Irish Beth
04-19-2006, 06:19 AM
Here is the latest news from my brother, he always refers to Ruthann as "The Queen".
I know, I know, it’s been a long time since the last update, just remember what your parents used to say, “Silence is Golden.” The Queen was on the new drug Revlimid for about 6 weeks. She had her labs check once a week and it seemed to be working well. She felt fine and her blood work was great. White counts down to normal and her spleen was returning to near normal size. All was well in the Queens garden and there was little reason to bore you with mundane updates. About 3 weeks ago her platelets dropped very low. The normal surf has 150,000 to 450,000 platelets. The Queens were down to 5,000. Anything below 10,000 is considered dangerous. So off to the clinic we went for an infusion of platelets. Revlimid was stopped and lab work became a twice a week thing each ending with more infusions of platelets. Since the central line was removed this means lots of sticks in the arm with the old dull needle.
April 10th a surprise, “let’s do a bone marrow biopsy.” Oh, what great news to start off the Queen’s week. Thursday brought a meeting with the doctor and the first part of the results. The Revlimid has stopped working. So what now you ask. A second transplant will probably be sooner than later. Ideally they would like to remove the spleen prior to the next transplant since it is still a little enlarged and was somewhat responsible for the first transplant failing. Not a real good idea with platelets so low. So let’s start with a low dose Chemo. It’s called Vidaza. (No not the onion)
Starting Tuesday the Queen will have a shot of Vidaza each day for 7 days. Then 21 days later 7 more shots. The goal is to clean the marrow of excess CMML cells and shrink the spleen. Of course she may also receive platelets until her garden starts growing a new crop. The side affects of Vidaza are the usual chemo side affects nauseas, vomiting, fever, diarrhea or constipation, (guess what I’m hoping for). Now that sounds like a fun week! We have been told that Vidaza is well tolerated and many people have very mild reactions. We can only hope. In 56 days a bone marrow biopsy will be done and all options explored when the results come back. If Vidaza is working well a third set of shots could be considered.
All this has caused us to delay a planned trip to visit family and friends in the Pittsburgh. Really put a damper on our enthusiasm. We were hoping to leave on the 22nd and to have 10 days or so for a change in scenery and briefly put the clinic behind us for a few days. Flexibility has become our by-line and we hope to reschedule some time during the 21 days between Vidaza injections. All will depend on how well it is tolerated and of course platelet counts. We have had the weekend to digest all this stuff and we have become more determined then ever that CMML will not rule. Small setbacks are opportunities to build our resolve. The Queen remains relentless and enthusiastic.
So there you have the latest, sure is a little wordy, sorry. I will let you know how we are coping with the Vidaza in about two weeks.
Thanks for all your thoughts and prayers.
I know, I know, it’s been a long time since the last update, just remember what your parents used to say, “Silence is Golden.” The Queen was on the new drug Revlimid for about 6 weeks. She had her labs check once a week and it seemed to be working well. She felt fine and her blood work was great. White counts down to normal and her spleen was returning to near normal size. All was well in the Queens garden and there was little reason to bore you with mundane updates. About 3 weeks ago her platelets dropped very low. The normal surf has 150,000 to 450,000 platelets. The Queens were down to 5,000. Anything below 10,000 is considered dangerous. So off to the clinic we went for an infusion of platelets. Revlimid was stopped and lab work became a twice a week thing each ending with more infusions of platelets. Since the central line was removed this means lots of sticks in the arm with the old dull needle.
April 10th a surprise, “let’s do a bone marrow biopsy.” Oh, what great news to start off the Queen’s week. Thursday brought a meeting with the doctor and the first part of the results. The Revlimid has stopped working. So what now you ask. A second transplant will probably be sooner than later. Ideally they would like to remove the spleen prior to the next transplant since it is still a little enlarged and was somewhat responsible for the first transplant failing. Not a real good idea with platelets so low. So let’s start with a low dose Chemo. It’s called Vidaza. (No not the onion)
Starting Tuesday the Queen will have a shot of Vidaza each day for 7 days. Then 21 days later 7 more shots. The goal is to clean the marrow of excess CMML cells and shrink the spleen. Of course she may also receive platelets until her garden starts growing a new crop. The side affects of Vidaza are the usual chemo side affects nauseas, vomiting, fever, diarrhea or constipation, (guess what I’m hoping for). Now that sounds like a fun week! We have been told that Vidaza is well tolerated and many people have very mild reactions. We can only hope. In 56 days a bone marrow biopsy will be done and all options explored when the results come back. If Vidaza is working well a third set of shots could be considered.
All this has caused us to delay a planned trip to visit family and friends in the Pittsburgh. Really put a damper on our enthusiasm. We were hoping to leave on the 22nd and to have 10 days or so for a change in scenery and briefly put the clinic behind us for a few days. Flexibility has become our by-line and we hope to reschedule some time during the 21 days between Vidaza injections. All will depend on how well it is tolerated and of course platelet counts. We have had the weekend to digest all this stuff and we have become more determined then ever that CMML will not rule. Small setbacks are opportunities to build our resolve. The Queen remains relentless and enthusiastic.
So there you have the latest, sure is a little wordy, sorry. I will let you know how we are coping with the Vidaza in about two weeks.
Thanks for all your thoughts and prayers.