[cherylm]

Lynette,

I don’t know if they are still offering that one, but I understand they are going to start a new trial with Clorfarabine. I’m making an appointment with Dr. Eric Feldman at Cornell NYC to see about that. I have been in touch with a few doctors at Anderson TX and they sadi they’ve been doing a clinical with Clorfarabine and have had a 50% success rate. Thanks for responding!! I’m at this point looking into all possibilities. Cheryl

[cherylm]

Jaxem,

Dad is 70 and his current onc is not upbeat at all. I think sometimes she gets my dad more depressed than the actual mds! I spoke to her recently,after my dad’s last visit when she told him she had no further treatment options for him. I asked why she didn’t even consider trying dacogen and her answer was it’s the same as vidaza and if that didn’t work neither would the dacogen. I told her I begged to differ, but she would have nothing to do with all I’ve read. I get so fed up sometimes!!! Hey, I read about your wife on a seperate post and wish you the very very best!! Cheryl

[cherylm]

Hi All,

My dad got his bmb results yesterday..after 5 rounds of vidaza + ms-275 we got nowhere. Blasts have gone from 3% to 13%. His doctor, who I’m a bit miffed at, pretty much sent us packing ! She said they have no other treatment to offer and that we shoud look for a doctor in Philadelphia. Now, don’t get me wrong, my plan to was get to University of Penn if the treatment didn’t work out, but it ws her attitude that floored me. Anyone out there treated at U of P who can put me in contact?? Dad is now RAEB-2 and very down. Thanks, all. Cheryl

[cherylm]

Hi All,

Just a follow up to my original post: My dad had started the clinical, vidaza and ms 275, in May. We only made it to 5 rounds and his doctor pulled him out. His counts were taking a beating and they kept having to reduce the treatment dosage. There were no signs of improvement whatsoever. So now they want to try just vidaza and other meds as needed. On the clinical all he could get was supportive treatment and because he needed so many blood tx he is becoming overloaded on iron! They did another bone marrow biopsy yesterday to check on the progression. His last results were blasts at 8%; RAEB-1; from May. So now we haqve to wait to see the latest numbers. I hate this……Cheryl

[cherylm]

Hi Bob,

I’m happy the Vidaza is working! I don’t know what’s up with my dad. He’s hoping to start his 5th round of Vidaza this week. He was supposed to start today but his counts are too low. He get blood transfusions every week or tow as well. Now we learn his iron is getting too high. So far we have not seen any change in his counts. It’s so depressing. His platelets are always low, 8 today. So he gets them alot too. His hemo is low as are the reds and whites. I keep praying the Vidaza will kick in but after each treatment it gets harder and hardes. Keep the board posted on your progress. I see you’re from Philly. What doc do you use??’

Cheryl (northeast PA)

[cherylm]

Hi all; I actually just got a call from my mom. She is at the onc with my dad. His levels are all down again and the doc said too much iron from all the transfusions. She is supposed to give him an oral med but my mom couldn’t remember the name. The doc knows I keep track of everything so she is sending me some info home. I wonder if it is going to be the oral chelaton. My dad is currently on Vidaza. We were hoping to start round 5 toady but his counts are too low. So instead he got a unit of blood and some platelets. Another unit tomorrow, then they should be able to start round 5. He just had a port-a-cath put in 9/21. I’ll post again here once I find out what he is going on. My mom said the doc said it was very expensive and she had to check his insurance. We’ll see….

Cheryl

[cherylm]

Jack, what is the mini transplant you mentioned in your response above? My dad’s onc said he was outside the age limit for a bmt. She didn’t say anyting about a mini transplant. If it is something to consider, I will mention it to her. She is actually very good and does keep on top of the latest mds treatments even though the cancer center in not a COE. You can email me directly if you like, or just post the info here. Thanks Jack. I appreciate all your input

[cherylm]

Hi Beth. I jst read you post and I’m pretty new here, too. Posting for the same reasons. My dad is in his early 70’s so a bone marrow transplant is out. He’s on his 4th round of Vidaza but I guess it takes a while to see if it is going to work. I’m no way up on this crazy illnes like the others on the board but have learned tons just by reading all the posts. There’s info out there but it all reads the same. I think this is the hand down best info source because the people are real and live what they post. You can email me any time to compare notes or just for emotional support. My family is really scared also. I would really suggest you ask your husbands doctor about vidaza or the other durg treatments mentioned on this forum. If the doctor hasn’t worked with any other mds patients, maybe he or she could reach out to another doc who has. Cheryl

[cherylm]

Thanks for the information Jack. I really appreciate it. I see your wife did vidaza, did it not work for her?

Cheryl

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