Multiple myeloma and AL Amyloidosis

Hi again Sanza and well done navigating across to this corner of the community.

I don’t have Myeloma but for some context I have been on my journey with 2 rare types of a on Hodgkins Lymphomas since 1999 so although my Bood Cancer ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

hello Sanza,

3 years ago i was diagnosed with Cardiac AL Amyloidosis, multiple myeloma, and stage 2 heart failure.

if this is similar to what you are looking for, then ask away.

Hi my dad has amyloidosis and MM, he’s 78. Really weak from this, especially everytime he receives chemo. May I ask how you b have been since your diagnosis and your age? Are you on the standard of care type of drugs like Dara, etc? Please let me know I’d love to hear from someone in a similar position to my dad! 

I am 66 and was diagnosed in Oct 2023.  I don’t feel well on the chemo. I was on dara, velacade, thalalidamide and  dexamethazone but six weeks in had bowel obstruction and had to stop.  I am now on dara, lenalidamide and dex.  I have had six months of chemo and am now on maintenance, I have just done one month but still don’t feel well but have been told to hang on in there it could have take up to six months to feel well.  I am very weak and have poor mobility.  I have lightheadness all the time. 
I hope this helps. Xx

hi dantheman

I am 59. I had 6 months of chemo. lost all muscle strength and body mass and was bed bound most of the time, and very tiredand lethargic. I was slowly weened off the tablets as the weeks of recovery went by.

I was free of amyloidosis after the first 5 weeks of chemo but had to do the whole 6 month course of treatment. It has been 18 months now and my kappa light chains are only just starting to creep up again, but only by the tiniest amount.

It took a good 6 months to recover, walking up a flight of stairs was really strenuous to start with but improved as the months went by. Carrying shopping bags was also strenuous. My chemo was daratumumab, dexamethasone, bortezomib, and thalidomide.

yes the chemo is evil, but he will come through the other side. loss of taste was very annoying but try to give him soft foods.

if he suffers from the dry mouth i can recommend chewing starburst chews. They were called Opal Fruits when I was growing up and the slogan was `Opal Fruits, made to make your mouth water`

this way you get saliva in the mouth but don`t get the fluid intake which amyloid patients have to try and limit.

After a year of recovery I was back to normal except weakness in my leg muscles, which improves as long as I keep walking around each day. It hasn`t been easy with our rubbish weather so I need to build my fitness up again now spring is around the corner and I can get out more.

my 6 min walk test at NAC was 54% 4 months ago so I need to improve

hope this is of help

regards

Thank you for taking the time to respond and I am glad you had many positives after receiving your treatment! 

Hi Empiel, 

I didn’t know if you have Amy you have to limit your fluid intake. what is the resin for that?  I am always being told to drink a lot. I am seeing my dietician on Thursday I will ask her. 

you say you went the NAC 4 months ago, was it worth going as they don’t have the injection for the SAP machine?  I have an appointment in July but I’m in two minds to go or not because of that.  My mobility is so bad my 6 minute walk test would be terrible. 

I am pleased you are doing so well and are free of Amyloidosis, I hope this for myself but it seems a long way off or will ever be. 
thank you for your response. 
regards 

Hi Sanza,

people with AL Amyloidosis in the heart have to restrict the fluid intake because the heart muscle stiffens up and can`t pump blood and fluids properly around the body.

a build up of fluid gathers in the feet/ankles and they swell up, and make you feel worse.

Yes, you must go to NAC, they are the world leaders and best doctors and professors you will ever come across.

I couldn`t finish the walk test when I was first diagnosed so don`t worry about it.

all the best

Hi Empiel, 

I don’t have any in my heart as far as I know. Thank you for explaining this to me.   
A few people have said I should go. You have more faith in them than me.  Do you think I could just have a video call with them?  I did the walk test well on my first and second visit but I have deteriorated so much I know this one would not be a good one. 

Thank you for your response, I really appreciate it. 

Sanza, the doctors and nurses at NAC saved my life and gave me a few more years to live. I will never be able to thank them enough, so yes I have complete faith and trust in them.

I still think you should see them in person, but it`s obviously your decision in the end.

where is the Amyloid in your body? mine is in the heart muscle, tongue, and spleen. The doctors at NAC know what the best chemo treatment is for you, so it is worth speaking to them.

hope you start feeling better