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Genew,

When I first joined this forum, I first noticed the care people exhibit to those seeking answers or to those that just want to talk. I am sure you will find support and useful information and resources from this site.

Karen

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Carrie,

I am so glad for you. That is some really good news! I am sure it also made your Dad feel a lot better too. Just keep wishing those nasty blasts away.

Take care,
Karen

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Doreen,

I hope you are well and feeling alright. Just think of when your blasts are down and look toward the future and the potential of a transplant. Just think of all the challenges people go through in this forum. You will get through this.

Kind Regards,
Karen P.

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Dawn,

Perhaps you could provide your Mom with some literature regarding the side effects of the drug and highlight the necessity for medical attention. Maybe your Mom and Dad are trying to deal with the situation but not dealing with it and pretending it is not there because it is too difficult.

Kind Regards,
Karen P.

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Don,

I think that is a very kind gesture to send a ‘thank you.’ It also seems to me that the person that was a match had every hope that their marrow would be used to help someone else. How can you ever repay someone for a selfless act of kindness. I don’t think you can, although you can appreciate the goodness in people and pass it along.

Hope things continue to go well.

Kind Regards,
Karen P.

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Eve,

I know my Dad had swollen ankles once when he was in the hospital. The Dr.s said it was because his blood counts were low and that he was having some effects of heart failure. But as soon as his counts were stabalized his ankles went down. From what I have heard it could be the result of not enough oxygen getting to the heart due to lowered RBCs.

Kind Regards,
Karen P.

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My Dada’s Dr. mentioned that if there are blasts in transformation it may not be wise to prescribe epogen because as it helps with the production of RBC, it may also help the bad cells to replicate.

Kind Regards,
Karen P.

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Butch,

I am extremely saddened by the double loss you have experienced today. I hope you will be able to feel and reflect on the memories of both and pass those to the girls.

Tkae care,
Karen P.

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Kate,

My sympathies and thoughts are with you in this difficult time. Search for peace and comfort in your heart and feel and remember the memories of George.

Kind Regards,
Karen P.

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From what I have been reading, they have determined that certain chromosomal abnormalities have been detected in MDS cases. There is quite a list as well. The impetus to locate the affected chromosome, from what I read, it to better treat the MDS. Studies are being undertaken in the hopes that is an affected chromosomal abnormality is identified, some treatments may work better than others. This is significant in that it may establish some type of link, disease + appropriate treatment = health. This would help with knowing (establishing a baseline) which drugs to try with people that have certain conditions.

Kind Regards,
Karen P.

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Hi Kate,

As all of us have experienced in one way or another, MDS is disease where things are good one week and not so good the next, they seem to be in flux most of the time. George’s appetite will improved as you said he got something to help with that. Although his counts are down now, the Dr’s will determine whether to give him a tx, I am sure that will make George feel better. As far as the Dr’s scaring you, I don’t like the sounds of that too much. I remember when my Dada was in the hospital this one Dr. giving me a prognosis only after seeing my Dad twice!

Many Dr’s are quick to judge and simply follow the models of MDS to the detail. This is not always the appropriate line of action but I think it gives Dr’s some control over their diagnosis of the problem. In other instances, Dr’s seem to want to prepare people for the worst, I don’t think people need to hear that either. When my Dad was in the hospital I remember Dr’s asking him questions that I was shocked to hear (ie. ressuscitation). But I guess they need to that.

Keep thinking positively. George is just going through a bad time at the moment. Try to keep his spirits up and yours to and try to enjoy being together. When the Drs want to tell you what is going to happen, just remember they are most likely derviving their prognosis from statistical information and it may not apply to George. This is a bump in the road and things will get better.

Kind Regards,
Karen P.

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Suzanne,

I am so happy for you. That news is great! Keeps smiling, that is wonderful.

My Dad was just diagnosed this week with RAEB-t. The Dr gave him medication and we have to see how it will work. Another Dr. my sister works with looked at my Dad’s BMB results and said the counts were pretty good. I am hoping they stay where they are and this does not progress further, as that is a frightening thought for me and my family.

Best Regards,
Karen P.

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Frank this is from the article I was reading.

[Models for the development of sporadic MDS]

While genetic and familial mapping studies have clearly demonstrated that mutations in a specific gene, such as AML1, NF1, or genes mediating DNA repair, can predispose to the acquisition of secondary cytogenetic abnormalities and MDS, it is likely that such inherited genetic mutations will account for only a minority of MDS cases. How the majority of “sporadic” MDS cases arise is as yet undetermined. However, epidemiologic case-control studies of MDS (and related AML) have demonstrated associations between MDS and smoking, exposure to chemical compounds (particularly petroleum products and diesel derivatives, exhausts, organic solvents, fertilizers, and nitro-organic explosives), semi-metals (arsenic and thallium), stone dusts (such as silica), and cereal dusts.

Kind Regards,
Karen P.

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Yes just ask your Doctor about G6PD deficiency and if he thinks there is a concern to be tested, I sure he/she will.

Yes, G6PD deficiency can be controlled and over 400 million people in the world have it. Although the deficiency has been linked to MDS it has not been established as a cause, as there are only approximately 6,000-12,000 new cases of MDS in the U.S. each year. It is one more link in establishing the genetics involved in MDS.

I wouldn’t worry about your girls inheriting MDS from you. For one, personally, from all the reading I have done (medical journals), only in rare cases is MDS hereditary. Second, your girls have two X chromosomes. Third, from what I have read about G6PD deficiency in newborns, if jaundice persists, the Doctors will suspect a deficiency, where as your girls are fine.

Please go to this link if you like. It is in medical terms but it may be helpful.
http://www.asheducationbook.org/cgi/cont…lcode=bloodbook

Kind Regards,
Karen P.

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Yes you are right, neonatal jaundice is due to G6PD enzyme deficiency. The deficiency is also more common in males because they only have 1 X chromosome where as with females there are two and the other X chromosome becomes the dominant one and compensates for the G6PD deficiency.

According to a chart I have, if you have the deficiency and your wife does as well, or if either one of you has it as a dominant chromosome, there will be a 50% chance your daughters will have it. If one of you has it or your wife is a carrier of the chromosome, your daughters have a 25% chance of having G6PD deficiency.

If you are concerned with this and whether your daughters will inherit it, they can do a test at the Doctors and determine if there is a deficiency. Just explain your concerns.

Kind Regards,
Karen

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