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alexandra7
Participanthello jennifer.
it’s good that you are trying to learn things about MDS. i would personaly like it if you would share them with us. And don’t forget that the forum is also a source of learning but also a place where you can get people’s support when you are in difficult situations . AlexaParticipantThat is great . see!!! I told you not to lose hope .
Still praying for you
AlexaParticipantI have never heard of it. My question is if this vaccine is to prevent leukimia or does it play a role in recovering from leukimia. Thanks for the info. Alexa
ParticipantSuzanne, that is very good news. If you have come so far keep hoping and you’ll be home safe in no time . We will be here to help you pass the first 3 month . Keep up the good work. My prayers and thoughts will be with you . Alexa
ParticipantDear Barbara ,
I simply loved your post . I do not know if it’s denial or simply hope or optimism but that is the thing we should all do . Hope and enjoy life the way God gave it to us . I admire you and Ron because you are no where near despred . It’s such an unfair think to happen and yet you both are facing it with so much courage . You are strong people.Maybe this hope and positive thoughts will help you more than you know . But beside your optimism I admire even more that you are not giving up you are trying all knids of new things . That is great . Although most take your post as a “not so good news” because of the set back on Ron’s treatment I personaly take it as a very good news because you have found inside you the way to cope with this and move on living your life . Ohh and about that note you received don’t take it into account. Posts like yours could help so many see this desese in a diffrent way and find peace of mind . You and Ron will always be in my prayers . Best wishes to you ALEXAParticipantKATE!!! Try to calm down . Of course I can understand what you are going through. I mean not knowing is the worse thing people have to cope with. But try not to lose hope that everything will be OK . It’s already a good thing that his blasts are fewer(right)and his counts are coming up . So keep thinking positively. Things are going the right way although there are some obstacles . But I ‘m sure you will be able to get over them . Hope to hear good things . will be thinking of you two. Alexa
ParticipantFinding a donor is a good thing. I do not know too much on BMT but i would say it is a chance to move on, to go forward . It is of course scary but it is a step forward to fighting this disese . Of course you should not expect waking up in the morning and having all this story gone recovered 100%. You will have bad days and good days but the ideea is that this could be the cure . Maybe it will take a long time to recover completly but knowing that in the end everything could be more than OK should be worth it . So take care and let us know how it turns out.Alexa
Participantthanks neil for the info they really come in handy . The strangest thing is that my platelets are always in normal rage (120 000). You know I have to share this with you . I got the feeling you are really an expert in what conserces MDS . And what I like the most about you is that you always share it with all of us . You are a very kind man . So thank you again .ALEXA
ParticipantYEAHHH!!! If it’s a go it’s one point for you in this battle . Good for your mom !!! Hope to hear even better news
and it works well(in fact think positive —IT WILL WORK )AlexaParticipantHi Kate!!!
Hang in there !!! So far good news hope that won’t change . You and George will be in my thoughts and prayers !!! AlexaParticipantHy Wendy!!!
I would say Welcome to the forum but it would have been better if you never found out what MDS means . Here you will find people who are in the same situation and also people who know so much about MDS . I personally do not know very much as others. You can find many materials on the net . Just try googling on this . I can tell you that you need to get your father to an MDS specialist or a very good hematologist . It took a long time for me to understand what MDS is and when I did understand I ended up being terrified . The forum helped me understand that not everything you read is true . MDS is very strange . For some people it evolves very fast fot others it doesn’t. The first thing I learned here was that a treatment that works for a pesrson may not work or may make the situation even worse for another one . That is why seeing a good hematologist is important. AlexaParticipantHello Drew!!!
I don’t know much about vidaza or any other drug from this category because for the moment I don’t need to use any . I’m stable . I do not know if I got the right impression from you post but you kind of lost your hope . Am I wrong or am I right ? What you should understand is that MDS is very tricky . Don’t bother to think about survival rates . In this case they are not of any use . Your mother may have many years in front depending on here level of risk and of course of her will to fight. Try not to lose hope that is really very important . I ‘m sure you will find people here who can help you with your questions about the drugs. God be with you!!!AlexaParticipantI am sorry you had to find your way to the list with such a sad reason. Well I can’t help you too much because I don’t have any info on this but I can tell you there are a lot of people here who know so many things and people who have had BMT . I sure they will help you . God be with you!!Alexa
ParticipantHi !!
I can’t help you with real advice about cord blood because I do not know much about this. But I would really really like to see with your head up. No!!! MDS is not a bomb that will hit you it’s just something that you have – it’s a hard think to cope with I know -but you have to get your powers toghether and fight it with every thing that you have. Don’t let it spoil your life . Please be happy for any second that God gives you and try to benefit from it in every way that you can . So I want you to take the scare out of your heart and concentrate on getting better . OK?And when you feel down just remember we are here . You will be in my prayers!!!AlexaParticipantI am very sorry for your loss . Your father is up there among angels and he will watch you and take care of you .I know you are sad and hurt but the forum is here next to u . So any time you feel like talking we are ready to listen . God be with you and your family . Alexa
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