I have not posted an update for a couple of weeks since not much has changed. I have learned that much of the treatment is a waiting game and I really won't know any definitive answers until my 6 month check-up in September. At that time, I will have a bone marrow biopsy which will help determine if the Gleevec is working on a molecular level. I continue to have weekly blood counts and the numbers seem to have stabilized. My side effects have been quite minimal. I am down to about 15 minutes of mild nausea in the morning. The muscle cramps have gone away for now.
In terms of other updates, the transplant team has made progress in their search. An initial search yielded 46 potential unrelated bone marrow donor matchs. The next step is to test these people again and check their health. Currently, there are 3 people being tested. This could take some time to hear back.
I contacted the Rhode Island Blood Center to find out more information about gettting on the bone marrow registry. They told me it is a very simple process which essentially involves giving some blood and filling out some health form. I was told that in Rhode Island insurance will cover this, and if not, there is apparently a charitable donation that picks up any noncovered fees. Anyone can walk in to one of the centers or to a blood drive to donate. Here is the information about locations Rhode Island Blood Center. For people outside of Rhode Island, you can go to the National Marrow Donor Program's website to find donation centers near you. The guidelines are typically that you must be between 18 and 60 and in decent health. You also have to be willing to donate your marrow to anyone who might need it.
I continue to feel quite good and it is somewhat amazing how life continues on. I don't have any doctor's appointments for a few weeks. Life is as normal as it can be for now. Let's hope it stays that way. I am very comforted by all the messages of support I receive from people.
2 comments:
Hi Jon & Melissa:
Great pix of the girls. Look at those cheeks!!
It got around the office today about this sight, so some of the girls in the office were interested in logging on, so I gave this address to them. They (both Lori's, Beth and Lynn) had no idea you had such a sight and said they would be logging on to read your "blogs".
They said they probably wouldn't leave any comments due to not knowing what to say but I said that they'd be surprised what they'd be able to write once they start.
If all that you write here is the truth, it's good to hear. I can't say its GREAT to hear because I read that your still having some side effects. Even though they've been minimized, I can't help but wonder if some of the slight(and I truly mean slight)changes I see in you are what MENTALLY happens to people going through CML and not physical changes. I'm sure that now that you've been diagnosed with CML, everyone will be watching your actions a lot closer and will be connecting every possible ailment you have to this, just know that it's because we all care for you and want nothing more then to see you pull through this and to someday be yourself again BOTH mentally and physically.
Again, you will continue to be in my prayers. God Bless.
PS-Thanks for keeping us updated with your diary and pictures.
Sue
Jon,
Thank you for writing about your experience with CML. I was diagnosed about 2 months ago and it's helped me a lot to read other people's experiences with this cancer. I wish you the best of luck in your fight.
I'm keeping track of my experience here: http://hatefulblood.blogspot.com/
Funny we picked the same template....
Later,
Matt
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