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MDS Myelodysplastic syndromes

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Old Tue Oct 16, 2012, 06:14 PM
Sarah.P Sarah.P is offline
Join Date: Sep 2012
Location: OKC
Posts: 14
I need info to help my dad...

OK so I made one post before about his MDS and most recently his platelets have been good but his red and white cells are both down. His white cells are at 1.4 I believe he said last time I talked to him. He says they told him his red cells are down too but OK so we're not worrying about that right now. His only treatment option for his MDS is chemo which he does for 5 days every fourth week. He's too old and sick to do anything else.

So anyway here's my predicament.... The last couple chemo treatments the Dr. stopped giving his opinion as to weather or not my dad should take the shots for his white cells, probably because the shots haven't been working longer then 2 weeks at a time, and has instead started asking my dad what he thinks they should do. He keeps telling my dad that he thinks it's the chemo causing his red and white cells to go down.

Dad goes in for chemo on the 31st so I'm doing my best to get as much info together for him to help give him an informed decision and trying to find some good questions for dad to ask the Dr.

Dad is thinking about stopping the chemo but doesn't know what will happen or if it's even a good idea at all. If his MDS gets worse it will turn into AML and then we've been given a prognosis of about 6 months if it does. He was extremely high risk when he was diagnosed. His Dr. told him that if he stops the chemo he has to be off of it for at least 2 months to see any results. The entire family is not only scared but confused too and none of us knows what to do.

I'm not saying you have to tell me what to do but I'm wondering if anyone has any good questions to ask the Dr. Just a good place to start so we can get the most info to make the best possible decision. We have all come to piece knowing that we may only have a few years left with him so we're all doing the best we can but we don't want to shorten our time if we can avoid it lol. Thank you sooooo much for any and all responses! Any and all help is greatly appreciated!!
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Old Tue Oct 16, 2012, 06:42 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520

I'm sure it's very hard for you to help your dad if you're getting information filtered though his recollection of conversations with his doctor.

I assume that the shots you are talking about are Neupogen. If it's correct that the doctor is having your dad decide whether or not to take Neupogen then the question for the doctor is "What is the tradeoff?" You need to know the risks and likely outcome if he takes it and the risks and likely outcome if he doesn't take it. The doctor can't answer with certainty but you want the benefit of his medical knowledge and experience.

There are known side effects of Neupogen but some of them are merely annoying or unpleasant, not life-threatening. Even though you have to consider quality of life, if it was me and I had no other information I'd be inclined to continue the shots because they were having some effect, and an infection due to a very low white count can be devastating. If Neupogen shots have only a temporary effect then I'd ask how often I could take them.
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Old Tue Oct 16, 2012, 08:21 PM
Sarah.P Sarah.P is offline
Join Date: Sep 2012
Location: OKC
Posts: 14
Thank you! I'll make sure that goes on the list to ask the Dr.!!

Also what would be everyone's opinion on stopping the chemo. I can't seem to find very much info online as to whether or not it would be a good idea or a bad one. Does anyone know any good questions to ask the Dr. to make the best possible decision as to whether to keep doing the chemo or just stop doing it?
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Old Tue Oct 16, 2012, 11:55 PM
SLB SLB is offline
Join Date: Mar 2012
Location: Brisbane, Queensland, Australia
Posts: 130
Hi Sarah, how long has your dad been having his treatment? Has he had another biopsy to see if it is having any effect? For example,has his blast count decreased? Has any cytogenetic changes improved etc .. I was told that a BMB was really the only way they could tell if chemo was being beneficial?Also chemo can take months before it starts improving things.. good luck with your quest.. there are many more knowledgeable people here than me but they are some of the initial questions that come to mind. Sorry if u answered these questions elsewhere.Sharnie.
Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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Old Wed Oct 17, 2012, 02:17 PM
Sarah.P Sarah.P is offline
Join Date: Sep 2012
Location: OKC
Posts: 14
I think it's been about 6 months this month. When he goes at the end of the month that will be his seventh treatment. They did do a biopsy after the fourth treatment and it worked wonderfully. He went from one end of the scale to the complete opposite for his blasts but his anemia came back and I think that's what is bothering him. He's sick of feeling run down with no energy I guess. He said he's sick of being on antibiotics constantly and that's why he wants to talk to the Dr. about stopping chemo. I don't think he has completely grasped what the Dr. told us when he first started chemo. We were told that he would have to be on chemo for as long as it's working or until he refuses it but either way we will only have a few months to a year with him once the chemo stops working.

I'm worried that my dad thinks he's cured and from what I've been told by his Dr. and what I've read online the only cure is a marrow transplant which he doesn't even come close to qualifying for. I just don't want him to take himself off the chemo if it's just going to make him sick again but before he can go back on the chemo. I don't want to loose him any sooner then I have to which I know everyone understands no one ever wants to loose someone. It's hard because he looks to me for help and I'm having the hardest time finding info to help him.
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