This topic contains 99 replies, has 13 voices, and was last updated by 
dickb 4 years ago.
Hi Stanley and Richard – you have stood me up on Stans’ recent anniversary! Hope you are both keeping well and you are just having too much fun self isolating atm?
Rebecca
Hi Rebecca,
Sorry that I failed to respond to our anniversary. Hope all is well your end. Unfortunately I am relapsing this end with light chains rising but paraproteins still low. All other bloods were ok. My consultant has agreed the myeloma Xii accord trial when the time comes and another transplant as I have 5 million stem cells from the first time round. Happy to be on that one as thalidomide worked so well first time round and wanted to give it another go. Just retired again Friday to self isolate for 12 weeks.
Best regards,
Stanley
Oh Stanley, really sorry to hear that – even though I know remissions end and relapse starts at some point it always feels like a huge blow. Good tho to hear you have lots of quality stem cells left. 12 weeks self isolating and actually properly self isolating is quite an ask also. My figures have not changed and, am well, so whilst I have 12 weeks off I’m afraid I am not being as strict as outlined. I am trying but very difficult mentally to do properly. At least the sun is shining atm and no doubt the obligatory garden/home jobs list compiled/displayed. Take care and let us know how you get on with it all.
Rebecca
Hi Rebecca,
The relapse is not the blow I thought it would be as I worried about it coming back for the first 2 years then got on with life. I am philosophical and will have had 6 years before starting a new regime. There is plenty of hope for another long remission based on disease history. How wonderful you are still in remission, you will be setting some kind of record soon truly inspirational.
Stay safe,
Stanley
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.
Hi, Great to hear you are still doing ok and yes Germany does appear to be a model example of how to go the CV thing. I am told to self isolate/shield for 12 weeks – my immune system is,as always, below normal range and my kidneys not at full throttle – tho now at 47% on a mainly vegan diet now! (Mainly to comply with my daughter to be honest). I am not being strict atm and still shopping etc. Tennis closed 3 weeks ago but I just joined another Club and played on Monday (adhering you social distancing rules) and we were on lock/shutdown Tuesday morning…..most expensive game of tennis I’ve had! But feel the small club will reopen quicker allowing social distancing rules only. Quite difficult for me as because I have a letter telling me to not go out for 12 weeks it causes lots of arguments in the home – tho I feel I am being careful. Nice to hear you say “your teenage daughter…” when diagnosed it all seemed so bleak but we are all proof life goes on, perhaps not on the path we thought we’d tread but still an interesting and fulfilling path never the less.
Rebecca
Hi Richard,
Another stem cell was always the plan with my consultant as she says it gives drug free remission. She has promised me at least 3 and a half years based on first time round response. The accord trial could put in the arm for continuous maintenance though with Ninlaro. After and emergency consultancy the other day it seems I have more pressing matters. My vertebrae T11 is half eaten away with a tumour surrounding my spinal chord(no wonder I didn’t want to play golf ha! Ha!). I have been measured for urgent radiotherapy to start any day now.
On the bright side the multi disciplinary team super imposed both CT scans from 6 years ago till now and concluded that no other lesions had occurred anywhere else.
Always end on a positive.
Stay safe,
Stanley
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
Hi Richard,
I asked both my previous consultants of regular skeletal monitoring with regards to my history of bone disease and ran up against a brick wall with the excuse regular exposure to radiation is not good for me. I could have been economical with the truth and said at any stage my back was severely painful and would have gotten one but that’s not the point. I have completed 5 fractions of 4gy’s Per fraction on my back and after being in considerable pain was offered Dex which sorted me out immediately. Will have to wait for 2 weeks now to see how it’s done and whether I need another Roasting.
I am very surprised with the differing responses in Germany and the UK to who is vulnerable and what they must do to shield themselves from this virus. All myeloma patients at whatever stage in the UK must self isolate for a minimum of 12 weeks. Whereas in Germany you are allowed to work in close contact with others. I’m not sure if you have been tested or the elderly residents you are looking after have and to what frequency. Good luck with the problem with your Femur and hope it all gets sorted.
Stay safe,
Stanley
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.
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