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MDS Myelodysplastic syndromes

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  #1  
Old Thu Sep 20, 2018, 10:01 PM
Nova H Nova H is offline
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Activity Level for Elderly

A grandparent was recently diagnosed with MDS.

Wondering if anyone here has any experience with an elderly patient (>80) on Vidaza. If so, what is their prognosis like? Are they still able to go out for activities, like dinners and spending time at the market. Asking because my grandparent is usually quite active during the week, including swimming and meeting up with friends.
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Old Thu Sep 20, 2018, 11:52 PM
rar rar is offline
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Prognosis is 5 months to 15 years depending the risk level. I had very high risk MDS RAEB2 (5 month type). I had a transplant 4 years ago that cured the MDS and gave me GVHD in exchange, I recently went to a BMT reunion and met a man who had a transplant 25 years ago.

I am not as old as your grandfather, I am 78. I have lost strength and endurance mostly due to drug side effects. I still manage to walk 3 miles 5 days a week and workout at the gym 45 minutes the other 2. If he doesn't give up he can still be pretty active.

Ray
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Old Fri Sep 21, 2018, 01:49 AM
Neil Cuadra Neil Cuadra is offline
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Your grandparent may have less energy for some activities, and may want to take a few safety precautions to avoid infections while immunosuppressed. But otherwise the doctor will probably have no objections to these types of activities.

I think it's wise to "listen to your body" (so you don't overdo it), but otherwise stay active, and that it's good for both mind and body.
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Old Fri Sep 21, 2018, 04:45 PM
Nova H Nova H is offline
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Originally Posted by Neil Cuadra View Post
Your grandparent may have less energy for some activities, and may want to take a few safety precautions to avoid infections while immunosuppressed. But otherwise the doctor will probably have no objections to these types of activities.

I think it's wise to "listen to your body" (so you don't overdo it), but otherwise stay active, and that it's good for both mind and body.
Thank you for the response. I think the immunosuppression is the part that worries her the most. She thinks that if she is going to have to be cooped up at home, unable to go out to restaurants, swimming pool, etc. that she would rather do supportive care rather than chemo.

Glad to hear that these activities may still be allowed if she does choose to go for the chemotherapy.

I'm leaning towards wanting her to take the Vidaza because I want her to have a fighting chance to be around for a couple more years, but I will respect her wishes and decision no matter what.
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Old Fri Sep 21, 2018, 06:23 PM
Neil Cuadra Neil Cuadra is offline
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Staying safe involves some compromises. Walking her dog through the garden isn't going to put your grandmother in immediate danger, but digging in the garden and emptying the cat's litter box are best avoided.

Being around other people is a matter of degree. She shouldn't be afraid to be out and about in general, but she shouldn't spend lots of time in a crowd of strangers or with people who have colds. If she swims, she should be careful not to swallow the water. I'd avoid it if I had any exposed cuts.

See What Precautions Do I Need to Take After an Organ Transplant? and Care at Home for the Immunocompromised Patient for some typical safety tips. The first of these sites tends toward the lenient side. The second of these sites is rather strict. That's because opinions differ on how much you should curtail your activities in the name of safety, versus quality of life. It comes down to an individual's decisions.

Remembering that it's temporary makes it a lot easier to cope with safety restrictions. When treatment is complete and immunosuppression is in the past, the rules can be relaxed.

My wife avoided restaurants and many types of raw fruits and vegetables while she was the most immunosuppressed. Later she eased up on the limitations, but still avoided buffet-type eating, such as salad bars, and skipped having sushi, which she really likes. Finally, she felt safe enough for normal restaurant and eating habits, but to this day she's a bit more safety-conscious about food than the average person.
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Old Sun Sep 23, 2018, 03:05 PM
maggiemag maggiemag is offline
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Neil, you referred to remembering that the treatment is temporary? I've not been on Vidaza yet, but it's my understanding that treatment continues until it's no longer working. I don't think this patient is a transplant candidate. And I may be wrong here, but don't your counts vary while on Vidaza? For instance, maybe your ANC tanks in 10 days, but then recovers for a while before the next treatment. Couldn't you ease up on restrictions during the period of time it was up? Food for thought anyway!

Mags
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Old Sun Sep 23, 2018, 07:35 PM
Neil Cuadra Neil Cuadra is offline
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Good point, Margaret. Some patient stay on their treatments indefinitely.

Although I remember a discussion here about a doctor's recommendation for pausing Vidaza treatment.

I found it here: When to stop Vidaza? I guess it depends on the patient, the doctor, and how the treatment goes.
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Old Mon Sep 24, 2018, 02:03 PM
Owen M Owen M is offline
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Thanks for your posts Neil. I want to cover 2 points. I will be 80 in one month and was diagnosed with MDS (Trilineage) in October 2012. Was on watch and wait until 2015 and during that time did not really notice much of a change in what I did and how I was doing it. Played golf 5 days and week and went to the gym 3 days a week and curled 3 days a week in the winter. In 2015 I began to notice that I was starting to tire faster than normally as well as sweat when this happened. Monthly CBC showed that my Hgl had fallen and my Oncologist placed me on Epotin-Alfa (Eprex)( still on it) My Hgl came back to where it had been (still a fair bit below normal) and while my stamina has improved it is not where it once was. I continued to golf 3 days a week, riding in a golf cart , still went to the gym, but reduced my routine and stopped curling because I could not sweep like I used to. Instead went to the indoor track in a local field house and my wife and myself walk 3 Kms 3 times a week. In 2017 my WBC took a dive and my Oncologist said it was time for me to start Vidaza. Have never had a trnasfusion. I just completed my19th cycle and am lucky enough to have a brand new regional chemo centre at our local hospital. The nurses generously say that I am a poster boy for Vidaza as it has steadily held me around the CBC levels that I was originally diagnosed at. My Oncologist took part in the Trials when Vidaza was being developed and is adamant that it be given by injection because he says the results were much better than through port. At the end of my seven days of injections I have a number of sore lumps in the stomach area that are tolerable but fairly sore. This lasts for about a week. I also have chronic mild diarrhea , but these are the only 2 side effects. I have stopped golfing because of sore stomach and also got quite tired around the 15 hole. Have increased my walking program. I continue to do most of the regular things I did but at a slower speed and when I forget the body quickly informs me and I sit down and rest. Nova H. based on my experience and also one close friend who has just completed 32 cycles on Vidaza; encourage your grandparent to at least attempt to continue doing the day to day things that they have been doing, but to listen to their body and slow down when necessary. On a positive note my wife says even some positive things can come out of having to slow down. I now start off putting things together by reading the manuals rather than waiting till I get in trouble and having to start all over again.
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Old Mon Sep 24, 2018, 08:24 PM
AliceKay1 AliceKay1 is offline
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Doing well on Vidaza at 80 years old

Quote:
Originally Posted by Nova H View Post
A grandparent was recently diagnosed with MDS.

Wondering if anyone here has any experience with an elderly patient (>80) on Vidaza. If so, what is their prognosis like? Are they still able to go out for activities, like dinners and spending time at the market. Asking because my grandparent is usually quite active during the week, including swimming and meeting up with friends.
Yes, I was diagnosed a year ago at 79. I'm very active with bridge, theatre, lectures, friends, family when I'm feeling good; not so much when the chemo has knocked my numbers down, that's for sure. I live alone, and there are days when it's all I can do to get up and get myself something to eat. Luckily, I have about two weeks every month when I feel great. Mind you, I'm having blood transfusions now every 4-6 weeks or so. That helps when you get to that point.

If your grandma lives alone, just keep a close eye on her during those days when she's weak and feeling like she just can't do anything but get by. The Vidaza knocks us down, but it's also keeping us alive and feeling good at least half the time.
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Last edited by AliceKay1 : Mon Sep 24, 2018 at 08:25 PM. Reason: No editing
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