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JaniceR
MemberHi:
My Dad always gets fevers after receiving red blood. But we always tell the doctor about it and he gets checked that he doesn’t have pneumonia or some other infection, just in case THAT is what is causing the fever. They usually only last about 2 days, and after taking tylenol the fever goes away. He usually gets a fever at night after getting red blood. HOpe that helps.
JaniceMemberPigduck:
What did your father take to clear up the fungal infection in his lungs? My father’s on v-fend and he’s still in alot of pain. How long did it take for the fungus to clear up?MemberJack – He was at NYP in Feb. 06 for two rounds of clinical trial. BMB in May 06 came back showing increased blasts. May 06 went on just Dacogen. BMB in December came back with NO decrease. Started Dacogen with Valproic Acid in Feb. 07. Not a clinical trial, but it is approved. Looks like it’s helping because his blasts have DECREASED!
Russ – YES! I did get your email and that’s great that he replied… and I like his advice to you! Best of luck and keep me posted.MemberCarl:
Carl:
I was just on the board reading old posts. I saw your post that dacogen did not help you. My father was on dacogen from May 06 to Jan. 07. When he got the BMB back in Jan. 07 they told him that it didn’t reduce his blasts at all and they had to look into other options. I think his blasts actually increased because when I looked at the report it said 80% blasts. We took him for a second opinion with Dr. Goldberg in Hackensack, NJ, who was kind of doom and gloom and told him he’s very lucky he’s still alive (RAEB-T – Jan. 06). He suggested Dacogen (since he tolerated it well and had no side effects) and adding Valproic Acid to it (a pill people take for epilepsy)…keeps the dacogen in your system longer, giving it more of a chance to work. Dr. Goldberg gave all this information to our doctor in Morristown. Dad’s been on it for three rounds and his bone marrow biopsy just came back with 12% blasts. Our doctor is thrilled at the results. I just thought this information might be of use to you. And, by the way, I don’t believe that this is a clinical trial. My dad didn’t sign up for a trial. The one doctor just suggested it to the other and ordered it.MemberHi:
I just heard that the Valproic Acid added to the Dacogen treatment keeps the chemo in your system longer thereby giving it more of a chance to work… slowly. Valproic Acid is a drug used to treat people with epilepsy. Regardless, our doc is thrilled that it actually reduced his blasts since the Dacogen alone was only “holding them at bay.” He goes to the doctor today, so maybe he’ll have more info. for anyone who is interested. He’s still having trouble with the fungal infection in his lungs… if anyone has any advice or info. on that, please let me know. It’s probably due to all the different antibiotics he takes on account of his counts being lowered by his treatment. Or maybe because they live in a flood zone next to a swamp. I don’t know, but it’s making me very nervous that it’s not getting better yet.
Thanks,
JaniceMemberRuss: It is not a clinical trial. I believe that Medicare does cover the cost. I’ll get back to you on what his dosage is. I just emailed you Dr.Goldberg’s email address so that you can get in touch with him. He’s great and he’s not even our doc!
MemberHi Lynette!
They are discharging him from the hospital this morning! Yay! Happy Summer!
It was great to hear from you. Hope you and your Dad are well.
JaniceMemberMaureen:
My father still gets Neulasta shots while he’s getting the Dacogen w/Valproic Acid. It helps.MemberHi Neil:
I got it from my mother, so I’m not sure… she probably isn’t either. She just said that they are taking extra blood to see if they can do something with the chromosomes… it’s new… and she thought it was TNH…???
JaniceMemberHey PigDuck! My dad’s other doctor told him that doing the Decitibine (since he tolerates it well and it’s “holding” his AML at 20% blasts) and adding the Valproic Acid (a pill) is a good option for him… and he could go 10 years like that the doc said. The one doctor is a real “upper” and the other is a real “downer”. The stronger chemo that you mentioned is indeed worrisome and we are not willing to take that risk. If he didn’t have any other option and was as young as your dad, it’d probably be a real good chance at remission.. why not a SCT as well? He’s still young enough? A good friend on this forum’s (Lynette) mother just passed away from complications after getting the strong chemo. It worked for her (putting her into remission), but the chemo weakened her heart and I guess since she was in her seventies, it was just too much…she was our angel though (and our hope). Although my dad is in good shape, he is older and stronger chemo may not be a good option for him. If the AML got out of control, we would have no other choice and have to try it.
Anyway… since your dad is still young, he’d probably do just fine on the stronger stuff and could keep him tx free and in remission for awhile… and when it does come back, they’ll have another new drug out to “hold” it for awhile (and so on). I try not to worry and think about it so much… We travel with him, make memories with him and do all we can now (while he’s still in good shape)… no regrets and hope for the best. Good Luck to your dad, I’m sure the chemo will work for him… he’s so young!
JaniceMemberRuss: My dad has also just gone from MDS to AML. Here’s the options the doctor email me for my father (he’s 72).
In summary, he has two major choices.
Low intensity therapies to control his disease for some time (maybe a year or two at best). The benefit is low toxicity and outpatient. Since he is tolerating decitibine adding Valproic Acid (also known as depakote) might be reasonable. This combination has been reported by several groups including a recent study in Cancer by the MD Anderson (Houston) group. Low dose melphalan or mylotarg would be other leukemia treatments with non-curative intent if this does not hold the leukemia cells in check.
High intensity treatment designed to cure. But also high risk. One strategy is standard leukemia therapy in the hospital for a month with daunorubicin (or idarubicin) combined with ara-c (cytarabine). This part has a 5-10% death risk. If the leukemia cells are decreased, the next month a mini-allogeneic (donor) transplant could be performed. Based on a recent overview from Europe, about a third of patients with MDS with this strategy are cured, a third relapse quickly, and a third die from complications. So one might shorten ones life with this, but this is the only hope of long term survival.
Unfortunately neither choice is great. So it comes down to where does he want to place his risks versus benefits.
Hopefully this is helpful.
Stuart L. Goldberg, MD
MemberThank you all for your help. I am printing your replies out and giving them to my parents to read, so THEY can make the decision, not me. I appreicate all your input!
MemberCongratulatons Marsha! We tried getting tickets yesterday (on-line)for Segar at MSG but got locked out. What a GREAT way for you to celebrate!
MemberHi… My father has been on Decitibine (Dacogen) since May. He gets it through a regular IV for five days in a row as an outpatient. It takes about 1-1/2 hours. He used to get it every fourth week. Now he’s getting it every sixth week. His blasts went from 80% down to 15%. The second week after his chemo, he needs to get alot of platelet tx and red blood tx. His numbers start to come back ON THEIR OWN by week four… which is why they are stretching out the time inbetween treatments to six weeks now. He gets another BMB in December and we’re hoping the results are 0% blasts… we’ll see. They recently gave him something to prevent iron overload, but that’s only because HE asked about it since he was getting SO many tx. If he didn’t inquire, they probably wouldn’t have given him anything. They did a check after he asked and said “oh yeah, guess it wouldn’t hurt to give you something for iron overload before it gets out of hand.” It pays to be as knowledgeable as possible with this disease and NOT to leave it all in the doctors hands with no questions asked. Don’t be afraid to Ask as many questions as you can. They’re doctors and they ARE getting paid.
MemberI’m in East Hanover, which is Morris County.
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