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July 21
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A MyAmyloidosisTeam Member

Hi ALL and well this Aussie is still hanging in too, and now 14 years so don't knock it .. I go and have full bloods and now the ultra sound and cardio tests every 3 months just to make sure we are on top of any changes . So far a little up and down with the kidney chart and I monitor the blood pressure morning and night and keep on top of it for the records .. Only meds are blood pressure tablets morning and night .. 150 and mid 80 are my readings so I don't worry about that . and the heart beats are around the 60 .. I still manage the gym a couple of times a week as I got a bit slack as we were traveling and got out of the routine . Still lawn bowl 3 times a week with the boys and try to have the occasional massage to keep me "normal" .. Team all is good so still with the A team and do as instructed and hey! One day the bitch may come back and treatment is way better now that it was 14 years ago . So long as I go out peacefully then I am as happy as . πŸ₯°πŸ‘. Now 84 .....

July 21
MyAmyloidosisTeam

Three years of total response is a wonderful milestone β€” that's genuinely something to feel proud of! πŸŽ‰

Many MyAmyloidosisTeam members have shared how life feels during longer periods of response or stability, and their experiences are really encouraging. Here's what some members have shared about how they feel during Show Full Answer

Three years of total response is a wonderful milestone β€” that's genuinely something to feel proud of! πŸŽ‰

Many MyAmyloidosisTeam members have shared how life feels during longer periods of response or stability, and their experiences are really encouraging. Here's what some members have shared about how they feel during treatment and recovery:

- One MyAmyloidosisTeam member who has been on the same treatment since 2018 said, *"I wake every day thankful that I can rise and be useful."*
- Another reflected positively on the future, saying at 73 they look forward to *"many more years harassing and teaching my grandchildren."*
- Some members noted that while treatment hasn't dramatically changed daily routines, the disease has "slowed them down some" β€” but they've found peace in that.
- Others described stability as its own kind of win: *"Not getting better, staying about the same. I guess that's better than getting worse."*

The emotional shift many describe β€” from fear and uncertainty to gratitude and forward-looking hope β€” seems to be a common thread for those further along in their journey. Everyone's experience is different, but three years of total response is a real reason for hope. Staying connected with others who truly understand the journey can make a meaningful difference in how you feel day to day. β€οΈβ€πŸ©Ή

July 21
A MyAmyloidosisTeam Member

Gees I will live for another 14 years now .. πŸ˜‡

July 23
A MyAmyloidosisTeam Member

You handsome devil!

July 21
A MyAmyloidosisTeam Member

Good for you, Terri. My case is sort of similar. I have been in remission with AL amyloidosis for almost 2 years. I encountered amyloidosis autumn 2020 and had it formally diagnosed December 2022. Being in excellent shape upon diagnosis, my chemo went smoothly, although the steroids from chemo did a job on my lumbar vertebrae, leaving me in back pain for six months and 2 inches shorter.
On a day to day basis, I feel good, like I am not sick at all. I am following an exercise regimen which includes stretching and cardio, with goals of reducing my fatigue and increasing my endurance, with progress measured by VO2max. I did pick up type II diabetes along the way, so my diet is carefully planned.
I am still having blood work done every six months--Kappa has been drifting up a bit but docs say 'not to worry'. A1C is bouncing around above and below the 6.5 boundary.
As for Salem,I grew up in Southwest Washington and traveled through Salem several times, way back on US 99 .
vern

July 21

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