Tagged: Revlimid from India
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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.
wow very interesting re Sugar Jane, will look into that. ty.
@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
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.
Re ‘risk’. The most significant determinant of risk is whether a myeloma patient has specific genetic abnormalities at diagnosis. We all have some, but the relevant ones, which should be looked for in FISH testing, are multiple gains of 1q, t(4;14), t(14;16), t(14;20) &/or del (17).
These chromosomal abnormalities don’t respond as well to current myeloma drugs as the others.
Most myelomas are IgG, those with IgM tend to have better survival rates, those with IgA somewhat worse, the rare IgE worse still. Some people have Light Chain only myeloma, where kappa light chain myeloma fares better than those with lambda light chain myeloma. In rare cases of non secretory myeloma where no aberrant protein is produced it’s thought to respond well to treatments, but is difficult to monitor. Staging at diagnosis also has a bearing on outcome, with those having the most signs of damage to the bone marrow not surprisingly tending to do less well However response to treatment is also significant. If your father responds to induction therapy, either a slow, steady reduction in disease burden, or quickly gets a complete response, these are ‘good signs’whatever type of myeloma he has and whatever stage he was at diagnosis.
A Complete Response by 100 days after ASCT is statistically significant for longer periods of survival. However there are cases where patients never have a complete response and live for well over a decade with low and stable levels of myeloma with no further treatment (possibly returning to MGUS?).
Some people with seemingly similar myelomas have frequent infections, others non at all, or recover as quickly as healthy people. There are patients who seem to defy the odds, which is why long term myeloma is seen as such an individual experience (& why I believe that hope is realistic)
Your father is not old in terms of this disease, the average age at diagnosis is around 70 and the peak age of diagnosis is 80+. The comorbities older people have, and lower general levels of fitness mean that this is a tougher disease on the very elderly, for whom a 5 year survival might seem positive, whereas it doesn’t for those of us who are younger.
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.
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.
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
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
I don’t think even a myeloma specialist looking at all your dad’s test results would be able to give you a meaningful estimate of his likely response to this first round of treatment, nor to what that would mean in the longer term. It’s most likely to reduce the myeloma burden somewhat. Mine reduced by 20% and I was told that was “good”. I have IgG lambda and the light chains went from 360 I think down to normal range. I too had 6 cycles as my paraproteins were still dropping after 4 cycles, but a stubborn “less than 2 g/l” remained after 6 cycles. With lenalidomide (Revlimid) it’s better to have 4 cycles if possible as stem cell retrieval becomes more difficult the more cycles of the drug.
There are a few patients for whom this standard first line of treatment doesn’t work. In this unlikely senario, there are other drugs that work in a different way that will be used.
In terms of timing, once the stem cells have been harvested, it doesn’t matter when the SCT itself takes place, if there has been a minor rise in myeloma cells these should be killed off by the melphalan.
It’s impossible for you to calculate when your dad will be ready for SCT yet. Sometimes (often) patients need extra time between cycles if they have a side effect, either a physical one or a physiological one. Fairly frequently as you might guess from Rosary & my experience, extra cycles are added at the end.
If your dad still has paraproteins once induction treatment is completed, he will be offered a one off infusion of cyclophosphamide prior to stem cell harvest, to try to zap remaining myeloma cells.
My experience was
24/12 finished cycle 6 (started cycle 1 August)
30/12 cyclophosphamide
8/1 stem cell harvest
4/2 Melphalan
6/2 SCT (allowing extra time for damaged kidneys to filter melphalan)
Hospitals try not to have SCT patients in over Christmas, or at least that’s been local experience here.
Does your father know about local myeloma support groups? There is a list on the myeloma UK website.
Jane
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.
Its good he’s met some other patients. Doing that settled my mind to a large extent. I was fearful of looking like a cancer patient, whatever that means, and was pleasantly surprised that I couldn’t tell who had myeloma & who was a spouse.
We all have our own way of getting our heads around the disease, for some its research, for some its maintaining as much normality as possible & for some its putting complete trust in the medical team; there is no ‘right’ way. He’s lucky that he has you to do the investigation, from what they say online, I worry that some myeloma patients’ treatment is not in line with latest research (albeit that NICE & similar bodies dictate the framework for NHS treatment in UK)
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.
I suspect (hope) the draft “no” is a tactic to get a better financial deal with the pharmaceutical company. Unfortunately we patients are not viewed as important individuals by those making the decisions, and historically on average it has taken 12 years from a drug being FDA approved, to it becoming available to NHS patients. However a multitude of new myeloma drugs are coming along, and I think the time frame for daratumumab (approved as 2nd line treatment earlier this year) was remarkable. The UK, largely thanks to Myeloma UK, also has a good track record of running large scale, later stage trials, so a significant number of NHS patients get access to latest myeloma drugs that otherwise would be a few years off.
Im sorry that your dad wont have access to 4 line induction therapy, I know your frustration, I and others diagnosed 2-4 years ago have not had NHS access to lenalidomide maintenance, despite it being a UK trial open to those diagnosed before us, showing its effectiveness. Fortunately that is in the past now, with lenalidomide maintenance after SCT finally being approved earlier this year.
All in all, there has never been a better time to be diagnosed with this disease.
Hi,
My husband is going through his 1st relapse treatment with Carfilzomib/Lenalidomide/Dexamethasone and was wondering if someone can clarify a few points:
1. His Consultant has told him that Lenalidomide maintenance is not approved under NHS after stem cell transplant after 1st relapse, but only after 1st stem cell transplant. Is anyone currently going through this maintenance treatment after 1st relapse and if so, has it worked?
2. My husband had a 3 year partial remission after 1st stem cell and was wondering if it is possible to have a full remission after 2nd stem cell as his consultant has told him that the 2nd remission is usually for a shorter period compared to 1st remission. Initially my husband was thinking of staying on the 3 drug treatment rather than go through 2nd stem cell, but would welcome thoughts of someone who has stayed on the drug treatment and what has been their response.
3. The consultant has also told him that it is not advisable to go for more than 2 stem cell transplants. Does it mean that my husband will have to rely on new treatments which are all drug combinations and they more or less need to be taken regularly.
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