This topic contains 12 replies, has 8 voices, and was last updated by 
bandityoga 6 years, 10 months ago.
Hi, for those who don’t know me, I wwas diagnoseed Feb 2013, had a SCT in Jan 2014 which didn’t work, then after a year of relative stability started to take Revlimid which dropped my IgG to 7 but, unfortunately as predicted, the Rev has stopped working. IgG is now above 16 so will be talking to my local Medics about my options. I have an MRT in a couple of weeks then will have a chat after that.
I’m not particularly interested in a second SCT because the first didn’t really do anything, looking at a couple of options and will post again in due course. For those new to MM, it’s not the end of the world, just a change in circumstances.
Hi Richard I don’t post often it is my husband who has myeloma but I remember your posts and know that you live in Germany and have a young child. You have come a long way with this horrible disease as well as learning a new language. Hopefully there are lots of options open to you and I hope you get one that works a long time. As Andy says every day is a gift enjoy it. Mags
Hi Richard – sorry to hear about the Rev but let’s hope the next one is even better – will be interested to hear of option availability in Germany. Never ceases to amaze me how individual it all is as we started at the same time – we are all heading in the same direction but going along different routes/twists n turns – here’s hoping we enjoy a long meandering path, with minimal bumps, at a snails speed only!
Rebecca
Hi Rebecca,
At least with Revlimid, we know that it will stop working at sometime, anyway I was bored with it, the neuropathy is just so boring and as for the stomach cramps, calf muscle cramps and the other side effects, I’ve had those and think I’m ready to try some new ones. Joking apart, I have an MRT at the end of next week and once the results are back, I’ll talk to my Doctor about options. He has suggested Carfilzomib. I’m half way through a training course at the moment and I really don’t want to break off because the stress and hassle of the course would make it very hard to begin again. My German isn’t that good as for my written German, don’t ask. Like all courses, the use of plain language is forbidden and the use of one word to describe something is banned when 10 fancy words will do. Anyway, after all that, Health comes first.
So far my options are:
do nothing – very unwise.
Carfilzomib with a bit of Dexy. My wife will go ape when I start taking Dexy again, could be grounds for Divorce.
Increase Revlimid dosage from 10mg to 25mg. That will only be a short term solution.
Consult a witch doctor but I don’t think there at that many in Germany.
It’s just a shame because Revlimid got my IgG down to 7 which meant we could start having something like a normal life.
Hallo Richard
We seem to have reached the same point. I have lived in Holland for over 30 years. Revlimid has worked brilliantly for me, for over 7 years, but my m-proteins are now inexorably rising. My consultant stopped the Revlimid 2 months ago and on Thursday I am to hear the result of his consultation with colleagues. Stopping the Revlimid had an instant positive effect on my blood figures but I haven’t yet noticed much difference in my intestines.
I’ll be very interested to see what treatment you end up with.
I have never had dexamethasone but hear fearsome stories about it. Ah well.
Annette
Hi Richard
I also had a SCT that didn’t work. That was in Sept 2014. My pp was 18 g/L 6 weeks before the SCT, and 24 g/L 9 weeks after. It rose steadily to 34 g/L in April 2015 with no treatment. I was then put on Rev/Dex (25mg/20mg), which halted the increasing pp. The Revlimid dose was reduced to 15mg after two cycles because of blood counts (neutropenia). This continued to work for a further 24 cycles, my pp was roughly stable around 30 g/L. Then my pp started rising again (to 38 g/L), so Cyclophosphomide was added to the mix. This halted the rise for 4 cycles at around 35 g/L. So you might want to suggest adding Cyclophosphomide to your treatment before moving on to something else. I had a total of 32 cycles on Rev/Dex, so Revlimid kept my pp under control for well over two years. The next treatment options suggested to me were Panobinostat or Pom/Dex or an Isatuximab trial. I am off treatment at the moment while I am assessed to see if I can be accepted for the trial.
Good luck with whatever you choose.
Best wishes, Ian
Hi Richard, sorry to hear the Revlimid is no longer working. That’s all Graham is on now for his maintenance and I realize it won’t work for ever but just glad it’s working for now and he will make it to his 60th in two weeks’ time. We are having a big party. I can remember reading the figures of 50% surviving 5 years when he was diagnosed in 2013, and wondering if he would make it to his 60th. I now realize these figures were probably very out of date and that even though he was diagnosed at Stage 3 that didn’t really mean much at all in terms of survival. Good luck for your next round of treatment.
Angela
Hi Richard
Sorry to hear you have relapsed but I hope they find another treatment that works. daratumumbab has been passed in Scotland but my husband, Ian is now on palliative care as the treatments don’t work for long.
Well, a little update, I had a visit to the hospital today and my wife came along, She’s brilliant at research whenever the Medics come out with something new and acts as a very good interpreter as well (German Hospital). She’s also very good at sniffing out Bullshit which I’ve never had from this hospital.
Anyway, we discussed various options and decided to increase Revlimid back to 25mg and return to monthly blood checks. Got home and the doctor phoned me to say that the IgG has infact dropped, only by about 0.1 but after something like 8 months of continual increase, this is good news. I don’t know why it’s happened, if anything it should be going up further as there’s been a lot of stress over the last few months plus going from one cold to another over the last few weeks and Bronchitis in the Summer. Anyway, we see what happens after Chrimbo.
Maureen, really sorry to hear you lost Ian last month.I know you tried everything and didn’t stop fighting for him even when he was at his lowest. Please keep an eye on the Forum, be nice to hear how you get on post MM. Now’s the time to look after yourself.
Hi Richard, good to know that the revlimid is still working for you.
I am still struggling to come to terms that Ian has passed away as it was so quick at the end. I still have questions as to why Ian had no treatment for 3 months leading up to another SCT but using radiotherapy instead of mephalan. His last treatment was 2 June and his FLC were 93 in May 186 in June and 385 in July. His consultant said all bloods kidneys etc looked good and he didn’t give him high dose steroids as Ian wasn’t too good on them and it might help to preserve his stem cells! We had no FLC reading before priming but he had a urea test the week before and kidneys were good. His FLC rose to 5000 and attacked his kidneys, after cyclophosphomide his FLC were 2000 but kidneys not good. I believe if he had been given some kind of treatment in the 3 months then he might have had a good chance of surviving. I am going to ask for a meeting in the New Year but I won’t hold my breath. The specialist in Glasgow said I could be referred to him after talking to a consultant at our local hospital. I don’t want to go for negligence just need peace of mind.
Hope you have a happy, healthy Christmas. I am going to my daughter’s in London with all the family. The granddaughters will keep me busy.
Maureen
Hi Maureen, to say what happened was galling is an understatement. At least it’s over with and Ian is not in pain anymore.
I do hope you have a nice Christmas in London and that the New Year brings something good into your life.
Richard
Hello Maureen, it’s very sad to read Ian’s story (your post – 21/12/17), and my sincere condolences to you and your family. And I note what you say regarding yourself getting a clearer picture of Ian’s last set of treatments. In my experience MM consultants do their very best to sustain and improve the life quality of their patients, and I know that the FLC MM version can be very unpredictable – however if I were you, I would (for your peace of mind) query the timescales for Ian’s treatment. Reading your numbers: you say his last treatment was 2 June (his LCs being 186). I would have expected a slight improvement or modest increase in the following month – and you say they increased to 385. Certainly an increase but not a serious number (385) to worry about – in the total scheme of things. You add that the consultant was happy with Ian’s kidney function? Could I ask whether his assessment was based on creatinine/eGFR blood test measurements, or some other method? And do you know what these values were at this point in Ian’s treatment plan?
You say Ian then had a urea test a week before and his kidneys were still good. And although the FLC version of MM can be unpredictable, for the LCs to then rise (very significantly) to 5000 in such a short space of time seems a bit odd? — and I’m not surprised his kidney function was seriously affected. Can I ask whether the 5000 figure was at the end of the ‘no treatment’ 3 month period. Lastly, I hope in the new year, you get the answers that you need (for your peace of mind), and that you and your family have a much better and happier 12 months next, than the previous year.
Peter
Hi Peter
Ian’f FLC of 5000 were at the end of his 3 months no treatment. The consultant said all bloods and kidney function etc were all good at his check up every month. I do not have Ian’s reading but I intend to ask for a print out if possible. We weren’t concerned that this FLC were 385 but I do not know why they increased to 5000 so rapidly.
I have had a very tough time over the festive season but am going for counselling next week so hopefully that will help me.
Maureen
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