Author Topic: Results of Phase I trial of CPHPC + anti-SAP antibodies  (Read 15155 times)

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Results of Phase I trial of CPHPC + anti-SAP antibodies
« Reply #15 on: April 07, 2015, 10:02:37 AM »
Many thanks Miriam and Sir Mark. Your mind reading is spot on!  :)
Pat

ziad_okeil

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  • Posts: 49
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
Re: Results of Phase I trial of CPHPC + anti-SAP antibodies
« Reply #16 on: April 08, 2015, 11:49:31 AM »
Hello Miriam,

First of all, please allow me to express my admiration for what you are doing in/for this forum. It is a great job and you are handling it very well. My compliments!

I am actually willing to come for a check up/second opinion at NAC (Already contacted Prof. Hawkins via E-mail last year) but would this make me an NAC patient? Would this make me eligible to get a chance to be included in the trial? Or at least to eventually get the new drug whenever that will be available for NAC patients?
I know it is a long shot for me as I live in Austria and not a UK citizen.

Reminder:
I have SMM and AL AMY, Skin involvement, in my face/lips mainly. No internal organ involvement (so far). Except for the elevated Lambda FLC numbers in blood, all my other numbers seem to lie in normal range.
It is supposedly a very rare form of AL AMY (according to my doctors in Austria) especially that the AMY deposits are adjacent and not interlocking (whatever that means).

Thanks a lot

Kind regards,
Ziad
« Last Edit: April 08, 2015, 02:30:16 PM by ziad_okeil »
Ziad

Miriam Vered

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Re: Results of Phase I trial of CPHPC + anti-SAP antibodies
« Reply #17 on: April 08, 2015, 05:06:16 PM »
Hi Ziad,


Thank you for your kind words.
When patients from abroad wish to be seen at the NAC, their own doctors should contact the NAC doctors to discuss the case.
I understand that you've already been in touch with Professor Hawkins. For anyone else reading this, the NAC doctors' contact information is available at:
https://www.ucl.ac.uk/amyloidosis/nac


Once it has been decided that a patient from abroad should be seen at the NAC, the Appointments and Office Manager Ramon Lamarca (contact details also at https://www.ucl.ac.uk/amyloidosis/nac) should be contacted to make the logistic arrangements.


Ziad, I recommend that you or your doctors should discuss your questions with Professor Hawkins.
Sorry that I can't be of more assistance.








ziad_okeil

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  • Posts: 49
  • Reason for joining: AL Amyloidosis - skin/Soft tissue involvement
  • Diagnosed: 03/2013
Re: Results of Phase I trial of CPHPC + anti-SAP antibodies
« Reply #18 on: April 08, 2015, 05:33:36 PM »
Thanks a lot Miriam for your quick reply.
I will certainly consider your recommendation.

Regards,
Ziad

alisonjayne

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  • Posts: 41
  • Reason for joining: My husband was diagnosed with AL amyloidosis in Oct 14 and died of multiple organ failure two wks later aged 59. Amyloid affected his tongue, digestive and nervous system and heart.
  • Diagnosed: Husband diagnosed Oct 14 after 1 yr of tests for symptoms thought to be hep EU
Re: Results of Phase I trial of CPHPC + anti-SAP antibodies
« Reply #19 on: April 12, 2015, 08:52:55 PM »
This is such positive uplifting news. I think of you all facing each day with a great deal of bravery just like David did. I sincerely hope this drug will be there for you all as soon as is possible.  Ali. X