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General Health Issues Diet and appetite, sleep and fatigue, pain management, exercise, etc.

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  #1  
Old Tue Dec 15, 2009, 09:50 PM
Hopeful Hopeful is offline
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Location: California, USA
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Weight loss issues?

Is anyone else struggling with maintaining their weight? I know that anemia can cause weight loss, but my HGB has been around 10 these days. I also have no taste for sweets (except dark chocolate). Does anyone else have this issue?
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50 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. Trisomy 6 clone in 5% of cells.
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Old Tue Dec 15, 2009, 11:31 PM
Chirley Chirley is offline
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Hi, that was one of my first symptoms. When I first became ill in 2003 I lost 42 kilos (?90lbs) in about 6 months. I even had to be admitted to hospital just for the weight loss.

I was put on dietary supplements and on discharge from hospital I had to attend a dietition every week. It worked very well and I have managed to regain about 25 kilos.

I found that when I was very very thin that I coped with the anaemia better, I think it was because I didn't have a lot of weight to carry around but overall I feel a lot better with the weight back on and I don't get all those comments on my health any more.

Oddly enough, the weight loss didn't worry me any where near as much as it worried my doctor.

I find that now I can enjoy eating chocolate and nuts and ice cream and not think about how fattening it is.

I don't know what turned my weight loss around, I think it was probably a combination of the supplements, dietition input and a stabilisation of my illness. I also decided that even if I wasn't feeling very well and wasn't hungry that I would make myself eat anyway.

I hope you find what works for you. It was scary for me to be admitted to the palliative care ward and be labelled as cachectic. I hadn't realised until that happened that I was considered to be close to death. Apparently dramatic weight loss in itself is very dangerous to your health without the added problem of bone marrow failure as well.

Please talk to your doctor or dietition to find a solution that works for you.

Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
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  #3  
Old Wed Dec 16, 2009, 05:12 AM
Birgitta-A Birgitta-A is offline
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Weight

Hi Hopeful and Chirley,
During 15 months my dx was Myelofibrosis and patients with this disease often will be very thin (due to enlarged spleen among other symptoms). Then I decided that I should control my weight carefully and eat more if I started to loose weight.

I have been working with HIV-infected patients and know that it is difficult to gain weight if you have a severe disease like HIV-infection or cancer. This issue is very important and many sites have info about what to do to avoid loosing weight.
http://www.cancer.gov/cancertopics/p.../Patient/page5
Kind regards
Birgitta-A
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  #4  
Old Wed Dec 16, 2009, 07:32 AM
squirrellypoo squirrellypoo is offline
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Weight can fluctuate the other way, too, which I don't think gets anywhere near enough attention. Everyone told me I'd lose SO much weight during my transplant that the Drs made me put on an extra few pounds on top of what I'd already gained from going from a super active lifestyle (running 30km per week and walking everywhere) to super sedentary due to low Hb. And did I lose a single pound? No, I gained a few! Grrrr. So now I'm faced with having to work even harder to get my body back, which is way more upsetting than losing my hair, which will grow back without any effort on my part.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #5  
Old Wed Dec 16, 2009, 04:01 PM
Nick Nick is offline
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I have experienced weight loss (8st 12lbs down to 8st 5lbs) in 5 months whilst being on Azacytidine.
I have had four cycles of treatment and expecting bone marrow transplant in Feb 2010.
Planning on using Xmas to help gain weight!
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  #6  
Old Thu Dec 17, 2009, 05:25 AM
squirrellypoo squirrellypoo is offline
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Hi nick. Oh it's nice to see another person in the uk, it's usually just myself and Carolyn! Where will you be having your transplant? I had my bmt at kings in July and I really can't say enough good things about the dmu and profs marsh and mufti.
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #7  
Old Sun Mar 28, 2010, 03:58 PM
Nick Nick is offline
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Location: UK
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Hi SP,
Apologies for not getting back on the site sooner!

I now have had 6 sessions of Aza since September 2009 with the final one in a week or so. I have a BM biopsy soon so will know if blast cels have dropped enough for transplant a month after the biopsy. After 3 months of Aza my blast cells dropped from 14% to 9% so I am hoping for a drop to 4% after 6 months!
I have seen a gradual deterioration of my counts over time. Platelets are taking longer to recover and Neutrophils frequently take a dive now.

Blood test on Fri 26 March 2010 was Neutros 0.2, WBC 0.9, Hb 10.2 and Plates 19.

I have had platelet transfusions and injected myself with GCSF to stimulate Neutro and WBC production which are only temporary improvements.
I did't like injectons but the need to inject yourself makes you really focus on what is important and necessary - I am ok now and even happier at getting the Aza injects.
Regarding the weight issue I went down to 8t 3lbs before seeing hospital nutricianist who put me on Nutricia Fortsip, 'a high energy, nuritionally complete drink' and I am now back up to 8st 5lbs. Not a lot better but it stopped going down!
Nick
Sorry did not enter my details when registering: M 57, UK, Diagnosed December 2008.

Last edited by Nick : Mon Mar 29, 2010 at 03:14 AM. Reason: wanted to change a few facts
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