Al is finishing up third cycle of Dacogen

[Al's Wife]

After being told on August 17th that Al only had "weeks not months" he decided to go ahead and try the Dacogen, even though the doctor said there was only a 3 to 4% chance of it helping. So far he has been stable or slightly improved. He has had transfusions twice when his reds got low during treatment and, of course, his platelets are nonexistent. He continues to take the Amicar which evidently helps because he has not had any bleeding issues.
We have thankfully been able to enjoy each day and have actually been on two trips recently and have another one planned this weekend. God is good!
If you remember my tears back in August, I thought he was at the end of the road, and so did he.
So right now we are living each day and enjoying our time together. None of us knows what tomorrow will hold, but thank goodness we have had this extra time together.
Hey, I'm still hoping for the miracle.
Love, courage, and hope to all,
Linda

[Neil Cuadra]

Linda and Al,

Your positive point of view is what all of us should strive for. If there are two things we've learned, one is that we should all use the time we have together to the fullest, and the other is that doctors know a lot about diseases and medicine but they are lousy fortune tellers.

Good luck on the Dacogen and Amicar.

[DanL]

Linda, your persistence in caring for Al has been admirable. I am happy to see Al responding with positive results.

[PattiDean]

Dear Linda,

It was so nice to see your post today. You and Al have been in our thoughts.

Dean had a very good respond to Dacogen. In July when he was diagnosed, the doctor told us he was in very serious condition and, like Al, didn't think Dean would make it. Two months later he was in remission.

Unfortunately, this month Dean's WBC and platelets began to drop. He began receiving Neupogen last week, but his WBC is still 0.3, hopefully the Neupogen will begin working soon. Tomorrow Dean is receiving platelets, he has gone from a high of 142 last month, to today's count of 9,000, still higher than it was in July, when it was 3,000.

Like you, we also feel that we have been blessed with each day we are given, and trying to enjoy each moment.

With hope, anything is possible. With faith, miracles happen.

You and Al are in our prayers always.

Sending you lots of hugs! Have missed you!

Patti and Dean

[milliken2]

Linda;
I am so glad things seem to be working for Al. I certainly know the heartbreak and pain in watching our hubbies decline. I, too, am thankful for each day I have with Earl, but am getting VERY concerned that his decline is more than just that.
He lost 17 pounds in 3 weeks. In June of 2011, he weighed 295 - needed to lose weight, but is now down to 189 - that's as of a week ago, and I am sure he is less now. His mouth is ulcerated, and it makes it hard for him to eat. Last week, we got 2 units of PRBC's and one 6 unit bag of platelets on Monday - got the same on Thursday - and then on Friday, got more platelets. When we went in for today's blood draw - his Hgb was only 8.6 - one tenth of a point aove transfusion level, and his platelets were 7,000 - so needless to say - he had another platelet transfusion today. It seems like we are living at the hospital. But - last week was the first time he got all 5 doses of Vidaza - this is the third session, but so far. no positive response that I can see.
I am in the process of gathering all records and sending them to both the NIH and to Dr. Sekkeres at the Cleveland Clinic. I talked to one of the research nurses at NIH - and she said they would have to get all the info there and then review it to see if he was even eligible for treatment there. And Dr. Sekkeres office said to send the records there too, so I am faxing 2 sets of notes, labs, and BMB path reports tomorrow.
Patti - glad Dean is doing well too.
Take care all, and know that my MDS family are always in my thoughts and prayers.

((((HUGS))))
Beth

[bebop]

so good to hear from you Linda! I am glad this seems to be working for Al!

[PattiDean]

Originally Posted by milliken2

Linda;
I am so glad things seem to be working for Al. I certainly know the heartbreak and pain in watching our hubbies decline. I, too, am thankful for each day I have with Earl, but am getting VERY concerned that his decline is more than just that.
He lost 17 pounds in 3 weeks. In June of 2011, he weighed 295 - needed to lose weight, but is now down to 189 - that's as of a week ago, and I am sure he is less now. His mouth is ulcerated, and it makes it hard for him to eat. Last week, we got 2 units of PRBC's and one 6 unit bag of platelets on Monday - got the same on Thursday - and then on Friday, got more platelets. When we went in for today's blood draw - his Hgb was only 8.6 - one tenth of a point aove transfusion level, and his platelets were 7,000 - so needless to say - he had another platelet transfusion today. It seems like we are living at the hospital. But - last week was the first time he got all 5 doses of Vidaza - this is the third session, but so far. no positive response that I can see.
I am in the process of gathering all records and sending them to both the NIH and to Dr. Sekkeres at the Cleveland Clinic. I talked to one of the research nurses at NIH - and she said they would have to get all the info there and then review it to see if he was even eligible for treatment there. And Dr. Sekkeres office said to send the records there too, so I am faxing 2 sets of notes, labs, and BMB path reports tomorrow.
Patti - glad Dean is doing well too.
Take care all, and know that my MDS family are always in my thoughts and prayers.

((((HUGS))))
Beth

Beth, my heartbreaks to know what you and Earl are facing! I wish I could wrap my arms around you and take all of the pain away!

You have always been there for your MDS family!

We will keep you and Earl in our prayers, and pray that the Vidaza begins to show an improvement. Know that you are in our thoughts!

Love, faith and hope is being sent your way, and lots of hugs!

Patti and Dean

[milliken2]

Patti;
Thanks Hon. Right now, I could really use a hug. That's another thing I miss - usually Earl would give me a wonderful 'bear hug' but now he says his bones hurt, and I am lucky if I get an arm around me. I am just so frustrated, and feel so useless. I just gave him his nightly Neupogen injection, and he seems to look so frail. This is NOT the way I wanted to spend our 'Golden Years" for sure. Thanks for caring.

((((Hugs))))
Beth

P.S. Hope Dean is doing better.

[cathybee1]

Al is my role model for "never quit." And you for seizing the day.

[Sally C]

Dear Linda,
I have been wondering how your Al has been doing. So glad there is some improvement and that you have been able to take a few trips.
I am still hoping for your miracle as well.
God Bless,
Sally

[PattiDean]

Originally Posted by milliken2

Patti;
Thanks Hon. Right now, I could really use a hug. That's another thing I miss - usually Earl would give me a wonderful 'bear hug' but now he says his bones hurt, and I am lucky if I get an arm around me. I am just so frustrated, and feel so useless. I just gave him his nightly Neupogen injection, and he seems to look so frail. This is NOT the way I wanted to spend our 'Golden Years" for sure. Thanks for caring.

((((Hugs))))
Beth

P.S. Hope Dean is doing better.

Beth, I just saw your post. I can understand how much you need a hug, and it is so sad that Earl isn't able to do that now. I love hugs, to receive them and give them to my family and friends. I always say good bye with a hug. Hugs lift me up when I am feeling down, so that is why I like to give them to people, to let them know I care. I know how much you need that hug!

You are not useless, you take wonderful care of Earl. I can't give Dean a shot, but you can give them to Earl. You are Earl's strength, hope, faith, love and courage, could you imagine how difficult it would be for Earl if he didn't have you in his life.

Also, you are not useless because you are also very caring and supportive to everyone on this board.

Unfortunately, this disease can make us feel useless when we watch our loved ones suffering, we want to be able to take that away, but when we are unable to do that, we can't help but feel defeated.

We will keep you and Earl in our thoughts and prayers. I wish I could reach through my computer and give you a great big hug! I can't do that, but I can send "hugs" your way, please put your arms around your shoulders everyday, and know that is a hug from me to you!

Don't give up Beth, always remember with hope, anything is possible and with faith, miracles happen.

Lots of love and hugs! Patti and Dean

[newfintexas]

Hi all, I know this is sort of unrelated to what you are all going through - but I have been following you all since hubby was diagnosed at the end of June. He had dacagen for 4 rounds, but nothing, in fact his wbc came up ...way too high, 18 - 27. bone marrow is no longer making red cells or platelets so the doctor stopped the chemo (aranesp did nothing) and we are going to transplant - Lee goes into the hospital next Wed and has harsh chemo for the next several days to completely wipe out his system and his transplant will happen on the 13th.

We found a perfect match - unrelated donor - a young man in his mid twenties apparently..what an unselfish thing for a young man to do for a stranger!! Lee's prognosis was not good and at 56 to know your time is limited and then to find out a young stranger is willing to try and give you life, amazing miracle.

I'm reaching out I guess, because I am so scared. I have seen this thing eat away at Lee, his cell count, his mind and body...and now although this is a wonderful possible cure - there is so much that can go wrong. It's terrifying to think of his immune system completely wiped out and then to depend on the transplant to work. I guess while you are waiting and not sure when things will happen etc, it's easy to put your fear to the side, but now we know the dates and what will happen, I am really scared and feeling so useless. I can only watch. I know lee is ok with me taking care of things while he can't - but that seems so little in this whole mess.

Thanks for letting me vent, and thanks so much for all your posts, even though I may not add much, I do read and keep up on your guys, I am praying for you guys, but wanted to let you know that you may not realize how much your wise and thoughtful messages help others here.

Laura

[milliken2]

Patti and Laura;

Thank you both so much for your words of encouragement. Patti - I just gave myself one of your hugs - and it felt good. It was a long day for Earl - had blood test in the early AM - then right back to the hospital for 2 more units of PRBC's and 1 large 6 unit bag of platelets, followed by the desferal. Actually - got the platelets first - then blood - then desferal. But - we still didn't leave the hospital till 6 PM - and he still is having a hard time eating. I got some yogurt into him today at the hospital - and some jello at home - but not much protein.

Laura - For sure, you and Lee are very lucky, and I wish you all the best. Of course - you will be in my thoughts and prayers for a successful transplant. And yes, how wonderful that a perfect stranger is so willing to help. I am sure he has angel wings if you really look. Make sure you have a supply of those paper masks so that Lee will be protected from any infection prior to going to the hospital. Again, good luck to both of you, and please keep us posted on how things are going.

((((HUGS))))
Beth

[maria&lola]

So nice to see an update on Al, Dean and Earl. I don't log in often enough these days but I'm thinking and praying for you all often and will include Laura & Lee as well!

As for us, mom is doing okay. I think we're going into our fourth or fifth cycle of Dacogen. She went almost six weeks with out a transfusion and then needed a couple pretty close together. Sighs.

Recently she's developed some purpura on her forearm. It cropped up there a couple weeks ago and then faded and then came in pretty dark again last night. I have a call in for the nurse. Does anyone have experience with this? My mom is chalking it up lifting the baby too much, but I don't want to downplay it, if her platelets are starting to take a hit now that she's been on the Dacogen for a while. Definitely don't want to wait like we did on the Revilimid after it started have ill effects.

Thanks and all my best!