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I am so glad I have found this website.
Knowing others are going through their Myeloma journey and how they are getting through it helps immensely.
My journey started on 4th April when my GP thought I might have a blood clot in my lung as I had extreme pain on one side in my chest/rib area and sent me to have it checked at a local Assessment Centre.
The hospital said they were pretty sure it wasn’t a blood clot but there was something amiss so wanted to continue to do a few more tests etc
They took loads of bloods, CT scan and chest Xray
Chest X ray showed lesions on my ribs but they were still waiting on further blood results.
In the meantime I had a full body MRI scan.
First clinic appointment with a Haematologist who flooded me with information about Myeloma although they haven’t checked the MRI results and a few days ago I have the horrible bone marrow biopsy. From the bloods taken previously I also needed a Zometa infusion which they did after the biopsy. Now on daily Adcal-D3.
My next Haematology appointment is 2nd May where I am assuming all results will be available.
I have one big question which I can’t seem to find the answer to:
Does anyone else have severe bone pain especially in their ribs?
I cant lay on that side in bed and it stops me from using my arm on the right hand side as it sends so much pain to my ribs every time.
Also does anyone else had bone lesions or have I been unlucky with a late diagnosis?
Hello, I also suffer with a lot of pain in chest/ribs I thought I had widespread arthritis and was told last year that was causing the pain all over my body. But after I had bloods done by a different doctor that’s when Haematology got involved and like you flooded me with information and my brain was frazzled. I temper explain to the consultant that my chest hurts but not as in inside of my chest and he nodded his head and said that’s a symptom.
Hi pest84
Thank you for your reply.
Has anyone prescribed anything to help with your chest/ribs?
I see so many people on here who say when they are in remission you would have a job to realise they have Myeloma – I feel this rib pain I have will never go away and even with bone strengtheners the bones will always be very weak.
Hi Squirrel and Pest84
Over 80% of myeloma patients have bone lesions at diagnosis. Bone pain is probably the most frequent diagnosing symptom.
For most patients the bone pain starts to subside to a very significant degree once treatment has started and the cancerous myeloma cells reduce. Although the bone lesions don’t repair with normal bony growth, they do repair with scar tissue and most patients can resume a pretty close to normal life.
One of my friends was in a wheelchair for 6 months after she was diagnosed with MM, but went on to lead a walking group, dig an allotment and do all her own gardening. She’s not currently quite so fit- but is still enjoying life 19 YEARS later!!
Hi Mulberry
Thank you for your reply.
That really gives me a lot more hope on a “quality of life” basis.
I feel so disabled at the moment when only a few years ago I was so active and physically strong.
This has been so hard with the pain in the right hand side ribs. I even asked my husband to swap sides in bed after over 40 years of sleeping on the same side. I am struggling even to do the most mundane things. I can’t carry or lift anything that weighs more than a couple of kgs. It breaks my heart not being able to pick up the Grandkids. We have a large garden and have always grown our own fruit and veg but I just can’t do any of this with the rib pain. Did you friend have or was offered radiotherapy?. I wonder whether I should have it if offered?
I am a very strong positive person usually but this myeloma is quite hard for me to understand at the moment.
I am so pleased for your friend.
Thank you again for your reply
Hi Squirrel
Your post really reminded me of how I felt when I was being diagnosed. It’s such a lengthy process as they piece together all the results in order to give the correct diagnosis.
I had horrible back and rib pain as you describe. Trying to turn over in the night, and get out of bed in the morning was so hard! It was discovered that I had a solitary plasmacytoma in my spine and was given dexamethasone which dealt quickly with the pain. Also I remember being given diazepam from the GP at one point too.
Eventually after a PET scan found some tiny lesions in my sternum I was diagnosed with MM and very quickly began induction treatment followed by STC. All this was 5 years ago now, and I continue to be ok on watch and wait with six monthly bloodtests.
I well remember how challenging this all is and how life changing. I was walking around looking at other people getting on with their lives , and just being in a bubble really!
Please take heart from others on this forum too. Once you know exactly what your consultant plans for your treatment then you will move forward taking it step by step. Wishing you all the best
Sue
Hi Squirrel,
Don’t lose hope that a good level of health and fitness will return, your old gardening habits will have stood you in good stead.
I too was a gardener. I am now a gardener. But I had to take about 2 years out of serious gardening. Although I didn’t have pain, I had dizziness which stopped me from bending down, and fatigue which put paid to any exertion initially. I had a stem cell transplant and afterwards was told to avoid contact with soil, and scratches for a year- very frustrating at the time since I felt pretty well.
However in the years that have followed (I’m now 4 years post transplant) I’ve got back to gardening, and I’ve read it’s very good for the immune system as well as joi de Vivre.
Initially I had feared that myeloma is a downward spiral into ill health, but that is far from the truth. Most of us have rough patches but between them periods when we have good quality of life, and that includes being able to enjoy gardening.
My husband and I made our garden a bit easier to manage by creating more of a wildlife & wildflower area, and my garden certainly isn’t pristine, but I am back to loving it.
In answer to your question about my friend diagnosed 19 years ago, the myeloma treatment protocols have changed so much since she was diagnosed, you would be best to ask your doctor’s opinion about whether you would benefit from radiotherapy.
I hope that you can enjoy being out in your garden during this spring and summer, even if it’s seated with a coffee, rather than with the fork or secateurs.
Hi Sue
Thank you for your message.
I have to admit the rib pain is what causes me the most grief at the moment. I know from an assessment completed in the hospital who did a chest XRay stated I have rib lesions but unsure if there are more elsewhere.
A full body MRI was ordered by my consultant and I am waiting the results on that.
In the meantime I had a bone biopsy which is like everyone else says ‘ was not very pleasant’ and also a Zometa infusion.
I have to wait until 2nd May before I see my consultant again.
Could I be cheeky and ask how old you are? And also did you have the intensive treatment?
Thank you again for replying and I really hope you continue to be OK.
Best wishes
Sandra
Hi Mulberry
Thank you again for the lovely message.
I truly love my garden and find it very hard not being able to tend to it at the moment.
I thank you too for your lovely words some of which did make me smile.
Quality of life has always been the the forefront of my mind and I suppose I just have to be patient.
Wishing you all the best
Sandra (Squirrel)
Hi Squirrel,
My husband was taken to A & E back in 2017, having been suffering from back pain and rib /chest pain for a very long while, Loads of GP appointments send away with painkillers aged (62 ). To cut a long story short he had 7 spinal fractures and a sternum fracture. Six weeks in hospital treatment started straight away, fitted with a spinal brace.
We have a small holding and a very large veg plot poly tunnels etc.
Once the pain was under control morphine ( which he still takes a small dose ) and Oromorph for breakthro pain. He had a Stem Cell transplant in 2018 and remained free from treatment until 2021 when he had a relapse, treatment 2nd line
DVD which he is still on and remains well. The garden is still his passion and with a few tweaks he manages without help.
A few tip’s if you have raised beds, alter them to a good height to save bending, like Mulberry a wildlife area is a wonderful addition and will bring you great joy, take your time you wont think so now but you will get back to a new normal ,we where full of dread and thought we would have to give up the home and land that we had worked so hard for and many tears shed, always have hope ,always except help and look forward to planning each gardening season.Bets wishes
Hi Squirrel
I was 58 when diagnosed and am now 63. I had 6 months of induction treatment which was Dex, Velcade and Thalidomide plus monthly Zometa! Once I got into a routine it was mostly fine. I didnt get too many side effects. This was followed up with an ASCT in February 2019. I had a complete response and am now on “watch and wait” with 6 monthly bloodtests and a follow up telephone appointment with my consultant. However, as I understand it, treatments have moved on rapidly in the time since, and there are lots of new treatments to throw at it!
I know it’s hard to believe at the moment, but life does go back to some kind of normal, and its quite possible to forget about myeloma altogether sometimes.
I actually started gardening during lockdown. I was never particularly interested before, but find it truly rewarding. I have a few aches and pains from time to time, but that’s more to do with arthritis and getting old! I find an electric heatpad very helpful and soothing too.
Hope your appointment on 2nd May gives you some answers and a plan to go forward with.
Best wishes
Sue
Hi Squirrel,
My dad suffered with rib pain for a year before his MM was diagnosed and he had a lot of lesions by time of diagnosis. He was treated with monthly zometa infusions, then they went to three monthly. H also had back pain and hip pain to a lesser extent. For the 7 years of his ‘remission’ period following SCT he barely had any pain at all, in fact it was the return of the bone pain that signified to us the MM was rearing its ugly head again before the blood tests showed it!
Hope your appointment goes well and they can get you on some treatment to help you start feeling better soon xx
Hi derbyshirelass
Thank you so much for your reply.
I too have had a load of GP appointments but only generally over the phone or online as my GP appointments are a rarity now.
I am concerned that my ribs are very delicate but the process to find out exactly what is going on or what you should or shouldn’t do is sparce at the moment. Hence coming on here.
I keep having massive pain in my ribs every so often which then eases off for a bit until the next one. You said your husband was fitted with a spinal brace – does he still have to wear one now?
Thank you for the tips as we also thought we might have to move.
Best wishes to you and your husband.
Hi again suew1960
Thank you for your reply.
I am 64 and was fit and well until about 12-18 months ago.
I struggled with GP’s to get them to listen. I asked for a Vit D test as a lot of my symptons then seems to fit the bill. My GP was horrid and said we don’t just do these tests because someone asks!. She did do it and I was deficient. Makes me wonder if this had a part to play in my condition now!
Your induction treatment sounds the same as I might possibly be given as my Consultant gave me leaflets for Dex, Velcade and Thalidomide. She also gave me another one for Daratumumab (Darzalex) at the same time.
I had Zometa intravenously just after having my bone biopsy and given Adcal-D3 tablets to take twice a day.
I think once I know the plan I might feel a bit more in control.
I am so pleased that your results are positive and hope that it continues to be the case for a long time. Are you still taking any medication now?
Thank you again for replying
Best wishes to you
Sandra(Squirrel)
Hi kh0305
It really helps to know how well others have faired after having the rib pain.
I did have hip and back pain too but the hip pain seems to have gone now.
I still have lower back pain which I have had for a few years but put that down to getting older and overdoing things. Now I know it wasn’t that!
Hoping for a treatment plan from the Consultant soon as all feels like a lot of waiting at the moment.
Sending best wishes to you and your Dad.
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