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  #1  
Old Sat Apr 6, 2013, 10:28 PM
Scarlett O. Scarlett O. is offline
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Question Normal BMB but poor prognosis cytogenetics

Just before Christmas 2010 my GP referred me to a hematologist for a BMB because my CBCs showed that I was mildly pancytopenic, and she had ruled everything else out - iron and B12 deficiencies, multiple myeloma, lupus and rheumatoid arthritis. From looking at the blood smears under the microscope, both doctors thought that everything would come back normal, but that's not how it turned out. While the BMB showed "not a hint of morpholology", the cytogenetic results were terrifying - Chromosome 5q and 7q deletions in 6 of 20 metaphases. I'll never forget how the hematologist put it to my husband and me two days after Valentine's Day 2011. He said: "You don't have MDS yet, but when you get it, it is incurable except for a bone marrow transplant, and 30 percent of people die during transplants." Wow! The treatment plan is to watch and wait and have CBCs every four months. I don't have to have another BMB unless/until my hemoglobin is 100 and/or my platelets are 50. More than two years have now elapsed, and my blood counts remain borderline but stable. Most recent CBC results were WBC 4.1, Hgb. 117, Platelet 117, RBC 3.86, and Hct. .353. I am almost 60 years old now, and I have spent the last two years checking off a lot of things on my bucket list - travelling extensively and spending more time with the people I love. I really thought I would be very sick by now or maybe even dead, but thankfully my only symptom is what brought me to the doctor in the first place - extreme fatigue. I am okay physically, but this has taken a huge toll on me psychologically. Essentially after two years of watching and waiting, I still don't have a diagnosis - not that I want one because I already know that with those "terrible chromosomes" (another direct quote from my hema), my prognosis is not good. I have been lurking on this site for well over a year looking for a story like mine, but I haven't found one. Were any of you ever in this situation, and what happened to you? Thank you in advance for any information and support you can provide.
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  #2  
Old Sun Apr 7, 2013, 01:52 AM
Chirley Chirley is offline
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Hi, I went to a BMT lecture and previous transplant patients told their stories.

One of them was a young man 21 yo at the time of diagnosis. He said that his blood problem (mild pancytopenia) was picked up on a routine university medical exam. After BMB he was told he had chromosomal aberrations and the outcome would not be good.

He had a BMT without ever having developed full blown MDS. He never once had to have a transfusion, platelets or growth factors. He admitted the decision whether to go straight to transplant or not was not easy, but, given his age and fitness level it was deemed appropriate.

When I listened to him he was 33 years old, had no post transplant issues was healthy and fit. He was working full time, had married AND he had fathered two children. (He had frozen semen prior to chemo).

So, I know that you are older and therefore there is no need to rush to transplant, but yes, I have heard of someone else with no real peripheral blood count issues having a transplant for MDS.

Regards

Chirley
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  #3  
Old Mon Apr 8, 2013, 09:31 AM
Lbrown Lbrown is offline
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I have heard of cytogenetics changing over time, even here on these forums. I am sure there was someone whose results actually improved, and the bad changes couldn't be found on the next test.

Deb
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  #4  
Old Tue Apr 9, 2013, 12:33 AM
riccd2001 riccd2001 is offline
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Hi Scarlett: I'd say don't be surprised that there may not be someone here with the exact same condition as yours.

For example, I have 5qdel and tri21. When I was finally given a diagnosis of low-risk MDS in early 2008, the median survival was 54 months as I recall. So here I am 60 months later and still feeling the same tiredness et al that I had back then. But I've learned to deal with it and move along best I can.

Today I had my regular 3-month visit with my doc and there has been no indication of need for another BMB and will continue on with my regular PRBC transfusions.
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Ric: MDS low, 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 262 'units' over 6 years; 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #5  
Old Tue Apr 9, 2013, 12:58 PM
Hopeful Hopeful is offline
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Hi Scarlett,

Have you previously had radiation or chemotherapy?
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47 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine.
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  #6  
Old Tue Apr 9, 2013, 02:17 PM
Scarlett O. Scarlett O. is offline
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Question Accutane and MDS

Thank you all for your replies. To anwer your question, Hopeful, I had a complete thyriodectomy in June 2006 because I had papillary thyroid cancer, but I did not require chemo or radiation. However, I sometimes wonder if the chromosome damage has something to do with the fact that I took accutane. After suffering from low-grade acne for almost 40 years, I finally went on accutane at the age of 53. I was on it for four months and took a total of 4800 mgs. I was told it was a Vitamin A derivative, and I knew it caused birth defects, but I didn't discover until I started researching MDS that accutane was originally used as a chemotherapy drug. i asked my new hematologist about this. She did some research and found that while accutane has been trialed in the treatment of MDS, she could not find any data indicating an association between accutane use and the development of MDS. I still wonder though; I guess I will never know. Thanks again.

Scarlett
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  #7  
Old Tue Apr 9, 2013, 09:24 PM
Janice M. Janice M. is offline
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Seven Dosages of Accutane

Scarlet,

I have MDS and I had been on accutane 7 times for acne. I started with acne around age 20. I started taking accutane around age 31 once I was done having children. My early dosages were very strong. My last few courses were only 10mg a few times a week. My husband has hated me being on this drug and often worried about its effects. I had no idea that it was used as a chemotherapy!
Certainly makes you wonder.......

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #8  
Old Mon Apr 15, 2013, 06:47 AM
MDSPerth MDSPerth is offline
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Scarlett,
In July last year Paul went for routine blood tests then aged almost 62. We were shocked when the next day he received a call referring him for further investigation as he did not have symptoms of anything wrong. After a BMB He was diagnosed with MDS (pancytopenia neutrophils at .35, platelets at 24, and HGb at 102). He has/had monosomy 7 and +8 in about 9 of the 20 cells tested. Almost immediately he was started on growth factors and they kept him in good health and transfusion free for 8 months until a very good donor match was found.

We are now at day +11 post transplant and he is astounding the medical team with how well he is coping. They are putting a lot of it down to the fact that with the exception of the growth factors he remained medication free.

Paul is being treated for hypo cellular MDS and has no blast cells. If you get the opportunity for transplant, the younger the better I understand.

Good luck,
__________________
Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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  #9  
Old Tue Apr 16, 2013, 09:54 PM
Scarlett O. Scarlett O. is offline
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Hi MDS Perth,

I am glad to hear Paul is doing so well post-transplant. As for myself, my pancytopenia is still very mild, and my bone marrow is still not daysplastic so I don't even have a diagnosis yet. Given my very scary cytogenetics, all three hematologists I have seen in the last two years appear to be very puzzled, and none of them has recommended a transplant at this point.

Scarlett
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  #10  
Old Sat Oct 26, 2013, 09:42 AM
Jparker82 Jparker82 is offline
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I had a bad translocation. Blood looked a little worse than yours. It's magically gone. Even the NIH couldn't believe it.

T(6;7)(q27;p12)
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  #11  
Old Sat Oct 26, 2013, 09:39 PM
Whizbang Whizbang is offline
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Scarlett O.,

Mine is a similar story, terrible cytogenics out of no where, I could have not gotten treatment, as my counts were rising on there own, and I'm quite young... But with my brother being a match, and three young daughters, I need a cure... Even with only two rounds of Dacogen I became symptomatically in remission...

With that being said, the preferred cure is SCT/BMT while your at your strongest... Like you I haven't gotten transfusions nor boosters, hopefully this will increase my chances at a perfect transplant (with my brothers bone marrow helping)....

Best of luck, and God bless you on your journey...
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Married, father of three daughters; 45; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #12  
Old Thu Jan 9, 2014, 07:18 PM
Pyr2 Pyr2 is offline
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See my new post I have a similar story

Ctyogenetics 15 years ago. Still here 15 years later. No sign of disease, is this possible?
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  #13  
Old Thu Jan 9, 2014, 07:25 PM
Pyr2 Pyr2 is offline
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Sorry new poster trying to figure this out

So 15 yrs ago, I had some very weird symptoms (ultimately attributed to an immune reaction to doxycline). In any event as part of the work up, they did a bone marrow biopsy, chrom analysis and flow cytometery. Bone marrow biopsy and flow cytometry came back negative and as I had no "evidence" of cancer and was feeling better they said to put the test out of my mind. It was del 4(q21-35). This was 15 yrs ago and I know that the techology and knowledge has changed and that this might not be the current state of things as i notice a lot of you are worrying about your cytology and getting transplants and such.

Im worried OMG ! Should I have been getting followed by a doctor or something else? I am experiencing another round of health problems, and wondering if this is it? Please enlighten me on the significance of the bone marrow cytology. One doctor told me a whole chain of events had to happen for it to happen and that all of us harbor stuff that needs a chain reaction so not to harp on this unless I was symptomatic. Please help!
L
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  #14  
Old Thu Jan 9, 2014, 09:37 PM
bailie bailie is offline
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Pyr2,

Have your blood tests shown anything abnormal?
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age 67, dx MDS RAEB-2 11-26-2013: pancytopenia WBC 3.8k, Hgb 12.8, HCT 36.1, Plt 34k, RBC 3.69; cytogenetics Genes:IKZF1, KRAS, SF3B1, 9-11% blasts. Start Vidaza 12-16-2013, now in 5th cycle (4-7-2014)
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  #15  
Old Fri Jan 10, 2014, 11:31 AM
Pyr2 Pyr2 is offline
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Normal blood

No consistently normal CBC. Have not had any further immonophoresis or bone marrow exam or cytology. At the time this was all happening I had an increased igm polyclonal so the explanation has always been infection or inflammation. I do have lymes.
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  #16  
Old Fri Jan 10, 2014, 01:09 PM
sbk007 sbk007 is offline
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Pyr2,
If your CBC's are showing normal counts odds are there's no bone marrow failure. When you read of posters cytogenetics and transplants its because certain mutations are considered very bad with poor prognosis, but yours isn't one of them. If you take marrow from a random population of seemingly healthy people I don't have any idea of what the results would be. To put your mind at ease you could request a BMB. If your Lymes is causing symptoms similar to what you see here like fatigue then its just by coincidence. Express your concerns to your doctor. I think I understand what he's saying though about the chain reaction. I think what he means is that just because the mutation was seen 15 years ago there would need to be a catalyst for it to create problems. Hope your feeling better.
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  #17  
Old Fri Jan 10, 2014, 08:01 PM
Pyr2 Pyr2 is offline
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Thank you!

I suppose I should just "keep an eye on it." Its getting me worried now bc I don't feel fatigued but am having a lot of issues (back of head headaches, neck issues, neuro pain). I have convinced myself that the bone marrow result that I have "ignored" for 15 years was cancer all along and has now spread to my brain/head (despite 3 normal MRIs). I am having a lumbar puncture this week just b/c my doc is concerned about the constant brain and neck pain. I guess having CBCs normal and not being fatigued is a good sign.

Sometimes I feel like all this technology is actually a scary thing. Knowing too much. And for those of us that are relentless researchers (its my profession, Im at attorney) has us make connections that arent rationale.

All the best to those of you with the not so good profiles. I will say that whatever is coming out of my current health crisis, I will meet with a hem/onc just to get their idea on this as far as monitoring it. God bless.
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