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kls
MemberI’m so sorry for your loss. I have been in your shoes and I totally understand your feelings. By the time the end is here, you are ready for their pain and suffering to be over. Time will heal your pain.
MemberYes, my Dad had RARS and it progressed to AML. It wasn’t as clear to us as to when it progressed to AML. I thought it was all based on blasts…. however,his blasts were still not that high. We heard terms like “it is heading towards AML” .
When Dad was needing more transfusions because the disease was becoming more aggressive(this is when the transformation was taking place), we decided on a stem cell transplant. I can’t tell you what day his RARS turned into AML. However, his death certificate said AML. I guess my suggestion to you is try not to get too caught up with the types because your Dr. will keep treating it in the same way, just more aggressively as the disease progresses. I wish I could wipe away all your worries and concerns…..I’ve been in your shoes. I’m wishing you well….KristiMemberVery interesting, Russ. Thanks for the article. How are you doing? Is the Dacogen treating you well? Kristi
MemberHi Katie,
I agree with Lynette’s posts…..your story seems so familiar. It is hard to think about someone else going through this same situation. I want to tell you that these hard and awful times will turn out to be special times someday(hopefully a long time down the road). You have been there for your Dad. It sounds like you are spending as much time as possible with him. Be proud of yourself!
At the end of my Dad’s life, a Dr. walked into my Dad’s room and saw his entire family standing around him. He said the nicest thing…he told my Dad “You are a rich man, Mr. Lutz, to have such a supportive and loving family.” Those words still bring tears to my eyes, but I know that it is true. My Dad didn’t need anything else in this life. He just needed us to be there. He passed away about 6 hours later.
I’m hoping for a miracle for your Dad. I check often for your story since it reminds me of my Dad. God bless you and your Dad!
Thinking of you,
KristiMemberHi JAS,
Just a little tip that may be helpful to you….My family was also an hour away from the hospital. Our hospital offered reduced rates at many hotels in the area. The hospital had to set up the stay, which was offered to all cancer patients and their families. During a snowstorm last year, I drove my parents to the city and they stayed there for a week while my Dad received treatments. One less worry for my Dad and ME (his driver). We used this service a couple other nights too. Just a thought! KLSMemberI agree. We were told that my Dad would continue Vidaza as long as it was working. Maybe a 2nd opinion would help. Good luck!
MemberHi Jen,
I’m so sorry about your Dad. I’m not too far ahead of you on this road…..I lost my Dad on Aug 22. You have my sympathy…..KristiMemberHi Maureen,
My Dad was diagnosed with AML and always had very low WBC. Good luck trying to figure this crazy disease out. My Dad passed away about 2 weeks after yours. You have my sympathy. KristiMemberHi Beth,
I would suggest that you ask your Dr. to recommend another Dr. at a center of excellence. My Dad dealt with a Dr at a smaller hospital for about 2 years until his plan needed to be more advanced. His Dr. then recommended that we move onto a teaching hospital that had clinical trials to offer. Both Drs. worked together. He traveled to the smaller hospital(Edward Hospital in Naperville) to get his weekly blood checks and transfusions. Then he traveled 1 1/2 hrs. to receive chemo, bone marrow biopsies, etc at the teaching hospital(University of Chicago Hospital). All info was shared with both Drs. My Dad felt the same way about his first Dr…….he like him and hated to drive farther for another Dr. Like I said, they worked things out so that he only had to travel farther for the procedures or chemo that his regular oncologist couldnt provide him. Does his oncologist feel as though he can handle everything himself? We were fortunate enough to have a Dr. that let us know when it was time to move on to a more advanced hospital. Good luck! KLSMemberHi,
Does the Dr. give your Dad an idea of which one to choose? It is very hard for the patients to know which to choose. My Dad’s Dr. told us three options and we had time to research them. Then he ended up telling us which one he thought we should do, and we went with his advice.
Do they know what kind of MDS he has? That usually helps them choose the course of treatment.
I know how you feel about a healthy Dad that is suddenly given this diagnosis. My Dad was the same way. There are so many things they can do now so keep your spirits up!
Good luck! KristiMemberMy Dad’s Dr. orders a bmb every 3 months. I think that is the only way to check progression of the disease. It is great that your Dad’s platelets are the only part of the blood involved with the disease. That is better! If his Dr. is recommending no treatment, he must be doing ok. Stay involved with your Dad’s treatments…..it will be good for both of you. Good luck!
MemberTerri,
His Dr. called him with this bit of information. His appt is on Monday when she will go in detail about everything. I just cant stand the waiting game. Dad said he didn’t ask the name of the chemo because he thought they were still deciding on a plan for him. It sounds to me as if a plan has been made if they know he will be in the hospital for 3 1/2 weeks. Thanks for the info….It makes me feel a little better that the heavy chemo is part of the whole plan for other Drs. I guess I need to be patient until Monday!!!! KristiMemberMy Dad is 72 with RARS. My Dad seems to be doing well, except his transfusions are weekly again. His WBC ranges from.7 to 2.0 at his best. So we worry about germs and sickness.
His last bone marrow test(3 months ago) showed that his disease had changed from 5% blasts to 1% so we thought everything was going well with the clinical trial.
Then he got sick with a UTI and was hospitalized for 12 days. A bmb was ordered and it showed “more cellularity”.???????
Now the plan is to try a more aggressive chemo and he will be in the hospital for 3 1/2 weeks so that they can monitor his blood counts.
My question is…..what chemo is given for 2 days followed by a lengthy hospital stay? Any ideas out there??? Thanks, KristiMemberHi Russ,
Like others, I see many of your posts. I’m usually just a reader but I wanted to let you know that my Dad is currently taking Vidaza and pxd 101. He also goes to U of Chicago, and he was referred there for this trial. My Dad has had 4 rounds so far and has handled it all very well. The last bone marrow test showed “some improvement”. He has had no negative effects so far. His main problem is his low wbc. Good luck at U of C. If you have any questions, I’ll try to answer. KLSMemberMy Dad just finished his 3rd round of Vidaza. His Dr. told us that it is good to wait an extra week because it gives the cells more time to recover from the chemo. It makes sense! We are starting to see improvements in his counts….how is it working for your Dad? Any improvements? Try to trust the Dr. Waiting 5 weeks is working for my Dad. Good Luck!!
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