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  #1  
Old Wed Jan 22, 2014, 02:42 PM
David M David M is offline
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Pancytopenia Improvement w/Environment Change?

Here's a question I've often wondered about...

Has anyone out there experienced an improvement in their blood counts after drastically changing their environment? For example, moving to a completely different part of the country (or world)... getting away from a certain job environment... changing from one climate extreme to another... something like that?

The reason I ask is this... I have had very slow moving pancytopenia for ~13 years now (that I know of). My counts are dropping very slowly. I have met others on this forum who also have relatively slow-moving pancytopenia over a long period of time -- though we seem to be the exception rather than the rule.

One person I met on this forum eventually had her counts "crash" suddenly after a decade or so of slowly declining counts. She went on to have a bone marrow transplant, and to appear to be cured. However, after another couple of years, she once again started experiencing low blood counts, needing transfusions, etc. This led me to to think about the possibility of environmental factors.

I am not suggesting that for everyone on this forum (or perhaps for anyone) that environment is THE cause or main contributor. I am just asking the question. Has anyone experienced improvement with change in environment?
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #2  
Old Thu Jan 23, 2014, 02:47 AM
Cheryl C Cheryl C is offline
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I don't have any real evidence that environment makes a difference. My dramatic reduction in risk level (RAEB2 down to RCMD) occurred before I stopped work, but I can't help thinking that no longer having to travel in packed trains and walk down footpaths adjacent to heavy traffic, then work really hard all day consulting, writing, etc has helped me a lot. I certainly feel much better than I did 2 years ago. I have been out of the city environment most of the time since then.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #3  
Old Thu Jan 23, 2014, 09:47 AM
tom30 tom30 is offline
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My theory from what I experienced is that my counts are affected by diet, I tried a number of different strategies and I can say for me a vegetarian based diet and processed foods affected my numbers to the down side. I also believe that alcohol is a big negative in blood counts and saw a stabilization when I stopped drinking alcohol completely, I would say I was having a glass or 2 of wine ~5 days a week. Now I have tried exclusion diets on many different categories of food(dairy, eggs, gluten, beans and on and on) and found no one item make a big difference in my counts. But it seems like a diet that avoids processed foods and is based on mostly organic greens and animal protein and some organic fruit seems to have contributed to a steady state in my counts for the last 2 years. I plan to try organic grass fed meats at some point but that is something I have not gotten around to the research completely, I did try organic meats for over a year and backed off of that believing most of it was marketing hype and no real difference in the product. Another item I'll throw in is vitamin D3 and K2 supplementation seems to have helped a bit on my RBCs but not Plts or WBC. I believe this is a Diet issue also with the modern diet excluding some vitamins and minerals.

On a geographic location note, I do recall reading somewhere that a higher altitude can improve blood counts, not sure where I read that though.
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #4  
Old Thu Jan 23, 2014, 04:51 PM
Chirley Chirley is offline
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When I was researching MDS years ago when the name first raised it's ugly head, I recall reading that it was more prevelant in rural areas and farm workers.

The stats may have changed since then though because environments change. Some cities have become more polluted and some rural areas have stopped using toxic herbicides etc.
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  #5  
Old Thu Jan 23, 2014, 06:27 PM
Cheryl C Cheryl C is offline
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Hmm... I don't think meat eating makes any difference unless the vegetarian diet is deficient. The research shows that just as many meat eaters are anaemic as vegetarians. Also vegetarians tend to live longer (see http://www.nhs.uk/news/2013/06June/P...-lifespan.aspx) which would imply that they are less susceptible to disease. However it's important that vegetarians have a balanced diet including getting the right kinds of iron rich protein.

We all need sufficient Vitamin C to maximise iron absorption from food. I've been vegetarian (with occasional fish) all my life and my red cells are the least of my worries. I've never had low B12.

I personally believe that stress is a very big factor.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #6  
Old Fri Jan 24, 2014, 05:22 PM
David M David M is offline
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Environment...

Some have mentioned their suspicions about the effect of strong electro-magnetic fields in their environment. We have lived in the same house for the last 25+ years, and in the field next to our house (maybe 300 yards away) are some high voltage power lines. I've never really thought much about them, but sometimes I wonder if I should? I wonder -- what would happen if I moved away from those things?

Maybe this is all grasping at straws, but it just seems that no one in the medical establishment that I have dealt with has spent ANY time looking at (1) my nutrition intake (what I'm eating/drinking); (2) my home environment; or (3) my work/play environment -- all of which are things I can control.

I am in "watch and wait" mode... but watch and wait for what? For me to fall apart? I'd rather be in "detective" mode and see if there is anything obvious out there slowly killing my bone marrow.
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #7  
Old Fri Jan 24, 2014, 09:35 PM
DanL DanL is offline
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I have also seen the magnetic field theory pop-up, but nothing scientifically proven. I did read about somebody who had myelofibrosis who completely shunned electronic equipment and experienced some improvement in blood counts, but I lost track of her a couple of years ago. Pretty hard to chat online without a computer.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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  #8  
Old Fri Jan 24, 2014, 09:38 PM
Whizbang Whizbang is offline
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David,

That's funny, because when I was diagnosed at NYU-CC, all they did was question my environmental factors, ie. benzene, exposure to possible toxins...

I spent most of my young life (29 years) in an oil refinery town (Perth Amboy, NJ), and as many have years ago, you would wash paint off your hands with solvents, gasoline, etc...

I definitely think that there is a strong correlation with environment... I work on 42nd street in NYC, and as I recall 10 years ago (or so) it was named as having one of the most carcinogen airborne particulates in the US...

What was the straw that broke the camels' back... my original hemo / oncologist said: "the world may never know"...
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Married, father of three daughters; now 46; 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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  #9  
Old Sat Jan 25, 2014, 12:27 AM
gramous gramous is offline
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Hello David (and the others :-)),
for the environmental causes, in particulary magnetic field, we have doubt but nothing is prouved ...but we've mesured this field last year and that seems not too hight but...
For the rest, we've everything changed : food, drank, job... my boyfriend has RARS-T form (55 years now and dx in 2011) and has stopped to work ( job in contact with chemical agent) a year ago, we've done also a detox cure three week last year ( no eat and supplement under medical control) and the improvement are fantastics .
In april 2013 : hemo : 8, platelets : 2300000(myeloproliferative component),
In januari 2014 : hemo : 12,9, platelets :450000 (with one hydrea a day for management)
So we're sure that food (we are now vegetarian), lifestyle (no job and enjoy) and detox cure are benefits for this disease.We don(t know how long that can stay so but we're enjoying our new life.
Sorry for my bad english but I hope that help.
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boyfriend with RARS-T dx 11/02//dx : hb 11,5; plt 870000, wh : 6500//Before fasting cure (13/04): hb: 8,9; plt 2200000; white:6000//After fasting cure (14/09): hb 12,5; platelets 400000, wh 3000.//Now (15/08) : hb : 11,plt : 650000, wh 3000// hydrea 1c/day and cardioaspirin, 1c/day,age: 56 y.
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  #10  
Old Sat Jan 25, 2014, 11:25 AM
David M David M is offline
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Environment and Detective work...

Let me slightly amend something I said earlier... In all fairness, the medical doctors I have dealt with DID ask a few things about my environment. For example: "What is your job?" "Have you had any contact with benzene?" Typical stuff like that... but it didn't go much deeper. And of course there was considerable medical history that we discussed.

Speaking of medical history, one of the first things that I did -- and this was of GREAT interest to me but didn't seem to be of much interest to the doctors -- I went back and tried to gather up ALL the CBCs (and other blood work) that had EVER been done on me from all of the doctors that I had ever been to. Since I had not moved much, most of my reports were located within a 30-mile radius of home, but still, it took considerable effort and persistence on my part. I went to my hometown doctor, a doc-in-the-box that I had been to a few times, a couple of different ENTs, a lung doctor, and a few others I had been to for various things through the years. I was not able to retrieve all the CBCs, but I found enough to piece together a decent picture of my counts from about 10 years before my pancytopenia was "noticed" in 2000. From this information, it looked like my counts were always on the lower end of normal -- but not below normal. (Perhaps they were trending downward very slowly even back then?). This information was available, but it was totally up to me to take the the initiative and go out and collect it. Helpful? I don't know. Interesting? Definitely!

My point in all of this discussion is -- I feel at this point my doctors are just watching and reacting to symptoms as they slowly present themselves. I understand that maybe that is just the nature of this beast -- this is a very rare condition and they do not know what else to do but to watch and react... And, when we think of percentages of patients and how they can help the most people with their limited time, doctors are very busy... and I am just one patient among their many patients, and I happen to have a near-unique problem. They just cannot afford to spend much time on me when so many others are out there they can help. I totally get that.

But when it appears that my bone marrow is failing in slow motion over a period of several years, it seems there is time to check some things, to probe into environmental factors, and to try and identify things that might be slowly killing my bone marrow. So, if anyone is going to do this detective work, it is once again going to be me. However, I am not a doctor or a detective, so it is difficult sometimes to know quite what to do or where to start.

Thank you, my friends, for your help and experiences and insights in all of this. Sorry for rambling on... Your responses have been very helpful, as is this forum in general.
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David M, reds/whites/platelets slowly declining since 2000; hypocellular bone marrow; diagnosed as unexplained pancytopenia / "non-typical" slow moving AA; still not at treatment-required levels, but getting there.
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  #11  
Old Sat Jan 25, 2014, 02:16 PM
Whizbang Whizbang is offline
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What's funny about my CBC's, is that before my diagnosis was, they were all on the high side of normal across the board... All the stuff I did as a kid, and now I've lived a very healthy life style, and that's when it decides to come out...???

It is what it is with this disease...
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Married, father of three daughters; now 46; 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 Wed May 7, 2014, 07:26 PM
lacanada1 lacanada1 is offline
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A tale of three cities

Responding back to the initial post -- I have thought about this a lot in my case. I was diagnosed with AA/MDS/marrow failure nearly seven years ago. In the time since, I have lived in three different cities on three different continents! And for some reason, my counts were best in the middle one (city #2). I actually had a normal Hgb count for a while then and a biopsy report at the time speculated that I was undergoing a rebound, that perhaps I was just recovering from a 'toxic insult'. They said my marrow was showing signs of being 'replenished' on comparing to results while I was living in city #1.

Then I moved to city #3. After I moved, counts then began to gently decline over a couple years and my biopsy results began to mimic the one from city #1, until I had ATG.

I've always thought there was something there with city #2 being better for my counts, and have raised it with my hemos here, but they just disregard it every time. Would be curious to know if anyone else has had a similar situation - and also if anyone has heard of a spontaneously rebounding marrow in a biopsy report?
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37/M. Feb 2008 Dx hypoplastic anemia. Watch and wait until Jan 2012, dx with hypoplastic MDS (RCMD). Sep 2012 ATG, on cyclo since. Partial remission, living very active life.
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