Again; - Thank you all for your support and prayers - they have to help, I am sure. Earl is not having many 'good' days so to speak, and this worries me a lot. I am not used to him being so debilitated.
Sallly - I did get in touch with Greg and he sent me his contact information. I called the research nurse, and she emailed me a list of what they would need for preliminary evaluation, and I have started to get some of the information on its way. Hopefully, they will accept Earl into one of their clinical trials. We have a friend who lives in Laurel, Maryland, and they have offered to have us stay with them. So hopefully they will get things done and we will be able to be seen there.
On top of all this - he has thrush in his mouth and down his throat.
I have been arguing with our PCP since June that he had something going on, but he didn't seem to think so. Monday, he had his Medicare Wellness Visit (Which I found out is NOT required - but glad we went) with the nurse practitioner at our PCP's office. I asked her to check Earl's mouth, and also look at the growing rash on his legs and buttocks (he was mortified that I would mention his behind) - and she came up with exactly what I had been saying - that he had a severe case of Candida Albicans - translated - MAJOR yeast infection all over him and inside his mouth - and I said that I thought Diflucan was in order to be prescribed - and she agreed.
In fact - she not only agreed - but instead of the one time dose - she gave him a reduced dose to be given over 7 days. You can see the improvement on his legs and buttocks, but his mouth is really bad. He also has ulcers which makes it difficult for him to eat. We got a scrip for Nystatin swish and swallow, and also one for the Magic Mouthwash, but so far, no real improvement. We have one day left of the Diflucan, and I hope something kicks in, because it is very hard for him to eat, let alone swallow, and Monday he starts his third round of Vidaza - and I hope this time he gets all 5 doses. Too - the Revlimid will also start after the chemo is over.
Hope everyone else is doing better, and know that you all are always included in my prayers.
((((HUGS))))
Beth