[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 2 years, 6 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.

[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.

[rosaryParticipant]

Dear Panda

Sorry to hear you have joined this group. The good news is that there are some excellent treatments for myeloma now and many more in the pipeline so every reason to approach the future with confidence and to live a very full and normal life including time with your GD

Everyone will tell you that Myeloma is a very individual disease and it can be very confusing to piece it all together especially at the start

A good consultant who is a myeloma specialist will be the key to getting you started on the right path. You have said you are reasonably fit and that’s very helpful and you will find lots of helpful tips on nutrition and keeping as fit as possible as you embark on your treatment

Let me try and help with your questions

1. The nurse is correctly saying because your immunity may be compromised then you should take extra precautions including with your GD. Hopefully others with GD can give you more specific advice. You should ask your consultant about being tested for the antiboides ( i was tested and the consultant confirmed i had the antibodies so it can be done and I’m not clear why your nurse said they don’t recommend that )

2. Bone lesions are very common with Myeloma ( I have 5). Treatment will depend upon their size and might include Radiotherapy. You should ask your consultant about your treatment plan and this normally includes some chemo and yes bone strengthener ( I personally had all 3, Radiotherapy, chemo and Zometa ( bone strengthener)

Staging is fairly complex and its good news that you are Stage 1. If you would like to learn more about how staging is calculated I recommend Healthree University which can be found on http://www.healthtree.com as a very good and easy to follow ) resource in addition to this platform.

Its natural to feel worried about everything at the moment and Covid doesn’t help , I think a lot of us have learnt to live with it, take sensible precautions but not let it rule our lives , including seeing our loved ones.

Over the coming weeks it will get clearer and we are all here to help answer any questions you might have from a fellow patient perspective.

Good luck with everything

[rosaryParticipant]

@sachbarnes

If its helpful (as I am IGG kappa as well) my paraprotein started at 23 and dropped to 15, 7, 5, 3 ( through 4 cycles ) I then did an extra 2 cycles to try and get it lower which didn’t work ( it actually went up to 5 ! ) .

Light chains through 6 cycles were 421,46,23,17,16,10 ( so big drop after 1st cycle which consultant was happy about – I recall him saying treatment works quicker on light chains)

Your Dad has higher starting point which might mean he responds differently so please don’t take these results as meaning anything other than trying to help answer your question with one example

On your second question on SCT timing I finished my 6th cycle on Nov 15 and had my SCT 4 weeks later – timing dependent upon any waiting times, health checks and harvesting enough stem cells

Hope this helps

[rosaryParticipant]

A masterclass of risk explanation from @mulberry ! I’m about two years ahead of your dad @sachbarnes and a bit younger. Many of those who helped me at the start said “its a marathon not a sprint” dealing with this, I didn’t achieve a complete response ( my consultant said about 50% don’t ) but am very happy with how I’m dealing with it and very optimistic the docs will find a cure with the developments of Car-T / BiTE.

“Knowledge is power” and the Healthtree University really helped me learn about this complex disease, you sound like you’ve done an amazing job getting to grips with this , best wishes to you both.

[rosaryParticipant]

@sachbarnes Re staging and how high/low risk is classified, this link should help take you through it, usually takes a bit of time to get all the test done and the results collated

https://www.macmillan.org.uk/cancer-information-and-support/myeloma/staging-of-myeloma

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