How is everyone?

It's been awhile since we have heard from some of you. Now is a good time to check in, say hello to our newer members, and tell us how you are and what is on your minds. We hope to hear from you soon.

My wife Carey (40) is three weeks post Auto Stem Cell Transplant and is doing great. She was in University of Louisville Hospital Bone Marrow Transplant unit for 21 days until released on November 2. Her immune system is increasing each week and she is really getting her strength the last few days. We have to wait 2 months before she can have another bone marrow biopsy to see if the Amyloid levels have dropped.


I'm so pleased to hear she is well, Matt. Wishing you both a lovely holiday season with many special moments!

It's been more than a year since I had chemo and I am doing quite well. Specialist has referred to me as a miracle patient. My amyloidosis was discovered very early thank goodness.. Do continue to have some issues (but not nearly as bad ) with low blood pressure and bowels. Main thing really right now is dealing with depression and getting back into the swing of things..Hope the other members here have had positive things happen too..Mike

Mike, this makes me so happy for you! We need to hear the good stuff. It gives everyone hope. Thank you so much for sharing.

My husband was diagnosed with AL Amyloidosis on July 22, 2014. He immediately started chemo. Apparently he was diagnosed early thanks to his primary care doctor and a nephrologist that he was referred to. He started to respond to treatment early on. He has lost a lot of the fluid he started to retain. His labs are looking wonderful. He is staging for SCT in January. I pray that everything continues to go well. Through this support group, I was told to seek out Dr. Jeffrey Matous in Denver Colorado. He has truly been a blessing. I am so grateful that we found someone approximately 70 miles away who knows this disease well and let us have a say in my husbands care. This will be a busy time a year for us celebrating the holidays and gearing up for SCT, but we are thankful. Happy Holidays everyone.

I am so glad this group helped get your husband to the right doctor, Stephanie. Happy holidays to you, too, and wishing your husband continued good health!

Hello everyone. I have been in remission for four months. I’m feeling stronger every day. My Amy was in my kidneys ,left ventrical and skin. I have to have a epo shot every couple months as I get anemic . I have a great team here on the central coast of California and a super team at Stanford. It was good to hear about the rest do you. Nhappy holidays. Kay heaton

That is wonderful, Kay! It is so heartening to hear these great updates. Happy holidays!

well hello everyone , happy thanksgiving to all ,,, i manage to be home for the holidays ,, the body seems to be cooperating , for the moment , ,, my swelling has gone down and the chemo seems to be working , i hope it stays this way for more then a month , its nice to be at home ,,, i wish for everyone to be home for the holidays , to be with there families and friends ,, i wish the best for everyone and may the good lord shine upon you ,, best wishes , in this long jounery

Wonderful to hear from you, John. Home for the holidays is wonderful, and I am glad you had a good holiday.

It’s probably a little late to reply judging from the dates on the replies, but anyway here’s my status so far. I’m just starting my third cycle of treatment. The first two went OK. But I suffered some side effects that didn’t make me feel “right”. The Dr. here suggested I drop two of the components from my treatment so on this cycle I’m only having the Velcade shot. I had the first shot last Thursday and was OK. By Saturday I was very tired a low energy. Today after getting some quality sleep I am doing and feeling my old self again. That’s it for now and I appreciate to opportunity to express my thoughts and feelings on this forum.

Any time, ranchogil. I am glad you are doing okay.

have had quite a bout of depression for months but finally things are coming together bit by bit.Still in remission

I am glad you are feeling better, Mike, and very glad you are in remission. Post a discussion for additional support. I'm sure other members would like to share their experiences with you, too. Just click the discussion tab above.

Well Thanks Madere,

Thanks a lot for passing on the post from Tallguy, unfortunately i spent ages putting a post to him together only for it to disappear somewhere when i pressed send !! got a reply message i had to be friends first. i just hate the effects of medication (Dexameth) that make you do stupid mistakes,nevermind !. I've sent a friends request and a post onto his discussion hopefully the message will find its way as well. I appreciate i'm not your most frequent of visitors but my email inbox lets me know things of interest to me.

Thanks again all

It happens to the best of us, Duncan. I hope you are doing well, and that it isn't as hot where you are as it is in Holland at the moment.

Madere (dancermom) said:

It happens to the best of us, Duncan. I hope you are doing well, and that it isn't as hot where you are as it is in Holland at the moment.

its scorchio here too, personally i love the sun and heat , i used to be able to lay in sun all day despite being blonde and gain a "surfer dude to die for tan" those were he days ........ i'm very fortunate to have the luxury of air con and its a pleasant 23 degrees, its due to break here today ,one side effect of dexameth that will be positive i will have no troublestaying awake watching the thunder and lightening storms overnight .

Take care bye for now

I love thunderstorms. We had one last night. Enjoy!

Here's some hope for many of you: I took my last doses of Thalomid and Dexamethasone in 2011, after taking them continually for 6 years. My hematologist has used the word remission (what a lovely word!) for quite a while now. My last semi annual visit with him was in May, with my kappa/lamba blood tests continuing to look fine. He said to me at the end of the visit, "Shall we see each other next in a year"? I think I must have had a look of panic at not seeing him for a year, so he said, "No, that's a long time, we'll make it 6 months". But wow! A year! So, I'm telling you, it can happen. I'm not the same person physically as before the disease, but let me tell you, I'm cherishing every day of my new life.