[maidmarionParticipant]

Hi twinz, my husband had his SCT in October 2021 at The Churchill Hospital, Oxford. On leaving the hospital he was given a letter detailing all his childhood vaccinations and also COVID and pneumonia. After taking a copy for ourselves we handed the letter over to our GP who organised everything. I would suggest getting hold of the hospital who carried out the SCT or talk to your GP about the schedule. My husband had the first vaccinations and COVID jabs carried out at home by the community nurse as he was too vulnerable and at risk (as I suspect you might still be). After the first six months following the SCT he had all the rest of his vaccinations carried out at our GP surgery as they know him well and we trust them to give him the correct doses at the correct times. I hope you get the support you need, because it is quite complicated. Hope this helps, Marion

[maidmarionParticipant]

Hi Lottie,

My husband had his SCT 17 months ago and was told three months later he was in good partial remission with unquantifiable paraproteins, they have remained the same since. We see some changes in his blood tests but definitely nothing significant for us to worry about and they still remain in the ‘normal’ range. He has been on Lenalidomide maintenance for a year now. I hope you find some reassurance that not everyone achieves full remission, but this doesn’t mean the paraproteins are all lurking in the background ready to spring into action again. Big hugs and onwards and upwards 🤗

[maidmarionParticipant]

Hi Lizb,

I understand completely how you feel, there really is a constant worry when looking after someone with MM isn’t there? Could I suggest you talk to one of the specialist nurses, perhaps book a call in with one of the nurses on this website, just to see if they have any advice that would be useful. Or, alternatively, if you have an HR Department in the University perhaps you could talk with them as they might back you up and offer support in talking to your Manager. I don’t know if either option is feasible, but it just struck me what a difficult situation you are in. We were lucky in that we own our own business and my son and daughter-in-law were already actively involved in taking over, allowing me to retire. So when my husband was diagnosed and needed support I was able to stay at home with him, keeping him safe from viruses and bugs. Hopefully you get some help and you can follow your heart in looking after your husband as you’d like to. Big hugs to you, Marion xx

[maidmarionParticipant]

Hi Emma,

So sorry to hear your story. When my husband was being tested we were really lucky that our GP was on the phone to us straight away within a few days giving us the results. I wonder if that would be a route you could try, you might get the answer quicker. Perhaps you could email your doctor telling him/her how you can’t sleep etc? Just a thought……

I really hope the answer comes back negative. Big hugs and fingers and toes crossed for you. Marion xx

[maidmarionParticipant]

Hi Jolly Notherner!

So sorry to hear of the pain and discomfort you are in, I fully sympathise as my husband was in a very similar situation at the end of 2020. He was in incredible pain and couldn’t pull himself out of the chair unaided, eventually was diagnosed with MM and an MRI, X-rays etc. revealed four broken vertebrae, complete compression throughout his spine and a lesion on his pelvis. His MM is in his ribs, spine, pelvis and thigh bones.

Following a year of treatment, which consisted of six cycles of VTD and a stem cell transplant he is now able to walk for miles (sometimes I have to tell him to slow down as I can’t keep up with him). He still suffers pain but it is greatly reduced and under control with medication (Zomorph, Oramorph and paracetamol) which he takes regularly and he is now able to cope. We are taking lots and lots of walking holidays and planning more trips away, just recently came back from the Cotswolds and are now on the edge of The South Downs in Sussex. Good luck in the coming year, it does need some strength to get through but hopefully you will think it is all worth it, just like my husband does. Big hugs xx

• This reply was modified 2 years, 4 months ago by  maidmarion.

[maidmarionParticipant]

Hi everyone! My husband, who has MM, went down with the Delta version of COVID whilst in hospital and it affected him badly – he’s still struggling with his breathing 15 months later. Personally, I believe catching any virus and the recovery would depend on where you are in your treatment and the levels of your immune system (as suggested above). We feel more confident now that he would be able to fight off infections easier than when he caught Covid, having had chemo and an SCT, plus full vaccinations. Optimism! It’s encouraging to hear that some of you have contracted the virus and not suffered too badly, makes the whole thing seem less scary!

We’re being cautious as he’s on maintenance and so his immune system is affected, but not as bad as before. We always wear masks still when out and about amongst people, but we are determined to enjoy life as much as we can and not have that awful paranoia feeling around us all the time.

[maidmarionParticipant]

Interesting indeed Lili as my husband was on VTD for his six cycles prior to SCT and he had a rash over his chest but managed to tolerate and finished the treatment, it was the dexamethasone that caused him the most problems and I was so pleased when he came off them. It’s reassuring when you read the reactions from everyone and realise it’s pretty ‘normal’. Hope your husband’s SCT goes well, where is it due to take place? My husband had his at The Churchill Hospital, Oxford, they were fantastic and looked after him so well. Just as a thought, you might want to make sure he does go on to have maintenance Lenalidomide treatment three months after, my husband wasn’t given it (an error by the Consultant) and only went on six months later. It was worrying, but we’ve been reassured his paraprotein levels are still unquantifiable, so all good.

[maidmarionParticipant]

Hi both! Just read your posts with interest and felt I would like to join in. My husband was diagnosed in November 2020 (a year before you, Peter). Initially, when I realised what the doctors were looking for, I had a terrible panic and felt desperate with fear. So, when he got the diagnosis I wasn’t surprised as I knew what they were going to say. Like you, Lili, I was hyper vigilant and desperate to be by my husband’s side 24/7 but I have also learnt over the months/year to try and get on with life and be as normal as possible. We seemed at one point to be thinking and talking about Myeloma and the treatments non stop, but now fifteen months in with my hubby having completed six cycles of chemo and a stem cell transplant (at the age of 68 too) Myeloma doesn’t fill our days and conversations. We go for walks, stop for coffees, see our grandchildren etc. etc. Peter, there are times when I get moments of panic still when I stop to think too much, but nothing like I did early on. Like your wife I read a lot on the subject because I needed to, even though it was scary, but maybe it’s a process you go through to get your head round it all and then slowly it settles down. I hope you and your wife get plenty of support from friends and family, as well as the GP, as it really does help. I agree with you Lili, sometimes we all need a little bit of extra support from the doctor and there’s nothing wrong if it helps get you through. Big hugs to you both, Marion xx

[maidmarionParticipant]

Hi guys! Thank you so much for your advice about antihistamines, hubby has had them for three days and itching is substantially improved. I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens (think that’s the right word) and that also seems to have helped. Apart from feeling even more tired he’s not had any more side effects from Lenalidomide, so fingers crossed 🤞

[maidmarionParticipant]

Thanks Susan, I’ll contact the hospital and have a word, just to be on the safe side, but that’s really helpful. Appreciate the advice.

[maidmarionParticipant]

This is where having a forum really helps. My husband has just started Lenalidomide (10mg) maintenance on Friday, five days ago. On the third day he complained that his head was incredibly itchy and kept waking him up, it’s become very dry and flaky. Based on what you have all said, I’ll contact the hospital and see if there is anything I can give him or a special shampoo maybe that might help. Thank you guys!

[maidmarionParticipant]

Hi, just read your post and thought I would give you my husband’s experience of low testosterone. He was involved in a motorbike accident six years ago and suffered injuries which affected the production of testosterone. When he saw a Consultant at hospital he was told his levels of 6.5 was extremely low and for his age (65 at the time) the level should be 12-14. The highest amount should be no more than 27 and a young fit man in his prime would normally be around 22-24. My husband was prescribed Nebido injections, which he continues to have. I can always tell when his testosterone is getting too low again as he becomes depressed, negative, very tearful and even more tired (you wouldn’t believe that could be possible with multiple myeloma and the tiredness that causes, but believe me he does). I would be inclined to ask for a second opinion and a referral to a urologist as they might be able to help you.

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