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JaniceR
MemberHi Daughter:
Dr. Goldberg in Hackensack Hospital is excellent. Also, Dr. Papish at Morristown Memorial Hospital. Where in NJ are You?MemberOh yeah, Jim:
My Dad’s counts look like yours (doc says they are good) and he doesn’t need a porta-cath.MemberMy Dad hated the picc line when he was at NYP. He got a REAL bad infection from it. They just give him dacogen through a regular IV (each day a new one) for five days. When his treatment is over (after about 1-1/2 hrs), he leaves the hospital like nothing happened. He WAY too busy and active to have anything hanging out of his arm. When he was in for pneumonia, in the middle of the night in his sleep, he yanked the IV out and made a mess!
MemberHe got admitted to the hospital today and started with IV antibiotics until they figure out what/where the infection is. He has a cough, so maybe it’s walking pneumonia or bronchitis (?)
MemberHi Cathie:
My father has MDS and hasn’t lost any weight. He was also exposed to many chemicals. I think that is a factor. I heard the chromosome 7 abnormality runs in families (?) and my grandmother also had a blood disorder. I’m not much help since we are new here too (January 2006).MemberMy dad gets it just through a regular IV as an outpatient for five days in a row.
MemberHi: My Dad gets a steroid every time he goes for the chemo as well. He’s usually pretty yinged up that first week… gets ALOT of work done around the house with all that extra energy. He started round 4 today. His platelets came up on their own and the rest were all holding on their own. Of course, now that chemo’s going in, they will plummet again and next week won’t be a good week. He’ll be tired and feel “weird” (like he says).
MemberLynette: Your mom hasn’t had round four yet, right? It’ll start working for her too, I just know it will. She (and you) have been OUR angels in this fight.
Kristy: My dad feels and looks great (especially at week four)… that’s when he’s planning his vacations from now on. They’ll load him up with blood and platelets and away he’ll go! Week four, he doesn’t need to get anything… no blood, no platelets. Chemo week and the 2-3 weeks after he needs to get tx alot. We’re hoping now that they’re stretching out the chemo a bit, it will give him a little break at going to the hospital so often.
Carl and Russ: If dacogen started to “kick-in” ever so slightly with my dad (who has the dreaded chromo7 disorder… the worse one), it HAS to work for you guys!
Lucy: How’s your mom doing on it?I will continue to keep praying and keep my fingers crossed for everyone!
Love,
JaniceMemberHello All: I have some rather exciting news. The results of my dad’s BMB after three rounds of Dacogen are in. It has, indeed, eliminated more blasts and it is reversing the chromosome 7 abnormality. That’s something we all thought was impossible due to the drug-resistant attributes of chromo7. The doctor’s are now giving him dacogen every fifth week instead of every fourth because that extra week (week four) all his numbers come up ON THEIR OWN! Of course, they get pummeled right back down while on the dacogen and for three weeks after, but the fact that on the fourth week his own bone marrow kicks in and starts producing good cells is very encouraging. Platelets are still a concern since they don’t get above 40, but his HGB is up and he’s feeling great. And he can travel with this schedule. We are very cautiously optimistic at this point. Lynette… are you out there? How’s your mom?
-JaniceMemberKristy:
Thanks for sharing that, we did not hear of that “late bloomer” effect either. Interesting. I am keeping you and your mom in my thoughts and hoping her counts recover.
JaniceMemberSusi: You won’t really know just how bad it is until you get the results of a bone marrow biopsy and know if he has any chromosome disorders and what classification he is in. My dad was diagnosed in January with the worst one. His first treatment didn’t work. He started a new treatment in May and so far this new drug (dacogen) that just got FDA approved seems to be helping. Going to the MDS Center of Excellence is the BEST thing you can do. Good Luck to you and your dad.
JaniceMemberHi Lynette: So your mom has already finished round one of decitibine, right? How’d she do? Did she have any reaction at all? My dad usually doesn’t feel “weird” until the week AFTER his chemo… then after that, he starts feeling better. They did a blood test again today and his numbers were still up…even on the chemo. I’m scared to even think that this is actually working. Anyway, glad to hear that you guys are not driving into the city either… that’s a real pain. Best to your mom.
JaniceMemberHi Lynette: Sorry to hear about your mom, but if the Arsenic and Ara-c worked for her, I am sure the decitibine will as well. Does she have to go to NYP for it, or can she go to a more local hospital. My dad is receiving it from our local hospital and the doctor confers with Dr. Feldman from NYP as necessary. He goes for his BMB Aug. 18 to see if the decitibine helped at all. Good luck to you and your mom. Keep me posted and thanks for all your help and advise.
MemberWe just got back from a week long trip taking my dad out west… he played John Wayne (his idol) in Monument Valley… as “his” saying goes, “Courage is being scared to death, but saddling up anyway.” We thought for sure this morning when he went to the doc (after 10 days of NO checks) and to start round three of dacogen his counts would all be WAY down… WRONG! All his counts were way up! The doc and nurses were very excited and happy that he didn’t need to be transfused. Of course, now his counts WILL go down while on the chemo and for the first couple of weeks thereafter, BUT hopefully after the third week they’ll come back up on their own again. So.. he Started round three of dacogen and were just hoping, praying, and keeping our fingers crossed it works! COURAGE to all of you!
JaniceMemberDennis – My father’s had two rounds of Dacogen and when they started it, the doctor said make plans as if there’s nothing wrong with you. So… he went down the shore for a week and now we are taking him out west for a week. They give him a neupogen shot and tank him up with platelets and redblood so his counts go up threw the roof before he leaves… with the exception of his platelets (they don’t get up past 30)… and when I say “threw the roof”, I mean like a “normal” persons. Anyway… Good luck, enjoy your trip, and don’t stop living. Just be sure that you tell your doctor what you want to do and he should be able to make it happen.
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