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Katie,

I’m sorry to hear this. I can understand why your dad is feeling frustrated about being in the hospital so much longer than he was expecting, but it’s a good sign that there are things the doctors can try to treat this relapse. I’m not at all familiar with Dacogen, but I wonder if they could be thinking that after that he might be able to have the DLI.

Your father, you and your family will be in my prayers. I’m here, if you want to talk. Feel free to email or call me.

Nicole

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Sandy,

I am so sorry to learn of Mike’s passing. You and your family will be in my prayers.

Nicole

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Katie, I haven’t been checking in here as often lately, and I was so sorry to log on today and see your latest message. I’ll be praying for all of you. Have you been able to gather any new information since your last post? If you see this and have a few moments, please write again and let us know how your father, you, and your family are doing.

Love and prayers,
Nicole

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Shari, you and your father will be in my prayers as well.

Nicole

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Hi Katie,

I’m sorry to hear that they haven’t been able to find the source of your father’s fevers. And with his doctors admitting that they’re baffled, it’s no wonder that he’s feeling discouraged. I’ll definitely keep praying. I hope that whatever is going on will “show iteslf” so the doctors will know how to treat it appropriately.

Do you know if his nails are still yellow? If that’s something new, that sure sounded to me like it could be an idicator for the doctors of where to look for the source of the fevers.

Hugs,
Nicole

[riley]

Hi Katie,

I was just thinking about you and your dad. How is he doing?

Nicole

[riley]

I’m sorry that he’s going through this, Katie. I’m praying for both of you.

Nicole

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Katie,

I’m glad your father is eating a bit and that his counts are staying up. Those are two big positives.

I wonder if it’s possible that one or more of the medications that he’s on could be contributing to his low mood. I think I recall others here saying that they experienced Ativan causing depression and sedation.

I checked my notes — Reglan and Zofran were two anti-nausea meds that my father had good luck with. Everyone responds differently though.

His appetite stimulant was called Megace. It took about three days to kick in. He was on it twice, and it worked great both times.

I’m praying for you and your father. Keep us posted, as you can.

Nicole

[riley]

My father was not well enough to be able to fly to Arizona, so we went to Mayo in Jacksonville, FL when we were seeking another opinion about his diagnosis. Everyone there was outstanding! We don’t have a single complaint about the care they provided my father or how my father or my family was treated. They showed concern for all of us and took perfect care of us.

The hem/onc in Atlanta that my father had been seeing told him there was nothing that could be done, he had three weeks to live, and he should spend his time getting his affairs in order and saying his good-byes. Mayo spent a week running every test under the sun, told us a three-week prognosis was way off base, and told my father that he had nine different treatment options to choose from.

I am very glad we went to Mayo. I hope your experience in Arizona will be as positive as ours was in Jacksonville. I’d be interested to hear about it, if you feel like sharing after you go there.

Nicole

[riley]

Katie,

I’m sorry your dad is having such a rough time. Are his doctors giving him anything to try to control the nausea or to stimulate his appetite?

My father never had a transplant, but after his chemo and a surgery, he had nausea and appetite problems. He also really disliked the Ensure they kept trying to get him to drink. We found two meds that worked for him and helped him to want to and be able to eat again. One was an appetite stimulant that took about three days to kick in, and the other one controlled the nausea. I can’t remember the names of them right now, but I could check my notes if you’re interested.

Nicole

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Diane,

I’m sorry your father is in the hospital. I hope he’s doing better today.

During my father’s hospitalizations when he was seen by more than one speciality, his hem/onc ran the show. They said the reasoning was that his primary illness was MDS — the other specialties got involved because of complications due to the MDS — so they felt the hem/onc was the doctor to coordinate care. I imagine this is probably handled differently depending on the hospital and doctors involved.

If you or your father have a preference for who acts as the primary doctor, maybe you can request that he/she take on that role?

Nicole

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Welcome, Bill. I’m sorry your father has been diagnosed with MDS, but I’m glad you found this forum. There are so many knowledgeable people here who are happy to share their experiences. I hope you will find it a supportive site to visit.

Nicole

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Katie, I’m sorry I can’t help with your question about the lumps in your father’s arms. I just wanted you to know that I was thinking of you. How is your father doing?

Nicole

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Katie, thanks for the update. I’ll be praying for all of you this week.

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I’m glad to hear that you got mostly good news yesterday. I hope the steroid cream will help to heal the catheter site quickly. I’ll be praying for your father’s successful transplant.

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