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General Discussions / Re: Soreness & tenderness from fluid retention
« Last Post by VickyB on June 17, 2019, 10:22:03 PM »
Personally, I find Scholl compression hosiery the best....they have various sizes , open toed , thigh, closed toe etc...the XL is still a bit small for me, but I manage. There are suppliers that do compression stockings by measurement. Your pharmacy can measure your ankle, calf etc....but I find they come up too baggy and ineffectual , so I would advise to make a smaller measurement.Hope this helps....I get mine on prescription, after a battle with the doc and the pharmacy...otherwise they are expensive at £20 , I think.  Vicky B
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General Discussions / Infopack from Myeloma U.K.
« Last Post by patpinchin on June 13, 2019, 02:06:52 PM »
Hi All,

From Myeloma U.K. recently....

This applies to carers for Myeloma patients but could apply equally to carers of amyloidosis patients:

”This Carers’ Week, we wanted to share Marian and John’s story. They talk about how John’s myeloma diagnosis has affected their relationship and how Marian manages in her role as a carer.”

If you’d like information and advice about being a carer, we have an Infopack for carers of myeloma patients. Find it here:

https://www.myeloma.org.uk/documents/an-infopack-for-carers-of-myeloma-patients/

Additionally, the new Patient Diary from Myeloma U.K.can be viewed & ordered here:

https://www.myeloma.org.uk/documents/patient-diary/

Warmest wishes to all. :) ;)
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General Discussions / Re: Venetoclax with AL
« Last Post by AnnR on June 13, 2019, 10:18:45 AM »
Hi
Sorry I have not had any experience of this drug. Hope it works for you and that the side effects are not too bad.
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General Discussions / Re: Soreness & tenderness from fluid retention
« Last Post by ElliottB on June 12, 2019, 02:59:54 PM »
Is there a particular make of compression stockings that proven to be the best by the way?
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General Discussions / Re: Soreness & tenderness from fluid retention
« Last Post by VickyB on June 09, 2019, 07:56:48 PM »
HI Pat...the only slight relief I get from swollen legs is from compression stockings. They are a nightmare to put on, but once you've learnt the process, they help a lot. In warm weather, my legs worsten , until I feel they will burst. I use E45 cream..it's expensive but good. I'm too disabled to elevate my legs higher than my heart, but I can't spend a day without the stockings....regards..Vicky..
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General Discussions / Venetoclax with AL
« Last Post by orishen on May 31, 2019, 10:26:25 AM »
Hi out there
I am now on a sixth line of therapy and have responded very well to Venetoclax.
Anyone has experience with this medication in AL amyloidosis?
Thanks
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Patient information events / Re: ATTR amyloidosis Infoday
« Last Post by Miriam Vered on May 24, 2019, 08:52:03 AM »
You can view the slides from Professor Gillmore's presentation at the Infoday here or in the attached PDF.
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Research / Re: Joint NAC/GSK response to patient inquiries
« Last Post by Miriam Vered on May 24, 2019, 08:38:28 AM »
Thank you, Miriam and thank you for Sir Mark's response. I didn't see the last newsletter.



You can download PDFS of all the newsletters here.
You can also contact Beth Jones and ask to receive copies of the newsletters.

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Research / Re: Joint NAC/GSK response to patient inquiries
« Last Post by tchilds on May 22, 2019, 10:38:46 PM »
Thank you, Miriam and thank you for Sir Mark's response. I didn't see the last newsletter.

I don't really know what to say other than how desperately disappointing and frustrating for all concerned. I feel very deflated right now.
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Research / Re: Joint NAC/GSK response to patient inquiries
« Last Post by Miriam Vered on May 22, 2019, 08:57:21 PM »
Yes, this is correct- see the explanation on page 2 of the last NAC newsletter.
Also, this is Professor Sir Mark Pepys' reply to your post:


Sadly the information you have seen is true.  I am very sorry indeed about your disappointment.  I share it intensely myself.  I first suggested the targeting of SAP as a possible treatment for amyloidosis in 1984 and have been working ever since to invent and develop treatments to achieve it.

GSK’s decision to terminate the programme was based on their risk/benefit analysis of results in patients with cardiac amyloidosis in the phase 2 clinical trial that they devised and ran.  GSK returned to me my patents on the invention that they had licensed and I am currently considering whether it may be possible to restart a development programme.  We have a much more optimistic view of the treatment but there is no doubt that, even if I am successful in finding the necessary investment, development will have been delayed for at least some years.

The unfortunate situation we have encountered is not only not unusual in drug development, it is actually what usually happens.  About 95% of all drug discovery and development programmes fail or are terminated.  There are many factors, not least the enormous cost of bring a new medicine all the way from its original invention to its commercial market.  This is about $1 billion.  The pharma companies thus continually have to make very challenging commercial decisions in which the medical need is not the only, or indeed, necessarily the major factor.  For example, at more or less the same time that GSK terminated our programme, they also divested their entire rare disease portfolio, choosing to focus their resources on other areas of R&D.

It will be good if I can get traction towards restarting our anti-SAP programme.  Meanwhile I have a different immunotherapeutic approach to amyloid removal that we have shown to work well in the same mouse model that so perfectly predicted the efficacy of anti-SAP in patients.  I am now trying to assemble a development programme to take this towards clinical trials.  I do not know whether I will be successful, nor whether my new drug will eventually work in patients, but my goal from the outset has been to benefit patients with amyloidosis, improve their quality of life and survival.  I do not intend to abandon this aim now.

Kindest regards

Mark Pepys

Professor Sir Mark Pepys MA MD FRCP FRCPath FRS FMedSci

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