[Bec]

Thank you Mary for your kind words.

This new site is a litlle difficult to get on so I just figured out how to get back on.
Please send me the info about AFLAC. My attorney sister said it listed MDS not being covered but I argued that we may need to look into it further.

Thank you for any help. Dad left Mom enough money to be comfortable but we want to receive any money she may deserve.

God bless you Bec

[Bec]

Welcome Rose, I like to tell new comers about the search engine on this site. It took me a year to find it and it is so valuable. Type in any questions you may have.

I will be praying for you, your Dad and family
Bec

[Bec]

Dear Jay, I am heart broken to read your post and wanted you to know I will pray for you and your family.

We have raised a beautiful daughter that is in the 9th grade in HS. She has CP and walks with forearm crutches. Today we found out she was nominated as the freshmen representative for Homecoming Court. She has danced, tried out for cheerleader ( which she did not make but neither did 40 other girls), gymnastics, swim team, takes piano, walked the mile in gym with her crutches, wants to drive and so much more.

We have raised her with three brothers. I have told her she can have her five minute pity party if she wants but that is all that is allowed in a day. She complains about wearing her leg braces but I tell her one brother has to wear a retainer and head gear, one brother needs a brain vitamin(ADD) and the other has allegies and has to take breathing treatments. We all have our issues.

But do not think I have not cried when she can not keep up with some “witchy” girls and they run off and leave her. I pray alot….. but she is beautiful, happy, and loves life.

My Dad and Mom have always been two of Carolines top fans. Dad has been battling MDS since 2000.
We feel very blessed that he is still with us.

I just wanted you to know that we understand. We all have different crosses to bear but like you I will count my blessings and keep my crosses.

Don’t forget to take care of yourself too.
Bec

[Bec]

Hey Russ, I called Dad and he is on 5 mg of predisone. The reason the Dr. decided to try it was because he noticed that everytime he got pnemonia they put him on steroids and his counts went up. Now he takes it every day. Seems to work for him but remember we are all different. My Dad has no blast that we know of. He also still takes 60,000 mg of procrit. Today he went to Dr. and hgb went up to 9.5. His other counts were good also. (some low, some high but overall good) He has now gone 16 weeks without tx. WE are celebrating…
I hope this helps. Dad did not like idea of steroids all the time but the alternative was not desirable either. His Dr. is amazed and really does not what is going on. If you read my past post, you will see how sick he has been.

I keep praying for cure..
Bec

[Bec]

Hey all, I just updated my profile at bottom. Dad is doing great and just hit year 7. He is doing better today than he was when he was first diagnoised. WE contribute it to God, positive attitude, still working and moving, low dose of steroids and procrit, and prayer.

Sometimes I hesitate to post because Dad is doing so well. I do not want to sound proud or “braggy”. But I hope his progress will help someone else live better and longer. AND to never give up hope. Dads tx have been needed every week in the past. He is now going on week 17 without a tx. He has to go visit his tx nurses because they miss him HA

We feel very blessed and send our prayers to all.
I pray for the whole web site.
Bec

[Bec]

Hey Jules, My Dad was diagnoised 7 years ago with RA. Do not beleive the stats. He is doing better today than he was when he was first diagnoised. Ignore the gloom and doom Drs can tell you but sift through the valuable info on this site. FIND a GREAT DR. This would be a Dr. that knows MDS but if you can not find one near then look for Dr that is willing to try new things and willing to accept your suggestions. I contribute this web site to my Dad being still alive and healthy ( and of course much prayer). The comments on this site have lifted him up at times and given him hope when he was down.

Remember, this is all overwelming at first. But for specific questions, put them in this search engine and it will help. Dumb me did not find search for a year so I tell all to check it out.

Also remember that everyone with MDS is different. Hopefully, your Dr. can start you on a regiment that will keep you tx free forever. There is so much research going on.
I will pray for you.
Bec

[Bec]

Dear Terri, I have not been on much lately and was sad to read about Bob. You have been such an inspiration to this web site. Your love for each other was evident in your writing. Please know I am praying for you and your family.

Bec

[Bec]

Hey Anne, My Dad also struggles with night sweats. He tried wicking pjs and shirts but did not help. It may help you since all patients are different. {lease let me know if the ranitadine works. Thank you tor sharing

Bec

[Bec]

Dear Alex,

My heart breaks for you and your family. Please remember that your Mom will be with you by all the special memories she has left you. I will pray for you.

Bec

[Bec]

My Dad went to Dr. today. Apparently, Dr.s do not even know this is going on. He told my parents that this decision would not affect my Dad. If I understand the posts above, Dads Dr. is wrong. Either way we are all going to write our Congressman.

My Dad is an excellent example of someone that procrit has helped. He was on it in 2001. He did not like its side effects so he chose to discontinue. After trying many other options, and after Dad began requiring bi-monthly and sometimes weekly tx, he asked for procrit back. He would rather have side effects than get tx so often. We do not know why, but Dad is now going 9 to 12 weeks without tx. Today his blood had only dropped .02 points since last week. His blood use to drop more rapidly.

My whole family is writing….

We need procrit.
Bec

[Bec]

Thank you Chuck for the web site. I went right to it. A few things have changed since my Dads diagnoisis.

Bec

[Bec]

Hey Ira, This sounds wonderful. I love to read good news. I hope the trial continues to work. Thank you for sharing. Please keep us updated.

Bec

[Bec]

Hey all, My Dad went on procrit for 6 months in 2003. His Dr. took him off of it because he was having headaches, sores and other problems. We thought these symptons were due to procrit so asked Dr. to removve Dad from procrit. This was before we started txs. We think we may have made a mistake removing procrit because my Dad started having to have tx every two to three weeks.

Two years ago, after a bad heart surgery, Dad went back on procrit and last week set record for 11 weeks with no tx. We think the combonation of procrit, predinsone, and vytorin and prayer have contributed to Dads better health. Note that all these meds were prescribed by three different Dr. Dad gets 60,000 units of procrit weekly. How many deliliters is a unit???

Who do we contact to fight the discontinuation of this drug? Please let me know.

Thanks to you all
Bec

[Bec]

Dear Eve, I am so so sorry about your Dad. Some Dads are extra special. I only hope the wonderful memories you made together will remain.

Thank you for the info about infections. Dad is going on week 9 tx free but he is coughing. I called him immediately. He had alreeady talked to his Hemo.

Thank you for all your posts in the past. My prayers are with you and your family.

Bec

[Bec]

Hey Bill,

Great news… Maybe you can enjoy the simple things in life like a smart mouth teen. LOL

You are so blessed.. Billy will stay in my prayers.

Bec

[Author]

Posts