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Hi everyone, some of you may remember me from a few years ago but I suspect ost won’t know me. I pop in about once a year or when Rebecca has something to say so anyway, after 5 years of Revlimid as a maintenance drug, I have to finally start again. The decision was made after my annual MRT which showed increased bone damage in new places. My IgG is still constant but that’s about all.
I had a chat with the medics yesterday and told them I don’t want a second SCT, the first left me in partial remission only and it doesn’t seem worth it at the moment to go through all that again. My wife and I have also told them that Dexy is out due to behavioural issues, I’m sure some of you will know what I mean. So the plan is to go for a BMB next week and then look at possibly Daratumumab with prednisone instead of Dexy. They are the experts so we wait and see.
Hi Richard, Sorry to hear things are on the move but sounds like you have a plan that is being tailored to what you want/don’t want. How different that must feel from when first diagnosed? – makes me shudder just thinking about that time of initial diagnosis/treatment – totally out of control. Yes covid/lockdowns and dexy on top would not be a good move for family life! Hope all services are running as normal in Germany – not sure that is the case here in the UK tbh. Lost track of it all as my haematology unit has closed due to lack of staff so disbanded to far away places courtesy of a phone line. I made the 7 year mark at Xmas treatment free but levels now slowly rising out of range but as I am not yet requiring treatment “they” won’t discuss which hospital will now do it until it happens and I have no relationship with whoever phones me for blood result update. For me, lack of control and inability to have input/forward plan what may happen shortly is almost like starting from scratch again but with more knowledge now to frustrate me. Is changing one treatment plan to another still as scary as starting treatment again I wonder? I am guessing you have maintained good mental strength/discipline throughout being on treatment and will no doubt take it all in your stride. Hope all goes well and this combination is even better for you.
Take care
Rebecca
HI Rebecca, good to hear from you. I heard things were getting bad in the UK with Hospitals being overstretched and cancer services been curtailed and I did wonder how that would affect people. One thing I’m really grateful here for is the continuity, I’ve only had 3 different doctors in 8 years. One thing no one needs is to not know what’s going on and who to talk to. I was in the hospital on Wednesday, it was like any other day albeit everyone is wearing masks.
i am lucky in that my wife is an ace researcher and along with talking to a nurse at Myeloma UK we were able to decide what treatment would suit me. I have my bone marrow biopsy on Tuesday morning and the we will then go through the treatment plan. We’ve agreed to start the Chemo on 1st February. The infusion will be done Mondays and Fridays. It was funny when my doctor originally said it would include 40mg of Dexy, my wife nearly fell off her chair with laughter and I said to her that will mean divorce. After she spoke to him, her German’s better than mine, he agreed to use something else and not mention Dexy again. I am anxious that I have to go through it again but at least there won’t be a SCT at the end of it. I managed the SCT which you know isn’t easy but then to have only a partial remission after really makes me question the value of it to me. Revlimid gave me nearly 6 years of normal protein levels. Now I’m really quite blase about it all so it isn’t so much discipline, more like everything ticking along nicely.
What maintenance treatment are you on at the moment? Rising protein levels is not such a risk in itself so long as there are no other indicators, for example with me it was increased bone damage that alerted them to the Revlimid not working anymore. Anyway, I better go, I’ll let you know next week what the plan is.
Richard
Of course I remember you. Your picture of you with a very large red nose always brought a smile to my face!!! Is that red nose real or false!!
Sorry to hear you’re having to move to the next stage now. You have done fantastically well. I know of no one who has been on revlimid for as long as yourself- well done you.
I’m more of a watcher on the forum rather than a writer, so you prob don’t know me. It seems not many of the old names/faces are around. I hope it’s cos they have better things to do 😀
I wish you all the best with your next stage of treatment. I’m just about to start 6th line, but my fabulous team in Leeds have said really I’m at the point of palliative treatment now. But we are going to try Rev/farydyk/dex for a couple of months.
Where in Germany are you? My son lives in Berlin, grandchil(1st) due in 4 weeks. Don’t know if we or they can visit due to Covid restrictions. Fingers crossed.
Good luck and stay well to all.
Mike.
Hi Mike,
I must admit I was struggling to remember the name initially. I look after palliative patients sometimes and have spent a few days on a Palliative Ward. What struck me was one of the nurses said to me that palliative does not mean the end is coming, it means that people can be helped to enjoy what they have. That’s Germany for you or rather Rheinland Pfalz / Baden Wuttenberg. I believe a lot of people have moved onto Facebook so are possibly still around but it’s 8 years since I had my diagnosis and 5 years on Revlimid. It is good considering my doctor said it will probably give me 18 months. My wife says I have the slow burning Myeloma, sometimes it doesn’t feel like it. How do you get on with Dex? My wife warned my Dr not to give me Dex but he’s done it anyone, just 4mg on the Chemo days. I hope I manage that or he’s in a lot of trouble, my wife doesn’t normally take prisoners.
I had my first BMB since Oct ’13 today. I jokingly said to my Dr that I hope he’d practiced before hand to which he replied it’ll be no problem as he’s been watching the Youtube video on how it should be done. Who says Germans have no sense of humour?
Hi Richard,
What did your latest Bmb reveal? Hope all is well
Rebecca
Hi Richard,
Sorry to here you have to start a new treatment. Hopefully the daratumumab will sort you out. Like you I look at the website on the very odd occasion for familiar names. I too am on treatment at the moment as the kappa free lights started rising and more bone damage occurred. Currently on month 5 of IRD with the results on a downward curve. The ultimate end for me is the opposite to you as I would like a second SCT with 5 million stem cells still on ice from the first transplant.The consultant said I have no chance at the moment with COVID due to risk but am hopeful things will change. Good luck with the new treatment.
Stanley
Hi Rebecca and Stan,
Sorry it’s been a few weeks for meto reply but with treament (DVD) pigging downloads wiping my internet history and normal life I haven’t been following the Forum. Anyway, enough of the excuses. You asked what my last BMB showed Rebecca, ma doctor was a bit vague, he said it showed between a 30 and 50% increase in Myeloma cells and that we had caught it at the right time. I’ve asked him about a second BMB post Chemo and he wasn’t sure whether it will be done. Ma IgG is normally a good indicator so he might stay with that.
How are you managing with the Treatment Stanley? I think I’m fortunate as in the only proper side effect I’m suffering from at the moment is acute tiredness, I also feel very cold during the infusion. The nurse was worried today so she checked my temp and that was 35 deg. C, low but not so low as I’m still here. I’ve just finished my 2nd cycle today with 2 more planned before a review.
Interesting your consultant said no SCT because of COVID, my Dr’s here wanted to do it irrespective of Covid but you have to remember that they don’t send you home here once your Leukocytes start climbing, people stay on the ward for 2 – 3 weeks. I haven’t written off a second SCT just yet, I just feel that I should exhaust other options first as we only have 3 chances with an SCT and I only received a partial remission last time. Something else to remember about an SCT here, there will do one if they believe they have got the Myeloma cells as low as they can not necessarily because they are under 10. I think I had around 34 last time round pre SCT and if I go again I will want a new harvest before starting.
Look after yourselves
Just an update. I had a BMB just over a week ago and chat with my Dr last Wednesday. The good news is that the Myeloma cells have dropped from around 50% in my bone marrow to 5%. IgG is at around 10 and the value for my Kappa Light Chains have dropped from 80 down to 10.
Now my Dr wants to carry on with treatment so it will be 4 cycles of Bortezomib once a week with Dexy taken alternate weeks. I won’t be taking Daratumumab. I am not having a SCT which is my choice and once this is over we’ll start looking at a maintenance programme.
Hi Stanley,
Wow that is fantastic news how quickly it has been brought under control again. You must be well chuffed – sounds effortlessly – but no doubt it wasn’t.
Rebecca
Sorry …Richard. Was re- reading the posts n wondering how Stanley was doing- hope as well as you. Think you’ve aced it!
Hi Richard/Rebecca,
Sorry for the late reply had a very busy few months. Had another harvest not brilliant but been on chemo for a year. Added them to my existing saved stem cells(some were damaged) for a total of 3.5 million. Second transplant in May. To be honest still very tough but it seemed easier than the first. Lost 2 dress sizes again Rebecca on the chemo diet, definitely on to that winner.No paraprotein evident light chains were 27 but on a downward curve. Ratio 1.8 nearly normal. With post 100days still a couple of weeks away and bloods taken weeks ago dare I dream for a stringent response soon. On the 10mg Revlimid maintenance regime with no effects at all. So positive to a return to work(from home first) until jabbed again. Hope you are both ok.
Stanley
Hi Stanley,
You have been busy! Glad to hear you’re over the other side of the hill now and you can soon get back to “normality” – whatever you choose that to be. Must have been gutting to have another harvest – I really hated that as much as the SCT tbh.
I am well, very slowly going out of range now but should achieve 8 years drug free at xmas before any treatment is needed. Not at treatment options stage but guess it’s whether to have a 2nd SCT or not. I only collected enough for the 1st SCT and as my immune system is always close to rock bottom I don’t think I’d get enough of a decent collection – tho don’t want the maintenance route either due to everything being so low when I haven’t had treatment for nearly 8 years. Will just have to go with my gut feeling at the time. Why do you think your 2nd SCT process was easier for you? Is that on a mental level as knowing what to expect etc? Whilst I felt very gung ho about it first round it really terrifies me now as I know what it’s like and I’ve actually got very wimpy now… but maybe that’s because I’m not at that stage yet.
As for dress sizes…I spent most of lockdown walking at least 23,000 steps a day so can match your dress size reductions but won on the pleasure process!
Rebecca
Hi Rebecca,
The harvest process for me was much easier as it was one 4 hours session after mozobil. Due to the poor harvest I felt perfectly normal afterwards where the first time round I felt like I’d been squeezed through a mangle and was in a cold sweat for 24 hours. The harvest itself was so poor I decided to look into stem cell cellularity which explained the decline through age and the estimated percentage left by the time you are 61(30% stem cells 70% fat)so felt a lot better after reading the fascinating article.The transplant mentally was tougher before going in but once I was there just got on with it. A new anti sickness drug was given that lasts for 5 days which helped greatly. Got a line infection which was cleared up very quickly with copious amounts of antibiotics. In hospital for less time 20 days v 28 first time around. The recovery at home was much better and side effects seem less. The decision to go for a second transplant for me was easy. It’s a treatment in the toolbox and if I decided against it they were very clear there would be no other offer further down the line. Not wanting to lose the opportunity I went for it. We are all very different and whatever you choose in the near future I hope it goes well.
Stanley
Hi All,
It’s quite a while since I’ve posted on here but would just like to update my story with a big event. It is 10 years today that I had a 4” tumour removed off my fifth rib and a diagnosis of myeloma was given. 2 STC’s later (2014 and 2021) damage to the spine T5 and T11 holes everywhere, cervical stenosis and a more recent basal cell carcenoma. My kappa light chain post second transplant is 30 but my ratio is an excellent 1.39. My status now lenolidonide maintenance 10mg which I tolerate ok. I’m living not existing and have achieved over the last 10 years so much in my professional life and personally have many treasured memories. I continue to eat and drink in moderation (ha ha) and have no intention of stopping just yet. Rebecca and Richard hope you are both doing ok.
All the best,
Stanley
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