I had my last visit for the year with my doctor this past Tuesday. All my numbers are stable – no real significant changes up or down – and no signs of any post transplant related problems like Graft vs Host Disease (GVHD). So as we come up on 100 days after transplant (Jan 8), another Bone Marrow Biopsy (BMB) is in order which will occur on Jan 3 (great way to start the year?!). If everything comes back normal, I will start an 8 cycle, every 6th week clinical trial on Jan 10.
The clinical trial is being run by Washington University to see if giving a maintenance chemotherapy (Decitabine) will prevent relapse of disease. Decitabine is a well tolerated FDA approved chemotherapy drug with few side effects (won’t cause hair loss or nausea, for example) but the doctor is warning me that it will bring my numbers down. They will closely monitor that and take action if necessary. Since I am much healthier now than when I first had a cycle of this drug, we think I will not have any major issues. This is a long term clinical trial, after up to eight cycles they will monitor me every six months for many years. Then someday I will end up lumped in with a bunch of numbers on a Power Point presentation at some doctors conference 😉
Seriously though, the drugs I got during transplant were determined by people on clinical trials years ago, so hopefully I will help somebody in future to increase the odds of defeating these diseases, and it may help me too right now.
I have been getting out and about more. Friday, Dec 17 I visited my work office for the first time since I went on disability. It was nice chatting with everybody for a couple hours and seeing what is going on. I have a new PC waiting for me with dual monitors, so that will be something new to play with. So far, looks like Feb 1 is the date I will go back to work.
Christmas will be close to home with my mom and family/friends coming over. I may go to church for the first time in months. I plan on going to my neighbors New Years Eve party. Finally, on December 29 will be going out with our group for the year end dinner at Jimmy’s on the Park .
This will probably be the last post until after I get results from Bone Marrow Biopsy on Jan 3, 2011. Merry Christmas, Happy New Year, and be careful out there !
The days are getting shorter, the temperature is plummeting, and the first significant snowfall may happen this weekend – must mean winter is just around the corner! I was able to get some Christmas lights hung outside and a couple decorations inside…with the help of Susan. Like everything else past few months, I will be taking it easy on all the celebrating to reduce any chances for exposure to bad things.
The last doctor visit was December 7 and again all the numbers are good and steady as we come up on Day +70. The biggest thing the doctor emphasized is to continue aggressive hand washing for both myself and people I come in contact with. It is the number one thing to prevent any infections which could bring complications. Hopefully next week I will make a little visit to work to see everyone and at end of month is a big end of year dinner in our Dine Out On A Dime group I will be going to. The doctor has pretty much given me clearance to be out in groups as long as I stay away from people who are obviously coughing and sick. And I am still planning on going back to work in February.
Medically, here is what is on tap for next month. I will be getting another Bone Marrow Biopsy either at end of month or beginning of January. After that, I will get this central line taken out of my chest. The central line has been in since end of September to make it easier to give IV medicines and draw blood. But it also is a potential source of infection and doctor feels at a certain point it becomes more an issue and should be removed. It will also be nice to take a shower without doing all the prep work to protect central line! Around that time, I will (most likely) start on a clinical trial.
The clinical trial is a test to see if maintenance therapy using Decitabine will prevent recurrence of MDS. Just like any other cancer, the potential for relapse is always a concern and is still possible irregardless of how well I recover. Decitabine will be given through IV for 1 hour on 5 consecutive days. That cycle will happen 8 times every 6 weeks – in effect a year long treatment. Decitabine is a well tolerated chemotherapy drug that attacks MDS cells. I was on this medication for about a week and the only effects I had were a couple of sores in my mouth. The doctor thinks since I am healthier now, I might not have any side effects, but nothing is guaranteed in a clinical trial. I do not have to participate and I can stop it at any time. Right now, I am inclined to start it but I still want to do more research. Plus the good thing is since this trial is being run by Barnes-Jewish, it is completely paid for. So I get the added benefit of getting extra tests to monitor progress every six weeks which I might not normally have without the trial.
It looks like I might be in prison and sometimes it feels like it! Everybody keeps saying I have the perfect head for being bald, but I think I still want my hair back. It still may be awhile before it starts growing again. You can’t tell from that picture, but there is a lot of hair fuzz on top, it just not growing much.
That’s all for now, I will probably post again before Christmas.