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Although I didn’t have pain when I was diagnosed (I didn’t/don’t have bone lesions), one of my friends who has myeloma was in a wheelchair & in a lot of pain for 6 months after she was diagnosed. For the past 15 years she has regained her mobility, and has been able to lead a full and active life, walking, digging her allotment, driving long distances, frequently going on holiday. Perhaps not climbing, but certainly active.
Now I’m in remission I’d scarcely know that I have myeloma.
Hope your husband is soon feeling better.
Hi Clare, your post took me back to when I was first diagnosed 20 months ago. Went to GP with flu like symptoms and aching ribs, she took bloods and 2 days later I was admitted as a priority, My blood numbers were off the scale, the diagnosis was such a shock. I was on chemo a week later. I had cracked ribs, fractured sternum and didn’t know – during early days of treatment my pain did increase and I struggled to walk BUT they did get on top of it, quite quickly really. I Now take 15 mg slow release Oxycodone Hydrochloride morning and night, with liquid Oxynorm if I experience and break through pain. This works for me and I’m generally pain free, most of the time. I’m due to go in for my Stem Cell Transplant on 7th Sept. it’s been a long time waiting for my Free Light Chains to come down low enough to be ready for SCT – but I was told I shouldn’t have to tolerate pain, so keep nagging until they sort the pain for your husband, I’m sure they will. Good Luck!
To everyone who replied to my post I just wanted to let you know how things are for lee now. Just started 3rd cycle of VTD and in the last three weeks his condition has improved dramatically 😊. His pain is under control, his fatigue is significantly better and mentally he’s back to his old self. Returning to work is now on the horizon. I never thought he would be like this again. At least twice I thought he was dying. Thank you all so much for the advice and support it truly did help me get through the awful first weeks and stopped me from going under. I kept reading the positive things you had all written and held onto everything you all said. Thank you for everything. I keep looking on the site as I find it so
Helpful and if I can ever be of the same support to someone else I will do my best to be as honest and helpful as you have all been for me. 🤗
Thank you for your reply. Delighted you are doing well.
Prof Snowden is thankfully a MM specialist so feel reassured about that. As we live in Sheffield we have access to him and the transplant services. Next consultation is the 10th December. We will find out then what his scores are and fingers crossed they are going to be falling.
Your message once again gives me hope. I had been worried that they might not be able to consider a transplant if the second line of treatment wasn’t working. Thank you again. Have a good weekend Clare
My Sheila was diagnosed in 2014 and had 11 fractured ribs and a collapsed vertebrae. She started with VTD and after two months had a kyphoplasty in the morning feeling so well walked home at lunchtime! She declined a stem cell and just stayed on thalidomide two years. Relapsed a year and a half ago and had DVD, now just on daratumumab. She runs five miles a day. It will get better.
I cannot tell you how much I appreciated that. Things have been so grim and I’ve struggled for the last few days. That gives me hope
I’d recommend trying to establish a good dialogue with your consultant and specialist nurse. Read up on things – look at the NICE pathway for Myeloma and know what treatments are available and when. Some doctors are brilliant and you can talk to them, ask questions and understand things and ultimately get encouragement. Others do not like it and refer to you in the staff mess as “Dr. Google” – don’t despair, just look elsewhere.
The specialist nurse is your go-to. A good nurse can be an absolute angel when things are difficult. We had brilliant nurses at the Royal Derby Hospital (yes, you, Chris, Sue and Lizzie!). Others unfortunately are like carry on matron – you feel like you are bothering them and you can almost hear the echo as they slam the phone down.
Myeloma is hugely varied, so do not get hung up on things like prognosis – they are historical figures and things have moved on so much. We had a specialist nurse (at another hospital) once say “5 to 8 years” which had Sheila panicking saying “I only have three years left”….. do not start counting the days.
Hello Clare
It’s a long time since your post, but I just wanted to add at diagnosis I had collapse of L3/4/5, was in excruciating pain, couldn’t stand, walk, or get up from a seated position, has stage 2 kidney acute kidney injury, a beta 2 microglobulin of 9.7 and Lambda free light chains of nearly 7000. I was diagnosed with stage III Myeloma. After 4 months of CTD I had an autologous SCT (June 2016) and have been in remission ever since without maintenance. I had vertebroplasty to my spine, the pain diminished after 3-4 months, my back felt strong again. My quality of life has been excellent and long may it continue. I do have my dark days, especially when I have my bloods done, but I thank God for every day he gives me. I hope the same for your husband. Everyone’s journey is unique. God bless.
Hello Clare ,
First of all I hope your husband ,LEE is improving despite the difficult circumstances .
Secondly I would like to apologise for not responding to your post earlier ; this is because I am also a patient at Sheffield rhs .
I am a retired Consultant Physician/Gastroenterologist(Chesterfield but trained at the Hallamshire ) and have had myeloma for over 12 years (6years smouldering and active myeloma since april 2015 ). I ve had two ascts and in June this year started on my fourth treatment of isatuximab pomalidamide and 40mg dexamethasone under the early acccess scheme which is fortunately still available on 02 ward ( bearing in mind a lot of clinical trials elsewhere have been suspended ).
Anemia was the reason for starting my treatment so I consider myself very very fortunate not to have bone pain ( all mris negative so far touch wood) enough about me .
Andrea Foster is the macmillan nurse who supervises outpatients on A floor clinic but I would guess your husband has had telephone outpatient consultations ?
However with no disrespect youve discovered this forum which is the best source of the imformation that you were looking for and more importantly ,despite being medically trained like me, you and especially your husband have felt nobody really understands and you feel alone . Well I am sure I speak for many on this forum who felt the very same but found comfort on this forum which is why it exists .
Myeloma is very heterogenous entity and every case is different however subtle that difference . in the last 12 years many treatments have been developed and the outlook has improved year on year . so it a matter of being exposed to the drugs which is best for your myeloma . In my case ive just got of the last chance saloon I hope , but this is the first time I have had triple therapy . Your husband has started on a triple regime .and will be given maintenance after asct ( I think) which is of known benefit.
Of course the covid crisis/infection control in hospitals/ vaccination response are ongoing big issues but infection control was an issue before covid, given the emergence of resistant bacteria and lack of new blockbuster anti biotics . so shielding might be required long term
best wishes michael
Thank you for your lovely message. Lee has deteriorated rapidly and was discharged home last week for end of life care at home. He is now unconscious and I hope will be taking his final walk to stannage soon. This forum has helped me so much during the last 7 months. Lee was dealt a bad hand and fought as hard as he could but his fight is almost over. I hope you all continue to do well. And thank you.
Clare
Dear Clare ,
I am sure I speak for many on this forum . You and Lee are in our thoughts .
michael ashton
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