This topic contains 25 replies, has 10 voices, and was last updated by 
Hello to everyone on this forum. I wanted to ask for advice please. My gorgeous husband was diagnosed with Bence Jones MM 6 weeks ago following admission to A and E with acute chest/sternal pain. He had experienced rib and back pain for approx 3 months and GP thought it was muscular skeletal pain. He had taken flexible retirement 3 weeks earlier aged 59 to enable him to enjoy his very active life which included running/climbing to a very high standard and numerous other activities. To say we were shocked and devastated would not be a lie. And we still are. He is in almost constant agony and barely able to walk due to pain and fatigue. He started VTD treatment 3 weeks ago prior to a STC. I am a Specialist Palliative Care Nurse in community and see many patients with incurable disease but rarely those with MM. We are told his symptoms should get better with treatment but right now I feel very anxious. I have never, in all my 30+ years of nursing seen someone in so much pain and watching him is very difficult. At the weekend in desperation I searched the internet and found this forum and looking through some of the discussions was helpful as it seems many others have experienced similar symptoms. If there is anyone out there who can give me some advice/support/reassurance I would be really grateful. You all sound like amazing human beings who are coping with a very challenging disease in a positive way. Thank you for your time.
Hello Clare
I am now 62 and was diagnosed back in 2006 after months of back pain before a scan lead to diagnosis. I do remember the severity of the pain but like you have been told mine did ease after starting treatment. I have had 2 relapses since then my last treatment finishing in Nov 2019. Al 3 treatments gave me a full remission with about 4 1/2 years between each relapse. I expect at least anther 5 years this time. Since my diagnosis there have been many new treatments developed with many in the pipeline. It seems to be a very individual disease regarding symptoms and treatment. I feel very positive about the future regarding new treatments.
Best wishes to you both
Regards
Kevin
Kevin thank you so much for your response to my post. Hearing how amazingly well you have done gives me hope that this initial phase will indeed improve. My new mantra this week is as Churchill once said “ if you’re going through hell, keep going”. That’s all we can do now and hope that in time we will see an improvement.
Could I ask, did the pain fully subside to allow you to return to something like ‘normal’?
Thank you so much once again and I hope you continue to be well. 😊
Kevin thank you so much for your response to my post. Hearing how amazingly well you have done gives me hope that this initial phase will indeed improve. My new mantra this week is as Churchill once said “ if you’re going through hell, keep going”. That’s all we can do now and hope that in time we will see an improvement.
Could I ask, did the pain fully subside to allow you to return to something like ‘normal’?
Thank you so much once again and I hope you continue to be well. 😊
Hello Clare
I was so sorry to read your post and hear how much your husband is suffering at the moment. I was diagnosed two years ago and like him had VTD followed by STC.
I well remember the shock and despair of those early days. He sounds such an active man! What a horrible blow for you both. I had a collapsed vertebrae and rib and sternum lesions. By diagnosis I did have quite a lot of pain. I can honestly say that the pain did subside quite quickly. I also was referred to Stanmore and was fitted with a back brace to protect my sternum mostly. It was as hot a summer as now and I was in utter despair by that stage. However it worked and one day I got to throw that horrid contraption in the dustbin!
Suppose what Im trying to say is that its a long road and of course, nothing is quite the same but you do get through and out the other side! My life was pretty good til Covid popped up!
I wish you both the very best for the coming weeks and months. Things do get better, and to also quote Churchill KBO
Best wishes Sue
T
Sue thank you so much for your message. It really does help to know that things might get better. Having worked in palliative care for many years I have never seen pain like this and struggle to imagine how things can get better. But reading the positive uplifting but realistic information shared by you amazing people has given me (and Lee) hope. We will KBO!!!!
Hello Clare,
As I remember the pain did ease quite considerably. My main area of disease was my spine and early on had the possibility of some treatment that might have helped. I decided not to but not sure now whether I should have. I still get pain now but not on a regular basis but take medication when required. Apart from when I am on treatment and after my SCT’s I think I function to about 95% of what I would have I am 9 months after finishing my last treatment and now pretty much do what I would normally do. I think there are some things Prior to this I was fit and active and there are some things that I just have to put down to growing older but will never know foe sure. My brain still thinks I am a 20 year old.
Best wishes
Kevin
Once again thank you. It really does give us something to hope for. It’s hard when you’re in the midst of a bad phase. I have told lee about the forum and the wonderful responses. The humour and pragmatism throughout the site does suggest that those with MM really are quite amazing and won’t be beaten. My husband is one of life’s ‘glass half full brigade’ and I know that he will rise again. The thought that one day he might claw back to something near his normal is a wonderful thought. And I shall hold onto that. I would be overjoyed to see him go climbing again. It’s been his passion for 45 years and makes his heart happy, along with me, his daughters, grand daughter, friends and family!!!
Lee also thinks he’s 20!
Hi Clare,
I was sorry to read of your husband’s diagnosis earlier today. i’ve been working all day but it kept popping back into my mind. I’m almost 55 and was diagnosed with MM just over 2 years ago. Like many with MM, I had back pain and a lingering cold tht wouldn’t budge. I was lucky and was diagnosed quite quickly and started on VTD within a few days. The chemo wasn’t much fun, and i had a few more combinations but eventually it came under control and I managed to work throughout this initial period.
I should add tht like your husband I’ve always been fit and healthy – I run/cycle a lot and do yoga everyday too. Not quite rock climbing I accept. I’ve since had an Auto and an Allo ab=nd am currently in remission (MRD-) these things will start to mean a lot to you as your husband progresses through things.
In the last 2 ½ years I’ve taken 6 months off work but have managed to continue to hold down a really demanding job and live my life to the full. I am lucky to have a wonderful marriage, 5 children and 7 grandchildren. My glass is not only half full but it positively brimeth over.
The point is, there’s loads of options available to deal with MM and a positive attitude is highly important – as is a good base of fitness to see you through.
Sending positive vibes in your husband’s direction by the bucket load
Shaun
Shaun thank you. I can’t begin to tell you how much the messages have meant. My husband has asked that I thank all of you for taking the time to respond and how much it helps to know that better things hopefully are round the corner. It’s his first review on Wednesday so we will know if his body has coped with the high doses of treatment he has been given.
Our positivity had almost disappeared after 7 weeks of utter misery but you and others on this forum have given us something to hold onto. Thank you so much.
Hello again. Lee’s first bloods suggest his disease is responding very well to treatment and his beta 2 microglobulins are 2.5, this result means little to me except she says it’s good. The specialist nurse suggested everything is looking good. Sadly lee is looking and feeling worse ( if this is possible). Had RXT to a large deposit in his right hip and ribs yesterday due to severe pain and was due to start 2nd cycle of treatment today but he had a temperature on Wednesday night so they’ve checked his bloods and done a chest X-ray which were ok and given a week of antibiotics. Plan to review next week and hopefully start velcade and dex next Friday. He feels utterly awful. We are hanging in there and refer to your previous messages that say it will improve. I am sorry to bother you all again and I know everyone is different but can you remember when you started to see a chink of light at the end of the tunnel???
Hello Clare
Glad to hear your husband is responding to the treatment. I am afraid I cant remember exactly how long it was before I noticed a difference but think it may have been very gradual. I was on pain killers but can’t be sure how effective they were I certainly remember the excruciating back pain and then at some point during my treatment it had gone. Also I only had to contend with my vertebrae. The glass half full attitude will help as I myself have always assumed I would beat it. Like you I do not understand all the counts (maybe paraproteins a little) and numbers and each time I see my consultant all he needs to tell me is that my bloods are ok. (or not !)
Sorry couldn’t be more help and hope things get better soon.
Best wishes
Kevin
Thank you Kevin once again. Your honesty is incredibly helpful. We have sat and talked today about the events of the last 8 weeks and although lee has significant pain he is taking less painkillers as we are managing differently. Our whole lives have changed and our daily expectations have altered. Cognitively he is his normal self now he is not drowsy due to the analgesia so this is a big positive. We have moved a long way in a short time and are adjusting to a new life. I am grateful he is alive. At his initial diagnosis we were told he had a cancer of unknown primary and we lived for two weeks knowing that his prognosis was likely to be weeks/months. When further tests were undertaken after an MDT and we were told he had a myeloma We felt like we had won the lottery. After that came a whole lot of pain and misery!! But, we remain truly grateful for the fact he has an illness for which there is a ‘treatment’ and we now live forever with uncertainty. But, we can and will gladly live with that. The alternative was truly awful. So, to be pleased/relieved to have MM is not
Something I thought I would ever say! This forum has been truly amazing. When a reply pops up it makes my day. Thank you and I hope you have all had a good day.
Hello Clare,
Reading your posts takes me back to May 2017 when my hubby was an A&E emergency after months of back/ chest pain dozens of GP appointments and all the rest.
His sternum fractured causing him to collapse he had 6 upper spinal fractures and was in hospital for 6 weeks.
Like you I was desperate never heard of MM and joined this forum, got all the help and hand holding that I needed at that very tough time.
Terry has lost 5″ in height and his head has gone forward as a result. We went to Stanmore OH to have a spinal brace fitted and he wore this for 3 months, was in great pain to start , but it got better (take what pain relief you need ). We had to travel to Stanmore by ambulance as he could not get in a car not an easy journey from Wales.!!!!!!
He had a SCT in March 2018 had complete remission and everything crossed remains so.
Terry was told life will never be the same again, we have a small farm and was allways very active and for the time until the SCT and the recovery after he had to have little fitness goals which we ticked off in a book.
Since then LIFE is good, not the same but just as good, we still have the farm he is just as active aches a bit but dont we all, is careful with heavy lifting but is on the go all the time.
We are positive and are thankful for all the advances in treatment.
Hope this helps, I’ve not posted on the forum for a very long time, but your post “got to me” take care of yourself and hubby as well the pain will go away, life will get better.
Stay safe
Ann
Ann I just read this out loud to lee and his immediate response was ‘powerful and uplifting’. I CANNOT explain what all these posts mean to us both. You give us hope. Thank you from the bottom of my heart
You must be logged in to reply to this topic.
