Chromosome 1

[Greg H]

Hi All!

Any of you MDS folks have an abnormality on Chromosome 1? I've got dup 1 (q21q32), which looks pretty darned rare. I can only find two articles on it, both behind pay walls, and I think they are both just case studies.

I have Trisomy 8 in the same cell line, and there's plenty of info out there on +8, but I'm having trouble finding anything useful on Chromosome 1 abnormalities.

Thanks!

Greg

[Al's Wife]

Greg,

My husband also has a rare chromosome defect, only seen in one other documented MDS case, according to the doctor at Emory.
Hope you have good results with whatever treatment is available for you if and when you need it.
My husband had his bone marrow biopsy on the 13th and will get the results on the 27th, the day he is to begin his 5th round of Vidaza. So far his numbers have been down, so we are hoping for better numbers on the 27th, with a lower blast count especially. His blast at diagnosis on May 26, 2010 were less than 3%. I'm just praying that they will still be low.
With no other cases like his - as in your case - it's hard to know which way his disease will progress. Of course from what I understand, every case of MDS is different and responds differently depending on the individual person. My husband has been very depressed here lately, especially with his platelets staying down. I hope you are able to keep a good attitude and if you have any pointers you can send his way, let me know. It's so hard to keep him upbeat but I'm doing my best.
God bless you ...

Linda

[Greg H]

Hey Linda!

Sorry to hear about Al's low platelets. Reading about the experience of other folks, I really feel lucky that my main problem is with my red cells instead of the whites or platelets. All my counts are below normal, but I'm not in the real danger zone, so I haven't (knock on wood) had infection or bleeding problems.

I read about one guy on another forum, 32 years old, as I recall, who walked into the hospital because he was feeling run down. The doc gave him two choices: We check you in now, or you can go home for the night and come back to start chemo in the morning. This poor guy is lying around in the hospital for four weeks doing chemo while they look for a BM donor match. I feel really fortunate reading about a story like that. I'm not real anxious to do a transplant just yet and am looking instead at a clinical trial that seems to fit my disease profile. But I've got a transplant doc and they've found three unrelated donor matches for me in the registry, so there's a bit of back-up insurance comfort in that.

I'm a real egghead, so the key for me has been learning everything I can about the disease. But that would probably just depress some folks. Of course, I have to turn it off too occasionally, forget about it, and go back to life as normal.

Is Al eligible for a transplant? If you're at Emory, I'll bet you've got some mighty fine docs looking after him.

Take care,

Greg

[Julianna]

Hi Greg. I have an extra chromosome 1. And half of 12 missing. 4.5% blasts last BMB a few months ago. My platelets are the main issue for me. They go up and down a lot and sometimes frighteningly low. I'm always having problems with bruising and bleeding. I have a matched unrelated donor waiting for me when I need it. My MDS is secondary, so the Doc suspects a more aggressive progression as time goes by. Don't know if this helps u at all. Just know that you're not alone in this!

I am doing ok really. Enjoying the life I have while I can. Take it easy!

Julie

[Greg H]

Hey Julie!

Glad to hear you have a donor out there. That is a big comfort -- kind of like and ace in the hole.

I did a little checking on the web and it looks like your Chromosome 1 issue is like mine -- pretty rare (or at least, not much reported on the web.)

Thanks for responding. It's beginning to sound like MDS can pretty much mess with any and all chromosomes.

I'm with you on enjoying life. Take care.

Greg

[Birgitta-A]

Hi Greg,
Here is a link to info about different chromosome aberrations. The article is from 2007 and as we all know the patients then were treated several years before 2007 when the supportive therapy wasn't as good as today and they didn't get Vidaza, Dacogen or Revlimid. We live much longer today.
http://bloodjournal.hematologylibrar...3-082404/DC1/2
Kind regards
Birgitta-A

[Al's Wife]

Greg,

My husband is 73; so, no, he is not a candidate for a transplant. We actually go to a doctor closer to our home for treatment and every three months to an Emory doctor who specializes in MDS, who was our second opinion doctor. The two doctors consult with each other and I hope we are getting the best advice and treatment possible. This is such a hard disease to know what is best. There is no black and white. I am the researcher. My husband is like an ostrich and just buries his head most of the time. I am the kind of person who has to know probably too much, if you know what I mean.
My husband's hematologist (not the Emory doctor) unfortunately put a number of years on my husband's prognosis, which seems to be the number my husband is stuck on. I've read him countless articles and reports showing otherwise, but he still seems to hear the bad only.
Keep up your good attitude. If anyone knows a SIMPLIFIED explanation of how to read these lab assessments, please send me the link. The more I read, the more confused I get.
God bless all,
Linda
_____________________
Husband, 73 years old, dx MDS Int-1 on 5/26/2010, began Vidaza 6/1/2010, 4 cycles; bone marrow biopsy on 9/13/2010, results will be back on 9/27/2010.

[Greg H]

Hey Linda!

It would really be nice to have a guide to the lab reports. A lot of folks on this forum seem to be pretty knowledgeable, so you could definitely try posting a couple of numbers or paragraphs that have you puzzled and someone can probably help.

I have two docs as well, and they lab reports they use have slightly different formats, which can be confusing. Also, they seem to be interested in different numbers sometimes. I've learned a lot about how to read the reports, but I'm still figuring it out -- for example, I still don't know what a reticulocyte is or why it matters.

It's a pretty big shock when someone in a white coat tells you that you probably won't live as long as you thought you were going to. Sounds like Al is still suffering form that shock. But you are right that a lot of the survival numbers out there don't take into account the new drugs, like Vidaza and Dacogen. I've had to caution my daughters about being careful about information they find on the web that may be dated and misleading.

Does Al have to do platelet transfusions?

I'm going to be zipping positive thoughts out your way for Al's bone marrow report. Here's to no growth in blasts!

Take Care!

Greg

[tytd]

Hi Greg,
Just wondered if you'd been to any of the tertiary care clinics in NC like Duke, Wake Forest, or Chapel Hill? Apparently there is a one day conference in Durham, NC this fall sponsored by one of the MDS foundations. The Seattle conference posted on AAMDS website that you recommended was very good. The speaker from MD Anderson was a little depressing, though. He indicated that they just don't yet understand enough about the biology of the MDS cell to figure out good treatments yet. From what I've heard you have a better chance of responding to immunosuppressive therapy like Campath if you have a hypocellular bone marrow biopsy and also it may help if you are HLADR15 positive. I'm happy for patients like Lisa who have had good responses. What are your blood counts? Good luck, a neighbor in SC

[Greg H]

Originally Posted by tytd

Hi Greg,
Just wondered if you'd been to any of the tertiary care clinics in NC like Duke, Wake Forest, or Chapel Hill? Apparently there is a one day conference in Durham, NC this fall sponsored by one of the MDS foundations. The Seattle conference posted on AAMDS website that you recommended was very good. The speaker from MD Anderson was a little depressing, though. He indicated that they just don't yet understand enough about the biology of the MDS cell to figure out good treatments yet. From what I've heard you have a better chance of responding to immunosuppressive therapy like Campath if you have a hypocellular bone marrow biopsy and also it may help if you are HLADR15 positive. I'm happy for patients like Lisa who have had good responses. What are your blood counts? Good luck, a neighbor in SC

Hey TYTD!
The depressing guy was probably Dr. Estey. He was definitely not pulling any punches in his lecture. Oddly, though, I took some hope from that -- that I'm not nuts for thinking about pursuing a non-standard therapy that seems to fit my disease profile better. If the new standard treatments -- Vidaza and Dacogen -- help a minority of folks and only extend life for an average of a few months, maybe it makes sense for some folks to try something else.

My transplant doc is up at Wake Forest. I'm very impressed with the folks at the Cancer Center there.

My Hg was 8.9 at last check, three weeks post transfusion; I have a CBC tomorrow and will likely need two units on Friday. WBC hovers around 3, though my Wake Forest doc is always more interested in neutrophils. Mine are always right at the bottom end of normal at 1.6 or 1.7. My platelets were up to 83 last time, a jump back up from the high 60s to where they were in May.

Take care!

Greg

[Al's Wife]

Al's platelets were 37 last week and his HGB was 12.5 and his WBC 6.7. This is the lowest his platelets have been. He has not had to have any blood transfusions at all. He went right from diagnosis on a Wednesday in May to beginning his first round of Vidaza the next Monday. He had already had his first round of Vidaza before we saw the doctor at Emory for a second opinion.
I don't know if we jumped into treatment too soon or not - and will probably never know. We were in such shock that we went with what the hematologist/oncologist recommended.
I had hoped his numbers would bounce back better than they have after four rounds of Vidaza, but they haven't. I'm still hopeful that things will begin to turn around.
He feels okay, and except for being extremely fatigued much of the time, he continues to be fairly active for his age.

Linda
Husband Al, 73 years old, dx MDS Int-1 on 5/26/2010, began Vidaza on 6/1/2010, 4 cycles so far; bone marrow biopsy on 9/13/2010, results will be back on 9/27/2010.

[Greg H]

Originally Posted by Birgitta-A

Hi Greg,
Here is a link to info about different chromosome aberrations. The article is from 2007 and as we all know the patients then were treated several years before 2007 when the supportive therapy wasn't as good as today and they didn't get Vidaza, Dacogen or Revlimid. We live much longer today.
http://bloodjournal.hematologylibrar...3-082404/DC1/2
Kind regards
Birgitta-A

Thanks, Birgitta!

That's a really useful chart.

Greg