Chromosome 13 abnormality

[Kidgee]

Does anyone have a chromosome 13 abnormality or know what that means? We have an appt. with the hematologist tomorrow, but were told by the doctor last week (via e-mail) that my Dad does not have the "usual" MDS chromosome abnormalities, but that he does have some chromosome 13 issues. The doctor thinks it may be related to the fact that he had/has non-hodgkins lymphoma. If my Dad has MDS (and we aren't even certain at this point based on this new information), we believe it to be secondary to chemotherapy. I have read that most secondary MDS has multiple chromosome damage, in particular monosomy 7.

Thanks for any data you all might have!

Melissa

[Ruth Cuadra]

Hi, Melissa.

It's true that abnormalities of chromosome 13 are not the "usual" ones for MDS. More commonly, patients will have problems at 5, 8, and 20. I don't think that chromosome 13 necessarily speaks to a poorer prognosis, but may reflect the relationship of your Dad's MDS to prior non-hodgkins lymphoma. When I was diagnosed with MDS, I had a few bone marrow biopsies that showed Trisomy 15 (three copies of chromosome 15), which was never listed among the abnormalities associated with MDS.

I'm interested to know what the hematologist says after seeing your Dad. Let us know when you can.

Regards,
Ruth

[LeslieAnn]

Hi Melissa:
According to my most recent BMB, I have 20q and 13q deletion. Originally, only 20q was identified. I don't get the impression from my doctor that there is a "typical" profile for an MDS patient. I, too, would be interested in what your dad's doc has to say when you follow-up.
Leslie

[Kidgee]

We met with the doctor yesterday and she told us that based on the findings to date, Dad does not have MDS...we were thrilled! She told us that he has very minimal dysplasia, that all "dysplastic chromosomes" were negative (I assume she's referring to the 5, 7, 8 as dysplastic chromosomes, not sure), and that his red blood cell count and platelets seem to be coming up the further and further away he gets from his radiation treatments (his HGB was 10.6 yesterday...and even though he got 2 units two weeks ago, this number is higher than she expected it to be). She said that the FISH analysis showed very few cells with the 13q abnormality and that they were not proliferative, so she believes them to be a consequence (or something "left over") from his non-hodgkins lymphoma (chromosome 13 abnormalities can be seen with NHL). She confirmed that he did not have any other chromosome abnormalities, including 20. He is going to continue getting Aranesp every two weeks, but will stop once his HGB reaches 11.5 (I guess it's risky to take after that point -- blood clots). This news is so welcome to us since my Dad has NHL and should that recur, he would not be able to receive any treatment if he had MDS. He is going to get a PET scan in two weeks to re-baseline his NHL tumor.

Cheers and good luck,
Melissa

[Ruth Cuadra]

Melissa,

This is very good news! I understand that because the abnormal chromosome 13's are non-proliferative, they should eventually disappear from your Dad's system. Sounds like he just needs more time to recover from his NHL treatments. Thanks for sharing this information.

Regards,
Ruth

[Zoe's Life]

What wonderful news. I am happy for you all. Thanks for sharing, we love to hear good news.

Zoe

[Kidgee]

Although my Dad continued to be diagnosed as NOT having MDS, his blood counts never did get a lot better since the below post. He ended up catching something (fevers of unknown origin) in mid-November, and, after spending 17 days in the hospital in November, and another 46 days in December/January/February...he died on 2 February, eight days before his 68th birthday. He got another bone marrow test in November and there were no chromosome abnormalities in that test, not even the 13th chromosome, so it appears that it did eventually disappear from his system. We still do not know what caused his fevers (other than the fact that he was neutropenic). His December hospital stay resulted in one calamity after another: he got aspiration pneumonia and ended up in the ICU for 12 days (was on a respirator and because of his low platelet level he almost died when he had a bleed in his lung). He made it out of the ICU, but then contracted a really evil fungus on his neck called mucormycosis...they had to remove a large part of his neck to get rid of it and then started him on some really horrible anti-fungal medication. In the end, he contracted pulmonary edema from the hospital giving him too many fluids (mainly blood products) in preparation for a surgery to debride his wound. I am sorry for posting such a depressing update, but since I visited this site last year many times, I thought I'd post a final follow-up on my dad. We still don't really know if he actually had MDS or not, but based on the fact that his blood counts never really improved, I believe he may have.

[Birgitta-A]

Dear Kidgee,
How sad news. My thoughts and prayers go out to you and your family. The infections in neutropenic patients can be dreadful. According to chromosome aberrations in MDS more than 50 % of the patients don't have any chromosome aberrations (found with the methods they have today).
Warm regards
Birgitta-A

[Ruth Cuadra]

Dear Melissa,

I'm sure I speak for everyone here at Marrowforums, when I say how sorry I am to hear that your father passed away. It sounds like the last months were pretty horrific for all of you, but I think he was lucky to have family nearby and helping him fight this battle. It was very generous of you to want to let us know what happened.

I hope you have many happy memories of your father that will be a comfort to you now and in the future.

With sympathy,
Ruth