We heard from the doctors regarding the cytoxan treatments. The question of whether or not we were going to do another cycle all depended on Gary and how he was doing. His levels were good. He looks pretty great as far as skin. He does have a few bleeding scabbed up cuticles on a few fingers. In my Dr. Mom opinion, I do think it is a good idea to not run another cytoxan treatment (no it has nothing to do the HELLisptal). I do think the JDM is slightly smoldering. Very low. Very quiet. That does concern me that over the next couple months without the cytoxan, we will just have another repeat of mild symptoms coming on gradually. Like the small dots on the insides of his hands and all over his face. Gradual weakness returning but not blaring, just enough to make me worry. BUT we can't know until we try coming off the cytoxan.
Gary and I are on our way (sunblocked, hat, and sunglasses) to celebrate Earth Day and pull some weeds in our community. Have a wonderful day.
The yucko Methotrexate! Uggg I always get so sick to my stomach the night I take it and the day after always have! I bet it is a side effect he is having! Hope it goes away quick quick for him!
ReplyDeleteWhat is up with all of us DM and JM patients having the major flares, nail bed hemmorages etc.! My disease has been flared for 3 mths and they can't seem to get it regulated! I go to JHU next week to see what they are gonna try to do next! I was gonna ask you about Infusion when you get a chance could you e-mail me! They are thinking about starting me on it!
Soooo I am praying all of Gary's symptoms go away and I laughed out loud that you called the hospital the hellspital 'cause that is what I call it too! LOL I guess if you spend so much time there that is exactly what it feels like
xoxo
Summer :0)