Hi,
toffee66 – it’s good to hear that you, like others, have had a quick response for the supply of anti-virals after a positive Covid test. I hope that you’re completely over Covid, I do hear of lots of people being fatigued on and off for some time after even a mild infection. You’re certainly right that it’s going to be nigh on impossible to avoid Covid infections in the coming months and years, but with weaker strains, vaccination, general immunity and more treatments available, it is becoming something that we can live with. Quite an extra burden, though, to those of us (and our families) with myeloma or other conditions affecting our immune response.
Back on 21st March I commented above that I thought I may have had Covid. I saw this as reason to relax a little more and spend some time with friends, even thinking about going to the local swimming pool or into a restaurant. My wife, understandably, was concerned – why throw caution to the wind after being so careful for the past 2 years if we didn’t know if we’d actually had Covid or not?
We found that the local Bupa clinic offer a simple Covid antibody test, the AntiSARSCoV2 IgG Method using a SureScreen Lateral Flow Test Cassette. Don’t mistake that generic use of ‘Lateral Flow’ with the ubiquitous throat and nasal swab test, this one is done with a drop of blood from your finger. Also, do note the reference to ‘IgG’ here outside of the context of myeloma (it is part of the immune system, after all).
So, a little finger-prick and 15 minutes later, it turned out that both my wife and I had indeed had a live Covid infection in March, albeit with mild symptoms and no positive LFD test.
I’m 2½ years post SCT and generally have a neutrophil level around 1.0 x10*9/L (so, a bit low) but don’t tend to get many infections. I was pleased, with the aid of 3 vaccinations, to have fought off Omicron without too much trouble. Not having had a positive PCR or LFD test, I didn’t ask for or receive the anti-viral treatment. After the week of feeling ropey, I had 2 very normal and active weeks, but have since been more prone to fatigue than normal, and am more aware of some aches in my back, but this may not be related. My neutrophil level dropped from 1.4 to 0.8 in blood tests a few weeks each side of the Covid infection, so I assume that it did take it out of my immune system.
You have to wait around 3 weeks since infection to have the SureScreen test, but importantly it does register a result ONLY from live viral infection, not from an immune response to the vaccination.
I’d be very interested to hear of other myeloma patient’s experience with Covid.
Rich 👍
Hi Emma,
I am very sorry to hear of the loss of your Mum, and the confusion around her diagnosis and time in hospital. May I add my condolences to those that you’ve already received here.
I am glad to hear that you aren’t holding on to any anger, it can’t change things now. Sitting with the sadness that we feel, and the loss that goes on, can be more helpful than pushing it away or hiding from it.
Bereavement and grief inevitably have a huge impact on your life, for a long period of time, and it can often be difficult to talk about. It is good to remember and focus on the good times you had with your Mum, but also important to give yourself space to grieve. There are lots of avenues of help available which you may benefit from, local hospices often have a bereavement service, or you can meet with a bereavement counsellor from Cruse. There are other resources such as http://www.ataloss.org – although the range of information and services they have can seem daunting.
Do reach out to us on this forum, and the infoline.
Best wishes,
Rich.
Hi Geoff,
Great to hear from you last week, and I’m really pleased that you’ve got through the SCT without too many issues (let’s not mention the infection!). You’re doing really well to have a good appetite and only needing a short nap in the afternoon, I’m beginning to wonder if I’m a bit of a lightweight!! 😀
How are you doing this week? Are they keeping a close eye on your blood levels?
I’m sure you’ll continue well with your recovery, I did find that it took a good few months before I had anything like my normal energy levels, but as I said before, could see a small improvement each day.
Best wishes,
Rich 👍
Hi Peter,
You’ve certainly hit on something here, and it’s great that Myeloma UK, and other support services like Macmillan, understand the specific stress and strain that is put on carers. My wife would identify with lots of what’s been said on this thread.
Additionally, we’ve found some counselling from a joint NHS / Macmillan service helpful, and a mindfulness App (headspace), which help to put things into a framework rather than the usual chaos of thought brought about by fear and uncertainty.
Whilst myeloma is always looming with its uncertain control of your lives, it’s good to focus on things that you can have control of, whether that’s choosing to spend time with friends or family, going on trips or exploring local places, spending time in nature, or undertaking projects. We recently moved house, which seemed ridiculous with everything else that was going on, but was a good way of showing that we still have a choice in how we live. The move has led to the need for lots of DIY and gardening projects, which can also feel very positive and constructive.
It’s not surprising for patients, and even more-so their carers, to find an anxiety that they didn’t ever experience before, living with the stress and uncertainty of the disease and its treatment is wearing. It does improve in time, but as with grief, can strike you both at unexpected times and in unusual ways. Talk to each other, to friends, to the lovely folk on the info line and in support groups, it’s good to be open and up-front about feelings, and important to accept that these feelings are natural and not ‘wrong’.
Some people find it good to laugh in the face of adversity, not an approach my wife would subscribe to, but I’m sure it works for some people! We do find that listening to ‘Just a Minute’ and other funny radio shows really takes us out of our situation for a while.
Waffle over! Rich 👍
Hi Madison,
Just checking in to see how you’re doing, how did you get on with your GP?
We’re here for you, don’t ever hesitate to call out for help, advice or a chat!
Rich 👍
Hi Geoff,
How are you doing mate? Did you get released home last week? Hopefully once you’re back in your own space you’ll be able to rest and recuperate better, none of those constant obs checks and blood tests!
I was surprised how long it took me to get my energy back after the SCT, but each day I felt about half a percent better than the day before! Slow, but steady progress. I hope that the same is true for you, or even faster.
How are your blood levels? They can be rather up-and-down for a few months after treatment, so don’t worry if they’re not always heading in the right direction.
Have you got your appetite back? I longed to eat certain things (I’m vegetarian, so was craving fried tofu!!) but actually found that I couldn’t always finish meals, your gut really takes a battering from the high dose chemotherapy.
Hopefully your fluid retention is sorted and you’re able to get out and about.
Looking forward to hear how you’re doing.
Best wishes,
Rich 👍
Hi Tommac,
Just checking in to see how you’re doing? Have you got your treatment plan in place now? It can seem daunting, but if you’re a practical person there’s a certain (grim!) satisfaction in crossing off the various meds on the chart each day, knowing that you’re doing something positive to fight this affliction.
It can be a long road, but each step takes you closer to good health following treatment, just take one day at a time and remember to enjoy simple things each day.
Take care,
Rich 👍
Hi David,
You’re doing really well to talk about your shock and anxiety here, they can be bigger mountains to overcome than the myeloma itself, or the treatment.
Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD (very similar to your upcoming treatment, but without the daratumumab) and a stem cell transplant.
You’ll get lots of friendly advice here, and the main messages are strong and clear:
– This is a treatable disease that you can live with for many years.
– It’s a rollercoaster. Being diagnosed with cancer is a shock, and the speed with which you’re put on chemotherapy when you’re reeling from the diagnosis is difficult to keep up with.
– NHS teams are good at treating the myeloma itself, but do push them for answers and help with the associated issues such as bone pain (which you clearly know about) and peripheral neuropathy.
– Medical advances have been very effective in recent years, and there’s exciting new treatments which we expect to see in our lifetimes.
Like Mulberry, I was told that myeloma patients are expected to live for between 3 months to 3 years, this wasn’t qualified in any way, e.g. if that’s with or without treatment. I felt like jumping off of a cliff rather than facing chemotherapy, but with care and support from my wife, friends and the NHS team, I got through it and would face it again without too much trepidation.
Life is worth living, OK there’s some things that I don’t do now (e.g. running, or lifting anything more than a few kilos) and I have some bad days, but mostly life is as good as it was before my diagnosis and I’m fitter and more active than many people my age (I’m only 3 years ahead of you!) My remaining aches and pains from bone damage are less severe than the general age-related aches and pains of many of my peers.
Do make good use of this forum, and the Myeloma UK infoline, remember to enjoy the things you’ve always enjoyed, and look to a time beyond the treatment when you can get back to full life.
Kevin, glad to hear that you’re in a period of remission, and long may the disgracefulness continue! 🤣
Rael, sorry to hear of both your and your husband’s situations, but so glad that you’ve got each other and that you can see positive outcomes from treatment. Life is a mystery and throws difficulties at us, it’s good to really take hold of and appreciate the good things that come our way as well. I’ve become more open, more direct with people, more focused on taking opportunities and making the most of life, being able to ask for help and also to offer it.
Best wishes,
Rich 👍
Hi Madison,
Thank you for posting on the forum, it is totally the right thing to do. As Mulberry says, we’ve all been thrown into the horror that you find yourself in. I echo everything else that Mulberry says as well (she’s very wise!) Whilst the 3-month wait may seem excruciating, your paraprotein levels are relatively low. Mine was around 39g/l at diagnosis and I was experience a lot of rib pain and some back pain, I was male and 44 years-old at the time, I’m now 47 (and still male!)
Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.
Three quick things I’d recommend:
1) Do phone the Myeloma UK Infoline, they’re very helpful and happy to talk – 0800 980 3332
2) Bisphosphonate treatment is common for osteoporosis. The same treatment is very effective against bone disease caused by myeloma. If you’re not on that treatment, I’d recommend talking to your rheumatologist or doctor about it.
3) When you speak to your GP, ask them what your white blood cell count is. A low WBC is another indicator of myeloma.
The mind is very powerful over the body, we ignore lots of little aches and pains until we’re got a reason to focus on them, so your lower back pain may be due to osteoporosis, or just general aches and pains.
As well as MGUS, there’s another ‘level’ of myeloma known as ‘smouldering myeloma’, a friend of mine was diagnosed with this 3 years ago and her paraprotein level has been stable around 28g/l for that entire time.
I don’t think there’s any need to seek a private consultation when your paraprotein levels are so low, it’s very likely to be MGUS and giving you no ill effect (apart from some stress!), 3 monthly checks are normal and you are a long way off being diagnosed with myeloma. You’ll find plenty of people on this forum talking about how even a diagnosis of myeloma isn’t the end of the road for them, there are lots of effective treatments.
Let us know how you get on with your GP.
Best wishes,
Rich.
Hi Satellite,
How are you doing? It’s horrible having to wait for appointments. Hopefully you’ve enjoyed the good weather, I find sunny days much easier to get through than dark ones. Have you found anything to help you sleep at night, or tried any mindfulness techniques? They largely focus on controlling your breathing and being present in the room where you are, helping to stop your mind racing to other places. I’ve found them helpful – the hospital gave me 6 sessions with a counsellor (part funded by Macmillan) which improved my awareness of such techniques.
Best wishes, and do let us know how you’re getting on.
Rich 👍
Thanks for the update Lili,
Glad that your husband has had his 4th jab (I’m hoping for mine soon!) and is progressing well with the induction treatment. It’s a long road, with the SCT to overcome at the end, but is worth it for the return to health that it brings.
Ah, steroids! I hoped they’d give me lots of energy, but actually I was just tired from lack of sleep. They do help your body to fight back, and keep some weight on.
Best wishes, and let us know if we can help with any other aspect of your and your husband’s journey.
Rich 👍
Hi Geoff, it’s great to hear from you!
Sorry to hear about the infection and fluid retention, but I’m so glad that the SCT itself was successful and that your bloods have responded so well, 1.8 for your neutrophils is amazing so soon after it being zero! Hopefully you won’t be prone to infections when you go home from hospital (my neutrophils were about 0.8 when I went home!)
That feeling of looking forward to eating is so good after what your body’s been through.
I hope the swelling goes down quickly, sounds uncomfortable.
Well done for getting through the last couple of weeks, now you can concentrate on getting your strength back. I’m sure your wife will feel nervous of the infection risk once you’re home, but at least we’ve all learnt a lot about avoiding infectious diseases in the last couple of years!
Speak to you soon, take care and enjoy feeling a little bit better each day.
Rich 👍
Hi BeatTheAverage (love the username!)
I’m glad to hear that you’re aiming to live life to the full, a very good idea! Just a bit tricker than normal in these days of pandemic.
Myeloma UK have recently trained some peer-volunteers to assist on this forum. I am one such person and was treated for myeloma in 2019 with VTD and a stem cell transplant.
Covid hit here in the UK 2 weeks after I’d shaken off the rigid back brace that I’d had to wear for a couple of months after my SCT, so I was just about to start living again when I had to stay at home for 3 months! At least it was sunny then, and I had the exercise bike in the garden to get some strength back.
Living in Devon, we’ve not left the county for 2 years (well, one day in Cornwall), and I must say that I’m anxious about flying, or being on public transport. Once we see where this current wave of Covid goes, and if it proves that symptoms continue to get milder, it will be lovely to travel again.
You’ll have to ensure that your travel insurance company know about your myeloma, you can even let a hospital in your destination know that you’re going to be there, but I would expect all health services are going to be a bit stretched for the next couple of years.
I’d certainly be interested to know if others have travelled in the last few months, and how they’ve found it. Several friends of ours who don’t have myeloma and have travelled, have picked up Covid, so I think you have to take the view that you’re very likely to get Covid whilst travelling, but it may not be such a big deal now that we’re vaccinated and that treatments are available to help if you do succumb.
This probably hasn’t been a particularly useful reply, but I’m suer others will join in, and I’ll be interested to hear what you decide to do and how you get on.
Each day is worth living for. I cycled a total of 1,000 miles last year which felt amazing after barely being able to walk across the room 3 years ago.
Best wishes,
Rich 👍
Thanks for your message Tim, and I’m glad to hear that this aspect of the NHS is working so efficiently!
Sorry to hear that you’ve gone down with Covid, but glad you got the anti-viral infusion so quickly.
How have you been with it? Have you had any symptoms?
My wife and I saw a friend last Monday for 20 minutes who then tested positive on Tuesday. We had a bit of a stressful week, thinking that any soreness in the throat or tiredness of the limbs was the onset of Covid, but we’ve got this far without any real symptoms. We’ve only tested once (yesterday) which was negative, but I wonder if I have had a mild case of Covid as I’ve had,
a) mild sore through,
b) mild congestion and runny nose,
c) mild upset stomach,
d) tiredness,
e) mild headache and
f) about an hour overnight when I could smell smoke, even though there was no smoke in the house (I’ve since read of of this as a post Covid symptom).
Now I’m sounding like a hypochondriac, which is very far from the truth!
I’m interested to hear of other myeloma patient’s experiences of having Covid.
Hopefully we’ll all qualify for the 4th jab in April 👍
Speak to you soon,
Rich.
Hi Geoff, just checking in to see how you’re doing mate. I just wanted you to know that we’re thinking of you and hope you’re doing well with the transplant and recovery.
Stay strong,
Rich 👍
