hey, yea tbh I haven’t read on someone with a clear BMB, but thats where they did dads FISH/genetic testing through so your mum must be low risk.
even with dad they weren’t going to start treatment before the MRI showed lesions, as no other CRAB symptoms, even though his BMB was showing 60-70%. I guess coz it depends where the needle hits and can be an unreliable indicator.
yea in this country VTD then ASCT seems to be standard pathway for standard risk. But in US and Europe its VRD which has shown higher rates of complete/very good response. VTD is still pretty good, but its annoying that its not the standard here really.
Also a few weeks ago DARA-VTD was drafted NO by NICE in England, even though its approved in Scotland (you will see on one of the recent updates in the news section on this site). That has even better results in trials, annoying that NICE is always behind the curve and dragging things out.
feel free to DM me on here for any stuff. I am in the same boat as you just trying to read into stuff.
but also keep positive, so many docs classify this as a chronic disease now, that doesn’t affect lifespan. 20-30 years, yes easy!
hiya, to your first post, id say we are at a completely different time now to even 5 years ago for myeloma treatment. so much of the trial data of the new drugs hitting the scene cant even give results because people are not dying! and when they relapse or become refractory to some drugs, different drugs can be used more and more that were just not there before.
for Lenalidomide post ASCT, like all the drugs and the disease itself, it seems completely individual. Check out people like the famous NBC anchor Tom Brokaw on YouTube. hes been on Len for 8 years and didnt even have an ASCT. but if your mum has clear bloods and bmb, you should have a really positive outlook. Did they do the FISH/cytogenetic genetic testing as well? that should influence treatment pathways.
also where you write average survival, you mean progression free survival. you want OS to see overall survival rates, and the average is nearer 9-10 years now (and thats a pinch of salt in my book because so many of the newer drugs aren’t in this data for relapses etc, because most of the advancements have been in the last 5-10 years).
for us, at the moment we are waiting for the first cycle of VTD to finish, and if the results could be better, going to ask our consultant if we can source the generic Len ourselves to use in induction therapy, as VRD generally has better results than VTD. because of the patent issues, private is 5k a month for it, whereas identical generic is 100 euros! there is another thread on here “Lenalidomide from India’.
also I would have a look at ‘Margarets corner’ blog for a wealth of knowledge. She is smouldering but coming upto 15-20 years based on supplemental therapy to keep levels in-check. Read on Dieneke Ferguson who went onto Curcumin Complex via reading Margarets corner when other drugs stopped working, and kept it at bay for a further 8 years before she passed away from another cancer, not myeloma.
I have posted in another thread on supplements. Hoping to start them up again asap for dad as some can compliment the drugs he has to take, and they have anti-myeloma activity too. Waiting on consultants pharmacy team to check and make sure okay to take with his current drugs.
Hi Miley, my dad was diagnosed 2 weeks ago at 67 and started VTD straight away before a planned ASCT after 6 cycles. I can definitely feel your anxiousness right now, we started tests 2 months ago when they thought it might just be smouldering, and then finally got the diagnosis through the MRI showing lesions. So I have been avidly researching for a while.
The more I read the more positive I have become, and just had to keep checking the dates on various info pieces. A lot of the scarier stuff is so outdated now! With the new therapies and treatments coming out all the time (myeloma has one of/if not the the highest new drug>approval ratios in recent times). Then you also have really exciting stuff like gene therapies on the horizon.
It definitely does seem more and more like a chronic disease with the current treatments available/imminent. And your mums case of clear bloods/bmb only improves the outlook. Keep her positive, I find I have to keep hammering that home to Dad but think its getting there.
Great to see the positive comments on this thread too. Well done all, doing great.
Tx
Each
tx both. there are so many benefits to natural supplements, I just hope our haematologist lets us continue while on treatment.
tx Paula, defo making everything as simple to follow as possible is my aim with all the drugs that have to be taken.
Sure. I fear the NHS is hand-cuffed quite a bit. I read the update on this site about Dara-VTD being drafted No last week for induction therapy, even though its approved in Scotland. We would have just made the cut-off if that was a yes. The data on that seems quite good too, so its annoying that he is on VTD to start, which might be fine, but is getting quite aged for standard practices worldwide. I guess without all this patent headache, everyone would be on something further than that like Dara-VRD as standard right now.
tx both. again much appreciated.
he hasn’t looked at local support groups, he has been chatting away to other patients at the hospital when he has had to go in though. atm his mindset seems to be just to crack on with it and forget about it as much as possible when away from that setting.
I will try have a look for local support groups, and encourage him too. Atm I think everything is a bit raw so its difficult.
Tx.
Definitely and thanks again for the info. Will check out Healthtree.
Two things I havent been able to find much info on, should we expect much change in the first cycle results as an indicator to how the response will go over the next 6 months?
Also his 6 months will finish end of November, so will he be able to have a break over Xmas or will probably need ASCT straight after?
Ty
Thank you. Its great to see people who are so invested in the knowledge and workings of this disease.
I know he is IgG Kappa. No abnormalities detected in chromosome testing/FISH. He is generally quite active, and all blood work is in normal ranges apart from raised protein abnormalities, Para is at 54.
Kappa light chain 700 and ratio is 113. albumin 32. b2m 4.2. His LDH is also in normal range.
He has 60-70% plasma in the bone marrow biopsy but I have read that can vary quite considerably depending on where the needle hits, so not a great indicator.
ty will take a look.
just spoke to his nurse regarding sourcing our own Lenalidomide and the actual pricing via NHS co-pay. so they are going to get back to me on that front. I guess we have 3 weeks now until first cycle is done so have time to explore options.
wow very interesting re Sugar Jane, will look into that. ty.
thanks so much rosary. dad is 67 and generally in good health. his Blood counts are fine, his CRAB which has meant treatment is seeing some lesions on his MRI last week, and together with elevated proteins/light chain. Before the MRI they were going to classify it as Smouldering, CT/PET was clear. stage ii but needing treatment is what the doc said. is that standard risk?
It was caught because he had fractures last year in lower back which we thought healed but then started hurting again several months ago. and I guess myeloma is preventing them healing now. He did have a Personal Trainer before, but now the fractures are there we are a limited in what we can do exercise wise. Will try and step up the long walks and stuff and hopefully when there is some healing we can start on the exercise front.
with the dex he is taking 20mg wed after Bortezomib injection, and then 20mg thur.
really appreciate all the advice, ty.
Hi, yes not sure why we were told £10,000 a cycle. Have called them and waiting for them to get back to me. Will ask about the Indian route as well. I think as we are a week into the first of VTD cycle we will probably have to complete it. I guess if a great response we can judge what to do, but likely we want to get onto VRD.
Thanks for the tip re Dex. I think it is having an effect on mood swings straight off the bat. Was there anything that could be done about that or did you just power through?
Another question, did you all have to have a period of melphalan before ASCT? Or are there any alternatives to that drug? I know from the trials more of the serious side-effects of Revlimid were when treatment included Melphalan at some stage as well.
And finally, did you all have consolidation or straight from ASCT to Revlimid maintenance?
Tx
Thanks so much, very helpful. Yes I really dont want dad to stop taking the Curcumin which will also help with his Osteoporosis. But worried they will say its too risky while on the Apixaban blood thinner.
Defo check out Ashwagandha Root Extract, as it is known to help with potential Peripheral Neuropathy/nerve pain. So could be a good addition while you are on Lenalidomide maintenance. KSM-66 is a specific extract that just uses the refined Root.
Tx
Ty. I think they must have increased the pricing then as I tried looking online and it seems to be around £10,000 a cycle inc VAT now.
Hopefully we have successful VTD+ASCT then go onto maintenance, but will just weigh up after our first results whether we should try and change to VRD, even if that means paying that heavy whack for it.
