MDS advancing into AML
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August 28, 2005 at 5:25 am #8487Di / Scott’s wifeMember
my husband has been in the hospital again for a week this time the cellulitis is in his arm now…
they also did a cat scan and found 2 blood clots…
the dr was in this morning saying that he has 9% blasts in his blood… which means he has probably progressed to AML… so they will do a BMB on monday…
he hasn’t started Chemo yet for the transplant because of infections so how can they start it now if he is sicker than before…
my husband is very scared and I am trying to be strong but am feeling pretty weak right now…
What is going to happen next???
it is very hard to continue with “normal” when everything is coming down around you… or so it feels like it…
please any prayers would be greatly appreciated at this time…
thanks so much, love, diAugust 28, 2005 at 5:39 am #8488Sandy LMemberDi and Scott
I will be praying for you. I think we are going to be in crisis soon so I know the feeling (scared) . I was always under the impression that in order for it to be AML you needed blasts over 20%. What form of Chem were they giving him? Any chance for a BMT? I am new to this – so I hope some of the other members answer some of your questions. Hang in there.xoxoxo
August 28, 2005 at 12:32 pm #8489sarahMemberDi, I too will keep you and Scott in my thoughts and prayers. Hang in there! Is he still experiencing the itching you talked about in earlier posts?
August 28, 2005 at 1:00 pm #8490SuzanneMemberThe over 20% as a loose definition of AML is in the marrow not the blood. Probably the reason they are doing the bone marrow test. I know it does not make sense but for me the positive turning point came when I went into AML with 75% blasts in the marrow-they tell me the level of blasts in my blood was ‘low’-whatever that means. But at that point they went into action and the chemo put me into remission. So don’t give up. There still could be some positive days ahead. We are all so different there is no way to foretell what direction things will take. Those statistics of success for each treatment they try may seem low but they do mean that the treatments work for some people!
August 28, 2005 at 2:31 pm #8491eveMemberwhen my dad was in the hospital with an infection his peripheral blood blasts were quite elevated – they blamed it on the effect of the infection – they did a bmb to confirm that
August 28, 2005 at 2:56 pm #8492TerriMemberDi- Bob had more Blast in his blood the first time before he started the Vidaza in 2003. They were in the teens and also in the marrow about 10%, The doctor In NY at Sloan Kettering said the same thing transgressing to AML then when we got home to Our Doctor he did not feel the same has the NY doc, started him on vidaza.
My Point, don’t give up, stay Strong, wait for the BMB results. Lots of Prayers coming your way, actually we are off to church right now and will add some extra intentions.God Bless
August 28, 2005 at 6:09 pm #8493KathrynMemberHey Di, I know how drained and scared you are. The unknown can be so unnerving. Try not to think too far ahead and like the others said, stay strong and know that there is hope…
With my father, the doctor told him that his CMML had become acute when his blast percentage was much higher – 30%.
I will be praying for you & Scott. Take care.
Love,
Kathryn
August 28, 2005 at 10:47 pm #8494CarrieMemberDi,
I’m so sorry to hear this. I hope that the biopsy shows that they are wrong. We will talk soon.
Love,
CarrieAugust 29, 2005 at 1:16 am #8495rileyMemberDi,
You and Scott will be in my prayers. It is scary, but try to stay hopeful and take one day at a time. I’ll pray that the BMB results will give you a pleasant surprise.
Nicole
August 29, 2005 at 4:30 am #8496Di / Scott’s wifeMemberThanks for keeping my spirits up…
back in Mar 05 VA said he had AML because of 20% blasts, then we were sent to ROSWELL cancer institute center of excellence, and they decided after doing their own bmb his blasts were only 15% and that it was only MDS… but with bad chomosomes so doctor was said that it could turn into AML…
our problem is trying to understand it all…
Scott’s brother is a match and has already come here and donated Stem Cells… Scott’s infections are postponing the transplant…
he has really had not one treatment of anything except Antibiotics… he is in lots of pain… but other than that we wait…
tomorrow they are talking about moving central line to other side.. and BMB… I guess once they have those results we will get our next directions…
thanks so much for helping me I feel I get more thoughts from you all here than the doctors…
love, di
oh yeah Scott is taking a medication called Cyproheptadine (substituted for Periactin) for his itching… this seems to help him… and since it is warmer he hasn’t really complained about the itch…hope that may help you…August 30, 2005 at 8:11 pm #8497Di / Scott’s wifeMemberThis is very frustrating… the doctors decided not to do the biopsy…the blood test showed blasts went down quite a bit so they are not worried at this time…
Scott actually is on his way home now… they have released him for now… he will be on all of his antibiotics and now a steroid for the swelling…
hope the next time we go back it is to start this transplant…
I just want my Scott back…
thanks for your prayers I think you got us through this time…
love, diAugust 30, 2005 at 9:27 pm #8498sarahMemberDi, glad Scott is headed home. Get some needed rest. Keep us updated.
August 30, 2005 at 11:45 pm #8499shirlsgirlMemberHi Di,
I’m sorry to hear about Scott. Is the cellulitis in his arm getting better? What an emotional rollercoaster!! Glad to hear that he is home now.
take care,
Jody
August 31, 2005 at 12:11 am #8500TerriMemberGlad to hear Scott is Coming home. and yes please keep us posted. The prayers will continue
September 1, 2005 at 6:18 am #8501JanePMemberDi,
Glad to read that he is home now. Hope all is going well. You take care of yourself too.
My prayers are with you both.
JaneP
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