5q- vs 5q- syndrome

[Zoe]

Maybe this is not an important distinction, but having just been diagnosed I am coping by retreating into intellect and this question is bothering me.

Most of the research I have done says that 5q- syndrome is q31-33. My cytogenic report states (5) q13q33. Are these different? Does it really matter? I know it still places me in a low risk category as long as there are no excess blasts and the -7 doesn’t show up again. I get those results back December 21.

I hope this is not a silly question. I am just trying to understand because it helps me cope and not get gloom and doom in my thinking.

Zoe

[Sandy L]

Hi Zoe,

No question is foolish. I do not know the answer but I hope someone else on the forum can help more.

Sandy

[J.claire]

this might sound crazy, but I have found a few misspellings in my pathology reports from bmb,from a “center of excellence,” so maybe it’s a typo.

[Zoe]

I finally found some info. It seems it is typed 5q- syndrome by the characteristics, not the karyotype (other than the fact that 5q- can be the only abnormality). 5q syndrome has moderate to severe anemia, normal to high platelets with mononucleated megakaryocytes, and less than 5% blasts. So far I have that covered. What is confusing is that not everyone considered 5q syndrome has all of these, and some who start with this go on to other aspects of the disease. I wonder if the diagnosis changes then, i.e., they say, “Oops, we were wrong, it wasn’t 5q sydrome.”

So far, my counts are holding, they are off, but they have been about the same for the past year. If it turns out I really don’t have -7, maybe they will continue to hold for a long time. Heck, maybe if I do have -7 they will hold for some time.

I am starting to relax a bit, but I think I may get anxious again next week about Wednesday (the day before I get my new results).

It is frustrating that I have to pay for the first BMB that was so poorly done and had to be repeated two weeks after receiving the results from the first one.

Zoe

[helenr]

Zoe

I think it means that the q arm of the 5th chromosome has breaks at 13 and 33. This is similar to my husband’s diagnosis in 2002. It is true that it is “the best type of MDS” to have but that is little consolation when you are told a diagnosis you would rather not have. The anaemia can be treated with red cell transfusions. David commenced transfusion in May 2003, and has just had Tx 70. You are lucky to have Revlimid available in the US as this has shown to be successful in reversing the condition . My husband has been waiting over a year for a “trial” of Revlimid to start here.

Neil on the forum has some good advice re transfusion procedure etc.

Good luck on your journey. This is a good place to gain knowledge and advice.

Helen

[Zoe]

Yes, we are lucky to have Revlimid. I admit I am anzious about taking any perscription meds, but if it keeps me transfusion free that would be great. Right now we are watching my counts, if they start dropping Revlimid will be the first course of action.

Zoe

[Lydia]

Zoe, mom has the same (5) q13q33. What is the -7 ? She gave me her marrow report over the phone so I could search the web. Will check this weekend about all the brackets, etc. There is a “7” in there, but don’t know if there’s a “-” in front of it or not.

Mom started Rev several months back and was tx free for 3 months. Then she started Exjade and the Rev stopped working (?) Co-incidence? Stopped Exjade now and will see if Rev begins working or not. Someone on this forum felt the Exjade flushed the Rev (and everything else) out of your system via diarrhea! although hers wasn’t that bad. Sounds logical to me. Will update if Rev starts working again.

Can’t believe info about your bmt report! All that money and pain! What can you believe anyway? This disease is bad enough without all the other #%#$@%# everyone has to go through.

[Zoe]

Lydia,

My first BMB showed 85% of my cells had the 5q- and showed one cell with -7 (chromosome 7 missing an allele–I think that is right–someone please correct me if I am wrong). The hematologist at the cancer center (where my 2nd BMB was done)is doing a more sensitive chromomsome test which will specifically look for the -7. -7 carries a poorer prognosis than 5q alone.

The first hematologist did only an aspiration (even then, the smears were unreadable and useless, and the pathologist called the clot sections adequete–meaning not great?). He did not do a biopsy at all. Not to mention the whole atmosphere was horrible, I cried and it hurt like heck!

The second one at the cancer center was much better. They gave me an Atavan, allowed my friend to stay in the room with me, joked and told me what they were doing each step of the way.

Did she have to start the Exjade due to the transfusions she had? Or was it from the Revlimid? I know the doctor at the cancer center said she wants to keep a close eye on my ferritin levels. Yes, please let us know if the Revlimid starts working again. Is it just her RBC that is affected by the disease?

Your mom sounds like a trooper. Here’s hoping her counts hold at good numbers.

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