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MDS Myelodysplastic syndromes

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  #1  
Old Tue Dec 14, 2010, 04:37 PM
tom30 tom30 is offline
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Can anything be done in Watch & Wait mode?

I currently have low Platelets, Low WBC and right now normal HGB with the RBC right above the lower threshold. After 2years, 2 BMBs and lots of blood work my doctor says he still can't rule out an autoimmune issue but this could progress to MDS at some point but right now the blood cells do not have the characteristics of MDS. I've read a numbers of posts and web articles where MDS sometimes starts slow with low platelets for years before turning the corner to MDS. My doctors says it needs to be monitored but no other specific advice. When I brought up curcumin he cautioned that it might make things worse in the long run which after thinking about it I agree that high doses might just throw things out of wack.

What I have done is try to eat only foods that can be helpful ... lots of fruit, vegetables and most of my protein from wild salmon. I eliminated alcohol, processed foods, white sugar- flour- rice from my diet. I exercise 2X a day for 90 min. I also eliminated the multi vitamin, vit b12 and vit C , Omega 3, and Benadryl I was taking daily. I think the Benadryl was contributing to the issue but have to wait that out a bit longer since I cut that out in september and want to see a few more blood tests.

Are there any other Watch and Waiters that have had any success in trying to build up or reduce the stress on the marrow which normalized the numbers? The information out there on what diet supports healthy marrow is limited.
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Tom- 62 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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  #2  
Old Tue Dec 14, 2010, 05:28 PM
knstone knstone is offline
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Another opinion??

Hi Tom,
My MDS started with low platelets and WBC, nearly normal Hgb. I did have high blasts from the start.

You are very near NYC and Dr Silverman is there, he is a noted MDS specialist. Have you considered getting a 2nd opinion? Sometimes it's good to get a BMB at a clinic noted for MDS, the pathologists see lots of MDS marrows and have a lot of experience reading them.
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Kirby71, RAEB2 dx 2/04, Thalidomide 30 mo, Revlimid 18 mo, No resp Vidaza
6/09 2nd Thalid use, Promacta, Lowdose Dacogen added 10/09 at 40% blasts. 5/11 BMB-blasts 8%.
2/11 2nd Revl restart=good resp, Platelets drop 6/11, 3rd Thalid,+Nplate+Dacogen. 7/12 Cnts stable for 10 mo.
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  #3  
Old Tue Dec 14, 2010, 07:26 PM
Dick S Dick S is offline
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Tom, I've been diagnosed as MDS Low Risk and steadily watch my numbers, all three, ever so slowly creep downward, but am still on the watch and wait list. It's been over four years now. I only have VA and Medicare insurance so I am certain it's a numbers game and they will not start anything 'til they absolutely have to 'cause it gets real expensive, real quick. I sometimes wonder if I would be into treatment now if I had some real high price insurance coverage.
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Dick S, diagnosed Feb. 2008 with MDS. Last BMB April 2016. New diagnosis is CMML stage 1.
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  #4  
Old Tue Dec 14, 2010, 07:37 PM
tom30 tom30 is offline
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Hi Kirby, thanks for the suggestion. the practice I'm in is one of the MDS centers of excellence my doctor specializes in MDS, I did see another doctor and he reaffirmed what my doctor is saying. I do not have an issue with the lack of a DX thats fine by me. My numbers do not justify any treatment, I don't have blasts and the Dr says he can't call MDS at this time but 'thinks' it might progress along that way. Did you see Dr Silverman? What hospital is he associated with?
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Tom- 62 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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  #5  
Old Tue Dec 14, 2010, 09:09 PM
lindy lindy is offline
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Hi Tom,

I have low platelets since last year & my doc also said the same that my situation may progress to MDS. I'm in watch & wait mode too.

I think you guys in US & Europe are more fortunate & have better access to great health care. I live in SE Asia & because of finances have to avail myself to public clinic/hospital where there is always a long wait to see the doc. Over here we were not educated enough then to understand the need to have health insurance coverage.

There is limited info on diet for healthy marrow. Hopefully others can help.
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Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode.
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  #6  
Old Wed Dec 15, 2010, 08:56 AM
Marlene Marlene is offline
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Hi Tom,

Have you had all your hormones checked? As well as b12, iron, folate, copper, iron and zinc? Any low normals results should be addressed.

Since you have cleaned up your diet, have you thought of consulting with someone who is trained in macrobiotics to take it a step further?

Also, if you haven't already, spend some time reading through the posts in the Alternative Treatment section for more ideas. Even though you are concerned about curcumin, you may want to find out more about the things Dr. Raza has done with early onset MDS with ginger, coQ10 and Curcumin. I think if you search on Dr. Raza, you'll find the threads on her.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #7  
Old Wed Dec 15, 2010, 12:58 PM
tom30 tom30 is offline
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Hi Marlene, I did have b12,folate,iron tests done I'll ask my doctor next time I go about the other.

I looked into the macrobiotics diet, read a few books but couldn't get my head wrapped around it and could not find any specific on it helping MDS there is some info on it helping at least one women with itp. I plan to dig around some more on that topic, that's a good idea. I'm trying to stay away from things that might make things worse, after stopping the benadryl which I was taking 2 a day for post nasal drip I feel significantly better and my numbers are at a high point but I'm not reading too much into that since it has only been 2 blood test over 3 months.

On Dr Raza, I can't find any conclusions in her studies it appears that they start studies but no results are posted that I can find. I attempted to make an appointment with her since she is in nyc now but her office never returned my calls and about the same time my doctor threw up the caution flag saying since it there are no results it may turn out to have a negative effect. So I dropped that path.

I am hoping to uncover some additional items to stay away from or add to a diet that people have had success with in the pre - MDS stage.

Thank you for your suggestions
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Tom- 62 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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  #8  
Old Wed Dec 15, 2010, 02:33 PM
Marlene Marlene is offline
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Hi Tom,

Be sure to get a copy of your test results, especially the B12. Many docs feel that any reading under 500 is okay but there's more up to date information and studies supporting higher levels of 500 or greater.

Based upon our experience with SAA and recovery, we found it served us better to focus on improving John's overall health instead of trying to fix his bone marrow. Nothing happens in isolation in your body and a holistic approach is helpful. And, since most of us cannot figure out the root cause of the disease, it usually means more than one thing is out of balance. How you get to optimal health is the challenge and there are many pathways to it....you just have find the one for you and it usually means taking a broader approach. As you fix/balance one aspect, many other aspects of your health can improve or should I say heal. Stopping progression and even small incremental improvements may be all one needs for long healthy life.

On the caution flag regarding curcumin, most docs will not advocate or support the use of herbs, vitamins, special diets mostly because they do not have the knowledge or experience. Here's a discussion on it:
http://forums.marrowforums.org/showthread.php?t=1795

We try our best to eliminate as many man made chemicals from our environment as possible. From cleaning products, soaps, shampoo, creams, lotions,petro chemicals, plastics, genetically modified foods, hormone/antibiotic meat, etc. The reason being is that toxic chemicals are damaging to the bone marrow. Especially if that is your achilles heel. I have not put down any chemicals on our lawn since John got SAA.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #9  
Old Wed Dec 15, 2010, 02:44 PM
Marlene Marlene is offline
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Tom....since you are in the mood to research, check out these links.

Supports the use of NAC for MDS:
http://www.bonemarrowhelp.com/

Nutrients to support healthy blood stem cells:
http://www.lef.org/magazine/mag2007/...m_cells_02.htm

Bruce's journey from SAA to MDS and how he's managing his MDS naturally:
http://www.aplasticcentral.com/Aplas...Basic_View.htm
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #10  
Old Wed Dec 15, 2010, 09:29 PM
lindy lindy is offline
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Hi Marlene,

Thank you for the above links.
I find them helpful, I'm sure Tom will as well.
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Lindy 56, low platelets, thrombocytopenia dx 2009, in watch & wait mode.
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  #11  
Old Wed Dec 15, 2010, 09:39 PM
tom30 tom30 is offline
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Marlene, thank you so much for the thoughtful post and the links. I just spend 2 hours starting to go through the info. My B12 was in the 750 in September when I stopped taking the b12 pills, it was part of my knee jerk reaction to the Benadryl, I discovered after stopping taking it, a lot of miscellaneous symptoms went away, restless leg syndrome for example. So I may have thrown out some good supplements also. But after looking at what I eat I'm comfortable that I'm getting enough vitamins right now. I was only taking a multi, omega 3, vit c and the b12.

Thanks again.
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Tom- 62 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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  #12  
Old Thu Dec 16, 2010, 09:32 AM
Marlene Marlene is offline
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Hi Lindy....Glad you found the links helpful. It's very frustrating to be in a "wait" mode so I do understand you wanting to do what ever you can to improve your health.

Tom....very interesting about the RLS. John had a lot of neurological issues after his treatment and when I started to research natural approaches to help heal his nerves and brain, I saw that the same nutrients were vital to healthy blood production. I think that was when I had one of those "ah ha" moments and realized I needed to step back and take in the bigger picture of overall healing.

On the B12...it would be good know what your B12 status was before you started to supplement; and be sure to get it checked again to ensure you able to maintain that level. There's a lot of research supporting anyone over 50 should supplement B12, along with other b vitamins. B12 absorption is reduced as we age and any antacids/acid reflux drugs will greatly impair absorption. Also, if your gut bacteria is out of balance, the bad bacteria will consume the B12 you eat.

One last item to check....your vitamin D levels. Here's a good source for understanding all the latest science on Vitamin D. They also talk about the discrepancies in test results from Quest labs and how to adjust their results to get to a more accurate reading.

http://www.vitamindcouncil.org/
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #13  
Old Fri Dec 17, 2010, 10:24 AM
tom30 tom30 is offline
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Hi Marlene, The Benadryl was interesting, I've had allergies my whole life, Allergy shots for 3 years put them under control, but the shots are associated and possible rare cause of the even rarer Eosinophic fascittis that I contracted while on the allergy shots. Just after I went to the doctor for a variety of symptoms 2 yrs ago and noticed the low CBC results I started taking the Benadryl, I gained 15 pounds and my symptoms got worse. I never connected the two because it was after I already started seeing the doctors for the low CBC results that I started the Benadryl. Anyway as soon as I stopped taking it I lost the 15 pounds and feel a lot better.

On the B12 it was borderline low when this started 430, 360 then went up (650,900,750)after taking the b12 daily, however looking at my test results in september I noticed that right after taking the B12 my AST and ALT jumped, I also got spooked after seeing in a article that high b12 is associated with and increase in prostate cancer and I recent had a cat scan that found a small nodule there, PSA is under 1, so thats on hold for now. So that is why I went into monitor mode on the b12. I'm scheduled to get that retested in a few weeks. Multiple Doctors blew off the borderline B12 as any issue but there is a lot of info to suggest otherwise.

Another twist is all of my labs were trending upwards from sept 09 to may 10, I had a really bad backache when I went to see my doctor for blood work/exam he offered to set up an MRI, had backaches my whole adult life and was reluctant by figured what the heck it would be nice to know if there was something that the mri would pick up so I set up the MRI. The MRI picked up a area in my spine of that was suspicious for lymphoma, not slipped disc's or anything that would explain my backache. So then they scheduled a CT scan of my torso and another bone marrow biopsy. No Lymphoma showed up and BMB was actually better than last time. But the suspicious area on the spine was there, I spoke to the radiologist and explained exactly why the exam was set up and agreed that I would not have the ct guided biopsy on my spine and that the area could be what he see sometimes in folks with anemia. The CT scan also picked up the nodule in my prostate and one in my lung to be followed up on at a later date. Now here is what is really interesting, my CBC results dropped at least 10% across the board after the ct scan. They are back on an up trend but I think the CT might have rattled the marrow. The doctor wanted to recheck the spine with another mri/ct on my last visit but I put it off to next year.

I'm in the process of reading your past posts to catch up on what you experienced with John. Thanks again.
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Tom- 62 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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  #14  
Old Fri Dec 17, 2010, 11:24 AM
tom30 tom30 is offline
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My W&W strategy

While in W&W I am doing the following

Diet-

AM- coffee - I stopped it for a year but after reading conflicting data on the plus and minuses I added it back 2 cups in the morning.

Either yogurt and berries, egg and toast or oatmeal.

Green tea - cold brewed 16oz

Lunch- usually Fruit, apple, banana, walnuts, salad

Green Tea

Dinner - 5 nights a week wild Salmon, Brocolli, peas,carrots,beans,corn. other 2 nights usually chicken or whatever else we are eating in the house.

pineapple, banana, blueberry smoothie

2 filtered 16 oz waters in there usually after exercise

Everything is organic that makes sense to go that way.

Exercise - 45min in the am, 30min pm everyday, weights 5x a week.

Avoid alcohol,sugar,salt, processed foods, working to clean up toxins around the house.
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Tom- 62 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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  #15  
Old Mon Dec 20, 2010, 10:08 AM
Marlene Marlene is offline
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Hi Tom,

I went looking for info on the B12 study which made a possible link of high b12 to prostate cancer and it's amazing how much conflicting data is out there. There are so many variables that, for me at least, I would be hard pressed to accept the data based on one study. Many of our foods are fortified with B12 and folate and it is with the type requiring conversion by the liver. There are new metabolic disorders that have been identified in the past 8 years in which some people cannot convert certain forms of B1, B12 and folate to a form usable by the body. It then stays in the blood, creating a false, elevated level.

There are various forms of B12, cynocobalamin, methylcobalamin, adenocobalamin. The methyl is bio-active and does not require conversion by the liver.

The next time you get your B12 checked, also have them check your MMA and homocystiene levels. These are a better indication and will further help you determine your B12 status. See the link below.

http://www.aafp.org/afp/2003/0301/p979.html
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #16  
Old Mon Dec 20, 2010, 08:04 PM
Chirley Chirley is offline
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Hi,

I am homozygous for MTHFR and consequently have been taking folic acid for many years. Recently the Prof of Metabolic Medicine that I saw, told me to stop taking it because new research has found that it can cause an increased risk of cancers, specifically bowel cancer.

Just thought I'd pass that on.


Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #17  
Old Tue Dec 21, 2010, 09:08 AM
Marlene Marlene is offline
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Hi Chirley,

Hopefully you can get the folate you need from your food then since it's essential for proper cell development. You certainly have a very complicated situation. I bet you keep your doctors on their toes.

I personally don't worry as much about getting cancer from normal use of supplements and herbs as I do from the thousands of toxic chemicals we are exposed to daily. Unless of course they contain harmful additives .

M
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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