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Jack_dup1
MemberHola, Leticia,
I’m sorry to hear about your father. I was diagnosed with Chronic MyeloMonocytic Leukemia 8 years ago and was told that I had 10 to 60 months survival time when diagnosed. I can’t say that the last 8 years have been easy, but I am still hear.
JackMemberI have not posted for a while and am surprised that you have progressed this far. I wish you and Mike the very best during these difficult days a head.
Jack r.MemberHi Pam,
Sorry to hear the news, You have had a long battle and it certainly is not over with. Don’t you wish sometimes that you had never known about the MDS, I’m sure you have had some worrisome times over the years. You have been pretty lucky over the years, I guess if we were really lucky, we would not have been diagnosed to begin with. Hang in there and know we are pulling for you.
Jack S.MemberLook into her other meds. My wife developed a dry cough after starting Lotrel for blood pressure. As soon as she switched it, the cough stopped.
JackMemberThanks Sandy,
I guess people find bad news more interesting.
JackMemberHi Shari,
I feel better than I have in a couple years. I still have problems with fever, night sweats, tiredness.
For now I am in a sub-cat. of Myeloproliferative Disease called CHRONIC IDIOPATHIC MYELOFIBROSIS, I think this is from my marrow being in a hyperactive state (100%)for so long. I’m not sure what the plus side is, but there has to be one somewhere. I do feel so much better without the 6pd. spleen.
I think of your Father and you often also.
JackMemberHi Shari,
I feel better than I have in a couple years. I still have problems with fever, night sweats, tiredness.
For now I am in a sub-cat. of Myeloproliferative Disease called CHRONIC IDIOPATHIC MYELOFIBROSIS,MemberMary,
I forgot to mention that my dose is 40.
JackMemberHi Mary,
Dacogen experience has been mostly positive, main problem is fatigue after 3rd day, after a week or so I feel pretty good.
Platelets drop to about 11 then rebound to 130’s, have not seen those numbers in a few years,had a few platelet tx.
Hbg no lower than 9.0, 2 Tx.
Whites are a problem, usually drop to around 2, then increase rapidly. When I started this 5th cycle they were at 93.
I had a six pound spleen removed after the seconne cycle, what a horrible experience, they had to go in twice because of clots, glad I did it though.
Regards
JackMemberI have been on intermittent O2 for the last year, some times I don’t need it for as long as a week or two and then my 02 will drop to 70 and 80’s. I always use O2 at night. I have had several ct scans of lung, everything neg. They don’t have a clue what causes it. I also pass pulmonary function tests.
JackMemberI’m on my 5th cycle this week, it has alway been an actual infusion time of one hour for five days.
JackMemberI’m confused. Does it takes six cycles to work, or 6 cycles to see results from what the drug has been doing since you started putting in your body for six months ago. Were the first 5 months a waste since it didn’t help.
Just curious
Jack S.MemberHow long the drug has worked is a matter of opinion. I like to think the dacagon starts doing its thing the day it goes in, the “seed has to be planted” and thing, don’t work instantly, but something is happening. We may not see results right away, but the time should be counted. I figure from day one the body is being affected in some minor way, even if we feel nothing. The body may be fighting the drug, which can cause setbacks, but it is fighting back and should get some credit.
Jack S.MemberI just started my 3rd cycle of dacogon. BMB after 2 rounds show blasts have dropped from 14.1% to 1.4%, cellular activity from 100% to 95%. Counts have returned to normal, my whites keep wanting to increase(13.8 today)
Jack SMemberWhat you are going through is horrible, the main thing you are suffering from is “lack of information”.
It is not a death sentence. Your age is an advantage and you have time on your side.
Make sure you have been seen at a “center of excellence”. Most local hematologist know very little about the treatments available. Learn as much as you can, after they actually know what you have.
My doctor scared me to death when I was told I had 10-60 months to survive with no treatment available. That was 63 months ago.
Try to relax and worry more about the expense of your child’s wedding than your being there, you will be.
Jack S.
Stay positive and we will be tinking of ou. -
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