[lbeachbum2]

So Im now BMT + 8 days …..lots of bearale mouth sores ,,, no prolem with th chemo reactions and all the doctors here say Im doing great …. question here is next week the Bone Marrow that was donated , should start producing Blood cells ,,, a what point will I knw that Host V Graft and Graft v Host fo the most opart is clear of any fatale outomes and I can start to uncross my finger ………. Mike

[lbeachbum2]

I got a call today from the Hospital they located a 9/10 match and want me to come by with my family next tuesday to discuss, my oncologist believes this means that we must be within a couple of weeks of the MUD SCT …. thanks for the thoughts ,,,Mike

[lbeachbum2]

Just checking for any new stories …Bump

[lbeachbum2]

If people choose to go the chemo/transplant route that seems well and good. What makes me mad is that doctors do NOT tell them, nor are they obligated to tell them, that they may set themselves up for cancer 10-20yrs down the road. And that might not matter to some people because most of us would say we’d rather have 10 more years then 0 years. I just wanted to make the point that in all fairness it seems like a patient should be told of ALL the potential outcomes of their treatment and one of those is future MDS.
This is so true … as I have researched it 15% of SCT leads to a secondary cancer such as MDS … as I already know that having a Allogeneic transplant this time is only 50% chance of a long term cure and with that it also triples the chances that I get another leukemia later in life ……… But what can I do … the doctors told me I have a projected survival of 1/12 years and that was 6 months ago ………so I just roll with the punches

[lbeachbum2]

I loved your take on the transfusions ,,,, I just have one question … I receive 2 Units of blood about every 10 to 14 days … how long can this go on … My doctor seems to have a concern about all the antigens that I’m receiving ..he says that it can affect the success of the BMT that I’m currently looking for a donor for ……. anybody have any thoughts????

[lbeachbum2]

Hi
I was getting severe headaches’s too, this week my oncologist brought my RBC’s to 10 ( he usually settles for high 8’s ) and I feel better then I have in Months .. he will be keeping me higher from now on …..ask your doctor ……… Mike

[lbeachbum2]

I have had 3 Platlett tranfusions in the last week …tomorrow I go in at 10 for another … this is 2 weeks after Dacogen chemo

[lbeachbum2]

I was dX when I was 48 ……….. Secondary due to chemo and stem cell Transplant …….

[lbeachbum2]

I went in for a triple Bypass when they found the MDS ….. they say that I will have the triple bypass in 3 months after they get my Platlets up ….right now they are down at 25 …mike

[lbeachbum2]

I forgot to mention ….Im only 48 and been fighting cancer for 10 years ……..Mike

[lbeachbum2]

At Sloan I felt like a number ,,, and they went and sent me from section to section as long as I had My “Sloan Card” swiped …very impersonal …and there recomidations were the same as my oncologista …..as far as WMC ….My doctor was Dr Ahmed ,, who developed the stem cell program at sloans 20 years ago … I was givin excelennt care and the SCT ward was full of people with many years experiance ,,, and since I was a complicated case ,, that was important to me …I plan on going back there for my next one …. Mike

[lbeachbum2]

H

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I also have intermediate 2 MDS caused by 2 treatments of Hodgkins with a stem cell transplant in 2002 …. 3 months they told me something went wrong and now Im facing tring to get into remission ,,, then triple Bypass surgery , and then a Stem cell transplant with a 3rd party …any info you might get please pass to me too …Im a 48 year old male on Long Island and Im now on Decitabine Chemo …I got no reaction from Revlild…Mike

[lbeachbum2]

Just a question how does a drug (Thalidomide)
that was developed over 50 years ago , and giving out to pregnant women like candy at a normal cost ,,, come back with a new name as Revlimid that now cost $8000 per month ,,,, what kind of development cost could there bee for a drug that was banned ???? this is a travesty that the drug company’s take advantage of dyeing cancer patients …. we must all write our congressmen ….. Our family’s work too hard as caregivers , for then to go into bankruptcy so that a drug company can pay its ” Healthy ” shareholders ,,a more then a Healthy dividend this is our blood money ………… Mike11561@aol.com

[lbeachbum2]

South shore hemetology/Oncology

Dr Kessler

[Author]

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