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Zoe
MemberAllen,
I am sorry you and your family are having to go through this. There are no hard and fast answers when it comes to MDS. Some info you don’t have which can affect outcome are blast count, MDS subtype, and chromosome involvement. Even then, it seems to be a crap shoot. Each person respoonds so differently to the disease and treatments.
I just try to take one day at a time. I know it is hard though. My hgb is starting what appears to be a slow decline in spite of the Aranesp. I am struggling to not worry that it will keep going down. I am working hard to stay focused just on today.
Zoe
MemberI am very happy for you, and them. How wonderful! I have to ask though, how can you possibly use 2 moose? Isn’t that a lot of meat? Good eating to you!
Zoe
MemberEstee,
I am so sorry to hear of your husbands death. Hugs and prayers your way.
Zoe
MemberYou might consider finding a doctor who is experienced with MDS. New treatments have come out recently and research is ongoing. It is great to have someone who is up on new info. I really appreciate that I can ask any question and not stump my MDS doctor. Not that I am trying to stump her, but I can always get my questions answered.
Your blood blasts are rising quickly. What is your bone marrow blast count?
Ask lots of questions, here and of your doctor. Educate yourself and be active in your treatment. Please keep us posted on how you are doing.
Zoe
MemberBob,
Who are you seeing? How familiar are they with MDS? There are a lot of options which could be considered still. Your wbc and hgb have come up. Maybe from the Vidaza? Aranesp or Procrit may help more with hgb. Knowing your blast count would help also. Did it increase or decrease after the Vidaza? Do you have any chromosome abnormalities? Do you have problems with bleeding?
I know, lots of questions, but that is the nature of this syndrome because it varies so much from person to person.
How does your Dr. respond to questions? Will he discuss with you?
Zoe
MemberBill,
Thank you for sharing. It is always encouraging to me to hear these wonderful success stories–there are too many sad stories. My doctor recently told me about one of her patients who was diagnosed with MDS (5q-) when she was in her 40’s. 30 years later she is still kicking :^)
Zoe
MemberJen,
I am so sorry to hear what your father and you are going through. Can he get a nurse or an aide to come in and help out? I don’t know what to tell you about treatments next, I am sure someone here can help.
Zoe
MemberOh Linda, I am so sorry, this has been a crazy ride for you all. Keep taking one day at a time. There is still a good amount of hope for remission.
Zoe
MemberJust sent a little prayer that he gets the OK to do this thing he so enjoys. That is what makes life so much more enjoyable.
Zoe
MemberChoijk,
Might not be a bad idea to check out. However, it is not uncommon to have some minor rectal bleeding with diarreah. Since it is red, it is coming from the end of the line and if it isn’t a lot, and he has never had it before, it is likely the diahrrea. At least, that would be my interpretation if it was me. I am not a medical professional though, so take this with a grain of salt.
Zoe
MemberI am so sorry to hear about your mother’s death. I am afraid I can’t answer your question, but maybe someone here can. I just felt very sad for you when I read this.
On a happier note, congratulations on your baby. What did you name him?
Zoe
MemberHigh platelets can cause problems. Why wouldn’t they cause clots, heart attacks or storkes? How high are your platelets?
Zoe
MemberWhat a relief! Did a different doctor do the BMB? Maybe it is time to consider a switch? I am glad you had the BMB. I can’t imagine the roller coaster of emotions you all must have gone through with all of this.
Zoe
MemberPlantcollector, Are you into herbs? Just curious what type of plants you collect?
I agree that someone experienced with MDS is a real plus. Most oncologists don’t really know a lot about it. I wonder though, if your doctor is considering Revlimid because he worries about your hgb being so low for so long. Even if you feel good, is there concern about organ damage? I would go for the second opinion.
If he is classifying you are 5q syndrome, he is saying you have no other chromosome abnormalities. That is part of the definition from what I have seen. The high platelet count would also go along with that.
Suzanne, I am finding that they are starting to look at 5q syndrome in its own category since it has such classical symptoms. I believe it is a new WHO classification.
I have read your byline many times and felt so encouraged. I have read that 5q with excess blasts is almost invariably deadly, but you are living proof of the fallacy of that statement. It is such a blessing to have this group!
Zoe
MemberLaural,
Do you mean elevated blasts in your blood? or marrow? Marrow blasts are not a concern up to 5%.
Sorry, I don’t know anything about Graviola.
Zoe
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