Welcome Back!

How are things with you these days? Did you have a good summer, or if you're one of our friends "down under", how did you weather the cool season?

Share your news! Everyone loves to hear positive things, but if your news isn't so great, we'll be glad to give you some support. That's what we're all here for, after all.

So what's new with you, and how are you doing?

Tough going - The results for the year are: VCD did not work, Revlimid gave me a bad rash, Pomalyst gave me a horrendous rash, am off medicine right now. Letting my body cool down before taking 1 mg of pomalyst a day. The pomalyst was giving me good lab numbers but the rash is a deterrant. The skin on just about my whole body is peeling now that the pomalyst was stopped.

During this period I saw Dr. Tuchman for a second opinion. Really liked him and his approach.

Looking forward to the cooling down period and see if the small dose of pomalyst will have a positive effect without a rash.

Golfer

By the time I found this site my mother had to have Hospice called in. She passed 8/12 from organ failure. I miss her lots, she was my best friend. Keep fighting best wishes to all!

Hi Firecracker Baby,

I am so sorry to hear about your mother. May I ask when she was diagnosed and what treatment she might have had? This is one very touch disease!


Firecraker Baby said:

By the time I found this site my mother had to have Hospice called in. She passed 8/12 from organ failure. I miss her lots, she was my best friend. Keep fighting best wishes to all!

Hi Golfer,

I am so sorry to hear about the difficulties you are having. I hope that you will soon find some relief and success. Please let us know how you are doing as you begin treatment, again!


golfer said:

Tough going - The results for the year are: VCD did not work, Revlimid gave me a bad rash, Pomalyst gave me a horrendous rash, am off medicine right now. Letting my body cool down before taking 1 mg of pomalyst a day. The pomalyst was giving me good lab numbers but the rash is a deterrant. The skin on just about my whole body is peeling now that the pomalyst was stopped.

During this period I saw Dr. Tuchman for a second opinion. Really liked him and his approach.

Looking forward to the cooling down period and see if the small dose of pomalyst will have a positive effect without a rash.

Golfer

I hope to connect with many of you in the group, again! I have uploaded the Amyloidosis Foundation Newsletter that shares my story--a short version:) Please let me know if you have any questions. I would be happy to share anything that I can to help!

1-Fall_2015_newsletter.pdf (675 KB)

I have been in remission since having chemo in 2012. Low blood pressure is still an issue but continues to improve. Have had quite a battle with depression for over a year but things are slowly coming around. Started doing some geometric art a short while ago which has helped me become more active. I am showing some signs of life again. Still have a ways to go but optimistic about things. Summer was really hot here so breathing was a bit of a chore occasionally and probably contributed to some of my panic or anxiety attacks. Up to this year I was always freezing no matter what so it's a good sign that my weight gain has been helpful. No big plans for the future just slowly working away at things as they come along...mike


Good to hear, Mike, that things are turning around for you, even if it's a bit slow. As you say, take it as it comes! Nice of you to drop by and let us know.



Hi Mike,

It's great to hear from you! I am glad to hear that you are doing a little better. It's good to see that you are optimistic. I know that it is sometimes hard to keep positive--we have so many issues to juggle and something new always appear to happen. But, we have to look for the positives as much as possible and hang on to them as tightly as we can! Please let me know any time you need to connect.



mike said:

I have been in remission since having chemo in 2012. Low blood pressure is still an issue but continues to improve. Have had quite a battle with depression for over a year but things are slowly coming around. Started doing some geometric art a short while ago which has helped me become more active. I am showing some signs of life again. Still have a ways to go but optimistic about things. Summer was really hot here so breathing was a bit of a chore occasionally and probably contributed to some of my panic or anxiety attacks. Up to this year I was always freezing no matter what so it's a good sign that my weight gain has been helpful. No big plans for the future just slowly working away at things as they come along...mike

Golfer - I had to take my meds for 6 years before the progression of the amyloidosis was halted. Be strong, be patient.

Finally found the big breakthrough with my depression that I had been looking for over the last 2 years or so. It was my artwork after all. Really changed my approach to it from the past. It started a chain reaction. Things immediately went very well with the art. Ideas started to flow which led to good drawings and then I started buying different supplies, tools. etc. That in turn led me to design and build a proper art desk ( still assembling after 2 weeks ). Next now that I was up and about so much doing that I have now finally started to do some jobs around the house like painting and organizing my million and one tools along with the garage, basement and special shed I own. It didn't really take anything major just a number of small steps but they had to be the right ones. Had therapy over a year ago and learned what mindfulness is. Apparently I have been practicing it a good deal of my life but never knew it had a name. In any event refined it a bit too. Glad I never gave up. 3 years is a very long time

It is wonderful that you finally did get there!

SheSurvives said:

Golfer - I had to take my meds for 6 years before the progression of the amyloidosis was halted. Be strong, be patient.

That is wonderful, Mike! What a great approach! All of it begins with the first step. Keep moving forward--you are doing so well!

mike said:

Finally found the big breakthrough with my depression that I had been looking for over the last 2 years or so. It was my artwork after all. Really changed my approach to it from the past. It started a chain reaction. Things immediately went very well with the art. Ideas started to flow which led to good drawings and then I started buying different supplies, tools. etc. That in turn led me to design and build a proper art desk ( still assembling after 2 weeks ). Next now that I was up and about so much doing that I have now finally started to do some jobs around the house like painting and organizing my million and one tools along with the garage, basement and special shed I own. It didn't really take anything major just a number of small steps but they had to be the right ones. Had therapy over a year ago and learned what mindfulness is. Apparently I have been practicing it a good deal of my life but never knew it had a name. In any event refined it a bit too. Glad I never gave up. 3 years is a very long time