[Mary4Mike]

Bob, watched the Mudder on Youtube. What tribute of friendship and support for you! Awesome!

[Mary4Mike]

Oh, Bob! Praise the Lord for your wonderful news on your 100 day biopsy. I have been praying that things were working in your favor after your last post saying that the cancer was back. I am sure that this has been a struggle, but yes, a support system is SO important……and as you mentioned, prayer in all things! Often the Lord brings these trials into our lives to bring us closer to him, to put out trust in him. It sounds like that is exactly what you have done. How is that little guy doing? I’ll bet that he is growing and changing everyday! I am sure that watching him everyday will give you strength and hope, too! I am going to google the sites you mentioned to check them out. Mike is doing well, thanks for asking. He retires next week! !!! Another BIG life change, but we are ready to embrace it and move on to our next journey. We feel so blessed to be given this second chance. You will continue to be in my prayers and please post when you can!
I am so happy for you and your family, Bob!

Mary

[Mary4Mike]

Ask your doctor for a prescription for a mouth rinse. It has a lot of good things in it (quite a concoction – can’t remember what all) and it may help relieve this. Let the doctor know!

[Mary4Mike]

Anne,

I agree with Lodesman that MDS is unpredictable. I really don’t know how your doctors can tell you that your MDS will turn to AML in 4 months. I have never heard of such a thing. There is always that possibility, but to say in a certain time frame you will have full blown AML is a new one to me. Perhaps your bloodwork is showing an increase in blasts and other indications of it changing, I don’t know.

Lodesman,

I am happy to read that Vidaza has given you a remission.

[Mary4Mike]

Anne,
With MDS it is hard to base your treatment decision on the success or not of other patients. Everyone responds differently. If the only option you have right now is Vidaza, personally, I would give it a try. It helped my husband for 15 months. I don’t have any information to offer about transplant without insurance. I know that transplant is very expensive, not to mention all the testing that has to be done before and after, and the medications that are needed after transplant. In the meantime, give Vidaza a try. You can always go off it if you have major side effects. My husband had no side effects from it. Just remember that it can take up to 6 cycles to see results.

All the best to you and let us know what is happening with you.

[Mary4Mike]

Bob, What a schedule, but it sounds like you have it under control. Thank God, for people who donate blood! Have you had to stop working or have you adjusted your life to the transfusion regimen? Mike never stopped working through this whole process, even the transplant, but, he works for a very understanding company and they have gone along with the chemo days, transfusion days, hospital days, etc. We are thankful. He is going to retire in February. That is going to be an adjustment, but hopefully a good one.

Merry Christmas to you and your family (if you celebrate it)

Mary

[Mary4Mike]

Bob, What a shame and Fred Hutchinson is one of the best. I noticed in your signature that Vidaza worked for 5 months for you. That was the only treatment that gave Mike a break from TXs for 15 months, but when it stopped working, it wasn’t gradual, it just stopped. Where does your HGB run with the transfusions? Do they have a hard time finding/matching blood for you? Mike never went too much over 9, but like I said before, he just got used to it. The MDS never affected his platelets or whites.

[Mary4Mike]

Thanks for the response, MSB .

[Mary4Mike]

I am not sure if I can help. Are you currently taking treatment? Sometimes this could be a side effect. Have you asked your doctor? I know this sounds obvious, but sometimes it seems like we are always asking the doctor and their nurses questions. Hopefully, someone else reading this may have a suggestion for you. One last thought, could it be hormonal? Not sure if you are female or your age, but is this a possibility?

[Mary4Mike]

Bob, Have your docs ever talked transplant? Is the Exjade keeping the ferritin down? You must be up there in the number of TXs. Mike always said that your body learns to live with low HGB. His was 18.6 yesterday! They are hoping that it will come down with the phlebotomies along with ferritin, but they have checked his bone marrow for fibrosis and everything else and have come to the conclusion that his body has really accepted his sister’s stem cells .

[Mary4Mike]

Hi Bob, I must have missed those posts and I am sorry to hear that happened. I have also noticed that the activity on this forum seems to run hot and cold.

I hope things are going well with you and that you are holding your own. We are headed out today for a clinic check up, phlebotomy, and a pulmonary function test. Can’t seem to get away from the needle pokes, but they are a lot fewer and farther between! We are thankful!

[Mary4Mike]

Bob,
You are in my prayers that all is going well with you, your wife, and of course, baby Hunter. You mentioned in your last post that you did a round of chemo. Has this pushed back the blasts? Where are things with you right now? I have been off the forum for a month while we were away and I have been anxious to hear how things are with you. If you check the forum, please drop a line or two and let us know.

Mary

[Mary4Mike]

If the comments are about me making the suggestion to look at the Marrow Forum, I really apologize that it is distracting. It is just that sometimes people come on here and ask for help and no one answers or responds to them. If I don’t have the answer, I offer the recommendation to try the Marrow Forum. It isn’t as if we have to show allegiance to one forum or the other. Besides, the other forum has much more info on transplants and there have been many questions about this subject here without much response.

I thought the whole idea of an interactive forum was to gain info. It is great learning things from the people that have actually experienced these things no matter what forum they turn to. The whole idea here is to help one another.

[Mary4Mike]

Patrick,

I am not trying to discount what you are saying this doctor told you, however, I don’t want anyone to have false hope over this either. My husband had no blasts and Revlimid did nothing for him.

Every treatment has a different effect for every patient. I am happy that Revlimid is working for some. I wish it worked for everyone.

Mary

[Mary4Mike]

Welcome to the world Hunter!!!!!!!!!! I am so HAPPY for you and your wife. He is your miracle!!! I pray that everything else is getting better for you, too. Have they added the donor cells yet? Your hands are going to be full now!!! (and your heart – life is never the same) All the best to you and your wife. Keep us posted when you can. I think about you often!

Mary

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