Hi Rose, so sorry to hear about your father. He really is getting lots of things thrown at him but he has survived coronavirus so hopefully he’ll do ok with the others for now. Did coronavirus damage his kidneys or do they think it was MM? I ask because once the burden of MM has been removed kidney function can improve – I was in single figures about to go on dialysis when they discovered MM – A year later I was low 20s and 6 years later am in the 40s – so things can change. Staging of MM is not particularly important it’s his well you respond to the chemo – good that there are no fractures. Your dad sounds like a fighter – please let us know how he gets on.
Take care
Rebecca
Hi there, When I had my transplant it was some distance from where we lived and my husband needed to be home for my daughter so other than an occasional quick visit (due to travel time) I was pretty much isolated. I was fine. Visits are over rated – your husband may feel too tired etc so just use FaceTime – at set times or when he feels up to it. He will not be in any pain with the process – will be overwhelmingly tired, nauseous and have the runs for a bit – very draining mentally and physically and will hopefully sleep a lot. The best thing you can do is cheer him up in brief but plentiful “little”chats.Sometimes not having visitors gives you the ability to just focus on yourself/recovery without having to put on a brave face to make your visitor feel better. It is tough mentally though as time goes on so try and plan treats for when he is out and give him something to look forward and focus on – perhaps something new he has been wanting for his hobby – something to do in recovery or together ? Be very positive that life after transplant will go back to normal when he’s recovered and plan for that as much as you can. It’s a bit of a slog so be a cheerleader and a positive force for him. Sct is not pleasant but it’s doable- had mine 6 1/2 years ago and still in remission – life will resume again. He is likely to more worried about how you are coping so your reassurance will go a long way to make it seem easier for him to focus on his recovery. Best lippy on and big smile – send lots of photos, little funny stories etc to put a smile on his face when he needs it – he will just be feeling a bit rough n fragile.
Take care and make sure you look after yourself also.
Rebecca
Hi Neil,
My understanding is because myeloma is a cancer of the immune system then regardless of whether on chemo or not, relapsed or in remission, we are all high risk unfortunately. I did read that those with terminal cancer, with less than a year to live, must choose what they want to do. There is no house arrest or monitoring of individuals so it is up to you what risk/reward strategy you personally follow. When tests are plentiful in theory we could mix with those who have tested positive for antibodies.
Hi Greg, When I asked my GP for a shielding letter I got a txt telling me I was vulnerable but unless on treatment not in the “extremely high risk” group and to social distance. So even the medical fraternity are confused! I contacted our Helpline who clarified it was “everyone” and I asked the GP if they would align with Myeloma Uk and Bloodwise guidance. I got a shielding letter. My immune system is always below normal and I know I struggle to shake things off so I do believe I will be in great difficulty if I get it but until there is a vaccine what can we do really? Be careful, wash hands and hope for the best. If The highly vulnerable can be furloughed long term I suspect the current list will become super small.
Hi Neil, Yes some soul searching to be done on an individual basis. I am currently furloughed (which is great) but doubt whether the govt will furlough us for a year? – tho, for me, that would be great as I would be getting paid but carrying on life as normal as possible. We are all supposed to be shielding but how many of us are out on quiet walks? (me) and I go to the shops when I need to (but wear a mask n gloves).I am in remission and well and have no intention of hiding away for a year – my choice alone. Individually we have to decide what risks/outcomes we are prepared to take. I will live my life/family life well and if furloughing does not continue I will stop working as I think the workplace is where I pick up all my bugs. Even if we can furlough on health grounds I am sure we can decide not to furlough and go to work – if that is what an individual wants to do. We never know when remission ends and I already had lots of plans for summer/travel that have been scuppered. I bought a body board bag on eBay last week and when the beaches are open and the 12 weeks are up that’s where I’ll be heading regardless – but will aim to do all I can in a quietly safe manner- that’s all anyone can ask of me and I make no apologies for my choice. Our life. Our choice.
Rebecca
Hi John,
You have achieved fantastic results on induction, sorry to hear about the bone issues. The fact that you have got such a good response is hopefully an indication that your MM is easy to treat and you will have long a remission. The fact that they are not wanting to to do a double Sct is also an indication you do not have any high risk translocations also? Another plus on your side. Young and fit – another tick. At diagnosis it seems so bleak, doom and more doom but if you search for the positives and the stories that buck the trend (that’s always referred to) you will see light and hope – recognising you and your Mm is unique so your response can be equally fantastically unique (in a good way only!). I mentioned in my post the SCT urgency for me was due to VD without a third agent not known for long remission. In the waiting room I met an elderly lady who had a very long remission with just VD and as her numbers were starting to rise they were giving it her again because she’d had such a fab response the first time round! Often when we first read up on things we read the “trends” but when you dig deeper and read “all the scale” it really doesn’t appear to be much more scientific than rolling a dice and hoping Lady Luck is on your side and you have enough chips for a long game! I like to think if I live life well and stay fit to boot with a bit of Lady Luck I’ll be at the table for the long haul….obviously not science based but how you cope mentally and live with it is the real battle that you can definately win. Seek out the good stuff and dismiss the rest as not applicable to you and yours – as you are unique – and you’ll do alright.
Take care
Rebecca
Hi John, This indeed is a very worrying time to have to cope with covid pandemic and a Mm diagnosis. I was diagnosed at 50 but with severe kidney reduction – I was on velcade/dex only due to kidneys (and this treatment alone is not known for a long remission) I SCTd 4 months after finishing induction. I posed the question of further delaying Sct until 1st relapse as I felt so well etc off treatment. For me, SCT was always a gamble as kidneys were very low and was told, for me, to SCT then as in 1st relapse my kidneys may be worse and I may not be as fit/able to SCT. Fair point – but unless you have another comorbidity that comes into play – consider SCT as just another treatment option along with many others you have. At the time of mine they were trialling harvesting the stem cells of patients to be used in SCT at 1st relapse. I believe this is because whilst SCT in the UK is considered the “gold” standard of treatment – as more and better treatment options become available to us it is unlikely to remain the gold standard. Thalidomide will hopefully keep your figures the same indefinately and if it doesn’t they will add to it or put you on revlimid maintenance. Often older people choose not to SCT and live well on maintenance. At 49 you are in a good position in that your age and fitness/organ fitness should be excellent to withstand and benefit from many treatment options – of which SCT will be one perhaps at some point. I would worry much more about having an SCT now with covid around as your immune system will be so susceptible to catch anything. There are many people out there who have had fantastically long remissions on the induction therapy alone but as MM is so individual/unique it is hard to study when best to SCT …or not to SCT at all. As treatment advances I think we will look back on SCT at first stage as barbaric (tho totally doable to go through) and a sledgehammer to crack a nut – but the “gold standard” title was earned when treatment options were much more limited and less advanced/targeted – so sledgehammer needed then but a small ? now. What was your induction combination and have you achieved a complete response from it to date?
Rebecca
This website, on the covid hub, states shield even if in remission. I have pointed this out to the Surgery and they said they will defer to the Myeloma Uk advice but……very busy, wait another week in case it comes from a specialist unit and then contact the gp and they will issue a shielding letter…when they get a template from the govt – not yet issued with one – tho they have received copies! always reluctant to take any action. On the plus side you have cheered me up no end with your remission longevity and have it in my to do list to emulate it! (Currently a mere 6+ years since SCT ….but little acorns n all that)
I believe you will always be immune compromised as Mm is cancer of the immune system so should shield albeit in remission and no treatment – as per Bloodwise and this website. But hey, more importantly, how fantastic being in remission for 18 years! Did you SCT in that era?
Thanks…..you couldn’t make some of this stuff up atm! I asked my gp for a shielding letter for work purposes and got a text response that I was not extremely vulnerable as not on treatment and social distancing would suffice …..from the same surgery who badly misdiagnosed me. Was told to wait another week as specialist units are now sending letters out – spoke to haematology who advised they have had nothing to do with it? Always seems like a fight with gps to get anything done. Will try n get a letter next week from them as need one for work.
Thanks, I haven’t received one and was wondering.
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
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 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 – As someone who had no bone involvement but very reduced kidneys I found exercise was incredibly mentally uplifting and whilst very tired on chemo always felt better for going for a walk or swim (I was told I could swim throughout chemo) – once I’d motivated myself to do so. With bone involvement I guess you have to choose your exercise regime wisely ie less impact type but feel it is really beneficial to regain strength and sanity. The stronger your body is the better we can cope with the demands of chemo and relapse. Even after SCT I gauged my recovery on how I could walk a little further each day and that in itself gave me a positive to hold on to (I was 50 at diagnosis). Your wife is very young to endure this and am sure exercise and weight goals will make her feel more like her old self. It is amazing how good you feel about yourself – even if today’s goals are not to the same degree as pre MM. My hubby made me exercise throughout and whilst it was a struggle at first it really became my saviour. It is important to listen to your body but also, as always, to push that little bit more. My advise is be sensible in goals but ensure the goals keep moving forward – it’s a great uplift to body and soul.
Rebecca
