Any one with AL amyloidosis and MM

Hi B0b68ok and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Myeloma but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I appreciate the challenges of this journey well.

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Hi I have MM diagnosed in January of this year. I have had 16 weeks of chemo VDTD and am now in remission awaiting a SCT in September. How are you doing?

Hi Happytobehere, I see it’s your first post so welcome. I see that you have also joined our dedicated Stem cell transplant support group.

I have been through two Allo (donor) SCTs for my incurable Non Hodgkin’s Lymphoma so although my blood cancer is different I, like many in the SCT group know the SCT rollercoaster well.

When you feel ready do consider putting up a post in the SCT group and introducing yourself to the group.

Hi,I too was diagnosed with MM in January and have received the same treatment as you.Ive just had my harvest ready for my transplant in August. Best wishes John 

Hello,

My partner was diagnosed with A/l Amyloidosis/ multiple myeloma Dec 2021

significant damage to liver and kidneys with poor prognosis 

age 41 with 2 young children 

diagnosed by NAC after local hospital took 3mths to consider Amyloidosis diagnosis 

we live in the midlands, he spent all of January being treated UCL as he was able to use Bupa healthcare as a diagnosis had been made.

He remains under the consultant he saw at NAC who I believe has saved his life.

A treatment combination of Daratumumab, Cyclo, Dex with many other supporting meds for nausea, very low bp, constipation etc.

A new trial drug called Belantamab he started around 3mths ago.

diagnosis.. light chains over 2000

heart pro bnp over 30,000.

A recent review at NAC..light chains 25

heart pro bnp 6,500( a partial remission)

The heart is too compromised to consider stem cell but we hope this is an option in the future.

I hope you are coping okay and have support.

Amyloidosis is a cruel disease.

Hi Havehope and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey your partner and the rest of the family are on.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Let's look for some of the group members to pick up on your post.

I will highlight at this time that if your partner does go on to the Stem Cell Transplant rollercoaster (I have had 2 Allo (donour) Stem Cell Transplants) we actually have a dedicated Stem cell transplant group where you can talk with others who have been through the process.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too.

This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. We also have our Ask an Expert section but do allow a few working days for a reply.

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

Always around to help more or just to chat.

Hello Havehope,

Thank you for posting this info about your partner. I’m so pleased that he’s making good progress under the NAC consultant. My partner also has MM and Al Amyloidosis and is waiting for a second haemo appointment, as his scan and bone marrow results hadn’t all been received at the first appointment, which we’d waited several weeks for.  

This is so frustrating, as he’s deteriorated significantly since he first saw a GP in February. It wasn’t until June that our GP informed him about protein in his latest blood test and lambda light chains over 3000, which meant nothing to us until we did some research - and very scary it was too!

He’s since had two A and E admissions, caused by cardio amyloids apparently and fluid on the lungs. We have another two weeks to wait until the next haematology appointment.  I really hope that there will not be another long wait for an NAC appointment, as his breathing and mobility are restricted and he’s very weak. I’m also wondering how he’ll manage the journey to the London Free Hospital!
Best wishes to you both

Oh my goodness you must be beside yourself.

Has your husband been referred to NAC?

If not please google the referral information and get a health care professional to refer him asap or I think you may be able to refer yourself.

I printed the referral information for my husbands cardiac contact the time and insisted he do it as he he said it would make no difference.

He was wrong. He reluctantly made the referral which I asked to be copied into to insure it was sent then I was desperately phoning the NAC to ensure referral had been received/

My husband was seen in less than a week.

the royal free arranged transport which was a taxi from our home 3hrs away. I too did not think he would make the journey but I had to get him to the experts.

They also provided free accommodation nearby.

He had testing the first day ( SAP scan can only be done at NAC which shows amyloid deposits and organs it affecting)

Results were given the following day and My husband was given 3mths to live due to severe cardiac involvement 

He had Bupa healthcare and this saved his life as he could be treated with a drug called Daratumumab not available on the NHS.

Treatment was tough but he was diagnosed December 2021 and is still here.

Hes had a complete response to treatment and is awaiting stem cell transplant.

I cannot express enough the importance of getting him to the NAC for proper diagnosis and they can liase with your local consultants with a treatment plan/correct supporting medication.

i can imagine you are drained and may not like conflict with any medical professionals but this is not an illness to be left while the drs plod along.

The NAC is where the experts are.

Do you have private healthcare, I’m sorry to ask but this could make a difference.

If you look on Myeloma UK news my husband Michael has recently been helping with the Daratumumab appeal to get it approved on the NHS.

I hope to God it gets approved .

I will pray for you.

Pray, Cry, Wail if u you I I have to.

whatever gets you through.

Message me if you want any further advice and I will help the best I can.

Theres also an Amyloidosis Facebook group and it’s excellent for advice and information ️️

Keep going.

 I wish you luck 

Thanks so much for your reply and all the information. My husband is in hospital again after being admitted as an emergency. His VCD treatment was going to start tomorrow, but now they’ve delayed it until further tests are carried out, which is discouraging as they told him today that he’s had it for a long time. The doctors said that they’ve contacted the NAC
He doesn’t have private health insurance unfortunately. I spoke to a nurse at the NAC and she said the doctors should make an urgent referral for him. I’ll check up on this tomorrow..

I too am praying that the Daratumumab appeal is successful, after reading how it saved the life of a forty something man with two young children, who is now back at work.

Ill contact the NAC directly to find out what the situation is.

Thanks again

ps Is it possible to send private messages on this forum?