Recent Posts

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21
General Discussions / Re: NAC appointment help
« Last Post by Lesley on August 16, 2022, 07:57:53 am »
I am in a quandary as to what to do right now gary! I think I’m going to have to email Ramon again!  When was the last time you were at the nac? X
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General Discussions / Re: NAC appointment help
« Last Post by Gary on August 15, 2022, 07:52:08 pm »
Hi Lesley. Please see my previous post’ patient service 2’   No patient care at all now.
Gary.
23
General Discussions / NAC appointment help
« Last Post by Lesley on August 15, 2022, 07:00:12 pm »
I guess I’m a long serving patient! I’ve always found the NAC so Uber efficient! I booked my train ticket for next week! However I was informed by avanti my train was cancelled! I’ve tried in vain to get through to someone! The phone rang out consistently  ( I even tried another number). I didn’t know what to do so I left a ( possibily garbled message ) for someone to contact me but I’m in limbo! I don’t know if my appointment has been cancelled, if it will be re scheduled or if I’ve fallen off the radar completely!  I’m really scared right now! I have questions I want to ask! I know it’s not the nac fault that the travel arrangements were cancelled but I would really like to talk to someone! I keep reaching out to Ramon who was super efficient but I can’t keep asking him!
What is happening. I think now I’d rather keep the appointment date and time and somehow get there!
Does anyone know what us happening?
x
24
General Discussions / Re: Patient service, again !
« Last Post by Lesley on August 15, 2022, 06:52:38 pm »
Gary I don’t know what is happening but it’s falling apart! I’m about to post a plea! X
25
General Discussions / Patient service, again !
« Last Post by Gary on August 14, 2022, 03:44:45 pm »
I wrote on this forum back in June about the terrible patient service given by the NAC.
I have to say it has got worse.
All you get when you ring them is an answer machine and nobody gets back to you, or if you send an email you get no response.
When I first went to the NAC some 15 yrs ago they couldn’t do enough for you. Patient care was first class
Now it appears we are statistical numbers not people or patients.
I think they need to look at their set up and think more about the patients. Without us they’d have no jobs.
Rant over.
26
General Discussions / Evusheld
« Last Post by Mo Perry on August 14, 2022, 01:33:42 pm »
Hi,
If you have been following the progress of Evusheld , the Covid vaccine for those with blood cancer, you might be interested in this article from Blood Cancer UK.
Stay safe,
Mo Perry

https://bloodcancer.org.uk/news/leading-charities-and-clinicians-urge-government-to-secure-evusheld/
27
General Discussions / Bone marrow biopsy after ASCT
« Last Post by Justme on August 13, 2022, 02:36:42 pm »
Hi all

My wife is coming up 100 days post stem cell transplant and the option of a second bone marrow biopsy, to have more detail about her response, is on offer but Drs not pushing either way as it wouldn’t change the treatment plan for now.

We are very uncertain about whether to have it or not and wondered what others have done in this situation and your experiences. She’s had a biopsy previously so knows what’s involved in the procedure.

All insights welcome!

Thanks
28
General Discussions / Re: Lenalidomide maintenance after ASCT
« Last Post by Richardpreston on August 05, 2022, 10:41:31 am »
Hi Mo

This is a really tricky one.  Right from the start - at my first visit to the NAC and Dr (now Prof) Gilmore stressed that amyloidosis is different for everyone.  Treatment has moved on since I was diagnosed but a lot of the same drugs are still used.

Velcade, thalidomide and Lenalidomide in various cocktails had some impact on my free light chains but not sustained and they caused increasing damage.  I hd a Stem Cell Transplant in 2012 which had a 95% response - whoopee!  Throughout my treatment (at the Christie in Manchester) I spoke to my haematologist and Prof Gilmore and throughout I had two opinions - fortunately they agreed.

After the transplant we decided not to take any maintenance drugs because I did not tolerate them very well.  It was 7 years before I needed more treatment.  I started on Daratumumab and that had a very quick effect.  The initial course of treatment was stopped part way through because of Covid and I have't had any treatment for over two years.  My FLCs are moving up again and we are talking about restarting treatment, but not yet.

How much experience does your consultant have wit Amy?  Does s/he talk to the NAC.  Is is a multidisciplinary team discussing your case? I have built up trust with my haematologist over 12 years and I still talk to the NAC so we can be sure of considering all the options.

The decisions can be difficult and I hope this helps.





29
General Discussions / Second trip to the NAC
« Last Post by carbre on August 02, 2022, 11:24:15 am »
Dear all
I am reaching out as I’m scared about my second visit to the NAC
I went last year and no evidence was found.
I have raised SAA . I have not had bloods for a couple of months.
My symptoms are extensive stomach problems exhaustion swollen shoulders painful joints v dry skin bruising nail changes ptosis - leukocytes in urine - lumps in the mouth carpal tunnel
My eye consultant raised concerns as I have yellowing on eyelid and lumps and that is why I’m returning.
The toll that this has taken on me emotionally is awful. I have seen 17 consultants ( privately)
and 5 GPs and had loads of tests .
I don’t know what will come out of these visits but I’m obviously anxious.
I read some of your posts and what you have gone through and how strong you have been and I so admire you.
If anyone feels like responding giving me positive vibes I would so appreciate it.
I will post whatever the result is.
Thank you
Carole
30
General Discussions / Information on Progress with Treatments for Amyloidosis
« Last Post by Ian Tod on August 01, 2022, 11:09:11 am »
I find that US based Amyloidosis Foundation website (https://amyloidosis.org) is a useful source of information about amyloidosis.

The Amyloidosis Foundation recently presented a seminar entitled  "Progress in Amyloidosis: 2022".  Interesting to learn about the treatments  being researched and developed. The link for the seminar is

https://www.youtube.com/watch?v=gzXj4D50oP0

Trust this helps.
Ian
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