[roseanneinia]

Thinking of you, Neil. Prayers and positive thoughts are winging their way north to you.

[roseanneinia]

I wanted to update you all. Dad died in the hospital on Jan. 18 from the AML. I just couldn’t bring myself to come on and post any more bad news.

Now, more than two months after his death, it still seems unbelievable that this disease we had never even heard of before last September could take a fine man down so fast.

I continue to check this site at least once a week and pray for those of you who have been affected by MDS. And I will pray unceasingly for a cure. God bless you all.

[roseanneinia]

Thanks to all of you for your support and assessment of things. Even though I have not posted much I feel as though I know many of you well from reading through the previous posts when I first came here. I wish MDS had never touched any of your lives, but I admire the strength and tenacity with which you face it. Thank heavens you are here for the newly diagnosed to find and learn from!

Dad’s MDS has transformed to AML. The bone marrow biopsy taken on Thursday showed 50% blasts. Back in September I was told he had 0 blasts! Can this be? And I am now skeptical about the RARS categorization. His fever continues and he has had quite a bit of pain in the spleen area. The pain is being adequately managed now. He and Mom have decided against pursuing any further chemotherapy. It was their decision and we support them in it. With the supportive care he will still get all the platelets, RBC’s, oxygen and pain meds he needs. We are going to meet with Hospice tomorrow.

The ER care Dad got last Friday was abhorrent and I will be bringing it to the attention of the hospital administration, the head of the ER and whoever contracted the group that brought that guy in.

Dad is very happy with his oncologist/hematologist though. I’ve given him and Mom names of references that several folks have given me for second opinions and they’re not interested. I wish we would have gone to the University of Iowa as soon as he was diagnosed, but they were just so comfortable being treated close to home.

Thanks again for listening and caring. You all are in my prayers.

[roseanneinia]

This was my Dad’s Vidaza treatment week. He asked the doc on Monday if he could have the “drip” rather than the injections. Turns out the drip takes just 1/2 hour. Those fourteen injection sites got pretty miserable for him.

The only side effect he noticed from the drip was a fairly strong “feeling” of nausea the evening of the first one. (He did have anti-nausea meds, and he had never experienced nausea with the injections.)

I’m concerned because my parents believe Dad is going to get one more round of Vidaza in December and then that is all. (four rounds total) Could be that they misunderstand. Hopefully I can attend their appt with the hemo in Dec.

[roseanneinia]

This is such an “up and down” disease. By that I mean I feel like something positive happens, but you turn right around and there’s something negative again. Dad did go 17 days without a transfusion from October 19 to November 5, but by the 5th his hemoglobin was 8.4 and he felt VERY bad. He got 2 units RBC that day and also the doc told him he was discontinuing the Procrit shot. I wasn’t there, so I don’t know why, but he must feel Dad was not responding to it. He’s doing OK this week, but yesterday and today he has horrible pain in an elbow. He thinks he’s just “pulled” or stretched something. I told him I thought he should call the doc and tell him about it. I feel it is probably MDS related.

What does anyone else think? About the pain and about the procrit? Thanks.

[roseanneinia]

Hello, Neil. You don’t know me as I’ve only recently come here and have only made one post. What I have done is read as much of the forum content as I can whenever I have a chance, and as a result I feel like I know you. I can’t thank you enough for the knowledge I’ve gained by reading your posts and the comfort you’ve brought as we still try and get our minds around this recent MDS diagnosis of Dad’s.

You are in my prayers, Neil. Hope the next CBC shows improving numbers; that the radiation does its job; and that the external scar heals quickly for you. Scar or no scar, in my mind you have the face of an angel. Thank you and good luck.

[roseanneinia]

Thanks for the welcome, Jax and Bec. Each evening I try to read a few more pages through this forum. Lots to digest.

The neupogen injections brought Dad’s WBC up to 8.something on Monday and he was able to start round two of the Vidaza. They are only going to do five days this time instead of seven. Not sure why.

On Monday, Dad’s hemoglobin was 9.8, stayed the same from the week before. He hasn’t had a transfusion now since October 19…twelve days. We are encouraged by this and hope it means he is responding to the Procrit.

I welcome any wisdom anyone wants to share with me. Dad is in good spirits. Mom has been a wreck. She was hardly able to eat for the first month, but is doing better now. Happy to see him not needing blood every five to seven days.

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