MDS RAEB-2 and now severe Myelofibrosis

[Al's Wife]

Patti,

You and Dean are in our thoughts and prayers. Hopefully the Vidaza will be just the thing that pulls Dean out of this decline. Please don't give up and don't let the doctors take him off too soon. Al only had Vidaza for six months and they took him off and I always wondered if they took him off too soon. He will start his 13th cycle of Dacogen on Monday and his counts are higher than they have been in three years. While the Dacogen had kept him relatively stable for the last year, it wasn't until Cycle 11 that the numbers actually went up. His platelets went from virtually 0 two months ago to 72,000 today. He has been on a low dose since January, as I had read that elderly people with AML did better on a low dose and suggested it to the doctor. So far - so good.
Now if we can get Dean on the right path again. Such an awful roller coaster ride for us all.
I'm praying for strength for both you and Dean and that he tolerates the Vidaza well. I've also read where some people that had quit responding to Dacogen were given it a second time and responded again - so be sure and check out ALL options.
One year ago yesterday we were told Al had "weeks not months" since he had transformed to AML. He was in a wheelchair and on oxygen 24/7 and could hardly get out of bed. I know y'all have been back and forth too, so you well know to embrace each and every day.
So please hang in there and tell Dean not to give up.
Prayers coming your way,

[slip up 2]

The average time Vidaza works is 9 months....many get longer & for some it will never work....Kate

[MagicBob]

Al's Wife

Linda, your post today sure has given me a shot-in-the-arm, and like Dean and Patti, I haven't been getting any good news. Last Monday my MDS specialist at Johns Hopkins gave me a pin (HOPE) and your post reiterates that and it is what we need to hear.

Al is living proof of what can happen, and he hasn't been the first, so there is Hope for all of us.

OUR LOVE AND PRAYERS TO YOU AND AL,

Bob and Dru MagicBob

[PattiDean]

Originally Posted by Al's Wife

Patti,

You and Dean are in our thoughts and prayers. Hopefully the Vidaza will be just the thing that pulls Dean out of this decline. Please don't give up and don't let the doctors take him off too soon. Al only had Vidaza for six months and they took him off and I always wondered if they took him off too soon. He will start his 13th cycle of Dacogen on Monday and his counts are higher than they have been in three years. While the Dacogen had kept him relatively stable for the last year, it wasn't until Cycle 11 that the numbers actually went up. His platelets went from virtually 0 two months ago to 72,000 today. He has been on a low dose since January, as I had read that elderly people with AML did better on a low dose and suggested it to the doctor. So far - so good.
Now if we can get Dean on the right path again. Such an awful roller coaster ride for us all.
I'm praying for strength for both you and Dean and that he tolerates the Vidaza well. I've also read where some people that had quit responding to Dacogen were given it a second time and responded again - so be sure and check out ALL options.
One year ago yesterday we were told Al had "weeks not months" since he had transformed to AML. He was in a wheelchair and on oxygen 24/7 and could hardly get out of bed. I know y'all have been back and forth too, so you well know to embrace each and every day.
So please hang in there and tell Dean not to give up.
Prayers coming your way,

Thank you Linda! It is funny what you say about taking Al off of Vidaza too soon, I have had the same thought about Dean and Dacogen.

MagicBob's post to you says it perfectly, you and Al do give us hope, and that is what we need. It doesn't seem like it has been a year, I remember when Al was so very sick.

That is great news about Al's recent blood counts, and we do need to hear good news!

Sending love and (((HUGS))) to you both! You always keep us believing that it isn't over yet!

You are in our thoughts and prayers always!

Patti and Dean

[MagicBob]

Patti/Dean

Did Dean have transfusions today, if so how is he feeling.

I received 12 units of Platelets this morning, CBC & Oncologist on Thursday and 2 units of Red and 12 units of Platelets on Friday. So far the transfusions haven't moved the counts very much. Platelets from 7 to 11.

Our love and prayers to you and Dean,

Bob and Dru

[PattiDean]

Originally Posted by MagicBob

Patti/Dean

Did Dean have transfusions today, if so how is he feeling.

I received 12 units of Platelets this morning, CBC & Oncologist on Thursday and 2 units of Red and 12 units of Platelets on Friday. So far the transfusions haven't moved the counts very much. Platelets from 7 to 11.

Our love and prayers to you and Dean,

Bob and Dru

Good Morning Bob,

Yes, Dean received one unit of PRBC and single donor platelets yesterday, that could be anywhere between 4 - 6 units. The nurses told us they believe single donor platelets are better for Dean, they come from one donor and are believed to be more potent.

Dean did receive single donor platelets on Friday, and at his labs on Monday his platelets were 5, they ran the CBC again and the platelets were 3, so the platelet count went down to their lowest point even with the transfusion on Friday. Dean has labs again tomorrow, we are waiting and wondering if the transfusion yesterday made a difference.

Dean doesn't feel any better, still so weak and short of breath. How are you feeling Bob?

You and Dean seem to be on the same schedule. He has labs on Mondays and Thursdays, and transfusions on Tuesdays and Fridays.

We will let you know the results of the labs tomorrow. Praying that both of you have improved counts!

Lots of (((HUGS))) Bob! You and Dean need some good news, that's for sure!

Patti and Dean

[MagicBob]

Originally Posted by PattiDean

Good Morning Bob,

Yes, Dean received one unit of PRBC and single donor platelets yesterday, that could be anywhere between 4 - 6 units. The nurses told us they believe single donor platelets are better for Dean, they come from one donor and are believed to be more potent.

Dean did receive single donor platelets on Friday, and at his labs on Monday his platelets were 5, they ran the CBC again and the platelets were 3, so the platelet count went down to their lowest point even with the transfusion on Friday. Dean has labs again tomorrow, we are waiting and wondering if the transfusion yesterday made a difference.

Dean doesn't feel any better, still so weak and short of breath. How are you feeling Bob?

You and Dean seem to be on the same schedule. He has labs on Mondays and Thursdays, and transfusions on Tuesdays and Fridays.

We will let you know the results of the labs tomorrow. Praying that both of you have improved counts!

Lots of (((HUGS))) Bob! You and Dean need some good news, that's for sure!

Patti and Dean

Same with me, still weak and shortness of breath. Received 12 units Platelets yesterday and thank God no Rigors. We have been trying to get
single donor platelets, and haven't had any luck.

I will also let you know of my labs tomorrow, and yes I agree a little good news would surely help us.

Our prayers and love,

Bob and Dru MagicBob

[PattiDean]

Originally Posted by MagicBob

Same with me, still weak and shortness of breath. Received 12 units Platelets yesterday and thank God no Rigors. We have been trying to get
single donor platelets, and haven't had any luck.

I will also let you know of my labs tomorrow, and yes I agree a little good news would surely help us.

Our prayers and love,

Bob and Dru MagicBob

Hi Bob and Dru,

How were your labs today?

Dean's actually weren't too bad, better than they have been.

WBC 1.2
RBC 2.3
HGB 8.3
PLTS 17

Dean has to return for labs again tomorrow, they want to see if there is a change, and schedule him for a transfusion in the afternoon, if necessary. I think they just want to make sure he will be okay over the week end.

We hope you had good news today!

Sending lots of love, hugs, faith, hope, prayers and smiles!

Patti and Dean

[MagicBob]

Originally Posted by PattiDean

Hi Bob and Dru,

How were your labs today?

Dean's actually weren't too bad, better than they have been.

WBC 1.2
RBC 2.3
HGB 8.3
PLTS 17

Dean has to return for labs again tomorrow, they want to see if there is a change, and schedule him for a transfusion in the afternoon, if necessary. I think they just want to make sure he will be okay over the week end.

We hope you had good news today!

Sending lots of love, hugs, faith, hope, prayers and smiles!

Patti and Dean

We are happy to see the move up with Dean's Platelets, that was a big jump with only 4-6 units. That is really something to Smile about. Single donor is by far the best, I inquired about them as was told they are difficult to get.


WBC 1.3 up
RBC 3.4 up
HGB 10.0 up
PLTS 10 down Received 12 units on Tuesday and will get another 12 tomorrow.

Remember, faith and hope is powerful.

Our love and prayers to you and Dean,

Bob and Dru MagicBob

[billyb]

Patti, We have a hard time getting single doner platlets also, I keep track of your counts a little bit, has the doc ever mentioned Deans Leukemia is of the smoldering type, I was just wondering. Sending prayers your way, we have labs and transfussions tomorrow also

[billyb]

Got ya"ll in our prayers to Bob

[PattiDean]

Originally Posted by MagicBob

We are happy to see the move up with Dean's Platelets, that was a big jump with only 4-6 units. That is really something to Smile about. Single donor is by far the best, I inquired about them as was told they are difficult to get.


WBC 1.3 up
RBC 3.4 up
HGB 10.0 up
PLTS 10 down Received 12 units on Tuesday and will get another 12 tomorrow.

Remember, faith and hope is powerful.

Our love and prayers to you and Dean,

Bob and Dru MagicBob

Hi Bob and Dru,

We never realized how lucky we have been, the last two platelet transfusions have been single donor. It is discouraging when the counts don't go up after receiving transfusions, hopefully the 12 units today will make a difference!

Dean and I are constantly thinking and worrying about the next lab day and what his counts will be. When they go up just a little, we are happy, when they don't improve, we can't help but feel discouraged.

Dean is scheduled for a type and cross match at 8:00 a.m., then transfusions at 11:30 a.m. Thankfully our hospital is only three miles away, so we come back home in between.

We try to keep having hope and faith, some days are easier than others.

Thank you for the love and prayers, Dean and I always keep you and Dru, Billy and Tina, and many others in our thoughts and prayers. Much of our hope comes from our prayers.

Sending you and Dru our love and lots of (((hugs)))) today!

Patti and Dean

[PattiDean]

Originally Posted by billyb

Patti, We have a hard time getting single doner platlets also, I keep track of your counts a little bit, has the doc ever mentioned Deans Leukemia is of the smoldering type, I was just wondering. Sending prayers your way, we have labs and transfussions tomorrow also

Dean and I didn't realize how lucky we are that he has been able to receive single donor platelets. His last two transfusions have been single donor, and his oncologist has them requested for today. It does seem to make a difference, Dean's platelets did go up.

Dean's doctor hasn't mentioned the smoldering type of Leukemia, but we see him every Monday, and we will ask him. Not sure, what is that Billy?

How are you and Tina today? Sending our love and prayers to both of you!


(((HUGS)))

Patti and Dean

[bebop]

one thing about blood and platelets is the age of them. blood last longer than platelets. Dad had single donor for a long time. I don't know where you guys are but Dad's came out of the Atlanta Red Cross to Gainesville Ga. You might want to check with them.

[sstewart09]

If I'm not mistaken, they can do one step better than single donor which is called HLA matched. This might be something to ask about if transfusions aren't holding. I know it does take some time though to find a match.

[PattiDean]

Originally Posted by sstewart09

If I'm not mistaken, they can do one step better than single donor which is called HLA matched. This might be something to ask about if transfusions aren't holding. I know it does take some time though to find a match.

Thank you sstewart. :-)

[Susan L]

Hi - I havent seen anything for a couple days and am hoping everything is going ok. My evaluation is moved up to Tuesday and I am having little panic attacks - errr . Just so hoping things arent too far that I can get something going. take care - Susan

[PattiDean]

Originally Posted by Susan L

Hi - I havent seen anything for a couple days and am hoping everything is going ok. My evaluation is moved up to Tuesday and I am having little panic attacks - errr . Just so hoping things arent too far that I can get something going. take care - Susan

Susan, so thankful to hear that your evaluation will be next week. Waiting is so difficult. We can certainly understand your panic attacks, I couldn't imagine not having them. We will keep you in our prayers Susan! Please let us know how your appointment goes, hopefully it will be good news, you do need that.

Dean's oncologist is going to start him on Vidaza this Monday, along with labs everyday to keep an eye on his counts. If needed, Dean will also have transfusions during the week. Dean's counts are so low, his doctor wants to try to keep them stable during the treatment.

Today is labs, and transfusions tomorrow, but Dean is hopeful about starting Vidaza.

Sending you lots of love, hugs, faith, hope, prayers,

Patti and Dean

(((HUGS)))

[MagicBob]

Originally Posted by PattiDean

Susan, so thankful to hear that your evaluation will be next week. Waiting is so difficult. We can certainly understand your panic attacks, I couldn't imagine not having them. We will keep you in our prayers Susan! Please let us know how your appointment goes, hopefully it will be good news, you do need that.

Dean's oncologist is going to start him on Vidaza this Monday, along with labs everyday to keep an eye on his counts. If needed, Dean will also have transfusions during the week. Dean's counts are so low, his doctor wants to try to keep them stable during the treatment.

Today is labs, and transfusions tomorrow, but Dean is hopeful about starting Vidaza.

Sending you lots of love, hugs, faith, hope, prayers,

Patti and Dean

(((HUGS)))

Hi Patti and Dean,

Good to see your post, I sent you an email several days ago, as we hadn't seen any post for awhile. Happy to see that Dean is finally getting the Vidaza, and praying that it helps boost his counts.

My MDS doctor at Johns Hopkins called yesterday morning and informed us that the final report from BMB shows Blasts at 20, a real shocker. Also indicated that I only have a 50-50 chance for the Clinical Trial.

Platelet transfusions aren't helping currently at 7.

Hanging in there, Bob and Dru

[billyb]

Bob, Thinking about ya"ll and sending prayers, even though your platelets arn't moving much, the transfussions help keep them out of the negitive, which is a good thing, just be careful about bumping into things and falls........Billy

[susanML]

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)

[MagicBob]

Originally Posted by susanML

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)

Hi Susan,

Thank you for the response, and yes hanging on plus faith/hope is a great help; however sometimes I feel like I am hanging by finger nails.

Wishing you the very best with the BMT.

Our prayers,

MagicBob

[sbk007]

Susan, My first consultation lasted all but 20 minutes.
Unless you have major health issues aside from MDS, you'll most likely be a candidate. They will probably draw blood so they can start the HLA preliminary match thru the registry. Hope that helps a bit..it is quite overwhelming. You know you're not alone. When I told my Doc that I have doubts about going ahead with SCT he said he didn't blame me. I thought he'd encourage me but he didn't. Its a rough ride and a tough call. All the best, Steve

[susanML]

I feel the same way --- just barely hanging on - today bad day of it too--- I am so hoping I can get a transplant.

[susanML]

Hi - The only other problem I have is the fibrosis of the marrow - thats what is really scaring me - I hope they will do a transplant with that addition. I am sooooo ready - May I ask if you had a match or did they do your own stem cells?---Also may I ask what region you live in?