I need a little help…….Please

[katiebear]

Hi my name is Katie and my dad was recently diagnosed with RAEB 2. Just today he let me look at the results of his BMB. I’m trying very hard with little luck to grasp the meaning behind alot of the info on it. Does anybody out there know of a website that explains all this? What is an M:E Ratio? Any help or direction would be greatly appreciated…………katie

[patti]

Katie,

The main page of this MDS website can direct you to lots of information regarding his MDS. My MIL is RAEB-2 also so if you have any other questions I will try to help you with them. I’m not sure what the M:E ratio is. I’ve not seen that before. Do you know what type of MDS your dad has? How old is he? What’s his general health like? Is his MDS secondary to previous cancer treatments? But for a start, go to https://www.mds-foundation.org and you can search around for lots of information they provide.

All the best,

Patti

[katiebear]

Patti,

Thanks for responding so fast. I really appreciate it. My dad has RAEB2. He will be 66 in October. He’s never had cancer before, so this isn’t secondary and that much I know makes it a little better if that’s possible. He also has no abnormal chromosomes. He’s in relatively good health other than he has a pacemaker which he’s had for six years. He’s being treated at Sloan and that’s a good place to be. I also know that my aunt is a perfect match in the event he can go that route. He started his 4th round of Vidaza on Thursday of last week and he has his next BMB Sept. 6th. He had no reaction the first 2 rounds, and they upped his dose the 3rd and 4th rounds and his counts went up a little bit as of last Monday. He’s happy about that. He’s had almost no side effects from the Vidaza other than fatigue which he had anyway and yesterday he complained of boil like lumps on his body. I’m glad he’s tolerating it well. He refuses to give into the fatigue and he won’t listen when I tell him to rest. He’s also not eating too much and I’m also on him for that. He’s probably tired of me, but I can’t help it. We lost my mom to lung cancer a little over two years ago and we are still struggling with that loss. The results of this BMB are all Greek to me. I guess none of this is easy and I don’t mean to complain. I have read alot of your postings and I admire you very much. Thanks for your help.

Katie

[shirlsgirl]

Hi Katie,

The M:E (myeloid to erythroid) ratio Is the ratio of white cells to red blood cells (in all stages of maturity) in the bone marrow. Normally, there are three myeloid precursors for each erythroid precursor resulting in a 3:1 ratio.

Best wishes to you and your Dad!

jody

[katiebear]

Hi Jody,

Thanks for the info. So if my Dad’s ratio is 4:1, is that bad? Common sense tells me it’s only one off, but you never know with this nightmare. The biopsy also shows hypercellular marrow at 70%, predominantly myelomonocytic precursors showing left-shifted maturation. His maturing cells show down-regulation of Cd10 and up regulation of HLA-DR. The first time he went to the onc. he didn’t tell anybody so I couldn’t ask anything. I suppose I should just wait until Sept. 6 when he goes again and I can go and ask, it’s just that all the waiting is very hard as everybody here must know.

Thanks very much,

Katie

[patti]

Katie,

I think the waiting is the most torcherous part of diagnosis sometimes. Even bad news is better then the awful waiting. It sounds like your dad has a lot going for him in terms of general health. I can only recommend that he eat well, nourish his body with good, whole foods and maybe work with a naturapath if he’s willing. Since my MIL isn’t doing vidaza I can’t be much help there but it sounds like he’s tolerating it pretty well.

As hard as the waiting is, you have made some good steps already. Having him at Sloan is good. It seems like he’s on his way already with some treatment.

Oy, complaining? No worry. You are not complaining. The beginning of this disease when you’re trying to figure out what everything means, what the prognosis is, worrying about how he’s doing, etc. It all comes with the territory and I don’t think anyone sees it as complaining so much as a desire to know what’s coming and what you should do. Been there, done that and bought that t-shirt. Talk all you like. It’s the best way to get through your questions and concerns.

patti

[Russ]

Katie,
Suggest you try the web site:
http://www.aamds.org/aplastic/
Sign up to have the literature sent to you
that explains all the ins and outs of MDS,
various treatments, and glossary of terms.
Hope this helps. I know that prayer helps
so each night I pray for those who are fighting this disease – including me.

[katiebear]

Russ,

Thank you for the website. I’m going to try it right now. Thank you for the prayers, I’m praying too. How did the Vidaza work for you?

Katie

[shirlsgirl]

Hi Katie,

I think an M:E ratio of 4:1 means he’s producing more white cells than red cells. Which corelates with your Dad’s hypercellular marrow that shows a predominance in myelomonocytic cells.

Glad to hear that your Dad is tolerating the Vidaza well. I know what you mean about waiting being soooo hard. Hang in there. Wishing him luck at his Sept. appointment.

Take care,

Jody

[katiebear]

Jody,

Thank you for your response. I am slowly starting to understand the terms. The website Russ directed me to had a good glossary of terms which helped alot. My dad has one more day of Vidaza and then he is done until his biopsy. He felt awful last night. He is very tired, and I asked him if he rested and he said he refuses to give into it. I wish that he would just rest already. Anyway, thanks again for your help.

Katie

[Russ]

Katie,
Regarding the Vidaza, I thought it was working but my last bone marrow showed blasts increased from 10 to 18% so Doc put me on Dacogen.
Regarding your Dad’s lethargy – could be the low RBC. A bit of Prednasone to taper off of might help.
Best wishes

[maueenh]

Russ,

Did the Vidaza reduce the blast %s at any point? My father has been on Vidaza since June and his blood counts are up but he has not had a BMB yet. What was your experience with the Vidaza?

Thanks
Maureen

[katiebear]

Maureen,

My dad just finished his 4th round today, and his BMB is scheduled for Sept. 6th. The waiting is very hard. His counts went up a tiny bit last week and as of Monday of this week they were down again. I keep thinking what does that mean, and does it mean it’s not working. Are your dad’s counts up consistantly? I know everybody is different, I’m just curious. Russ, I think my dad is on Prednasone. Thanks for the info, and I am still praying.

Katie

[maueenh]

Katie,

I’ve heard that Vidaza can take 4 cycles before you see improvements. My dad has had a definite improvement in his blood counts since beginning Vidaza but they do fluctuate during the month. A couple of weeks after the Vidaza the counts seem to fall then creep back up. Everyone is different but if Vidaza does not work then there is Dacogen as Russ mentioned. I will keep your dad in my thoughts and prayers.
Maureen

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