• The KillerFrogs

Has anyone seen my specialty plates?

tcudoc

tcudoc

Full Member
Ron Swanson said:
I’ve gotten pretty good at walking around with my leg braces on. I walk my dogs around the neighborhood all the time and don’t have any big issues (other than my awkward gait). I am still functionally paralyzed below both knees, but I’m starting to be able to twitch my calf muscles more and more. The hardest thing for me is just standing still without something to hold onto. You’d be surprised how much balance is dependent on your foot muscles.

The improved walking ability is due to improved quad strength and just practice. The stem cell transplant doc told me I should see significant nerve damage repair within 3 months of my transplant date (11/20/2020) and then will likely be close to normal within a year.

Fingers crossed
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Thanks for the update. Glad the prognosis is good.
 
Purp

Purp

Active Member
Ron Swanson said:
I’ve gotten pretty good at walking around with my leg braces on. I walk my dogs around the neighborhood all the time and don’t have any big issues (other than my awkward gait). I am still functionally paralyzed below both knees, but I’m starting to be able to twitch my calf muscles more and more. The hardest thing for me is just standing still without something to hold onto. You’d be surprised how much balance is dependent on your foot muscles.

The improved walking ability is due to improved quad strength and just practice. The stem cell transplant doc told me I should see significant nerve damage repair within 3 months of my transplant date (11/20/2020) and then will likely be close to normal within a year.

Fingers crossed
Click to expand...
That sounds very encouraging. Are they at all concerned about relapse and battling this again and again or is this pretty well defeated once you return to normal?
 
HFrog1999

HFrog1999

Member
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Ron Swanson

Ron Swanson

Full Member
Ron Swanson said:
Yeah my beard started to fall off in chunks about a week after the chemotherapy, so I just went ahead and shaved it. I don’t love it
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It is a chronic cancer, so I will always be at risk of it coming back, but my doctors have treated patients who were in much worse shape than me at the time of stem cell transplant who haven’t had a relapse 15 years running. It’s so rare and was only discovered in the 1980s so they don’t have a whole lot of data about it compared to other cancers. The biggest study I have read was from the mayo clinic and that was based on like 150 people over the course of a couple decades or something.

If it does come back, the current plan would be to do another stem cell transplant, but if it is in 15 to 20 years, who knows what that treatment plan will be then. It is a super rare cancer, which is never good in regards to funding dollars for research, but luckily it is in the same family as multiple myeloma and multiple myeloma gets tons of research dollars. It is one of MD Anderson’s “Moon Shot” cancers, which basically means they have set it as one of their main priorities to find a cure. So I got that going for me, which is nice.
 

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