What’s New, Pussycat?

It’s been a while since I wrote a “health” post, mostly because nothing much is happening. When I first decided to write this blog, I expected a flurry of interesting activities. That didn’t happen … at least not yet. Instead, I have taken a more sedate route to health.

If you have been following my blog, you know that I originally expected to undergo a stem cell transplant (SCT) fairly soon after I first visited MD Anderson. We were looking forward to a total healing from Chronic Lymphocytic Leukemia (CLL). What really happened is that I was put on a trial drug, ABT-199, from Abvee Labs. The initial flurry of activity involved increasing dosages from 20 mg to 50 mg to 100 mg to 200 mg to the max dosage of 400 mg over a period of four weeks. Each dosage increase involved a stay in the hospital. Melanie and I were in Houston for a total of two months.

The hospital stays were precipitated because the size of one lymph node mass was well over the safe limit which categorized me as a “high risk patient”. The big danger was Tumor Lysis Syndrome (TLS), a situation in which the CLL cells were killed off so fast that the kidneys and liver are overwhelmed resulting in organ  failure and possibly death. This didn’t happen because of the cautious way MD Anderson administered dosages, increased dosages, and monitored my progress. I must commend MD Anderson’s physicians for a well thought out protocol for this drug. To the best of my knowledge, no one in this program as suffered any form of TLS.

Since the initial dosages, our life has revolved around monthly returns to Houston for checkups and tests. All pretty boring things to discuss in a blog. I doubt you all want to know how a bone marrow biopsy is performed or what happens during a CT scan. We simply fly down one day (neither of us drives much anymore) and return the next day or the following day. See what I mean? Bo-o-o-oring.

That pretty much brings us up to the present. The last CT scan results were very encouraging. Since the beginning, nearly all the involved nodes have returned to normal. The only one that hasn’t has shrunk from 10.2 cm at the beginning of treatment to 3.6 cm. The bone marrow has shown considerable progress. Overall, this is quite remarkable in light of the fact that the time span has been six months from the first dose. Next week, we will be returning for one of those overnight visits. Blood tests and a visit with Dr. Kadia. Yeh, exciting. Well, actually we do enjoy the visits with our doctor and his staff; they are wonderful and fun to talk to.

What does the future hold? We are still looking towards a Bone Marrow Transplant sometime this year. This has been approved by all involved insurances. I have three “10” matches, which is the best possible from a Matched Unrelated Donor (MUD). My brother was tested and did not match.

I encourage you to sign up to be a donor. It is painless to be tested. It is relatively painless if you are called upon to donate. You can learn how at Be The Match. There are other organizations as well. You can read more about tissue donations in a previous blog I wrote, “A Word about Tissue Donation”.

I thank you all for your continued support. It means a lot to us to know that hundreds of people are praying for us while we are on this journey. Thank you. Thank you. Thank you.

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