Recent Posts

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General Discussions / Re: Appointment at NAC
« Last Post by Miriam Vered on January 21, 2020, 03:48:14 PM »
I'm glad to hear it. Good luck.
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General Discussions / Re: Appointment at NAC
« Last Post by ChammyWammyBoomBam on January 21, 2020, 03:06:53 PM »
I've heard from him.  Many Thanks.
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General Discussions / Re: Blood test results
« Last Post by Miriam Vered on January 21, 2020, 07:40:29 AM »
Quote
Thanks. By the way what does happen if blood results indicate the need to go back on chemo? Does the NAC inform you directly or do they let your haematologist know?
Professor Gillmore's answer: There is actually no robust system for indicating this - however, the actual results are sent to the haematologist

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General Discussions / Re: Appointment at NAC
« Last Post by Miriam Vered on January 20, 2020, 09:38:28 PM »
Welcome to the forum. Waiting time at the moment is 3-6 weeks from receipt of the referral letter. Ramon Lamarca, the outpatients administrative manager has told me he'll contact you.
I hope that helps.
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General Discussions / Re: Blood test results
« Last Post by RogerS on January 20, 2020, 07:27:23 PM »
Thanks for the tip Pat.  I have been waiting more than 4 weeks for my results which I had hoped to have for my local haematology appointment tomorrow - have always had them much quicker in the past so did not bother to chase them up.
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General Discussions / Re: Blood test results
« Last Post by patpinchin on January 20, 2020, 02:50:06 PM »
Hi Anne,

When I send my blood sample taken locally, I always include a note asking for the result for a certain date...my local Haematologist appointment. If I don’t receive them, I email Clinic Manager,
r.lamarca@ucl.ac.uk. It works a treat!

Good luck😊
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General Discussions / Re: Blood test results
« Last Post by AnnR on January 20, 2020, 10:27:27 AM »
|Thanks. By the way what does happen if blood results indicate the need to go back on chemo? Does the NAC inform you directly or do they let your haematologist know?
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General Discussions / Re: Blood test results
« Last Post by Miriam Vered on January 20, 2020, 08:02:55 AM »
Hi Ann,
Professor Gilmore has told me that there are some delays at the moment but if necessary you can call the secretaries - 020 7433 2811/2737/2798 
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General Discussions / Re: High bp due to al Amyloidosis
« Last Post by RogerS on January 19, 2020, 06:27:51 PM »
If you find a drug that works please let me know!

I have struggled with very high blood pressure for the last 2 years despite being tried on various medication regimes by my local nephrology team - none of these really reduced my blood pressure and several drugs had negative side effects.
I am currently on Losartan and Doxazosin but my BP is stlll worryingly high and my kidney function is worryingly low (due to the amyloidosis I am told).

I suspect that there is no definite answer but I would really like to know what is the best medication for high BP when you have amyloidosis and chronic kidney disease.
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General Discussions / Re: AL and kyprolis (carfilzomib) or Belantamab
« Last Post by patpinchin on January 19, 2020, 04:09:16 PM »
Hi Orishen

Welcome to our support forum.

Firstly the NAC’s 5 patients must have been suitable otherwise our specialist Drs would’nt have prescribed those drugs.

Secondly I have dry eye problems,not because of drugs. Fortunately, I have an excellent eye Consultant here in the U.K. as I have acute visual stress from amyloid in the conjunctiva tissues of both corneas.......who has prescribed VISU-XL eye drops, Vita-POS lubricating eye ointment at night plus tinted spectacles indoors & Marijims extra dark prescription sunglasses for fluorescent lighting & for sun too.
Luckily these measures plus a Betmar face framer sun hat (lots of styles for men & women to choose from: https://www.hatsandcaps.co.uk/search/?name=Face%20framer%20hats)

with an extra wide brim keep things under control) Rather like Michel York, British/American actor & star of Cabaret.
He has similar eye problems to me plus racoon eyes. See NAC website for a photo or Google purpura.

Good Luck. 🤞🤞
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