Remaining in Limbo

We met with Ray's doctor today at the Moffitt Cancer Center. Although we didn't receive the news we were expecting, we are somewhat relieved. All the biopsy results are not complete yet but the preliminary report is showing a few unexpected, but good things! However it left us scratching our heads. Apparently the tests are showing different results than the last biopsy done last month in Cincinnati. The 'blast' numbers that somewhat gauge what stage you're in are now at just 1%. That's what they were in June when he had his 1st biopsy. But the 2nd biopsy in late October showed that they had gone up to 6%. Also, the October biopsy had identified that nasty 17p chromosome problem, but the doctor is not seeing that showing up now. What the heck!

So you know me, I begin to question it all to make sure I understand what he's saying. Could the results in Cincinnati have been reported incorrectly? Can that nasty chromosome 17p problem just disappear? Could those 'blast' numbers have been read wrong? The doctor said that is one reason he always preforms his own biopsy before making any decisions on treatments. He told us that the pathologist reading/viewing the tests may have not interpreted them accurately & that the pathologist at his center here at the Moffitt Ctr is an expert & he has complete trust in his interpretations. On the other hand, maybe the Revlimid med they had him on was finally doing it's job. He said that normally the Revlimid would show positive results sooner but Ray doesn't exactly seem to be in the 'normal' category with how his body is reacting to it all.

How the Revlimid works is very interesting. It was explained to us like this. Think of the Revlimid as a weed killer (the bad stem cells are the weeds). The weed killer kills the weeds & THEN the grass (good cells/blood) needs time to re-bound. Our hope is that Ray's blood work begins to improve but only time will tell.

This does not change the fact that he does indeed have MDS, but it greatly impacts what we do next. The continued blood work that Ray continues to receive almost weekly still shows his deficiencies in many areas. The doctor wants us to still keep our appointment with the stem cell transplant people so that should Ray need to move forward with the transplant, we'll be ready to go, telling us that depending on what the final biopsy results show, he may need to have the transplant as soon as possible OR we may be able to just treat with medicines & put it off another 2 or 3 years. Say what?

So again I ask the doctor questions. Are you saying that at some point he definitely will need the transplant & if so, what determines when? The answer is yes. If the final results show that the 17p chromosome is no longer a problem & has corrected itself and the blasts are at just 1%, then we will probably just treat with a medicine regiment & continue to monitor him. But if & when blood work results show things going south, the transplant would be in order. Therefore we are still in limbo for the time being.

I asked about the possibility of using his own stem cells, as is sometimes done & was told that is not an option with MDS. You must have a donor that matches. Your best chance of a match is your siblings of course. If no match, then there is a donor registry. But we'll cross that bridge when we come to it.

One thing we were not happy to learn is that he must start again with the shots in his stomach each day until we can meet with the doctor that handles the decisions on his coumadin meds. I tried to talk the doctor into just letting him start back on the coumadin to prevent blood clots & forgetting about those darn shots, but he said "No". I don't know who hates those shots the most; me who has to administer them to him, or him receiving them. Poor guy. Sometimes when I give him the shots, he barely feels them. Other times they hurt & leave nasty bruises.

We meet again with the doctor in two weeks. Hopefully we will know then what course we'll be taking. In the meantime, we have various appointments for continued lab work to monitor his blood, coag consultation, transplant consult, etc.

Ray wore a face mask while out today for the 1st time. Was kind of odd. We have told Randy (his 56 yr old brother who has downs syndrome & also lives with us) that we all must now be extremely careful about avoiding germs, & that every single time he returns home from going anywhere, even just for a walk, he must go straight to the bathroom & wash his hands thoroughly NO MATTER WHAT. Randy wasn't happy about that & did a bit of grumbling but it's ok. He'll get used to it & do fine. This household will all be taking daily multi vitamins. The national news tonight reported that the flu season may be worse than usual this year. I sure hope they're wrong! But all four of us had our flu shots before we left home.

On a positive note, Ray is still feeling fine & continues to do whatever he wants. Tomorrow he's heading out to play some tennis. I am so glad we both took that early retirement when we could. I said it then, that we weren't going to look at how much money we gave up by taking early outs because we wanted to enjoy some retirement while we were still healthy. Ray's been retired & enjoying it fully for going on 9 years now. I've been retired going on 7 years. And we've never looked back. Just saying... 

Feel free to leave comments by clicking on the little "Comment" tab directly under this post, but be sure to sign it so we know who wrote it! ~Ray & Pam~