Tagged: amyloidosis, NAC
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Hi all,
I was a 49 year old keen runner, cyclist and in 2018 i started feeling burning in my legs (like lactic acid) and breathlessness on exertion. I went to the Dr’s twice about this and was told it was probably a virus.
By the Nov 2018 It was bad, I had to take two Immodiums just to get through a yoga class and I was starting to get Panda eyes. I saw a different Dr and she immediately did blood tests which showed protein in the blood. Had bone marrow biopsy which confirmed Amyloidosis. Jan 2019 started VTD which worked well and I went to the NAC who confirmed stage 3a Mayo Cardiac AL Amyloidosis.
After 6 months remission I had to start Daratumanab which has brought the light chains down to normal and I am now in the the 38th monthly cycle.
I still have breathlessness and tightening of the chest on exertion and I’m waiting on further Cardiac tests (12 months now)
Dave
Hi Dave, thanks for sharing. I’ve just finished my chemo and had my 1st monthly cycle of daratumumab. I had a video call with London today and they were really happy with how I’ve responded to treatment which is promising.
Have you ever got back running since your diagnosis??
I have had MGUS for over 10 years, and in that time had only one alarm that was resolved after a fresh blood test
I have had regular four monthly blood tests since then and just after the last one in late Novemner last year I went to A & E. Unknown to me my blood test had shown as abnormal and. because I was not at home to receive the telephone appointment and my telephone landline was not working (now resolved), when they discovered that I was in hosital. I think they had a panic.
I never got to know exactly what the abnormalities were as I had not spoken to Haematolgy but the doctors at A & R suggested that I had a kidney infection. Now I must mention that I lost a kidney to cancer in 2007 but my eGFR has always been around 60 for as long as I have had MGUS blood tests.
Haematology booked me in for a PET scan and bone marrow biopsy and I had every confidence that O would be all clear as I had no symptoms and. it turned out that I was indeed all clear. Unfortunately haematology lost the follow up blood test results from January of this year so I had another test. Promted by me. because for the first time I was, and am still suffering from terrible bone pain though. in view of the PET scan and biopsy results it has been diagnosed as arthritis.
The latest blood test shows serum free lambda light chains 509.3 and kappa to lambda ratio 0.01
Annoyingly the blood test report plays down the flc results snd refers to the flc as a ‘slight’ rise. No GP will give any significance to the flc result.
The arthritis appeared out of the blue at the beginning of March this year. How unlucky is that ?
I am having another blood test this week and that alone is significant, since I have gone from blood tests every four months to having three in four months.
I could add more but this is enough for now
I must ad.it that what I have read about Lsmba flc is not very encouraging but I’ll let you know how my results turn out
Though I do not have a diagnosis of Amyloidosis I have just read of a connection between Amyloidosis and Rheumatoid Arthritis as I felt it was too much of coincidence to have adverse blood test results and a diagnosis of RA so close together.
Since I already have diminished kidney function i do not have an optimistic outlook.
Hello Mrs Doyle! I have just found this forum – thank goodness! I hope you are well along the path to feeling better and getting the treatment needed. Reading your past posts, I see you live in Glasgow, as do I. Your challenging path to diagnosis mimics my current experience. I am at the start of the road, visiting GP after GP who seem to know nothing about amyloidosis. May I ask where you found a doctor or consultant locally, or further afield, who was knowledgeable about the condition and who was able to refer you to the NAC ? I have bruising around my eyes, so am keen to have this investigated by an expert in the field. Any pointers you could share would be greatly appreciated. Thank you so much. All the best.
Hello 👋
Not sure if anyone else on this forum now as the last posts seem to have been made last year! I would really like to connect with others going through this journey as it is indeed quite scary! 😱 I’ve recently had a kidney biopsy that confirmed Amy – but have not had a referral yet to the NAC – although I am pushing for that! My name is Fiona and I am based in Norfolk! Would be lovely to speak to someone else as my family are not really understanding the issue right now! 😬
Hi Fiona,I’m near Manchester. I had my treatment ten years ago, chemo then stem cell transplant. I’m happy to buddy up if you can’t find anyone closer to your home.
If you are, I will send you my email address. I’m due to the NAC in February 24.
My name is lesley ( female, boys so is Leslie!!)
Xx
Hi Leslye
Thank you for your lovely msg! I would love to get to know you more – especially as you have so much more experience than me on this delightful (!) journey! Please feel free to email me on Fiona.zebedee@gmail.com
For my part I’m based in Norfolk, and this whole thing has come as a terrible shock so I would love to talk to you about your story and how you have gotten through it! ❤️ Still going strong 10 years on can only be a good thing! 👍 I have 4 kids & at this stage not quite sure what to say to them!
Xx
Hello,
Another new diagnosis here and another (former) keen runner. In fact I think I only got the diagnosis becaue of that – over 6 months or so I went from being able to run 20 miles at a good pace to having to walk after jogging a mile very slowly. In October my cardiologist (who I see every year over an unrelated issue) noticed on an echocardigram that my heart muscles were getting stiffer than they should be, he got some blood tests done that showed the lambda proteins and then it was a round of biopsies, scans and 3 days at the NAC in December. So I have smouldering myeloma and AL Amy, although they’re not entirely 100% sure it’s AL, so I had a cardiac biopsy last week to confirm whether it’s that, ATTR or maybe both. Once they know that then proper treatment can start, which would be good.
Hi all, I was previously on the NAC forum but not a regular poster and didn’t realise it had closed until I went to ask a question! have AL amyloid cardiac and have restarted on treatment recently (currently cycle3). Diagnosis late 2014 age 44 after having a stroke – I know, shocker- I was totally floored!! as I have read about some of you here I was a keen runner and cyclist before initial diagnosis and with complete remission was able to still cycle but never able to run again due to extent of the heart failure – it’s just a matter of adapting to a new norm. Everyone’s journey in this disease is different but if I can help in any way by telling my story I would be happy to answer any questions. It’s A lot to take in When you are diagnosed with a disease that no one has heard of I am a nurse and had never heard of it.
Hi Linsey, they told me I was a relatively early diagnosis at 56 but 44 is very unlucky. I was fortunate in not having a stroke or anything like that, that must have been awful for you.
I’d be interested in hearing a bit more about your treatment history – how long remissions lasted, that sort of thing. I’m about to start my first cycle of treatment at UCLH so I’ve got lots of detail on what happens through that but when you ask about after that there are lots of ifs and maybes – everyone is different I know but some personal experiences would be useful.
Thanks!
Hi Dave,
Thanks for getting in touch, sorry to hear about your diagnosis and hope chemo goes well for you, which is your main organ involvement?
My first round of chemo started at the end of 2014 and was Cyclophosphamide, velcade and Dexamethasone (CVD) Dara was not available then. I was lucky to have a complete haematological response after my first dose but carried on with treatment for approx 6 months to ensure a good effect as my heart was too damaged to be eligible for stem cell transplant. I now feel pretty lucky I didn’t have to go through that although I did have the harvest just in case! I worked all through my first chemo but was in a small office then not doing a very taxing job on the computer so wasn’t too bad, had to be hospitalised for pneumonia a couple of times which wasn’t fun though- the kids were teenagers and you can’t keep away from everything- apart from that fatigue and lack of sleep were the worst symptoms for me! Some nausia, Indigestion -the supplementary meds helped a lot with this especially the lansorasole- I don’t think I took it to start with cis I thought I’d be fine- do!!, low appetite and that constant bad taste in mouth are other thing that take some getting to grips with.
I then went onto a drug trial for a couple of years which unfortunately was stopped about 2017/18ish (it was a monoclonal anti body- possibly a bit like data but it wasn’t) during that my heart function improved quite a lot and I was able to reduce and almost stop diuretics and exercise more- we did the London to Paris cycle ride on a tandem during this time.
Unfortunately, after the trial stopped I went into permanent AF- it was always intermittent before and gradually the Symptoms of the heart failure returned but didn’t stop me doing most things, I returned to nursing, still cycle (although with e-bike, I just don’t have the capacity for too much strain during exercise) walking I find the worst especially any incline. Luckily I live Maldon, Essex which is pretty flat!!
In about September/October 2023 -my light chains started to trend upwards slightly and my exercise tolerance got noticeably worse so the decision was made to go back on the chemo. I had pretty much 9 full years in remission so if I get another 10 out of this I’ll be super happy-im now 53. This time chemo I think is better although I knew more about what to expect. no nausua, hair thinning anything like that so far.i think it was the cyclophosphamide but the week seems to go: chemo Saturday, virtually no sleep Saturday or Sunday, exhausted Monday? Not feeling great Tuesday/Wednesday but sleep a lot. Thursday. & Friday feel good, back again for more on Saturday 😊 I had to stop work this time due to nursing and risks around infection etc but think I could do something. One of the hardest parts of the whole thing is that I look and feel pretty normal most of the time but can’t do much so it’s difficult to explain.
I hope this helps and anything else you want to ask please feel free
Linsey
Thanks Linsey, that’s really useful. My amy is also of the cardiac variety and a lot of what you put already sounds familiar – steady easy exercise is fine, but any sort of slope, whether walking or cycling, quickly becomes too much – I also have an e-bike for the same reason! I do count myself fortunate that that my kids were in their 20s before my diagnosis, for many reasons. The last point you made about looking and feeling faairly normal most of the time also rings true. I get asked a lot about why I’m not running, usually from peope expecting to hear about some sort of injury and an imminent return – I haven’t really found teh ideal response to that.
It’s good to hear that your remission lasted so long and thanks for the info on side effects. My chemo will be on Wednesdays so I’m hoping that any effects will have gone by the weekend but I’m expecting to be tired – I haven’t slept well since a while before the diagnosis.
Good afternoon. I am from Belarus and my mother has ameloidosis. Tell me, please, is it possible to remotely get advice from the center’s specialists based on tests and medical history?
Sincerely, Alex
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