secondary MDS - new here

[sanadon]

I'm new to this sight so I'm just learning to get around. I'm glad I found all of you! MY husband, Henry, was diagnosed 2 weeksa ago with secondary MDS. He had chem last year for CLL. We have an appointment for an "evaluation" at Stanford on August 25.
What should we be expecting from this meeting? We have lots of questions that we have written down and plan on taking them with us to the meeting.

I'm glad I found all of you, I'm hoping that by reading through people stories we can get some sort of a clue on what to expect. (I think I have read every site there is on the internet now). Thank you all for your time and help.
Sylvia

[sanadon]

OH,and a quick question... Henry has always been an on the go sort of person... from reading these forums, I'm wondering if that is still possible???

[Neil Cuadra]

Hi Sylvia.

If the one-day conference is anything like the ones I've been to in the past, you'll appreciate the chance to meet MDS experts and other patients in person, and lots of useful information will be presented. Plan to take notes. Some patients will be recently diagnosed like Henry, some further down the road. Having a chance to ask questions is great, although it's for a limited amount of time, and it's not an individual consultation like you'll get at Stanford. You'll probably learn not only from the lecture and any questions you get to ask but from the questions other people ask as well.

If you don't already have them get the MDS booklets from the Aplastic Anemia & MDS International Foundation. The booklets were just updated, with the new versions released last month.

It's good that you are making a list of questions. Maybe Marrowforums members can answer some of them before you take the rest to the one-day conference. The best source of information will continue to be Henry's own doctor, since he or she can speak with authority specifically about Henry's condition and prognosis.

What tends to happen at these short conferences is that everyone gains a better understanding of their disease but many find at least some of the slides or explanations to be over their heads. It's a complicated disease and there are multiple types of MDS. But as we continue to educate ourselves, we understand more and more of what the doctors and medical literature say. I'm sorry to hear that Henry has secondary MDS since it can be tougher to fight than primary MDS, but if there's a bright spot it's that you probably already understand the basics of blood counts, what bone marrow biopsies are, the types of white cells, what chemo treatment involves, and so on.

It's great that Henry is an active person and likes to get out in the world. Being active and generally healthy gives you a jumpstart in your battle with any serious disease. He can ask his doctor for specifics about what he can do and what he should avoid, but with MDS the usual cautions are to avoid risks of injury, bruising or bleeding when you have low platelets, not overexert yourself when you are low on red cells, and avoid sources of infection when you have a low white count. None of that means you are confined to quarters, so I hope you'll get to continue your vacation plans. Within those types of limitations his doctor is likely to encourage whatever activities he is capable of. It's also good for your peace of mind to continue doing what you are used to doing, even if you sometimes have to scale things back (e.g., stay closer to home, or take a tour bus instead of climbing Mount Everest). We want to be as normal a possible!

[sanadon]

So our meeting with Dr. Greenberg will be with other people? I know they are having an all day "conference" in October and we RSVP'd to attend that...

I guess I thought this was going to be just Henry and I seeing the Dr. They have us bringing the BMB slides, all his records from the CLL diagnoses date to now... and we were told it would last about 2 hours. How can they evaluate people with others present?

I'm sorry if I sound very confused... but I am. Thank you for your help.
Sylvia

[sanadon]

I've seen that the owner of this site helps people "read" their results... can you give any input on this one, please? Here is what his Cytogenic Analysis Report says...

"Interpretation" An abnormal male karyotype with 3 abnormal clones observed. Four cells showed -5, an unbalanced whole arm translocation between 2p and 7p, and a rearrangement/deletion of 7q. Seven cells had the same -5 and the der(2;7); plus a more complex rearranged chromosome 7 with a t(2;7) translocation and a rearrangement/deletion of 7q. Four cells revealed -5, a reciprocal t(2;7) translocation, and a marker chromosome. Seven cells had a normal male karyotype. The findings of -5 and 7q- are consistent with the clinical impression of a myelodysplastic syndrome and indicate a poor prognosis."

His last blood results are: wbc 5.9; RBC 5.20; HGB 12.6; Hematocrit 40.5; MCV 78; RDW,RBC 19.8; Platelet 44;

He is rated (?) at intermediate 1.

We are aware that it isn't looking so good for us right now. But, it could be worse, right? He has stayed positive and we have faith in God. Ultimately, He is in control.

[Neil Cuadra]

Originally Posted by sanadon

So our meeting with Dr. Greenberg will be with other people? I know they are having an all day "conference" in October and we RSVP'd to attend that...

Sylvia,

I'm sorry I confused you. It was my fault; I should have been more clear. You posted earlier that you were going to the one-day conference in Palo Alto so I thought that's what you meant by "this meeting". I was describing what to expect at the conference on October 2.

Don't worry, your appointment at Stanford on August 25 will be private.

Originally Posted by sanadon

He is rated (?) at intermediate 1.

That's based on a system called the International Prognostic Scoring System (IPSS). There are four classifications called Low Risk, Intermediate-1, Intermediate-2, and High Risk. Henry's classification of Intermediate-1 is based on the percentage of blasts (immature cells) in his bone marrow, on which of his chromosomes are abnormal (all that karyotype information in the bone marrow report), and on how many of his blood lines (red cells, white cells, and platelets) are low.

From the blood counts you report, his platelets (44) are pretty low but his white blood cell count (5.9) and his red blood cell count (5.20) are within the normal ranges. His hemoglobin (12.6) and hematocrit (40.5) are a bit low. Blood test results can vary from one day to the next or one week to the next so it's important to notice what happens from one test to the next.

Originally Posted by sanadon

But, it could be worse, right?

Yes. It could be better (not having MDS at all) and it could be worse (being classified as Intermediate-2 or High Risk). However, what's most important isn't Henry's classification but what to do next, and for that you need advice from experts like Dr. Greenberg.

[Julianna]

Hi Sylvia. I'm Julie. And I have also being diagnosed with secondary MDS. I've had Aplastic Anemia (another type of marrow failure) when I was 20. And now this year at 34, I've been having problems with platelets and was diagnosed MDS. So your MDS case sounds very familiar to mine. My platelets are usually between 20 and 30. Because it seems to be staying there, they aren't doing anything right now.

However, I do have a donor standing by for a transplant. Because of my age and prognosis, bonemarrow transplant (BMT) is a really good option. But recently my Dr told me that they are going to wait until the risk of disease is the same as risk of transplant... if you know what I mean. BMT has its risks, but when it works well, it can bring miracles! There are many of those miracles here on this site.

Hope your appointment goes well. Watching and waiting is often a painful process in this disease. But at least I hope the Drs can clarify things for you, so you feel better about the future and just getting on with life while you can. That's the last thing my Dr told me the other week. LIVE your life!

All the best,
Jules

[sanadon]

Thank you Neil and Julianna for your replys.

Julianna, when were you diagnosed with secondary MDS? It seems pretty smart to wait for the BMT until the risks are about the same. I never thought of it like that. We're okay with the whole watch and wait thing... that's what we did with the CLL. This hasn't been as easy for me to deal with but Henry is as positive as ever! Don't get me wrong, I don't go around with doom and gloom, but I am searching the internet for some knowledge. Thank you for your responce. I pray all goes well with you and the BMT when ever it happens. Keep us all posted!
Sylvia

[Julianna]

Hi again Sylvia. I'm glad that Henry is so positive... I could probably learn a thing or two from him.

So yeah, I was diagnosed a few months ago with intermediate MDS. But I've been having platelet problems for over a year now. I had to have surgery last year and needed platelet transfusion to get through. I knew something was up... but it took a while before they would do a biopsy. But suddenly I was dealing with platelet counts of 20 and so then biospy test showed I have a few cytogenic problems which confirm MDS.

If u have any other questions... maybe I can help. All the best with your appointment. Jules