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.
I took Revlimid as a maintenance drug from April 2015 until Jan this year. It worked well for me as I was told to expect only 18 months from it before it stopped working. My biggest issue was the side effects, for the first couple of years constipation that slowly turned into Diarrhea upto 3 times a week. The other was neuropathy in my feet. Since coming off Revlimid my Bowel movements are near enough normal, the neuropathy has improved dramatically and I don’t get night cramps or restless feet. If it hadn’t of stopped working I’d have stayed on it because it did very well in controlling the MM.
I’ve also had mine, the first beginning of Jan and the 2nd three weeks later, I felt very tired the next day and a sore arm after the second. I did speak to my Dr beforehand and he said I must absolutely have it.
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
As an indicator of what Revlimid can do I started with it as a maintenance drug in 2015 and only now has it stopped working, that is just under 6 years. The side effects I’ve had are stomach cramps and Diarrhea. It is very expensive, over 7000€ for 21 days here in Germany, possibly why it took so long to be approved. Please remember, it might not work for everyone and not everyone will be stable for 5 years.
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 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.
There is another option which is a foot massager, it’s the sort of thing with rotating spiked rings that you roll your feet over, I use it sometimes when I’m going through a particularly bad patch. As for cramps and restless legs, I’ve just resigned myself to being woken up at least 4 times a night.
I suggest you ask for one or at least a CT scan of your hands. You might have a totally unrelated problem with them. The other option is Polyneuropathy, I like a lot of others have it in my feet. As for the tiredness I don’t know, it could be related to your medication but I’ll be surprised if it is linked to Xgeva.
Just caught up with this, I’m taking Xgeva. I have an injection done at my GP once every 4 weeks as well as Vitamin D and Calcium tablets. I don’t feel any tiredness at all after my injection. Have you had a recent MRT?
Hi Stanley, I’m as late as ever. Interesting the excuse about regular exposure to radiation. With an MRT there is no radiation, it’s done with magnetic resonance. I suppose if they were talking a CT scan then it might be possible because AFAIK that uses Xray.
As for me working, there is a big difference between the UK and Germany, first of all there wasn’t any Gov’t dithering. Next Germany was on top of testing from very early on and then introduced a lockdown probably a week sooner than the UK. My daughter has been off school for 4 weeks now. We do not have the 12 week isolation rule here and like the UK if I have any issues I can phone the Heamotology ward at the hospital I use and they will advise or bring me in. Overall Germany has fewer cases than the UK and the Germans seem to be overall better at following the rules. I haven’t been tested for CV yet and we did have a couple of residents show some symptoms so they were isolated and tested straight away. The only contact the residents have with the outside world is through the staff and even then the staff are not allowed to leave their floor during normal working hours so if an infection does happen, theoretically it can still be isolated to one floor of the building.
Anyway, good luck with the back and the isolation, I think that is going to be the hard part for a lot of people.
Hi Stanley,
Apologies for the delayed response, I am always slow to respond. Good that your Dr thinks you can have a further 3+ years, bad about the bone condition. Do you not have an annual MRT or CT scan? It is standard practice here to have an MRT every year. However I have a new Dr and he wants to do a CT instead, he believes it gives a better view. After saying that I have a Lesion on my right Femur that started 2 years ago, in the last year it’s grown over 2 cm but my Dr believes it is not MM related. So I’ll carry on because I don’t have any pain or other indication and we’ll see how long it lasts before they decide to pin it or something.
We also discussed the current CV shutdown, Germany seems to be on the ball with regard to testing and treatment in that we have only had about a quarter of the deaths of the UK despite having the Virus hit Germany either just before or at around the same time as the UK. I just need to wear a facemask if I go to work, I’m a carer in an old people’s home. So far we’ve been lucky, no cases where I work.
So let’s hope they can do something for your bones and good luck with any future treatment.
Best regards
Richard
I’ve been taking Revlimid as a maintenance drug for the last 5 years and the Diarrhea has definitely got worse. Last year my Dr was so concerned he sent me for a Colonoscopy which came out as clear. As for Nausea, that is something I haven’t had as a side effect but if you are taking taking Pantoprazole it might be worth checking that out. I stopped using it because I felt it wasn’t actually doing anything and the Stomach Cramps actually got better afterwards.
Hi Rebecca and Stanley, I shan’t hijack your thread but I haven’t been on here for a year and it was a nice surprise to hear from you. Like everything, we all “say I need to contact…” and never get round to it. 6 years already and good to see we’re still here. As for me, the Revlimid keeps working, I’m on 15mg and no Dexy but I still suffer the side effects of the Revlimid – Diarrhea twice a week.
I was in hospital in January with Pneumonia and managed to get through that only for this CV to hit. We’re all at risk but here in Germany people have been infinitely more sensible than in the UK and are taking the precautions very seriously. I work in an Old People’s Home and am now a qualified carer. There is method to my madness because I am surrounded by medically trained people, I am inside and warm and have the equipment there if I need to check myself over. They are also aware of my condition and have said the slightest sniffle I go home. The home is in isolation now with the only people allowed in or out being the Staff so work is possible as safe as being at home and doing the shopping.
Stanly, sorry to here you need new treatment, but as you point out you’ve had 6 years and at least you won’t have to go through the hassle of Stemcell collecting. Do you have to have another SCT? Medication has moved on a fair bit in the last 6 years, could you not try some of the other treatments now available?
Rebecca, do you really need to have such strict self isolation? Could you not change some of your behaviour e.g. go shopping first thing in the morning when fewer people are about, wearing of face mask and gloves, medical gloves I wear when I’m shopping. Another thing I have done is to hold my breath when I pass someone or they pass me and have sniffles or a cough. Once passed I give a long hard blow out, refill the lungs and then blow out again. The other thing I do is avoid lifts if possible. It’s the little things that can make a difference. Anyway, better go, teenage daughter is throwing another strop. Let#s see if we’re still here next year.
Well done Stanley, like you I come on the site rarely now but do get notifications. I think there were a few of us having a SCT at roughly the same time in 2014 and it’s nice to see that a number of us are still going strong such as Rebecca. I do believe attitude has a lot to do with it. So I’m with Rebecca, reunion next year and lets see how long we can last. It’s also helpful for those recently diagnosed to show that life can go on.
