Forum Replies Created
I am so glad to hear that you have happy news.
You are absolutely right, we all have to savor the good little minutes in this journey.
Here’s hoping that Revlimid is the key for your husband.
Mike and I both will have you and your MIL in our prayers. May you all be blessed during these difficult times.
Mike and I are deeply sorry for your loss. You have all been such an inspiration through these difficult times.
We’ll remember you all in our prayers, and wish you strength in the days ahead.
Mike & Sandy
This is unbelievable, I live at Lake Holiday.
Mike goes to Dr. Rodney Nelson, Director of Oncology at Delnor. He has an office across the street from the hospital at the Cancer Center.
Thanks Chuck, you are right. There is a whole new Health Committee as well as a new Chairman.
I will add a link to the website to the page they are all listed at.
Thanks so much for sending all the support letters. I guess I learned a lesson, that everyone does not respond to a post, but still goes the extra mile.
My husband, Mike, is also RAEB and on a medium dose of Vidaza right now. He does feel very tired the week he is on the medication and almost a week afterward.
Barb is right, low platlets does not cause tiredness. His HGB (hemoglobin) is probably a little low. Check this out under his RBC counts.
Mikes platlets are under 20 most of the time, but his Dr. says that is not to blame for tiredness.
The world sure is small. We live in Sandwich.
Mike is being treated at Delnor/Cancer Center for his Vidaza infusions.
We may pass your house on the way! HaHa.
Mike and I will be praying for your husband as well.
Mike is receiving a 100mg. by port for 5 days this week. He is tired, but I think getting a little stronger.
Here is hoping that they both will do well.
Thanks so much for responding to the support letter. I have heard from others that they had well sent their letters as well.
BKWits and Zoe – Thank you both so much for sending your support letter. I have heard here and on other of my posts that there were many sent.
I knew we were a good group! BKW, we must live in about the same area. Dennis Hastart was my representative too, until some re-apportionment.
No apology necessary. Your actions were far more important.
I am only doing a small part, but I am doing what I can. Thanks, and may we as a group, be successful in all our battles at home and in public.
I am sitting here with so many thoughts and questions running through my mind. (What I have left of one!)
Mike and I both strongly support the idea of government funding for research and development that will lead to a cure for this dreaded disease. We have been working on trying to get some attention for MDS from Congress, and letting people know what an insidious group of diseases these are, since a week after his diagnosis.
We are in the fight for Mike’s life, just the same as most of you are with your loved ones. Our focus has been on trying to do our part, since it keeps us from the thro’s of depression and worry to some extent. I am not saying any of this for self praise, but because we have two sons in their early 30’s and want neither to have to experience what we are.
We received an email a few days ago, as maybe many of you did, about a push to get Congress to set aside more funding for research in blood cancers in this current budget. I posted the message on this website and received only one response. I was amazed, but figured surely others were contacting their Representatives and Senators to help this group.
The bottom line is that Karen is right! No one has a more vested interest in this disease than us.
By reading the posts on this forum, it is evident that there are many intelligent people in our group, who are capable of making a difference here. If Mike and I can be reponsible for getting hundreds of letters to Congress, from relatives, friends and new contacts we make, so can all of you.
I think two of the things that would be best for us all to remember are these: “No-one is as smart as the group of us are.” “There is Power in Numbers.”
We would personally be interested in spear-heading a larger campaign to get the attention for this disease that we all deserve. If anyone else is interested, please go to our website, http://www.FightMDS.com and contact us.
In the meantime, thank each of you for sharing your information on MDS, your well wishes during a hard time, and most of all your prayers.
Thank you so much. We just returned from the Dr. and Mike’s dosage has been moved to 100mg. per dose. (Done by port).
He is still very tired as his hemo is at 7.5. But that beats the 6.3 he had been experiencing. His WBC is at 2.3 and his platelets at 16. I admire his courage as he has kept going without transfusions.
Both of us had considered stopping the medication, (started Jan. 15th) but we thought better if it. Your advice comes at a very good time.
I have talked with the people at Pharmion, and they assure me, that it takes a different amount of time for the medication to become effective for different people.
We will keep plugging away. Thanks again.
Thanks Nicole! If you could share this with everyone on your email list, we could generate a lot of support.
Russ, been thinking of you and praying hard. Mike is also on Vidaza, and when they started treating they felt his AML had relapsed.
Yesterday we were told they think maybe it is MDS and not relapsed AML.
All of this is so emotionally draining for all of us. Keep the faith and know you are being thought about and wished the best, from all over the world.