Sorry about the spelling errors, for some reason my edited post did not appear. :(

hey gang! good to see everyone! I am still around just dealing with some minor health things but nothing serious. I am like a bad penny! haha I keep turning up! luv u guys!

Hi Everyone -
I'm looking for some answers and while I've googled just about everything, I now find myself more confused than ever. Hopefully you can help. My father was recently diagnosed with AML and they said he has MDS as well. So we are assuming that the MDS turned in to AML. My dad is very diligent with his health and goes every year to his family doctor who always runs a complete CBC with differential. How is MDS diagnosed? I would think a blood test would pick it up, but his blood work was in the normal range in December. I looked at his blood work from December and he was on the lower end of the spectrum for some of his counts, but nothing alarming. My blood work looks very similar to his at that time. I'm even out of the range low in my WBC. I am just so confused and disheartened. Should they have picked up on my dad's MDS months ago? Should I be concerned for my own health as well? Any insight you can give is appreciated. I wish all of you good health. Be well. xo

Your dad needs to have a bone marrow biopsy. That will give your hematologist what they need. This will also show how many "blasts" he has. This is the diagnosis for MDS. Hopefully you are going to a he hematologist that specializes in MDS and leukemia. AML can be part of MDS. What kind of treatment is he on?

Hi Susan -
Thank you for your reply. My father has had several bone marrow biopsies, been through chemo for the AML, will be getting more treatment in the near future. After the diagnosis and his first remission, they said he has MDS, so we assume that the AML came from that. His blood work was fine in December - he was toward the lower end of some of his counts, but nothing alarming or out of range. I just wonder how he could've possibly known he had MDS prior to his AML diagnosis? It makes me worry, also, because my counts look very similar to his before his diagnosis - I'm at the lower end of the spectrum with counts. I'm even out of range low with my WBC. In a few days we will choose which drug to do next. That will hopefully throw him in to remission so he can get his bone marrow transplant. Be well. xo

We are all being treated for MDS to prevent us from going in to AML. What is your dad's age? Is he a candidate for a bone marrow transplant? I go to MD Anderson in Houston, Tx. for treatment once a month for MDS/CMML. My daughter was also concerned because she has also been anemic. I was told they don't think MDS is genetic, but I have known two families that where both brothers had it. My son is also anemic, so I don't think they knw for sure.

Hi Susan-
My dad is 68 years old and was actually scheduled for his bone marrow transplant at the end of this month. They had to put that on hold because he just relapsed. The doctors won't do the transplant unless he is in remission from the AML. You are being treated at a fantastic institution - that's great. I was told that MDS is not hereditary, it just made me fearful when I saw his bloodwork from a few months ago that looked completely normal and then he got the AML diagnosis not long after. May I ask how you were diagnosed with MDS? I appreciate your help. Be well.

Hello from a new member, also! I also was diagnosed 3 1/2 years ago. Not quite as lucky, my bmb showed 10% blasts, but living a normal life with my "wonder drug" Dacogen one week per month! With all the different subtypes, once you are diagnosed and placed on treatments,etc. you can live a normal life! Take care and stay healthy!

You know, I can't help but think that some of these doctors are wrong about heredity. My dad died of MDS the day before his 75th birthday. I was diagnosed with it about 3-4 years ago. Some of my online research bolsters that belief. I also have seen somewhat related illnesses in my near-immediate family that raise suspicions.

But I suppose in the long run it doesn't matter, just that if you are anemic, you must find out what kind of anemia you have & go from there.

In your dad's case, 2Boyz, it's strange that he was diagnosed with AML first, then MDS. Usually the progression appears to be from MDS to AML (what we all fear). Also, at age 68, I'm quite surprised that the doctors would consider giving your father a bone marrow transplant. It is a rigorous procedure usually reserved for younger patients.

In my case, I'm not on Dacogen or any other chemotherapy, only Aranesp shots every other week. My Hgb is in the mid to low 8s at the moment, holding steady for about 6-8 weeks. I've had one transfusion so far. My Dr won't order another until I'm below 8. I felt so normal following the first transfusion, I almost wish for the 7s! Sharon

Hey there again.

Sharon thanks for clearing up the 1800 ref. OUr friend was a major positive when I first got this junk and I'll be forever grateful for all he did to get me past all the feelings. I"m sorry to hear about your belly problems. I know it drives me nuts to get something extra to have to deal with. It's like REALLY LOL LOL. I'm starting to have some occasions where I am saying something, know what I"m saying but the words don't come out anywhere near it. It's really frustrating. That and I am much more woozy now when I get up or am walking. I've figured out if I just don't move and am real quiet everything is just right LOL

on the transfusions when I go in the count is normally in the low to mid 8's and kicks up into the 9's afterwards. I'm having difficulty in the low 's and get to really sucking air in the 7's. The docs and the nurses in oncology and day surgery all chew me out for waiting so long. As they say they like to keep my pink instead of pale and yellar hehe. As for the platelets I don't get any transfusions with them. If I show any signs of bleeding issues then we will. I stay careful, try not to bump into things to keep the bruising down and let Mama do all the kitchen cutting (well most anyhow). I'm at home most the time so not exposed to the germs so much and when we do go out I'm real careful about what I touch and who I get near. I'm a walking bottle of GermX LOL

You all have a blessed and great weekend

Mike

TwoBoyz...I was severely anemic, no energy and heart palpitations in March of 2009. I was misdiagnosed for a year. My family doctor did a CBC but not with differential. A differential gets to the bottom of the anemia. I went to a hematologist in Illinois and they could not get the needle though my hip bone to do a bone marrow biopsy. I knew I had to get out of Illinois and went to MDAnderson where I am treated monthly. I am on oral Vidaza. I was diagnosed at MDA with MDS/CMML. I am 63 and also have apps. with a transplant Dr. Every 4 months. Basically just waiting for the chemo to quit working. I have a blood transfusion about every 10-15 weeks. My platelets and whites are still good. How is your Dad doing?
Sharon...I do miss Chris and his posts that we always looked forward to. I haven't been posting much but do check in occasionally to see how everyone is doing. Hubby and I were in Germany, Austria and the Neverland's for almost 3 weeks. I plan my transfusion usually a little earlier then when a trip is planned. This is just a bump in the road. MDS doesn't control me like it would like to, I will control it as long as I can.

Hi everyone,

I've been remiss in posting lately, as I've had a paying job for my spare time. Hgb still stable, & belly problems not too bad right now, so I'm doing pretty well. Have a CAT scan scheduled for after T Day.

I figure, Mike, that Mama has a tight rein on you. But some of your symptoms nowadays sound a tad scary to me. You will be careful, I know. I try to remind myself that if I start to fall like a felled pine, I'm supposed to crumple or go down on one knee. But I think shock takes over when I begin to tilt, & I don't think at all!

Susan, I hope you had a great trip. I've always wanted to go to the Netherlands, but probably won't. No trips planned at the moment. Sharon

Hi Everyone!
Sure has been quiet on here. I think everyone must just be busy with the holidays. I know I have been and it seems to have taken alot out of me. Along with the holidays, my husband is recovering from a 3-level lumbar spine fusion he had on Nov 5th. So this month has been extremely hectic and tiring.
I do have a question though about HLA typing. My oncologist had mine done last April and my insurance after reviewing my records from the doctor decided that it was not medically necessary. I recieved my eob in the mail the other day. I have 180 days to appeal and my followup appt is in January so I have time to discuss with my doctor what records he sent the insurance company that they would deny this very costly test. My insurance has put the burden of the cost on me. Has anyone else had this problem with getting this test paid for by their insurance. I have Unitedhealthcare through my husband's employer. I appreciate any feedback on this to help me with my appeal so the insurance will atleast cover part of it. I know one thing for sure in the future before I have any type of testing done, I will be checking as to whether or not it is needed and check with my insurance to find out if they will pay for it.
Thanks in advance for any help anyone can give.

Janet

Hi John my mom is 86 and has lived with MDS for about 6-7 years she gets xfusions about once to twice a month she gets week and appetitie comes and goes .....stay encouraged ...that is your best weapon against this disease .

Janet, I can't offer any help about your testing. I hadn't even heard of it until you wrote. But I wish you luck in your quest to get it covered by insurance. If it isn't, your Dr's office has been remiss. Mine checks.

Tecia, good to hear from you again. Wow, lots of xfusions for your mom! I still have only one to my name. Altho I liked how I felt for a long time afterward, I guess I should be grateful that I've gone so long without a second one.