Hi,
You are receiving a lot of good advice here. I wanted to clarify some points that I made in a previous post.
First, I am not advocating that your grandpa start on Vidaza. I only asked that question because you said that your grandpa was getting a mysterious shot once a month, and I was wondering if that was what it was.
Vidaza is a treatment that you keep in your back pocket when you don't have other options or are considering transplant. Once you start it, you can not stop, and it will alter the course of your disease either positively or negatively.
So unless his doctors are suggesting Vidaza, I wouldn't even bring it up!
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Originally Posted by jmarshall23
I would love to go with him to his appointments. My grandparents don't want me to go. My grandpa doesn't want me to see him when he's this weak. I've been coming over on the weekends with home cooked food(that's my way in the door :P). I've yet to break the barrier to go with him to his appointments. If you guys have any words of wisdom for me on this one, I would love to hear them.
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It sounds like your grandparents are trying to protect you as they know that you love your grandpa dearly, and he knows that he is not doing well. I would suggest approaching this with your grandmother first. Explain that you have been researching your grandpa's condition and that you only want to serve as a patient advocate for them. You would like to help listen and ensure that their questions are answered at the appointments. Perhaps if you can convince her first, she can talk your grandpa into letting you go.
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Originally Posted by jmarshall23
I don't know how many bags of blood he's getting. He's only had 3 transfusions(including the latest one). The transfusion he got before this lasted him 8 weeks. The boost he got was almost to 11. The hemoglobin didn't fall to below 8(the latest blood test had him at 8.1), but he wanted the transfusion because he couldn't get through the day.
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You really want to track the units/bags of blood that your grandpa is getting and when on your spreadsheet. Once he hits around ~20 units of blood, iron overload becomes an issue.
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Originally Posted by jmarshall23
This is where things get interesting. In January of this year he complained of having low energy and he went to the hospital and doctors office 4 or 5 times before getting diagnosed with MDS RAEB. He wasn't diagnosed until May. They did a bone marrow biopsy and after that they diagnosed him with MDS.
In July they gave him a B12 shot(after my grandmother repeatedly asked the doctor), and his hemoglobin did go up after the shot. They haven't given him another shot since(even though my grandmother has been continually asking the doctor for another b12 shot for him).
Is it still possible that this is a b12 deficiency issue?
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It is a very real possibility that your grandpa does not have MDS but does have a vitamin B12 deficiency. A B12 deficiency can mimic the symptoms of MDS, including blasts! Left untreated, it can kill him.
This may be the angle that you can use with your grandmother to get into your grandpa's appointments. You can be their voice for B12 testing and for regular B12 shots. They can check your grandpa's serum B12 and also do other more accurate tests (I don't remember the names offhand) to easily determine whether he needs B12 shots. So, make sure to push for them especially if he responded positively to B12 shots before! If his doctor won't listen or do the testing, I would find another doctor.
As we age, our body naturally loses intrinsic factor which is necessary for the absorption of B12. That is why some people require the shots. If your grandpa is a vegetarian, it is even more likely that this is a problem.
Someone posted a very interesting video on this forum awhile back on B12 deficiency. I think this is the video.
https://www.youtube.com/watch?v=isHI7JLWN_o
Quote:
Originally Posted by jmarshall23
They are giving him Procrit shots. Do you guys think Vidaza is better then Procrit?
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Did they test his EPO before giving him Procrit shots? Unless his EPO was low, Procrit is unlikely to help with anything.
Vidaza is not something that I would pursue at this point.
Keep fighting for him!