[GlowWorm]

Dad released from hospital today!! 😀
Still not out of the woods, but blasts down to 13 from 29 in the past week or so, post Mylotarg treatment. We are hoping to see them go down <5%.

[GlowWorm]

Today wasn’t all that bad. He has been able to keep down most of what he ate today, and is feeling a little stronger than yesterday… only a little.

The abdominal bloating seems to be caused by gas – the doctors did a check (a rather painful rectal exam) to see if they could find any stool or bleeding, and them seem to have found nothing of major concern.

Has anyone here experienced abdominal bloating post Mylotarg? The doctors have not prescribed anything for gas, and we don’t want to give him any over-the-counter drugs like Gas-X for instance, because we don’t want to create a problem.

Other than that, he is still weak, still on oxygen (I saw somewhere that Neupogen, which he gets daily can cause respiratory distress… could that be the reason for his need for oxygen? Note: his lungs are clear, and were scanned last week).

Overall, today wasn’t that bad. We’re hoping that he will continue to make these baby steps.

[GlowWorm]

KristyK, thanks for naming those other drugs. I’ll look into them, and I am happy that his experience with AML is an inspiration to you, and hopefully others here.

My dad is only 59 now, so you can get a feel for how young he was when first diagnosed with AML. His long history with the illness is for us, bitter-sweet.

The bitter part is obvious – the dreaded AML came back 10 years after the BMT! We didn’t see that one coming at all, and it was just as big a blow to him then as was his first diagnosis…. perhaps bigger, as he assumed then, that there would have been nothing that could have been done to save him.

The sweet part of it is – he had a wonderful, happy, 10 year ride, free of AML, post BMT. He has been blessed with a family that loves him, and over the years, a caring and supportive medical team.

Now, however, we have another challenge on our hands, and, although I will admit, he has bounced back from challenges in the past, we are very concerned about the recent turn that his body has taken post-Mylotarg. I fear that if he gets over this current hurdle, we will only have one shot to try something new.

Therefore, I’m searching the ‘net’ in an attempt to find something that can give us some hope of buying him several more years on this earth, while having those additional years be as comfortable for him as possible.

He’s tired of being sick, tired of the tubes and the medication, and the fevers and the vomitting, and the hospital room… everything; and we are emotionally drained as well.

I suppose what I’m really saying is that I know that not only am I hoping that the information I can get here, along with the words I can get will be comforting to me, but also that all of it will help him to find the strength to get through this. Hope is such an important thing in this fight… without it, we give up.

[GlowWorm]

Hi everyone, I’m new here, and hope I’m at the right place. My Dad has a very long history with AML, and we are feeling very discouraged at the moment. You can see the whole history here:

http://ubb-lls.leukemia-lymphoma.org/ubb/Forum21/HTML/000330.html

I was introduced to your board by someone at the abovementioned site, and the drug Vidaza looks very very interesting.

Right now though, I’m interested in anything that can:

1) help my dad get over his current hardships (see above post) including seeds, pineapples (someone please explain this to me by the way), so that after this, he can try this new Vidaza drug.

2) Give us and him hope!!

Help me keep my hopes up please. Thanks.

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