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Jack_dup1
MemberFrankie,
Did he give a reason for not radiating the spleen. Since mine was radiated, I would be curious to know the neg, although it’s to late.
Jack S.MemberInquire about radiating the spleen. Docs have different opinions about it. I had a very large painful spleen which they radiated. It is not the same as removing it, but far less traumatic. If you want more on my experience, I will e-mail you.
Jack S
J.saffell@mchsi.comMemberI would be seeing another hematologist, 6.7 sounds awful low, especially with his SOB, he needs HBG to deliver air.
The question should not be “will the counts recover after the infection, but what damage is being done while they recover. I was given tx when it dropped to 9.0. Be assertive.
Jack S.MemberWarren,
It is very possible that the hip pain is from a past BMB. I will intermittently get the same pain, especially if I’m feeling poorly anyway. I have pain from a biopsy several months ago, even though I’ve had 4 since then. It just comes and goes, sometimes radiating down the leg. I lay on my back with knees elevated and a heat pack. Don’t rule out something else, but worth considering.
Jack S.MemberTry not to read to much into the BMB, I have had 14, number 15 will be in three weeks.
I look for changes from one to another. Mine will say Markedly Hypercellular Activity (100%), mild phenotypic dysplasia consistent with persistent chronic myelomonocytic leukemia, plus a bunch of other things regarding the several processes they look at. Marrow, core biopsy, aspirate smears, ect. I let the expert worry about the details, I just make sure the expert is paying attention and I ask a lot of questions. It is a long ride, don’t sweat the small stuff, don’t ignore, just don’t dwell on it.
Jack S.MemberLynn,
Just to be clear on demanding the filtered and irradiated blood, it is extremely important in regards to preventing a build up of antibodies,
I have had an extremely enlarged spleen for 5 years and only 6 units of blood in that time. We are all different, even if the diagnoses is the same. I am mds/mpd, (CMML), high whites, low platelets, normal reds. Use us as a reference but don’t expect the same results or symptoms even though someone may have the same counts and classification may have.
Stay optimistic and enjoy what brings you satisfaction, congrat. on the ribbons.
Jack S there is more than one jackMemberLynn,
I didn’t see it mentioned, are you getting filtered irradiated blood to cut down on anitbodies.
Jack S.MemberI will start 2nd rd. of Dacogen on Tues. Before the first session my platelets were 71, 16, plt tx, 17, 18, 70, then 2 days later 191. Reds are 12, whited dropped from high 20’s to 1.07, then 1.60.1.70. 2.07. I have no complaints.
I am having some lung problems, sort of., shortness of breath, and low O2 saturation.
regards,
Jack SaffellMemberBety,
I am very sorry to hear about Ed. You did every thing you could, it never seems enough. We know whats coming, yet are never prepared for it.
Our prayers are with you. You will always have friends on the forum.
Jack SMemberI had an echo and the EF was 55%, everything looked normal, will have a stress test on the 19th. So, I have a normal heart, normal lungs, but suck on O2 all night. I used to do repair work and wish I could have told the customer that I had no idea what the problem was, nor how to fix it, but here is the bill for $500.00
Jack SMemberMaria,
Just click on my profile, then edit profile, then go to the signature box.
What were Ralphs counts when diagnosed with CMML, usually one of them is high. With my the platelets were low, whites high, reds normal.
How are his monocytes? I don’t know about high platelets, I would guess it would be a lot easier to lower then than increase them. 354 is still in the high normal range. 150-400 is normal. Unfortunately CMML is not regarded as MDS. It is a combo of MDS/MPD and in a class of its own, making it harder to treat. I am optimistic about the Dacogen, it has had some success treating CMML.
I’m happy to see he is having some improvement and things may be a little easier for him now.
Good luck
Jack SMemberI started using Endocet (percocet) when in the hospital in Jan. For me it has been a miracle drug. I will get very tired, get a lot of pain in spleen, liver area, get very bad leg aches. I will take 20mg of endocet, lay down for 20 minutes and get up feeling great. I have a pretty high tolerance to pain meds. It does not cure anything, but sure helps a great deal, if not for it I would be in bed a lot.
After my first Dacogen cycle I have had very few if any problems. My whites dropped from 24 to 1.6 in two weeks, plt 71 to 17, reds 15 to 11.5. I hope to see some improvement next week(3rd week).
JackMemberZoe,
The strange thing is that my Hbg has always been a stable 15, or was. It is dropping now due to the Dacogen. It is now 11.8 and my breathing is actually better as well as my O2%. In my case I don’t think one has to do with the other. I am going to see a cardiologist on Thurs.
My whites have dropped from 24 to 1.7. My plt dropped from 71 to 16 and I had my first plt tx yesterday, this is my second week after the first round of treatment.
JackMemberThis is a sad time for the entire forum. For the five years I’ve been logging on, Neil has been the goto guy for information and advice, it was always accurate and well explained. He kept his personal opinions to himself and just provided sound information. He was this forums “google” and “wikipedia”. What a shame. What irony that he fights MDS for 12 years and gets hit by lung cancer.
The man is irreplaceable.
Our thoughts and prayers are truly with him and his family.
Jack S.MemberThis is a sad time for the entire forum. For the five years I’ve been logging on, Neil has been the goto guy for information and advice, it was always accurate and well explained. He kept his personal opinions to himself and just provided sound information. He was this forums “google” and “wikipedia”. What a shame. What irony that he fights MDS for 12 years and gets hit by lung cancer.
The man is irreplaceable.
Our thoughts and prayers are truly with him and his family.
Jack S. -
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