Does dramatic weight loss go along with MDS?

[milliken2]

Hello All;
Just wondering - does dramatic weight loss always accompany MDS - or is this indicative of someone with excessive blasts? Earl has lost 100 pounds - without trying - in less than a year. Not that he couldn't afford to lose the weight - just that the appetite is poor, and he is weak more times than not.
I know I will never have the same ET back that I used to have - though my heart certainly wishes it were so. It seems to me like he is slipping away right in front of me - and I can't do a thing. He takes viamins and some supplements, but he has gone down 5 pant sizes and 2 shirt sizes. Sometimes when I look at him - I just break down and cry - knowing that what is ahead is not pleasant.
Hope everyone else is doing better, and that you have a Wonderful Memorial Day Holiday. God Bless our Service men and women - and thank those present and past for our freedom - including my wonderful husband who is a Viet Nam Vet.
Beth

[Sally C]

Hi Beth,
I wish I could say something to make things better. Sometimes there just aren't the words.
I want to personally thank your husband for his service to my country. I volunteer at the local VA hospital and am always amazed at how brave and courageous our Veterans are - they are just a special breed. I'm sure Earl is no different.
I hope things turn around for Earl - he is very blessed to have such a loving and devoted wife.
God Bless you both on this Memorial Day.
Sally

[milliken2]

Hi Sally;
Thanks for your kind words regarding Earl - but I am the blessed one. He has been a wonderful husband, good provider, and most of all - my best friend. He's been there for my ups and downs, and sacrificed for my family when he didn't have to. Yes - he served 27 months in Viet Nam - and I often wonder if that is where this illness came from.
We did go to see the Veterans representative - and were told that neither his MDS or either of the other 2 auto immune diseases he suffers from are 'on the list of recognized illnesses' - so it looks like we won't be getting any help there.
Again - have a great Memorial Day Weekend - and THANK YOU VETERANS - BOTH PAST AND PRESENT

[Sally C]

Hi Beth,
There is a member of the forum who has worked tirelessly trying to get the VA to recognize some of these illnesses to be service related. His name is Bob Macfarlane. Maybe you could get some help or information from him. I don't remember the outcome of his efforts but you could read his posts to get an update or send him an e-mail. Maybe he could be of some help.
Both of you take good care,
Sally
p.s. I meant to mention that my Dad was a WWII Veteran - D-Day +6 - Army Medic. Happy Memorial Day to all!

[Chirley]

Hi Beth, when I first became ill (before diagnosis) I lost over 90lb in 8 months. I was hospitalized to be supervised for ? Anorexia Nervosa and food supplementation.

I ate everything set in front of me along with the liquid supplements and still managed to lose more weight while I was in hospital. I was told I was cachetic (? spelling). I had every test known to man and was found to have Barretts as well as esophageal candida along with the bone marrow failure.

After I started treatment for the candida I started gaining weight again and it hasn't been a problem since then.

I don't think it's unusual to lose some weight but I'm not sure that Earls weight loss is not excessive. Is his doctor concerned? Mine certainly were.

Regards

[milliken2]

Sally & Chirley

Thank You both for replying. I will try and get in touch with Bob regarding the Veterans classification- and see if he doesn't have any suggestions for me.

Chirley - do you know what they used to treat your Candida with? If so - let me know, and I will at least have the upper hand when I question our PCP.

Earl is supposed to start his 3rd session of the Dacogen therapy on
Tuesday. But, he is getting so weak, and occasionally nauseated - but the compazine doesn't seem to work for him. I will question that as well. He also has an appointment Tuesday afternoon with a surgeon to get a port put in. He doesn't want to - but his PICC line keeps clogging on me, and I can't seem to get it open. I did the other day - but that was the day following hs 2 doses of activase - and I used heparin in his lines to help, I got a small light pink flush this AM - and will try tonight. I understand where he is - the Derma just removed a second lesion from the same arm - his right arm - and it is very sore. Right now - nothing seems to be going in our favor.

Beth

[Sally C]

Hey Beth,
Don had a picc line before he had a port put in about 2 years ago. There is just no comparison. I don't have to tell you how much there is to maintaining a picc line - not to mention the ever-present risk of infection. Don's port has been a God-send - he has had no problems whatsoever.
I wish you both well.
God Bless,
Sally

[Chirley]

Hi Beth, I was given Fluconazole tablets which I took for a couple of years.

On another note, I have had a port for over 4 years and I have never regretted having it inserted. I only wish the surgeon had implanted a dual lumen port instead of a single but I didn't know dual lumens were available at the time.

One of the benefits of a port is that when it's not being used there is no constant reminder that you are ill. When I had my PICC it was a constant reminder that I had something wrong, not just to me but to others too. Sometimes I think it's good for your mental health to be able to forget about illness sometimes and the port allows this.

Regards

Chirley

[milliken2]

Sally;
I agree with you - but the problem is when Earl had his first two sessions of chemo - the patient on either side of him - both there for chemo as well - their ports were clotted off - and they also had to sit there with Activase for 2 hours - in fact - we left before they ever got their ports open. So - with that in mind, he is VERY hesitant. And not that I am the best nurse - but he feels more secure with me doing all of his care - except for the actual chemo, transfusions or lab work. Hopefully - we will be able to talk him into a port. We do have an appointment with the surgeon Tuesday afternoon.
I just tried to get a blood return a few minutes ago - and still only got a tiny flash in one of the ports. I am just praying that I can get it open before Tuesday AM.
Hope you are having a good weekend.
Beth