Recent Posts

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91
General Discussions / Re: Further cardiac MRI?
« Last Post by freecurry on February 02, 2021, 08:51:00 am »
Many thanks for clarifying this Miriam.
92
General Discussions / Re: Further cardiac MRI?
« Last Post by Miriam Vered on February 02, 2021, 06:05:46 am »
The NAC uses very specific and unique imaging protocols so he will undergo an MRI during his visit. Good luck.
93
General Discussions / Further cardiac MRI?
« Last Post by freecurry on February 01, 2021, 02:05:54 pm »
My husband has today been offered appointments at the NAC next week for tests over 3 days. One of the tests is a cardiac MRI and as he had one of these locally in mid-Dec he asked whether he needed a further one. The gentleman who’d called regarding the appointments was unable to answer the query, so just checking here. We don’t mind either way, are grateful for the appointments but just don’t want to waste scarce resources. Thanks.
94
General Discussions / Re: Travelling from Ireland to London NAC and covid
« Last Post by Miriam Vered on February 01, 2021, 08:30:00 am »
Hi David,
The NAC is taking new referrals.
I recommend that you ask your doctor to consult with the NAC doctors regarding your case and regarding timing and visit logistics.
The NAC doctors' contact information is available here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre
Information for referring physicians is available here: https://www.ucl.ac.uk/amyloidosis/national-amyloidosis-centre/information-referring-physicians
Good luck.
95
General Discussions / Travelling from Ireland to London NAC and covid
« Last Post by David1974 on January 28, 2021, 09:33:14 pm »
Hi,

I would  like to know if the NAC are taking new referrals from patients consultants for newly diagnosed patients with AL Amyloidosis from the Republic of Ireland. I was diagnosed last December.
What is the procedure during covid and boarders.
I have my SCT starting next April 6th and i haven't been to the Royal Free NAC as yet. The timing is getting tight. With the covid vaccine taking 21-28 days for 90% plus efficacy after second dose.
Should i have the scan done before SCT or after? Can i get to London to get it done?
I would really like to have the SAP scan before transplant!
I would appreciate any help in this regard. My consultant and I are meeting next Monday to discuss. Any information much appreciated.

Kind Regards
David Commins
Ireland.
96
General Discussions / Re: Healing time for biopsy
« Last Post by Miriam Vered on January 27, 2021, 04:56:55 pm »
He can do a physical examination and then decide if there's a need for further investigation
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General Discussions / Re: Healing time for biopsy
« Last Post by Andrew on January 27, 2021, 04:41:47 pm »
I'll see my GP, but I'm curious, how will he know if there's an infection?
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General Discussions / Re: Healing time for biopsy
« Last Post by Miriam Vered on January 27, 2021, 04:11:46 pm »
Professor Gillmore says that this does not usually occur. It might be worth a visit to GP to make sure no infection. Probably a haematoma which should gradually resolve.
99
General Discussions / Re: Stopping Dara
« Last Post by Gary on January 27, 2021, 03:14:52 pm »
Hi
I was on dara for around 3 years then had to stop in April last year as I contracted Covid.
I was off the treatment for 7 months.
I did notice a climb in my light chains after around the 4th month of being  off it.
I’ve now had a further 3 treatments and they have gone back to normal.
Hope this helps.
Gary.
100
General Discussions / Stopping Dara
« Last Post by deBurca on January 27, 2021, 02:38:41 pm »
Just wondering if anyone has experience of ceasing daratumumab treatment after a period of normal light chain results. Have you found that light chains remain under control or was there signs of disease progression after a while off treatment? My FLC's have been close to normal range for almost 2 years of Dara monotherapy and the team are considering stopping treatment.I know last year's research shows that the median time for progression free survival in those who achieved an early deep haematological response to dara has not yet been reached. Just wondering what people's experience here is.     
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