[riley]

What great news, Katie!! I’m so happy for all of you! I hope your father, you and your family have a wonderful time celebrating Father’s Day together today!

[riley]

Katie, our experience is the same as Jack’s — this quickly, all they ever had for us was a preliminary report. A final report took any where from several days to a couple of weeks. The prelim and final reports could sometimes vary a bit. Keep us posted on what you learn in the next few days. I’m praying along with you.

Nicole

[riley]

I knew someone in college who told us he had been on every drug imagineable. He said it was harder to get off of nicotine than it was to get off of heroin or cocaine.

A coworker of mine used to be a chain smoker. She tried lots of different things to quit smoking — accupuncture, hypnosis, sheer will power, chewing gum, etc. What finally worked for her was the nicotine patch, combined with lots of will power. I’ve never smoked, but from what I’ve been told, you have to want to quit for anything to be effective.

[riley]

Hi Katie,

I’m glad your father is home now! Today is a big day for both of you. I’m praying that the BMB goes smoothly and will be painless for your dad and that he will get the results he needs to be able to go ahead with the transplant, if he chooses to. I’m also praying for you and your conversation with the doctor. I hope that being able to ask your questions and get some answers will help.

After my father’s second round of chemo, and after waiting more than a month for his counts to come back, they came back very quickly too. For us, it ended up being good news with a partial remission that lasted for about a year with no need for him to have more chemo. I hope it will be good news for your father too!

I will talk with you again soon. Email or call later if you want to.

Nicole

[riley]

Katie, you’ve been on my mind today. How is your father doing?

Nicole

[riley]

Hi Katie,

I’m sorry your father is having such bad pain today. I’m keeping him in my prayers.

Is the pain in his bones or around his organs? If it’s bone pain, my father had that after his chemo and about one day before his counts started coming back. He described it as an all over aching in his bones. He didn’t act like it was an intense pain, but persistent and annoying. His nurse told him it’s common when the marrow starts to function again.

Since you’re saying excruciating pulsating pain around the kidneys, that makes me wonder about kidney stones. If there’s a blockage, I believe that could cause fever and cause urination to stop. My father didn’t have kidney stones, so I don’t know for sure. Maybe somebody else here will know more about that.

My other thought would be to rule out an enlarged spleen. When my father’s spleen was enlarged, he first had lower back pain and then abdominal pain, and his counts were low. It can often be ruled out with a physical exam. If they need confirmation, they may order a CT scan.

Please keep us posted.

Nicole

[riley]

Hi Katie,

I just sent you a PM.

I’ll ask this question here though since it might help others who search the board in the future — can you or Jack tell me what MEC stands for?

Thanks,
Nicole

[riley]

Hi Katie,

I’m glad you got to see your father today. How was he? Are the antibiotics working to start clearing up his infection at all?

I’m really sorry he and you are going through such a rough time. I’m sure many here can relate to the rollercoaster ride that you’re on right now. It’s great news that he remains in good spirits — I really do believe that makes a big difference.

Does your father want to go ahead with the MUD, if possible? If so, I agree with what Pat said earlier to let the doctors go ahead and start searching for a donor. It can take some time to find a good match.

My father never tried Vidaza or Dacogen, but all of his chemos were ones used to treat leukemia. For his second round, we lived in the hospital for 12 weeks because his counts took that long to rebound. His doctor just said that sometimes counts can be “pokey.” He also said it sometimes happens more often with the “heavy hitter” chemos. I don’t know how Vidaza and Dacogen compare with the ones my father was on at that time (Topotecan and Etoposide), but I hope it’ll be the same for your father — that the chemo is doing its job really well and the counts are just taking their sweet time in coming back.

Would you be able to schedule a phone call with your father’s doctor so you can ask him some of the questions that are weighing on you?

I’m keeping you and your father in my prayers.

Nicole

[riley]

Hi Katie,

How is your father doing today? I hope things are looking up.

Does he still want to do the transplant? If I’m recalling correctly, did he have a sibling who was a perfect match? You mentioned the doctor wanting to look for a donor, so I must be remembering that wrong. There are so many factors to consider, and especially, what your father’s wishes are.

If you can tell us more about where things stand now, maybe someone more knowledgeable than me will jump in with some advice or some questions for you to ask your father’s doctor.

Nicole

[riley]

Hi Rachel,

I think the link below will take you to a post from a mother of a 5-year-old boy with MDS. If it doesn’t work, you can search on this site for “child with MDS” and it will bring up her post from 12-12-06. She was looking to connect with other parents whose children have MDS. My prayers are with you and Delaney.

Nicole

https://www.mds-foundation.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=004532#000000

[riley]

I received an email from AAMDS about this today. Here is the link to their sample letter:

http://www.aplastic.org/aplastic/disease_information/drug_information/how_you_can_make_a_d.php

[riley]

Hi Katie,

I don’t have an answer for you, but I just wanted to let you know that I’ll keep you and your father in my prayers.

Nicole

[riley]

Hi Mary,

My father’s first symptom was fatigue in July 2003. In November 2003, he became ill with what seemed to be a recurrent stomach virus. All of his counts were normal in November 2003 and early January 2004. He did not have abnormal counts until late January 2004.

He was losing weight quickly (50 pounds in the first 50 days of 2004), so in January his doctor sent him to a GI specialist, an infectious disease specialist, and an oncologist.

He had a BMB on January 20, 2004, and was diganosed with MDS on February 3. A second opinion gave him a prognosis of 3 weeks. A third opinion at Mayo resulted in a second BMB and diagnosis of a unique MDS that they had never seen before and couldn’t find any record of anyone having any where in the world. They strongly disagreed with the 3-week prognosis and gave us 9 treatment options.

My father opted to return to Atlanta and receive treatment at Emory. He had a third BMB so his Emory hem/onc could run his own tests and feel confident in the treatment plan that he was going to recommend. He confirmed a diagnosis of a unique MDS.

My father received two rounds of very strong chemos, ones that are typically used to treat leukemia. He achieved partial remission and lived 17+ months past his initial diagnosis — long enough to meet his first grandchild and love her through the first year of her life.

Nicole

[riley]

Campbell,

I’m very sorry for your loss. My thoughts and prayers are with you.

Before and soon after my father passed away, my mother experienced the same thing that you did with hearing music that was meaningful to her. God is so good to send His comfort to each of you in that way.

Nicole

[riley]

Sandy,

I’m very sorry to hear that they turned down such a great article — and in such an insensitive way.

I hope you’ll keep trying other avenues to get your article published. With 529 people reading it in the first six days it was online, there’s obviously interest in what you have to say.

Nicole

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