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californiamom
MemberHello,
I understand where you are, it’s all overwhelming at the beginning, but it’s good that you went to a center of excellance. I can tell you from my dad’s experience he did so well on the Vidaza and the fact that it can now be intravenious is much better. The only complaints my dad had from the Vidaza was the injections site soreness (this was before the intravenious) and he had some diaharia. His counts all went back up and he had a productive time. However his doctor thought he could be taken off of the drug since his counts where so good, so I would recommend not taking him off if it helps. As for the Dacogen he took this once and it plummeted his counts and they never came back up, he eventually had AML. You might want to read other posts that talk about Dacogen, but as for my dad’s situation he did very well on the Vidaza.
Good luck with your dad and his treatment, he will be in my thoughts.
KirstenMemberHello LuAnn,
I’ve just read your posts and I’m with Jen, the same thing happened with my dad. He started Dacogen, then got pneumonia and had a funal infection in his lungs. They put him on some treatment for the fungal infection, but it’s so potent you need to watch his kidneys and liver. Good luck with your appointment, I’m hoping it all turns out well.
Kirsten
MemberKatie,
I am so sorry to hear of your dad’s passing. I’ve been following your dad’s progress from the beginning and was hoping it wouldn’t end like this. I’m so glad to hear he got home and had his family around him, I know that’s what my dad longed for in the end and was so happy we made it happen. My thoughts are with you and your family.
Kirsten
MemberKatie,
I’m so sorry you and your dad are having to go through this. I was so angry and overwhelmed when my dad got progressively worse, but looking back now I’m so blessed to have been able to be there when he really needed me as he’d always been there for me. I was so hoping for better news for you, I am thinking of you and your family. Please tell your dad everything you can think of and just be with him. My thoughts are with you and I hope he gets home soon.
Kirsten
MemberHello Katie,
I’ve been reading your posts since you started on this forum. I’m so sorry you, your family and your dad are having to go through this. It’s great that you will be spending all weekend with your dad, talk to him and listen to anything he has to say. Make sure he keeps the fluid intake. I remember my dad saying he thought he would never get out of the hospital, but after we were told there was nothing else to do for him, he said he wanted to go home and we got hospice and a hospital bed the same day and brought him home. The nurses said they’ve never seen a family get things done so quickly, but we wanted to make sure he was coherent when we got him home. I am hoping for the best for your dad, don’t ever think miracles can’t happen. I am thinking of you this weekend.
KirstenMemberIf the Vidaza is keeping his blood counts in check and he’s active I would suggest he stays on the Vidaza until it stops working. I know with my dad it was working so good that the doctor decided to take him off and that’s when everything went down hill. I would definitely make sure your doctor is experienced with MDS, as my dad’s was not, but he like him.
Good luck, I hope everything works out for you both.
Kirsten
MemberBob,
Hello and I’m glad Vidaza is working for you. Just some information about my dad and Vidaza. He was on Vidaza and it worked very well for him, his counts were stable and he only had a little diarrhea. His doctor didn’t know what to do either, whether he should wean him off or keep the Vidaza going, so he weaned him off and my dad got worse. Also, once you’re off your body doesn’t react to the drug as well again, so my dad was put on Dacogen, which put him into AML. I would recommend staying on the drug since it’s working and you don’t really have any side effects, but that’s just my two cents.
Good luck with everything and it sounds like you are doing great.Kirsten
MemberTerri,
I am so sorry to hear about Bob passing away. I was following your post all the time as my dad had the same diagnosis of RAEB. I can only say my heart aches for you and I hope you have a good support system. We are always here and I’ve found it helpful in my grief to come back to this forum every so often.
Bless you and Bob.
Kirsten
MemberKaren,
I am the same and seem to come and browse the site looking for some good news for others. It has been 3 months and I was just saying this summer seems to be a blurr. Sometimes I catch myself thinking he’s on vacation and there are times when I think he would know the answer and if he didn’t he would always find it for me, even though I’m 37 years old, I still turned to him for information. I worked with him and miss the daily hello’s what are you doing this weekend? I know we will all make it through this horrible feeling, it just feels like there is so much time left and he won’t be apart of those memories and that makes me sad.I’m glad you got a sign from your dad saying he was fine, and what a great day to have one. Please know you are in all of our thoughts.
Kirsten
MemberMaureen,
I am so sorry to hear about your dad. It seems my dad was almost the same as yours, he responded to Vidaza very well, then the Dacagon just didnt’ work and he progressed to AML and passed away from complications to Chemo. It has been almost 3 months and I really feel for you and your family. You are definitely in my thoughts, and I am so saddened by your dad’s passing.
MemberMaureen,
I’m with Terri, I just lost my father to AML, but before he was on Vidaza and it worked beautifully, until the doctor tried to put too much space in between each cycle. He then put him on Dacogen and it was very hard on my dad, which in turn put his counts so low he got pneumonia and then AML. This is just my dad’s situation, but he was a young 67 and in otherwise good health. I hope this helps you and I am not a doctor this is just our experience.
Good luck to you and your dad.MemberThank you to all of you and I wish the best for everyone. This is a terrible disease and seems to take the best of the best.
MemberSandyB,
I do want you to know that your posts about funding for research in blood cancers did not go in vain. I myself sent the link on to all of my family, friends and co-workers asking them to send it on as well. I’m sorry if I did not respond on the message boards, I just got into a groove and started sending it to everyone I know. Thank you for posting the information and please keep up your hard work it is appreciated.
MemberHello,
My dad is 67 and was just diagnosed with AML. He is in the hospital for pnumonia and just finished his first round of Dacogen on Feb 26th.
It didn’t seem to be good on him, but he had no other choice since the Vidaza didn’t seem to be working anymore, the doctor waited to long in between the rounds.Suzanne, I wanted to know what chemo you did that sent you into remission and how bad it was on your system.
Russ, I was wondering if Vidaza stopped working for you that’s why you went to Dacogen and if your doctor had any concerns about doing Vidaza again with the PDX-101. My dad’s doctor says that the Vidaza and PDX-101 won’t work because the Vidaza shots had stopped working earlier.
We’re in California and had an appointment for MD Anderson, but aren’t sure if he will be able to go on the 28th.
Just some questions I thought I’d put out there since this forum is the only place where I feel I get good answers.
Thank you all so much : )
Trying to stay possitiveMemberHello clel
My dad just had his first session of Decitibine and now has a lung infection and is cold. We were even in Hawaii for 10 days and he still was cold, his red and platelets were down, but his white count was a little higher because it’s fighting the infection. I would like to know if this sickness is likely after every treatment. He did really well on the Vidaza but the doctor waited to long in between treatements and it seems it doesn’t work anymore. We are thinking of maybe trying the Vidaza that has just been approved through IV. He had to cancel his appointment to MD Anderson because of the infection and we hope we can reschedule a new one soon. Thanks for any information we are in the same boat.
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