Recent Posts

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General Discussions / Re: Visiting first time, parking, hotel etc.
« Last Post by SteveJ. on January 06, 2022, 12:46:34 pm »
Thanks Heather,

sorry, just noticed your reply.

Yes, we are booked in there too 👍
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by Kathrine on January 03, 2022, 09:24:29 pm »
Hello Pat,
So lovely of you to reply.
What another positive story.
You have been so brave, I read some of your old posts when you mentioned you had to soldier on through Chemo when you were desperate to stop.
I do admire you.
You sound so strong.
I hope and pray my Michael gets through this xx
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by Pat Martin on January 03, 2022, 04:11:55 pm »
Hi Katherine, Sorry to hear of  Michaels diagnosis, which must be difficult to take in at the moment for you all, but be reassured that the Team at the NAC are Fantastic!! They will ensure that he will recieve the very best treatment..and going forward he will be monitored constantly..You will be given time to ask questions (I always forget to take a list!)  Plus the forum is a great bonus. I was diagnosed with AL six years ago, having stage 3 heart failure and amyloid deposits in the heart, liver, spleen etc.  I send a big thankyou to the wonderful NAC Doctors, Nurses, Admin and all Staff, due to their kind care many of us with AL + AL and MM + all the amyloidosis variations are back on our feet and enjoying life.  Wishing you and your Family all the very best as you start your journey.  Pat Martin
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by Kathrine on December 30, 2021, 08:34:40 am »
Wow you two are doing remarkably well.
Yes everyone is different, when I hear your inspiring stories this gives me hope and even if it gives my mind a placebo effect im thankful as it helps me soldier on with our lovely girls😍
Thank you for both replying
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by deBurca on December 29, 2021, 11:45:47 pm »
Katherine,
First and foremost I have to agree with Roger, this disease is different for everyone and different people respond to different treatments in different ways. A perfect example is that Roger says above that VCD was remarkably effective for him, whereas the same treatment only had a partial effect on me. Daratumumab is what has been most effective in my case, but I had three other lines of treatment before trying Daratumumab. My diagnosis was amyloid in the heart, liver, kidneys, spleen and gut. I am two years on Daratumumab now and am living a relatively normal life. I havent returned to work, but I have a young family and am quite active. The NAC has the best expertise available and is hugely supportive. I am lucky as my consultant at my local hospital in Ireland is outstanding and is constantly liaising with the NAC.
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by RogerS on December 29, 2021, 08:46:59 pm »
Katherine,

One thing you will learn about Amyloidosis is that we all differ both in the way the disease attacks different parts of our bodies and also in the way we respond to treatment.
It took the best part of a year seeing all sorta of specialists before I was diagnosed and by that time I was struggling to walk 50 yards.   I was given the standard VCD treatment which was remarkably effective and I have had a reasonable quality of life for several years.    In my case the disease has damaged my kidneys and because I trying to get a transplant rather than dialysis I have just started on another course of chemotherapy.
Rear assured - the NAC is the best place to be to deal with this.

Good Luck

Roger
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by Kathrine on December 29, 2021, 07:22:16 pm »
This saddens me to think you and your wife have been through such despair.
You were also young when diagnosed.
Are you able to tell me your diagnosis and treatment please?
Michael travelled back to London today, it’s approx 3hrs from where we live.
He’s so weak and frail right now , I was so worried about him getting there in such pain and discomfort.
We decided for him to go to UCL hospital as now he has a diagnosis and treatment plan his private health care will help.
I feel he is in better hands there, it’s been such a fight at our local hospital to get anything done.
He will be observed before they start any treatment.
I just hope to got her can tolerate it and gets relief , it’s so awful to see him suffer.
How has your wife coped? Do u have children?
And what sort of life do you lead now?
Thank you for reinforcing hope.
Kind regards
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by deBurca on December 29, 2021, 12:17:58 pm »
Hi Katherine, never give up hope. I was diagnosed in October 2017 at the age of 45. In the summer of 2018 I was referred to palliative care and given only a couple of months to live. At one stage while in the hospice my wife was told that I wasn't expected to last the week, however I pulled through and I am now doing very well. There is always hope.
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by Kathrine on December 27, 2021, 01:57:29 pm »
Thank you Roger,
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General Discussions / Re: AL Amyloidosis and Multiple Myeloma diagnosis
« Last Post by RogerS on December 27, 2021, 12:55:47 pm »
Katherine,

I can remember how I felt when I was given a similar diagnosis but that was five years ago and I am still around so do not give up hope.  There many others on here who are still battling on thanks to the NAC.   
Good Luck with your appointment!

Roger
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