Jane from England, we're glad you're posting--welcome. My husband has a cousin Jane in England. Hope you're not her!!

Your relationship with your mother sounds wonderful. I had the same with mine until her death at 87. As you know, everyone handles the hovering MDS specter differently. Personally, I choose to invite it into my life & make it "just another element."

So your mom has the benefit of ignoring it as much as possible, but getting info through you, a good scenario. She sounds like a terrific gal, & I'm sorry that she has progressed to AML. Hopefully, she will get a good long remission.

Yes, it's our young whippersnappers in our leaky boat that tear at my heart. I so hope that each of them will get a successful BMT, which us old folks cannot.

But I'm in agreement with your mom. I've had a very good life (& still am having one). We all have friends/family whose lives have been sadly cut short by so many things, including accidents, that I count myself lucky. My own son only made it to 36, and here I am at 71, back from yet another delightful cruise with friends.

Jeanine, all you need is one match, right? Keep us posted on the next steps.

I don't have any American relatives, so I'm probably not that Jane - but if it turns out I'm a long-lost family member, that would mean free acommodation across the pond, yay!

What cruise line did you travel on? Was it fun? We are going on RCL - my dad is going to ask my mum to renew their vows on the cruise ahead of their 45th anniversary :)

@maryabell - my understanding is that most people's HG - or rather their reaction to their HG - is different, so my mum was down to just above 5 when she was first diagnosed and rushed to her first transfusion, but feels fantastic at anything above 8, but she has met people in her hospital who come in because they feel terrible on 9.5. She has been as high as 10.3 and felt no different to how she did on 7.5. I suppose it must be a combination of factors - the numbers are pretty confusing when you take all the platelets, neutrophils etc into account.

marybelle I think it depends on how dependent one is on the transfusions. for my dad if he were to stop he would not live long. that is all that is keeping him here with us at this point. I would talk to your oncologist about it at length about it first. Dad stopped eating back in May and almost passed in June because of it. his hemoglobin got so low. Since he started eating again he is more stable and gets blood about every 10 days or so. hope that helps.

maryabell - I've only been on transfusions for a few months. The time difference has varied from every 2 weeks a couple of times to now going on 4 weeks and still not feeling the need though am a bit short of breath. I'm high/low to low intermediate MDS.

When I discussed with my oncologist what typically is the normal for where this disease goes and what usually is the culprit that gives us the final moment he said that (not giving any time frames as that's a real unknown at these stages) the two things that are the typical cause of death are an infection that can't be overcome due to low immune system or if the MDS progresses to the point that combined blood production and transfusions will not keep enough of the required blood available to keep organs functioning. (Sorry that's a bit blunt but part of being an informed patinet which we all need to do).

I asked my doctor if when one is onsidered "transfusion dependent" did that mean that it was due to quality of life needs for transfusion or was it related to the requirements for organ functionallity. He said it could be both and usually starts with the quality of life which could go on for some time. Not getting transfusions when they are needed because of low counts could put one at risk just due to the needs of the body.

All of us are different so the answer has to come from a reality conversation between you and your doctor as to what your consequences would be.

BTW I'm a young whipper snapper at 65 but also have hg counts that typically are in the 8's with one dip into the 7's and the HCT levels (which he goes by as well) are typically in the mid 20% range. Personally, I have a deal with the Lord that I'm going to fight for every minute I can get and if a transfusion will keep things ticking then I'll keep taking them.

I hope that helps some. As I said it's a bit blunt but, by coincidense, is what I had just talked with my doctor last week about.

Take care and God Bless,
Mike

We just returned from the hemotologist. He suggested MORE transfusions to get the count between 10 and 11 to see if it would improve his energy level which is close to 0. He will try a bit more.
Thanks so much for the feedback. This group is so supportive.

My husband has just gotten the results of his second bone marrow biopsy since diagnosis in May of this year. The doctor said they used a new lab and the results were about the same, meaning the Vidaza has not begun to work yet! I have faith that this 5th round will see good results!!!!
BUT, having said that, I was more than a little rattled by some of the words on this new lab's report. My husband has category RCMD but the report also said: "Although there is no significant increase in blasts, significant peripheral thrombocytopenia and cytogenetic findings suggest an unfavorable prognosis."
I'm the one who does all the research and reads everything, and I did NOT show that to my husband. I was just wondering if anyone else with RCMD can offer any input as to whether they have responded favorably with this type of MDS. My husband has a very rare chromosome (or chromosomes) abnormality, that has only been documented in one other case in the medical records.
I guess I'm just grasping for anything encouraging. He has not had to have any transfusions and his platelets are the only thing affected. But, thankfully, they did go from 37 to 53 after his last round of chemo.
God bless all of you and your caregivers that are having to deal with this illness. I'm just concerned about those words "unfavorable prognosis."
Thanks for any encouragement.
Linda

In reading through my previous post it occurred to me that my question implied that I didn't know that MDS could lead to an "unfavorable prognosis." That is not the case. We are the ones that the doctor told us the day my husband was diagnosed that he had 1 to 6 years. Of course since then through reading and talking with other, I've learned that many live much longer. It was just that with him being RCMD Int-1, I thought that was a good thing (if there is such a thing with this disease), and if he begins responding to the chemo a better prognosis. So I was just thrown with the labs wording of "unfavorable." I guess it must be because of the chromosomes affected. As if there is not enough to worry about it,. I wish the lab could have kept their wording to themselves!
Linda

I wish no one had mds! it makes me so sad. my dad is rcmd also. he doesn't do chemo and only does the transfusions about every 10 days. dr said as long as he doesn't need platelets he might have a couple of years. he is 81. now we find out he has shingles! now I am scared. he did not need any kind of infection!

Poshshorty,
The doctor at Emory where we went for our second opinion put my husband on Acyclovir 400 mg twice daily to help protect him against Shingles. Evidently MDS patients have a greater risk for contracting Shingles.
I sure hope your Dad is able to fight this infection and recovers quickly.
We're all on this rollercoaster ride together. Let's hang in there both for ourselves and our loved ones.
Linda

Linda...I just read your post. I am on Vidaza and finished my 18th month. It took me about 10 months or so to finally hear the work "remisssion". When I was first diagnosed, there were three of us on the same clinical research trial for oral Vidaza. Two out of three of us went into remission after about 5 treatments. I was the one that did not. I was so disappointed and struggled until this past summer with the MDS/CMML (monomylocytic leukemia). I have a transfusion of two units about every 3 months and feel great until my hemoglobin gets low again. I am 61 years old. I have two siblings who were tested to become a bone marrow donor and neither one were a match, but the stem cell dept. from MD Anderson phoned me yesterday and said they have about 188 potential matches. I am far from needing a transplant but want to be ready if/when the time comes. I guess what I need to say is DO NOT give up on the Vidaza. I almost had and it took me far longer than the 6-10 months they told me it would take to get a positive reaction. Keep the positive thoughts and I pray that he will get good results from this drug.
Susan

Linda so you are in Ga also? I am in northeast Ga!

We live about 45 miles southeast of Atlanta. Our mailing address is in Jackson, Georgia but my husband gets treatment at Georgia Cancer Specialists in Stockbridge. We went to Emory for a second opinion and he and our oncologist/hematologist at GCS confer with each other about treatment. You know, kind of like two heads are better than one!
I thank God every day for this forum. It's great to know our loved ones are not in this leaky boat alone.
Linda

oh cool! I use to live in Clayton County! howdy neighbor lol. I am about 65 miles ne of atlanta lol

Hi Neighbor,

Hope your Dad is doing okay. My mother-in-law had a horrible case of shingles many years ago. The doctor said it was the worse case he had ever seen. Of course she didn't have MDS, thank goodness. I'm glad they started my husband on the Acyclovir and I hope it keeps him from getting it.
This is the second case of shingles this week that I've seen on the MDS forums. That can't be good.
God bless all.
Linda