MDS to AML moving fast

[DebS]

Hello all,

I have been reading and reading everyone's stories and posts for some time now. It has really been getting me through the past months. I felt that if I didn't post my current story that it somehow wasn't real. Now I see that was wrong as I could use some support right now. The reality has set in big time!

Doug had a BMB this past Tuesday and as we feared the MDS is moving to AML very quickly. His blasts are still low at 3.8% so I thought we might be okay. However the Hg and platelets were plummeting. His Hg is 7.6 and platelets are at 38 after having a platelet transfusion on Tues. That was his first platelet transfusion and he has had only one blood transfusion since this whole thing started at the end of December. So we have been lucky for awhile. We were able to have a somewhat normal life and do some things like traveling to Yellowstone in June and spending time with friends and family this summer. However, that is all about to change. The doctor told us that there will be lots of transfusions in the coming weeks.

In the meantime, there is good news. His brother has been tested and he is a 10/10 match. We were so grateful and blessed with that news. I know that we are very lucky.

What I wanted to know is if anyone knows anything about Loyola for a SCT. We had wanted to go to UW at Madison but there is a dispute with his insurance that has been going on for 7 months!!! Otherwise we would have had a plan in place and been ready to go. Now we are going to Loyola for a consult next week. We do have friends and family there so that will be good. Anyplace else, we would have been on our own.

I know in reading these forums that there are those of you going through a whole lot more. I am praying and thinking about you all. God bless!

Thank you.
Deb

[sstewart09]

My husband got him BMT at Loyola and we have been really happy with the care he has received. He's almost 6 months out and is doing pretty well. He sees Dr. Go and she is wonderful, but I know the other docs are great too. PM me if you have any other questions. I'd be happy to help.

[DebS]

Thank you for your kind offer.

It seems like when it rains it pours! I found out that a good friend of mine just passed away from multiple cancers. A few hours ago, I found out that my brother has lung cancer and they are taking his left lung in a couple of weeks
Meanwhile, we are trying to decide about the transplant. I read many positive stories but I also read very sad and negative ones. It is all so overwhelming!

Deb

[billyb]

Deb, I dont know anything about transplants, but after reading your post I had to tell you we are sending prayers your way....Billy and Tina

[DebS]

Billy,

Thank you so much. I am always praying for you and Tina also. Your strength and love for Tina comes through in every post. God bless!

[DebS]

We had our consult with Loyola. We are having the transplant scheduled as soon as possible. We felt good with the doctors that we talked to at Loyola.

This is never an easy decision. We have been told that this is about the only treatment at this time. So, what are our choices? We are embracing this, thinking positively, and praying.

We have received such support from all of you on these forums. I am sure that we will need that in the days and weeks and months to come.

In the meantime, I am rushing to see my brother in the hospital who now has a collapsed lung.

Deb

[susanML]

Sorry for your other family problems but wishing you all the best for the SCT. I will be seeing if I can go that route next week. It is scary but the other outcome is scarier. Best wishes. Susan

[susanML]

I was just wondering - how is everyones jobs holding up during all this with our different health issues?

[DebS]

Thank you, Susan. I appreciate your kind words. I know there are times that we all feel we are losing our minds!

We just have to take things one step at a time. I would be lost without these forums and the kindness, understanding, and caring that are on here day after day!

You hang in there.

[Cheryl C]

I'm thinking of and praying for all of you who are undergoing transplants or transplant conditioning.

[Whizbang]

DebS/(Doug),

My best to you and your Husband, obviously you will be in my prayers... I like the two of you, will be going through a SCT/BMT sooner rather than later; the only thing that is scarier (to me) than deciding to go through with a transplant is the thought that it's not an option... There are many, many on here who wish they had a perfect 10/10 sibling match... What ever the outcome, at least we have a fighting chance... I consider my self blessed...

God bless you both...

[DebS]

Whizbang,

You will be in our prayers also. We will have to compare notes on our journey. I know that we are stronger with the support of each other and all of the wonderful people on the forums.

Good luck to you. Our timeline looks to be mid to late September.

Hug those girls. They will definitely give you a boost of strength.

Deb

[DebS]

Thank you for your kind words, Cheryl. They are very much appreciated!

[Sally C]

Dear Deb and Doug,
I have been reading your posts and just wanted to join the others in wishing you well.
God Bless,
Sally

[riccd2001]

I guess I'm one of the lucky ones, too old to qualify for SCT, etc. Also being retired, I don't have as many obligations to keep in balance. I wish you all well with having the options to choose. All this added stress can at times overwhelm us.

We're fortunate to have this kind and helpful website to keep in touch with each other and find new and promising treatments. Best wishes to all.

[bebop]

Originally Posted by riccd2001

I guess I'm one of the lucky ones, too old to qualify for SCT, etc. Also being retired, I don't have as many obligations to keep in balance. I wish you all well with having the options to choose. All this added stress can at times overwhelm us.

We're fortunate to have this kind and helpful website to keep in touch with each other and find new and promising treatments. Best wishes to all.

in your tagline it says 47. is that your age? if so why are they saying you are too old for transplant? sorry I don't mean to be nosey but really curious about that one.

[riccd2001]

Hi Bebop - Don't I wish that I was 47 again! Actually the "47" is part of the Karyotype definition for my MDS. I was 65 when diagnosed, and that's the cut-off year for transplants here in Ontario, Canada.

[bebop]

Originally Posted by riccd2001

Hi Bebop - Don't I wish that I was 47 again! Actually the "47" is part of the Karyotype definition for my MDS. I was 65 when diagnosed, and that's the cut-off year for transplants here in Ontario, Canada.

lol sorry about that! I was wondering what the heck your dr was thinking lol. been a long day for me lol. I am not laughing at you hon. I hope you know that. Laughing at myself!

[DebS]

Thank you all for your kind words and prayers. They are much needed.

Doug had more platelets on Monday. The platelets are not holding very long at all now. The blood transfusion from last week does seem to getting him through. He even raised his hg to 10 by himself! But it was back down to 9.6 at the time of the platelet transfusion. We are very grateful that it is not more often for now. He is in WI now and I am in IL.

Meanwhile, I am at the hospital with my brother. He seems to be doing better. They are giving him daily radiation treatments to try and shrink the tumor before surgery.

Now, I think my mom has diabetes. She is very anti-doctor but I am taking her kicking and screaming today. She is down to 105 pounds and is constantly drinking all the water she can get her hands on!

Thanks, as always, for letting me vent! I don't know how much thinner I can be stretched

[Snuuze]

Thanks, as always, for letting me vent! I don't know how much thinner I can be stretched[/quote]

I love that phrase. It is so apt. God must think a lot of you to put all this stress on you at once. So that means you're up for the task, and will be strong for all those around you.

[DebS]

Snuuze

I guess that is one way to put it. Yes, I will be as strong as I can be for all. I know that I couldn't do it without these forums!!

[DebS]

As it gets closer and closer, it is getting scarier. Doug is now transfusion dependent--a new situation for us. Platelets last only a few days and blood lasts a week and a half to two.

We have appointments next week with Loyola for testing. Then I think things will move rather quickly. We are so grateful that we have this option but are scared out of our minds.

I am trying to think positively about all of the success stories and not dwell on the sad ones. How hard that is to do!

I have taken notes on what to bring to the hospital. I am buying him a notebook or Ipad this weekend.

Deb

[Susan L]

Best wishes and they're a lot of people praying for you. My plans have changed as the doctor wants to push forward finding a donor first then do the chemo instead of the long doses first - he isnt sure about all the blasts being true blasts cause of the fibrosis. That is confusing to me - but onward -- best to you both.

[DebS]

Thanks for the best wishes. We will need them all.

We were told that we DEFINITELY needed the donor in place before starting the chemo regimen. One doctor even said that it would be a "waste of time" to do it the other way around.

Keep yourself as healthy as you can, get a donor, and then proceed. I believe that is they way it is done. Other, more experienced people than myself, can weigh in if I have been misinformed.

The bottom line is you have lots of support, prayers, and love here. How can we possibly go wrong?

All the best.
Deb

[Susan L]

Hi - Had my labs today and will hear on Monday how often to do till I find my donor. I dont remember - How did Doug find his donor? Best wishes to all