Recent Posts

31

General Discussions / Re: Lenalidomide maintenance after ASCT

« Last Post by LucilleO on July 30, 2022, 10:08:11 am »

Hi Mo,
Thank you for your reply, it was very reassuring! I’ll probably proceed with the treatment but will wait until I have had a chance to discuss it during my annual visit to the NAC in September.
Best wishes,
Lucille

32

Logistics/Financial / Re: Travel insurance

« Last Post by Iris on July 28, 2022, 06:15:24 pm »

AllClear has covered me for the year. I am also chronic asthmatic have had respiratory failures and in remission from AL. I had had no problem with the service  although pricey. Best wishes Iris x

33

General Discussions / Re: Lenalidomide maintenance after ASCT

« Last Post by Mo Perry on July 28, 2022, 07:38:24 am »

Hi Lucille,
My husband is just starting his 29th cycle and is doing fine. His platelet and iron levels fall at the end of the cycle. He now does 3 weeks of treatment and a 2 week rest period. This allows his body to recover.
He was first diagnosed in 2015 and this has been the best treatment so far for him.
Best wishes,
Mo

34

General Discussions / Re: Amyloidosis and free prescription

« Last Post by Jon Reardon on July 22, 2022, 05:39:40 am »

Hi all thanks for the help. Yes I did manage to get the exemption certificate so all goo.

35

General Discussions / Re: Eating out

« Last Post by diddy on July 22, 2022, 01:20:02 am »

We went back to the premier....literally across the street for dinner & breakfast. Still got meal deal.

 Pears still insisted on giving their breakfast..knocked on door very loudly. 1 pkt cereal, 1 muffin, 1 croissant, 1 carton app  juice. 2 of us.  Was not impressed with room...hardly room to move and I  am on sticks . Was told it would be ok didn't need accessible room.

36

General Discussions / Re: Husband just diagnosed with AL Amyloidosis (Heart, Liver) - what to expect

« Last Post by Richardpreston on July 20, 2022, 10:54:16 pm »

Hi IonaSky.   I was eventually diagnosed in 2010.  I remember my first visit to the NAC and the conversation with Prof Gilmore.  He was quite clear about the severity of Amyloidosis but gave immediate confidence in the treatment available.  That was twelve years ago and I am still here chirping away - and there are much better treatments available now.  There have been some very difficult times but we got through those and I will not get back to full fitness so we have adjusted accordingly.  The we is me, Kathy my wife and two sons - now adult.  Their unflagging support has been instrumental in my recovery - physical and psychologically.   The treatment is the main thing but a bit of good luck always helps - Good Luck.

37

General Discussions / Re: Patient service

« Last Post by Richardpreston on July 20, 2022, 09:40:07 pm »

Interesting Gary.  We had a similar experience for a while and then things got better.  It was very frustrating for a while but the front line under such pressure that I couldn't get to exercised about it.  Of course when we first started going to the NAC it was a very different regime.  I dont have the latest data and it was probably my last visit before Covid - the number of referrals had more than doubled  - I guess resource have not gone up in proportion.   

38

General Discussions / Re: Husband just diagnosed with AL Amyloidosis (Heart, Liver) - what to expect

« Last Post by freecurry on July 18, 2022, 08:32:12 pm »

My thoughts are with you and your family.
We were in a similar situation about 18 months ago, my husband was really ill and most of what I read about AL Amyloidosis, when we finally got a diagnosis, seemed incredibly negative.
Being able to read, both on here and on social media, about the experiences of others living with this disease, helped us to find some hope. You do now have a diagnosis and are in touch with the right experts it seems. In our case treatment initially felt as though it was making things even worse,  but gradually they got much better.
I can't promise you that things will get back to how they once we're but there is hope that they'll get better.  Do keep chasing for that NAC  appointment.
Take care.

39

General Discussions / Husband just diagnosed with AL Amyloidosis (Heart, Liver) - what to expect

« Last Post by IonaSky on July 17, 2022, 12:21:32 pm »

Hi All,
This is my first post.  My husband was diagnosed with AL Amyloidosis last week after 2 months of tests and differing diagnoses from pancreatic cancer to auto-immune liver disease. He is really ill and the symptoms have accelerated over the last couple of weeks. His symptoms are, at the moment
- Cardiac: BNP Pro 6300, he can barely walk now or breathe, his pulse rate is ~100 bpm resting and goes up to ~150 on exertion and he has ascites.
- Liver: Cirrhosis with  jaundice. He has been asked to stop the diuretics as his liver function has deteriorated. We have an appointment tomorrow.
- Now an appointment at the dental hospital.

Although we are now in the “system” awaiting the start of treatment and referral to NAC, the prognosis feels grim and I am terrified. We have 2 kids aged 12 and 10.

Thanks for reading.

40

General Discussions / Lenalidomide maintenance after ASCT

« Last Post by LucilleO on July 15, 2022, 06:11:21 pm »

Hi everyone,
I was diagnosed with AL amyloidosis (heart and kidneys affected) and smoldering myeloma in Feb 2020, and went on to have 6 cycles of CyBorD resulting in a VGPR. I underwent an ASCT two months ago and am recovering well. My consultant has recommended starting Lenalidomide maintenance next month. When I asked how long for, she said until side effects become unbearable or my disease progresses. Even though it will be a relatively low dose, I have concerns about taking Lenalidomide for an extended period, given potential side effects and toxicity. I’d be grateful if anyone with experience or advice could share.
Thanks,
Lucille