[rosaryParticipant]

Hi

It’s probably best if your haematologist helps you with all of this – I assume they have nit just sent the data without some form of explanation….

If you are inclined to do the research for yourself you can enter your note into Claude and it will help you understand what the data is telling you ( I use Claude a lot and whilst it can make errors it’s pretty helpful )

The good news is the advances in myeloma treatment have been amazing over the past few years and I have been living with this for a while and lead a good life – your note suggests “standard risk” , stage 2 which should be a good starting point as you are given treatment options …. your lambda reading is high and needs more detailed explanation ensure you are talking to a haemotologist who has detailed knowledge of myeloma

[rosaryParticipant]

Hi , very comprehensive post and I can relate to these symptoms, especially bone pain and night sweats – trying to understand when MGUS becomes Myeloma is far from easy and I can relate to that !

You’ve had a comprehensive time with the docs so one thing I did was to check I was talking to myeloma specialists ( as distinct from general haematologists ) – there are some very good ones at Royal Marsden / UCC and other leading uk hospitals where they have myeloma specialists

You’ve mentioned Paraprotein and bone lesions (none ) so maybe worth looking at CRAB which has other things to measure on the journey from MGUS to Myeloma ( pasted below to help you go through this )- this might also help you understand why the Docs are on the fence with your diagnosis

The advances MGUS/ Myeloma care are astonishing so worth reading up on the latest – I use HealthTree.org which is an American site full of very helpful information – they have a ‘find your twin’ section if you don’t find you get What your looking for from UK respondents

Wishing you all the best

CRAB crieteria

The CRAB criteria are the classic set of end-organ damage features used to diagnose symptomatic multiple myeloma (as opposed to smoldering/asymptomatic myeloma). Each letter stands for a category of damage caused by the myeloma cells:

– **C – Calcium elevation**: Hypercalcemia, typically defined as serum calcium >0.25 mmol/L (>1 mg/dL) above the upper limit of normal, or >2.75 mmol/L (>11 mg/dL). Caused by bone breakdown releasing calcium into the blood.

– **R – Renal insufficiency**: Kidney impairment, typically creatinine >177 μmol/L (>2 mg/dL) or creatinine clearance <40 mL/min. Often caused by light chains (“Bence Jones protein”) damaging the kidney tubules.

– **A – Anemia**: Hemoglobin more than 2 g/dL below the lower limit of normal, or hemoglobin <10 g/dL. Caused by myeloma cells crowding out normal blood-forming cells in the bone marrow.

– **B – Bone lesions**: One or more osteolytic lesions on X-ray, CT, or PET-CT — the classic “punched-out” lesions, or pathologic fractures. Caused by myeloma cells stimulating bone-destroying osteoclasts.

If a patient with a clonal plasma cell disorder has one or more of these features, it’s classified as active/symptomatic multiple myeloma requiring treatment, rather than smoldering myeloma (which is monitored without treatment).

Note: the diagnostic criteria have since been expanded (the 2014 IMWG update added additional “SLiM” biomarkers — ≥60% clonal bone marrow plasma cells, involved:uninvolved light chain ratio ≥100, or more than one focal lesion on MRI — that also qualify as disease-defining even without CRAB features present).

This is general medical information — if this relates to your own or someone else’s diagnosis, it’s worth going over the specific numbers with the treating hematologist, since thresholds and staging can affect treatment decisions.

[rosaryParticipant]

Congrats on such a positive post ….. if you like info then have a look at healthtree.org which has HealthTree university which is an excellent resource on myeloma ….I\’ve also found chatgbt has been getting better and better ….stem cell will need all your fitness as good as you can get it ….. I\’m five years on now from stem cell and living a good life around some of the extra care you need to take of yourself so you\’re doing a brilliant job to have got on top of this as quickly as you have …. friends can struggle on how to ask you how you are so don\’t be too tough on them !

[rosaryParticipant]

Thanks – that’s helpful – I see IMS26 is in Glasgow next year which could be interesting to attend.

[rosaryParticipant]

I was given two tips which helped ease the side effect some call “Zometa chills” which was to drink a litre of water during the infusion and to ask the nurse to extend the infusion time from 14 l5 mins to 30mins – it definitely helped

[rosaryParticipant]

Good luck with everything and in answer to your questions

1. 3 months to recover from SCT – went well with no complications …

2. Travelling after about 6 months shorthaul , 12 months longhaul

3. “Sturdy” on Lenalidomide maint now for 5 years post SCT

Lots of different experiences you will read about and my side effects were “normal” …the best advice I can give is to get in as good as shape as you can now and have someone around for the first month or so to help you – I was pretty fatigues most of the time which I found frustrating ….

Good luck

[rosaryParticipant]

Hi BTU

There are several centres of excellence in London should you need them – UCL and Royal Marsden ( Sutton ) have some of the top UK specialists and are well organised ( around waiting times and renting any necessary scans ) – you will need referral from your GP and maybe a firm nudge !

Sounds like you are already measuring light chains and Paraprotein ( two key markers ) but there are other factors that will be considered before any diagnosis /staging … good news you are feeling well….

If you need treatment the good news is that there are many excellent meds available and the advances over the last few years have been good news for patients with more in the pipeline …

If you are someone who likes to get informed I recommend http://www.HealthTree.org which is an American site full of excellent educational resources ( Healthtree university )

Good luck with next steps , completely understandable to be anxious so stay strong and one step at a time …

[rosaryParticipant]

Hi Rachel , your dad is lucky to have you helping pull some of the info together , it is confusing to start with …. Jane has offered wise words which are hard to add to

You mention the Lister Hospital – which Lister is that ?

[rosaryParticipant]

thanks @mulberry , we have had many exchanges over generics and I hope you remain well!

My post was because this appears a big change by the NHS that might have ramifications for those that have opted to source generic lenalidomide outside of the NHS as I know you have

For those being prescribed Revlimid within the NHS this appears a change being forced on patients hence my question about #patientrights to have this change imposed.

Let see if others have comments although this may be a very recent policy change

[rosaryParticipant]

Can’t answer your question directly but I did not want to have an SCT and in the end I did (mainly because I had the option and my consultant pointed out that as I got older that would not necessarily be the case ) as it transpires I managed the SCT fine but it “did not work” so in some sense I am where your question is – spent days and days researching this question and there is no clear answer , just different opinions. I am 3 years post SCT on Revlimid maint and stable – I believe the future lies in CART/ BITE and in the US that is a big change for myeloma patients but that’s going to take a long time to become available in the UK NHS ( out of trials ) and so SCT remains the recommended treatment in the UK
for myeloma patients – keep us posted on your thinking

[rosaryParticipant]

Thanks for sharing your journey and best wishes for the next stage

I’d be very interested to know more about the 4 options you mention and why you decided on the trial – can you share more details about the trial

Thanks very much

[rosaryParticipant]

John

I recall a medial research paper that attempts to answer your question so it exists. The data as I recall was frustratingly difficult to interpret and life expectancy just looked so much shorter than I believed in given the huge developments in Myelona treatment that the research paper didn’t take into account as ( of course ) it can only interpret historical data. Myeloma is such an individual disease that generic data is so very hard to apply to our own circumstances.

You mention US attitudes to SCT are a bit different and you are right that there are more doctors there who don’t auto recommend SCT as I found in the UK ( there are other threads on this subject and smartpatients also cover this well )

Investing in a private consultation with Dr Kaiser as @mulberry suggested I agree with and ask them for a list of info they need

Be careful of efficacy of Indian drugs. I took Dr Reddy’s Lenalidomide for a while but there are fakes out there as well to be careful about

Your post reminded me of all the questions I was trying to get answers to so good luck and I previously mentioned HealthTree where I learnt a huge amount from .

• This reply was modified 4 years, 3 months ago by  rosary.

[rosaryParticipant]

David

Wishing you all the best for your treatment. I remember the shock when I was diagnosed nearly three years ago and went through the same chemo , radiation and then stem cell transplant that lies ahead. Yes your head will spin but then you will get on top of this ….The treatment of Myeloma has seen incredible advances over the past few years and for many of us now means we can live a near normal life and you should be optimistic. The tips I would offer from my own experience are 1) record your sessions with doctors as they can use a lot of jargon and I found it difficult to process ( live ) what was being said as I was stressed at the start – 2 ) use wwww.Healthtree.com to help educate yourself ( a fantastic US resource )3) be prepared for dexamethasone ( a steroid ) to have some side effects on your mood and warn your loved ones ( that tip comes from my wife !

I wish you all the best for the coming months – pace yourself as Myeloma is not a quick fix but is something I am living with and enjoying life .

[rosaryParticipant]

John

In relation to your second question ( and I noted preference to avoid London which I query as it’s all outpatient based and there are some of the top UK Myelona doctors in London )

I went private and the cost of diagnosis , tests , 8 rounds of RVD and a Stem cell transplant was in the region of £150k – I did this with HCA at the Shard/ London Bridge Hospital – they have Myeloma specialists. I have now switched to the Royal Marsden who have an excellent myeloma team ( private and NHS ).

On how Long the treatment of myeloma lasts this is not a quick fix ( Myeloma is currently incurable but very treatable for many of us for long term periods ) – it took me about 9 months from diagnosis to transplant and I am still in main treatment that requires hospital checks every 2 months ……… at 76 you will need to be in good physical condition for an SCT and this is worth discussing with your consultant early ( if you choose to go down that route)

Given you were diagnosed in Jan 21 why have you not started treatment ?

I find the resources of http://www.HealthTree.org very helpful and suggest you work through some of the HealthTree Universith modules to help you underrated some of the questions your first question asks ?

[rosaryParticipant]

I had some side effects from Zometa , I think commonly know as Zometa chills

I was given tie bits of advice to mitigate, drink lots of water during the infusion and ask if the infusion can be given over 30mins rather than 15 – I found both reduced the chills that come on approx 36 hours after treatment.

[Author]

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