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PamyRn
MemberHey Doreen
It so hard to finally make a decision. The fear of the unknown is the worse. Take one day at a time. I will keep you in my prayers. You will have alot of tests coming up to get you ready for transplant. A bone marrow biopsy will be the most definitive one to show the progression of MDS. How low is your platelets. I know they dont like to transfuse unless your are 10,000 or unless you have some bleeding going on. ARe the rest of your counts good. Who do you have for support after? Will your son be home from college spring and summer? So many questions…hope you dont mind. TAke care and keep us posted.
Your friend PamMemberMarsha
Im so excited for you. I am so looking forward to getting my SCT over with……..this waiting game is driving me crazy. Im told they have requested 11 donors blood. One has arrived so far…more to come. I am told three are domestic and the rest international. Wish me luck. Got a son home with 103 fever. Feel like I should pack up and leave. My whites should be on their way down with the rest of my counts because of the recent chemo. HOpe I dont catch anything. I walk around with disinfectent wipes and lysol spray. Im making him stay in his room. He is on antibiotics now.
Congrats again……..keep healthy
PamMemberWow Jennifer you have quite the regigm set up for chemo. Makes me wonder if they didnt do enough for me when I went into AML. Mine was just 7 days and then out. Are you in AML? You gave it a name T8-21. I am totally unfamiliar with that. Do you think mine has a “type” or can there just be AML.?
I hope that this chemo set up will do the trick for you. You have been though so much already. What part of the breast cancer treatment is responsible for putting you into MDS/AML? Is it the chemo or radiation??
PamMemberSo sorry to hear about Rons discomfort. The only advice I have is a friend of mine is going through chemo for colon cancer and after this weeks treatment she got bad sores in mouth and down throat. The doc order a mouth swish and spit…and an occasional swallow of nystatin mixed with benadryl…numbed her mouth and then she had to suck on 6 mycelex troches per day…they cleared up her throught over night. She was not even able to swallow her spit…she got much relief in a short period. Good luck
PaMMemberNadine
I was given booklets from the Leukemia/lymphoma foundation. One was for the caregiver of a SCT. My Mom will be one of my major care givers after my SCT so she was reading it. It had a article about a man who lived in Cheybogen MI (my mom is from cheybogen..so she thougth that was cool). He had wife and small kids at home and could not be with him in Ann Arbor MI after his transplant…as he had to stay for about a month in an apt….A church in the area all pitched in and signed up for 8hr shifts to help with his care. As you read from Marsha and Jim they did sleep quite a bit and so did this guy. He said sometimes he never even saw the person sitting with him in the night. This may be an option for you…….a agree with Jim..see a social worker. Part of my pre SCT workup was I had to see a social worker. Maybe they will set you up with one………Good Luck. Hope they find my donor soon. Scary but inevetible
PamMemberJen I transferred to AML in Jan. Had induction of chemo…Ara-C for 7 days contineous and danorubicin…three doses of that the first three days. I never got sick once. Right now Im having the same two meds at home as a “consolidation” to hold me till another donor is found for SCT. I hope you will be as lucky as me and not get sick. According to last BMB done the end of Feb I only had 3% blasts but still showed a few MdS changes in some cells, but have felt great. Counts all up in normal limits and have so much energy. This will not last when my counts all drop due to this bag Im carrying on my side for 5 days..will have to go back to transfusions ect till counts go up again. Sorry about your transfer to AML…….good luck with your treatment
PamMemberI think being a nurse and seeing so many BMB done at the bedside probably started me off on a bad foot. The weird thing is the very first one (the one you think would bother me the most) I did not feel, or should I say, remember. I think that the lower the platelet count the more it hurts later. I know the third one I had my platelets were 7. I went directly from the treatment table to an infusion clinic for platelets…I had the biggest hematoma…not fun. I think if it wouldnt have been Friday and it wasnt my 2wk post induction biopsy they would have waited till my platelets were up. Soon as they find me a “willing” donor, I will have to have my 5th one (two weeks before SCT). Because of the two “deferred” 10/10 donors I will start a 5/2 consolidation. The induction put me back into MDS with low blasts 3% but they dont want me going back into AML so I guess I need to do this. 6th day of induction broke out in itchy rash and now they want me to try ARA-C again..even though they think maybe thats the drug that caused the rash??? We will see. At least this time I will not be in hospital, but will wear a pump and go to clinic for the two doses of doxyrubicin….wish me luck
PamMemberHey Doreen
How are You? Do you know what the drug is they gave you???
PamMemberage 48 female
RAEB-2
diagnosed Nov 2004
Transferred to AML Jan 2005/chemo induction
currently in remission
Await SCT soonMemberSorry about Dad. You said his sister is a perfect match..is he considering a mini stem cell transplant? I know that age is a factor and thats why I said mini. How is he feeling and how strong is he? I transferred to AML in Jan. Had induction with the 3/7 I think you are talking about. Ara-C and Doxyrubicin. Just to let you know I did not have one symptom of nausea. Basically felt good as long as they kept me full of RBC and platelets…only thing was on 6th day, broke out in rash…bothered me for a couple of months…rash went away in a couple of weeks, but the itcing lingered on. All counts holding..last blast count 3%. Await stem cell transplant. 2nd 10/10 donor was just deferred. Hitting up the registry for a new batch. Best wishes for your Dad
PamMemberHey Suzanne thx for writing me back. I was only diagnosed 4 mths ago. Became transfusion dependent for for two months. When I first went into AML Jan 05(blasts were 26%) I recieved a “round” of chemo. It was Ara-c and Doxorubicin (red stuff)…I broke out in a rash on day 6. NOw they dont think I can take Ara-c for my stem cell conditioning…Now that you mention it I think they have to be real careful what they give my as it would interfere with the upcoming transplant. Will see doc tomorrow and see what they all have planned for me. I feel real good. My counts have been up in normal range since 2/9. Thank you God. I almost feel normal! LOL
PamMemberGreg
Im not sure why he was “deferred”. Im thinking he called them and for some reason he is unable to give..maybe he had something happen in his life that has kinda put him on hold (an accident..sick family memeber ect)..not sure and will never really know….You know we dont know how far he might have had to travel to be harvested and then if far he would have had to spend the night to be harvested to the next day also…seems like if it was something temporary he would still have the physical tomorrow and still be on hold…who knows…..
PamMemberI was diagnosed with MDS in Nov, but advanced to AML in Jan. I only had one round of chemo and my BMB the end of Jan was clean and all my counts came up on their own….then I had another BMB as a work up for SCT and the blast count was 3% which is good but other things to look at in BMB. The pathologist keep saying in the report that I had slight this and slight that changes in some of my cells……..which makes it suspicious of recurrent or persistent myeloid neoplasm possibly from prev diagnosed MDS. Doc said this wasnt a bad report, but just reaffirms the need for a SCT…Await admission on the 19th with SCT on the 29th………wish me luck…and good luck to you. I do hope your boyfriend stays in remission, like Suzanne, for a long time. Good luck
PamMemberJen
Cant imagine having cancer one time with treatment and then getting it again as a result of that treatment. My thoughts are with you. I was diagnosed with RAEB-2 this past Nov with 12-14% blasts..advanced to AML first of Jan. Went one round of chemo and after a long hard month with infections, have been in remission since. Feel great!! All counts up on their own. No transfusions since end of Jan. Heading to University of MI in two weeks for SCT. I, like you do not have any chromosome abnormalities as I believe this will make it easier to find you a match. I am so thankful for my 30yr old male donor….lets hope he passes his physical on the 9th as my last one two weeks ago flunked his physical so they had this guys speciment down there and he worked up as a 10/10. I feel so lucky to have this chance for a cure. Best of luck with your plan of care……take care
PamMemberMarsha thx for the encouragement………got kinda freaked out hearing of the hard time Christine had to go through. My first donor flunked his physical after everything was all set up…but luckly they had another specimen at the hospital and worked it up and he is 10yrs younger that the first (30yrs)…we are both neg CMV , both have same blood type and we are a perfect match 10/10. Im lucky in that I have no chromosome abnormalities. I hope he is willing to move quickly so I dont have to wait too much longer than first date of March 5th. Thanks again for the encouragement….
Pam -
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