• The Blood work showed an increase of his M-Spike from 1.2 to 1.6 (Cancer growing, Ugh)
• The Urine tests revealed his Kappa Light Chain is high: 24.01 (I need to learn more about why this is important)
• The Bone Marrow Biopsy has 2 parts: the Plasma cell count (cancer total) and the FISH or Chromosome test. The Cancer count is now at 30%, up from 15-18% 3 months ago. This is affecting his Red Blood Cell production. This number unnerved us a bit.

The FISH tests takes several weeks to come back. 

So we received the new medicine and Steve will start taking it tonight and then we go back to UCLA in 4 weeks. 

I know this is a long post….but in between all the waiting and tests, Steve and I both were sick……everything piled up! So we have been playing catch up with many things.

Our prayer requests is the Lord will bless this new medicine. Steve has never had a Complete Response (Myeloma Remission Terminology) with any of his treatments, only a Partial Response. We are going BIG, we are asking for a Complete Response! 

So PRAY, PRAY, PRAY and when you are done PRAYING…..PRAY some more!

Also pray for Julie, Rosemary, Natalie, Maricella, Marcie, Debbie, Jim and Michael.

Thank you for your Love, for your Support and your many Prayers!

Mrs. L