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choijk
MemberHi Stephen
Here is the information to the Las Vegas Convention. It is sponsored by the AA & MDS foundation and the convention is held from August 15-17. Attendance to the convention is free if you book your hotel room ($139 + taxes).
https://www.toad.net/~aafa/aplastic/information__hope/patient_and_family_c/2007_patient_confere.php
MemberStephen,
It is so exciting to hear that another MDS patient is doing so well! I wish you continued success with Dacogen! Hope to hear from you soon!
MemberHi Shellbivens,
Congrats to your first post. It gets easier with each post. =)
I know what you mean about your dad’s days sitting on the recliner and waiting for your mom to come home to have dinner. My dad is the same way.
I’m sorry that I can not be of any help with some of your questions, but I will be attending the MDS convention with my parents in Las Vegas this August. Hope to meet you there.
MemberHi Bob, do you mind sharing how you old you are? I am always interested in knowing how old patients are, especially when they are still going on strong after being dx awhile back.
MemberOh my gosh, I cannot believe that’s how they responded. I am with J.claire, I will never read that magazine again.
I commend you Sandy for all your hard work to get the awareness of MDS out. I been wanting to do something too from my end. I’m currently not working nor going to school so I have the time to either volunteer or do something! But I just don’t know what to do. I’ve signed up on couple of websites to be a volunteer but haven’t heard a response.
I have a friend childhood friend who I am remain still close with, whos a reporter in Springsfield, Illinois and asked her how I can get the awareness of MDS out to the media. She told me to contact one of the local news stations. We’ll see what happens. But in the meanwhile, I will continue to spread the awareness by word of mouth…. Thanks for all your hard work Sandy. You are making a difference in this world.
MemberWelcome Beth. I am a new member to this forum too and I can tell you that you will find support, encouragement, words of wisdom, and most of all, love, from everyone on this forum. It is a scary experience but continue to research and try to learn as much as you can. I would be more than happy to share what I’ve learned thus far with you.
MemberCampbell,
Your husband fought a good battle. He is now in heaven with the Lord but his spirit will always be with you. I will be thinking and praying fr you and your family during this difficult time. But praise God. He reveals himself in mysterious ways especially to those at the times of need.MemberJan, I am so sorry. My deepest sympathy……..
MemberThanks again Neil for answering my questions. Our hematologist indicated that my dad would be considered RA if it was under the FAB system. However under the WHO system, he indicated that it is possible that he is RCMD because it seems like 2 of his lines are affected – rbc because of his low hgb and in regards to his wbc, I forget. I usually write down everything what the doctor indicates but this was in the beginning and I was so in shock that it was a lot of information to process. If anyone can give me any other insight to CMML, it would be great. Thank you again for everything!
MemberCampbell,
My heart is breaking as well as I read your post. This is a terrible disease and its even worse when the person you love so much is in pain. I will definetly be thinking about you in the days ahead and will be praying for you and your husband. I am so sorry that you have to endure this and hopefully there will be a ray of sunshine soon again. May God be with you during these difficult days ahead. And if you want to vent or release some of your pain, you can always find support on this forum.
MemberPatti, thank you for sharing your experiences with all of us on this forum even when you are in grief. I know from reading through your posts, you were not only an advocate for your MIL but you were also a great daughter, companion, and friend to her as well. You did the best you could and I am sure that your MIL knew that. My condolensences to you and your family. I will be putting in a prayer tonight for you and your husband that God may give you peace and help you throughout this time of grief. God bless.
MemberHow is the serum ferritin measured? I just read somewhere that it is through a bone marrow biopsy. Is this true? Or can it be tested by a blood test? Thanks for the help.
MemberPatti and Dick, thank you for your posts and sharing your advice and thoughts. It has been extremely hard and today was one of those REALLY hard days. My family and I been having many good days but today… I just fell into a million pieces as the day I found out about my dad’s condition.
Dick, 81 transfusions! You give me hope and to the rest of the members who are embarking on this new journey. How is Exjade working? Any side effects? That is awesome that you get to speak with other MDS patients. Today when my dad was getting transfused, there were only 4 other patients near us and they were in and out. I assume they only received only 1 packet and I don’t know their reason for the transfusion. I wish I can talk to someone at Kaiser who has MDS that I can compare notes too. But this forum has been more than I can ask for – thank you all from the bottom of my heart.
Patti, thank you for continuing to give advice and always being more than helpful especially in your time of mourning. It means a lot. Although I’m recent ot the forum, I have been keeping up with your posts and you are one truly remarkable woman. “Mom” is in heaven smiling down.
MemberHi Eve,
I did consider Vidaza. My dad’s first hematologist actually first suggested it and we were scheduled for Vidaza until I made my dad a second and third opinion w/ other doctors regarding their thoughts on Vidaza. The other doctors found that Vidaza was “reasonable” but that was about it. The reason I did not have my dad proceed with Vidaza is because my dad’s white blood cells and platelets are still holding up – they are still in the normal range. I rather take a more conservative approach for my dad. I’ve read a lot of articles that although Vidaza has a great response, its only a remission and at most, the MDS progresses to an AML. I guess either way, even with a conservative treatment standpoint, there is always the possibility of transforming into AML but my dad is a low risk MDS at this time.
Thanks Eve for the suggestion. All suggestions are welcome!
MemberJan, I am so so so sorry that you and your mother has to go through this. I am so sad that everyone on this forum has to go through this. Today was a horrible day for my dad and I, and even though my dad’s MDS hasn’t formed into AML, it has been one heck of a roller coaster ride.
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