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Bluyz1966
MemberThank you for all the well wishes and thoughts. I have never felt this kind of pain before. My heart is broken, I feel lost without her.
Linda
MemberThe sores will be biopsied next Tuesday to rule out Sweet’s Syndrome. But, the scabs are black, yes. That and the sores are growing larger. She has one on her temple that looks terrible. It is like a big blister that is dark red to black in color. I believe that one is bleeding in towards her eye, because her eye is swollen and a little bruised.
Her platelet transfusions have been “rejected” since June. Or at least they have little effect. She has been as low as 4 and not higher than 13 in the past months. But, she seems to tolorate it OK.
Cathy, were your husbands sores painful? Did they come to a small head before they scabbed over? I think the mouth sores and the others are not related. She did not sleep last night because she had to get up and spit out blood every hour or so. It would just pool and clot in her mouth. Sorry to be so detailed, but, I know you have all heard or experienced these horrible things.
Thanks for the feedback.
Linda
MemberHi Mary. Well, I was going to post about Mom and ask about others side effects as well. She has finished her first round and has had no side effects aside from bone pain. The bone pain did not start until 3 days after her first round. If having extra energy is a side effect of the Dacogen, then she had that too. I almost questioned if she was getting the “real stuff” because she had nothing to mention. She took her anti-nausea meds religiously as all should, I think that helped her a lot. Best wishes to you and your husband. Where in Michigan are you?
Linda
Memberwhat is the definition of a “cycle” of Vidaza. Mom has been given Vidaza 7 days in a row, every month, from May – July.
Will keep you posted. Thanks!
MemberTerri,
I am so sorry for your loss. Bob sounds like he was a strong fighter. I also hope you continue to visit here and let us know how you are doing and maybe help answer our questions as it seems you have been through most all of it.God Bless,
lindaMemberJack,
My little boy actually had MDS at 6 months in late 2005. His did transition into AML. He is in remission now since June 2006.Thank you!
Linda
MemberThanks for the notes. Yes, there have been a lot of emotions over the past 2 weeks. Now we celebrate and pray that they find something her MDS responds to as they have given up on the Vidaza.
Zoe,
It was the same Onc that did the other BMB’s. He was going by the blasts in her blood when he told me she had AML. He obviously should not have done that. But, her blasts have continuously risen over the past 2 months. They are at 16% now. The Univ. of MI did the pathology on the BMB slides. She will be going there as an out patient to see if they can help her with the mds.Thanks again!
Linda
MemberI am blessed to have this site and all of you wonderful people. Thank you for the hope. I feel a lot better. I have the information to talk to my Mom about this with confidence and give her hope.
Thank you.
Linda
MemberAlex,
You are only 18 years old? You have been through so much in your young life. I bet we could all learn something from you.Thanks for the post. University of Chicago is closest to us, about 1.5 hours away. We are looking there. Will keep you all posted.
Thanks!
Linda
MemberMoms are up to 7% as of yesterday. Steady rising. Going to ask for 2nd opinion.
Linda
MemberThank you for your replies. Anyone from the Chicago area? We are looking at the University of Chicago for a second opinion.
She questioned the tx this morning and they did a cross match for tomorrow. It is time for a second opinion and I appreciate you all reminding me of the importance of that.
Bless you all.
Linda
MemberJust curious. My Moms Doc told her today that he needed to keep an eye on her blasts, that they were up to 6%. I checked all her CBC w/Diff reports for the past two months. There was only one in June that showed blasts, 1%. Then it went like this:
July 2; 2%
July 23: 4%
July 29: 6%Her doc mentioned AML. Said she has the kind that can transition. Is the increased blast percentages a sign of this? He only said, “it could be”. Tell me if you know. Anyone can also email me privately.
Thank you!MemberThanks for the posts. I notice people use a lot of different letters to describe the different types of MDS. Do I ask my Mom’s Oncologist what “kind” of MDS she has to find those out?
MemberThey sent Mom home this morning. Platelets still 5. We should know the results of the BMB by Friday. I can’t help but wonder is she being sent home to die? I just can’t believe there isn’t more that can be done for her platelets before sending her home. She wasn’t home 5 minutes and cut her finger opening a can of cat food for her kitties. Took 30 minutes to get it to stop bleeding and it was only a nick.
I would love to take my Mom to the convention in Vegas in August. That is my goal right now. I am setting a little money aside thinking positive.
Linda
Mom, 67. DX May 2007 MDS. 1 Round Vidaza, stopped due to no platlet production or transfusion acceptance. Started Neumega 6/15/07.
MemberHi Willie. I asked about the Sweets Syndrome. Have you ever seen it with out a fever? The doc was quick to say it wasn’t that when I asked him about the possibility.
Mom is due for another BMB this morning. The doc wants to see if she is making her own platelets and destroying them, or if she isn’t making them at all.
There is a big family history of ITP in my Mom’s family. Anyone seen that secondary to MDS?
I give the doc till Thursday to tell us what is going on. Then I will insist they get her to University of Chicago.
Her platelets dropped to 4 yesterday.
Linda
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