July 24, 2008

Hello All,

Just thought I would send out the latest update so you can pray specifically.

July 14th Ron camped out at MD Anderson from about 8 until 12:30. I tell people he went in with boxing gloves, taking no prisoners. He went back and forth from the first floor pharmacy to the second floor doctor’s office jumping all the hoops, dotting all the “I’s” and crossing all the “t’s”. Revlimid is a closely guarded drug and there are just a lot of procedures and regulations you have to go through for them to actually distribute the drug. But, my hero was once again successful, so we started the meds July 15th.

Ron is now an official drug dispenser as wellJ I take a steroid once a week, an aspirin and the Revlimid once a day for 21 days. Then I am off a week, and then start again. It is a 3 month regimen and then I get reassessed after that. The side effects were minimal until Sunday evening. I experienced shortness of breath, pain below my ribcage and a headache. I also have had no appetite, resulting in a 9 pound weight loss. (I am not complaining about that). So, since I was due for labs Monday morning (July 22) I let Dr. Hajdenberg’s office know of the side effects. The lab appointment was at 8:00 and Hajdenberg wanted to see me right afterwards. He sent me for a CT scan with contrast because he had to rule out any blood clots, which is one of the possible side effects from the Revlimid, which is also why I take the aspirin. So, instead of our appointment being from 8 - 8:30, we were there from 8 to 3. The CT scan came back clear, so Ron asked him to check my blood work. He came back and said everything was normal except for my calcium level which was elevated to an 11. Not greatly elevated, but he said that could be making me feel bad. He scheduled me for an IV of fluids and a medication to take care of the elevated calcium. So, Tuesday was spent at MD Anderson from 1 to 4 getting that. I feel incredibly better. No more pain in my chest, no more shortness of breath and only a slight headache.

This could happen again, and if it does, he will back me down to 12.5 mg of Revlimid instead of 25 mg to see if that helps. The numbness and tingling in my lower legs is worse, which also could be a side effect from the meds. That probably troubles me the most. So, please pray for that to get better. I don’t even want to think about going backwards in that area.

I get out of my brace next Friday, August 1st. YEAH!!! Another hurdle.

Thank you for all your prayers, they mean more to us than you can imagine.

Amy leaves to go back to Liberty in 13 days. Pray for everything to go smoothly. She has been such a great help, words cannot begin to express how her presence at home has helped. We will miss her, yet we know she is right where God wants her to be.

Thank you again,

Jenny Goins