My pps have been rising slowly ( about 0.3 per month ) and have now reached the point ( about 16 ) where my consulant has decided to start 2nd line treatment. I was initially diagnosed in 2013.
So this week is the 1st week of Cycle 1 on the new Daratumubad ( Darzalax ) + Velcade + Dexamethasone triplet combination which was approved by NICE at the start of 2019. Interestingly there are only a handful of patients in our area who are on this triplet. I understand that Daratumubad in isolation has been around at 4th line for a longer time.
I’d be interested to hear from anyone else on the same regime.
I will periodically update on progress. So far so good!
Hope this helps.
My wife is on a similar path, initial diagnosed in 2014, treatment in 2016. Her pps started rising this year, so back in the summer the consultant decided to start treatment.
She’s now in the middle of cycle 2, and so far so good, all things considered.
No reaction to the Dara, but having a bit of numbness again from the velcade, then there’s those pesky steriods.
Hi David and Graham,
I’m new to the forum and just found your posts after starting a new topic asking about tips for coping with DVD side-effects. I was diagnosed in 2012 and I’m just starting DVD in the next couple of weeks. My paraproteins started returning very slowly in April 2018, after five lovely years of complete remission, but now they’re rising more quickly: on about 24 now. There seems to be a queue for having a line fitted (my veins don’t make me popular among staff in the day ward for Zolondronic infusions) which is holding things up and , of course, its nearly Christmas too. It sounds as if both you, David, and your wife, Graham, have made an encouraging start so far, and long may that continue. I love encouraging stories.I remember the steroids from CDT so no surprises there! Thank you for starting this helpful thread.
A quick update following our consultant appointment yesterday at the end of cycle 3.
My wifes pps have gone down to 5 from 14 after 2 cycles (waiting for the result after cycle 3).
Something must be working! Great xmas present for her.
Not only that she’s got a week off treatment for xmas.
Thanks Graham and Rache for your posts which are very helpful. I thought I would give a quick update now that I am near to the end of Cycle 3 of the DVd treatment regime.
My pps after two cycles have dropped from 18.6 to 5.8 which is very encouraging, and like Graham says the best Xmas present you could ask for. My whole blood counts are normal except the platlet count goes up and down each week between 200 and 50, presumably due to the Velcade.
The main issue is the fatigue which varies day to day. I do my best to keep active but sometimes it’s a bit of a struggle. No real problems otherwise except for a few which need managing like poor sleep, bowels, dry mouth, sore tummy from jabs.
Probably best summed up by the myeloma saying ` it’s a marathon, not a sprint’.
Good luck and Happy new year to everyone else on treatment.
Hope this helps.
Hi I’m starting DVD next wednesday.
Had a SCT 18 months ago and pps were rising slowly till December when they doubled as did light chain. They are giving me first Dara over 2 days to keep chances of a reaction down, but should then be able to speeed up if all goes well. Should have been jetting of on holiday on Monday but advised too risky and health must come first.
Only 3rd person in area (Durham) to have DVD
Will update in due course
Good luck with your treatment, hope it goes well.
I thought a quick update on my treatment may be of interest.
Not too far off the finishing line now, I’m coming towards the end of Cycle 7 but have to admit that I am finding the side effects a real slog ( fatigue, bowels, neuropathy etc ). The side effects seem to vary day to day and hour by hour so difficult to plan ahead. Nothing major so hoping these will reduce once treatment finishes.
My pps continue to drop nicely, now 2.3 at the end of cycle 6 down from 18.9 at the start, so the DV-d is clearly working. My other blood counts go up and down during the cycle but are not causing any concern to the medics.
A second stem cell transplant later this year has been mentioned but I understand that there are ( financial ) restrictions on the timing of the four weekly Darzalax maintenance which may introduce added complications. Also the CASTOR trials don’t seem to mention this and it is not clear how much benefit I might gain – any views from anyone??
I’ll start a separate post about the monthly maintenance plan. I am hoping that once this starts I can return to some sort of normality and regain some of my normal fitness.
Local haematology unit has made a number of changes for COVID-19 but the usual myeloma patients seem to be continuing with their treatment plans.
Overall, I’m pleased with progress but it has been hard work.
Hope this helps.
That’s good news, my wifes journey has been similar. She started cycle 8 yesterday, as you said a few changes have been made at the unit but treatment went ahead.
PPs down to 1 now, neuropathy and bowels the main issues, but less so than the first time round, fatigue hasn’t been an issue for her thankfully.
A 2nd transplant or not has been the big question for her over the last month or so. She had already discussed this with the consultant last month and was due to go back again in a few weeks again to finalise her decision.
She’s probably going down the maintenance route, she’s been open minded about this, but the last consultation tipped her towards this, even though the consultants recommendation was the SCT was the most clinically effective.
Knowing that the 2nd SCT is riskier, it will not be as effective as the first, there are more maintenance options available, along with the fact she was told she will likely be on maintenance anyway, has led her to change her mind and choose maintenance.
My personal view (and clearly I haven’t spent years studying to be a specialist consultant 🙂 ) is at this stage of Myeloma treatment/research a 2nd stem cell is a 50/50 decision, no right or wrong answer. Clinically speaking consultants still recommend them but I reckon in a couple of years that will change. The issue at the minute is they don’t have the clinical evidence to prove anything else, and to be honest they weren’t trying to persuade her either way, recognising it is a personal decision and there was no right or wrong answer (my humble opinion of course!).
Stay safe everyone
It’s good to hear that your wife has responded well to the second line treatment and that the finishing line is in sight.
I’ve been told that the Darzalax infusion during maintenance must not exceed 8 weeks ( normally 4 ) otherwise it all stops. This means that if a second stem cell transplant is started and then a problem such as infection arises during harvesting or transplant then this could jeopardize the continuation of the maintenance regime.
I think that the risk of losing the maintenance phase of DVd is certainly a factor to consider.
As you say in your post, the advantages of a second stem cell transplant post DVd are not clear and whether this would be added to any period of remission, I suspect not and bearing in mind the six months of treatment and recovery, it does seem a fine balance.
There is also the option of going down the stem cell route as part of third line treatment.
So it all seems very complicated, but the good news is that at least we have options. I am hoping that the maintenance regime will be effective at holding back the myeloma for a couple of years so fingers crossed.
Hope this helps.
Hi Graham, Peter and all
I finished the end of Cycle 8 end of April. Blood test results from 2 weeks ago ( mid May ) only just back which show myeloma paraprotein undetectable ( less than limit of detection 2g ), whole blood counts, liver and kidney function all normal. So really pleased with these results which shows that the treatment has been effective.
I managed all 8 cycles without any reduction or change in drug doses but have to admit that the last few weeks were a real slog. No major issues but plenty of side effects to manage, particuarly diarrehea caused by the Velcade and fatigue and lack of sleep probably the dexamethasone.
Started monthly maintenance at beginning of May so will start a new thread on the forum to report progress on this.
Hope this helps
Hi David and others
I’ve just started on DVd regime. Very helpful to read this thread as I know its quite a new treatment, and certainly has only been on offer in the Highlands where I am for a few months, so really useful to hear personal experiences. I’m at first relapse after 8 years remission, and will go on to the maintenance Darzalex after 24 weeks. Injections only, glad I don’t have to have the lengthy infusions.
First session was fine, feeling a bit off today but perhaps not surprising with the cocktail of accompanying drugs they give you – feel like a chemists shop! But no complaints, 6 months ago I was psyching up for a second CDT/HDT/Stem cell transplant so very lucky this alternative has turned up.
Sorry to hear that your myeloma has relapsed but glad that you have found my posts on this forum useful. Everyone is different so it is likely that others will have a different response to the treatment. I did find the Dvd regime a bit of a slog particularly towards the end in Cycles 7 and 8.
I’m now on Cycle 6 of the monthly maintenance and doing well, now seeing a significant improvement in the side effects from earlier treatment, although the neuropathy does seem to increase for a couple of days mid cycle which I put down to the Darzalax injection.
I also thought that a second SCT would be on the cards and have been discussing this with the medical team. The situation seems complicated especially with COVID.There seems to be no clear evidence from trials that a second SCT in combination with Darzalax maintenance will have a beneficial effect, unless anyone knows better, particularly if the response to the maintenance regime is good.
Good luck with your treatment.
Hope this helps
Hi everyone, I’ve not long finished 8 cycles of DVD after previously having a stem cell too and I too have to decide whether to do maintenance or another stem and I’ve found your threads really helpful so thank you. Has anyone who has has a 2nd sct had a good prognosis considering what it it we have?
THANKS FOR YOUR HELP
I have had 2 SCT one in 2007 and the second in 2013. They both gave me 4 1/2 years of full remission. I relapsed again in 2017 and this time was treated with carfilzomib followed by a maintenance course of carfilzomib which finished in Nov 2019. This also achieved a full remission. This is still the case with my only treatment at the moment is Zometa every 3 months.
Hope this is helpful
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