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
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
Hello
Just thought I would say hi and say how sorry I am that you have had to seek out this forum on your husband’s behalf. I was diagnosed in 2018 and it is a terrible shock to deal with. There are so many appointments and just so much to cope with.
I too had spinal damage and wore a back brace for about four months. I cant say its very pleasant but you do get used to it. Most importantly it worked and one day I was able to throw it away! I hope your husband finds that the pain diminishes quite quickly as he progresses on with the chemo. If its any help at all as i understand it the staging in myeloma is not so important. You were braver than me I never asked!
Im not sure if you have come across a blog by a chap called Ian Crisp. I stumbled across it a while ago. I’m pretty sure he hasnt had a STC at all. He writes about his everyday activities and he puts me to shame quite honestly! He always seems to be very busy.
I guess what I trying to say is that things do get better. Its a long and winding road the myeloma journey. Trestment has come on tremendously. I find it helps to consider it a long term chronic condition that can be managed.
I wish you both the very best
Sue
H
Hello Ros
I was fitted with a back brace at Stanmore in 2018 . I had been diagnosed with a plasmacytoma in a vertebrae and then a couple of small lesions were discovered in my sternum and clavicle.
They’re a great team there but I have to be honest I was very upset to find that I needed to wear such a thing! If you are having the same kind I did you are wrapped in bandages and plaster to form the mould and then choose a colour/pattern to have it made in! Dont be afraid to speak up if you feel distressed or anxious. The original design for mine came right up to my chin and I just said “No I cannot wear this!”They were able to make a few changes and it ended up more of a corset shape.
I wouldn’t say it was an easy few months and it took quite a while for me to get used to it.
The very good news is that it worked! I have no pain in my back at all. New bone has grown to “fill the gap” so to speak and I have forgotten all about it now.
Just count down the days and in the end the great day comes when you get to chuck it in the dustbin!
I wish you all the very best for tomorrow and the coming weeks.
One tip is to get some long handled grippers for picking things up off the floor!!
Good luck
Sue
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
Hello
This is an interesting suggestion. I have never kept my myeloma a secret as such. I will discuss it quite openly but to identify myself by wearing a badge or lanyard for example would be a step too far for me personally.
After six months of induction I could convince myself I didnt look or feel much different to the casual observer. However losing my hair during STC I found pretty difficult. Then I really felt like a cancer patient and looked like one too. Im sure everyone knows what I mean by the smiles and pitying looks. The “head on one side” with the “How are you?”. All well meant of course, but infuriating at times!
I am extremely interested to read of Rebecca’s experience of lockdown and the “new normal”. Im sure she’s right. The general public untouched by shielding or covid have clearly had enough. You only have to see the pictures of protests a d beaches to see that.
Its largely down to us to decide what risks we take on an individual basis I think.
I count myself very fortunate that I dont have to make decisions about work or sending children back to school.
Proceed with caution I think is best.
Remember shielding has only been “paused” I noted!
Best wishes to all
Sue
Dear Neil
Thanks for your reply. Its made me feel much cheerier! You’re right of
course that provided we are careful and use common sense then all should be well.
After all as you say who is better equipped than those of us who have experienced neutropenia! Our families are clued up on all that too.
Was just feeling down in the dumps this week as we had to cancel a long awaited family holiday to North Devon. Mind you looking at the weather forecast for this week we most definitely would not be swimming!
Glad you were able to celebrate your birthday with fish and chips. I bet they were delicious!
All the best
Sue
Hello Rachel
Hope you are well. Your post rang bells for me. Like you I do not feel like a particularly vulnerable person and finding ourselves on this list is very difficult. Particularly when I see my very elderly neighbours in their late eighties going out and about and having quite a lot of visitors too! It brings the disease too close to me at a time when I was hoping just for a while to be able to push it away from me. Like you I was hoping that this was a time for getting on and doing some fun things not hiding away indoors. I did enough of that over the last two years having treatment and STC.
I’m sorry that you find yourself in such an awkward position too. When you’ve made the decision to go ahead with STC you just want to get on with it!
There is always this nagging feeling that you allude to in the phrase “time limiting”. We dont want to waste any of our precious time!
As you say there is so much loss and sadness at the moment. It’s hard to feel very optimistic for the future of everyone young and old.
Best wishes to you
Sue
Hello David
Thank you for posting the details of your latest treatment and I am so pleased to hear that you have had such a good outcome.
I don’t post very often but yours is a name I recognise from visiting the site over the past couple of years since I was first diagnosed. You always offer such sound and positive advice.
I think I first read the phrase “Its a marathon not a sprint!” in one of your posts and you were quite right! That is exactly what it is!
It is interesting to hear from someone who is going through treatment in this new Corona world and good to learn that it seems business as usual!
Good luck at your appointment next week. It would be most informative if you have the time to let us know how that goes and if it’s not too nosey to hear how you make your decision.
Best wishes
Sue
Hello
My husband and I were having this same conversation this morning. I was diagnosed two years ago and am now on watch and wait following STC last February.
I was pretty shocked to discover that myeloma patients are at greater risk whatever stage we’re at whether having treatment or not!
He decided like you to stop working and stay at home for the 12 weeks. We are halfway through I think now, but the situation is still so dreadful isn’t it? What is going to change for us? So many unknowns. He feels like you I think . How to resume working safely but still come back home.The guidance I’ve read just sounds impossible to social distance inside the house! To eat separately etc etc! It’s just ridiculous to be honest. I suppose we will just have to decide for ourselves in the end what risks we take. At some point at some time we are all going to need to attend hospitals or dentists for example. Obviously your job puts you right in the front line doesn’t it? I salute you for the work you do in such an underfunded and overlooked part of society. Keep well and keep safe. Hopefully one day soon things will improve.
Best wishes
Sue
Good Evening I was very glad to find this discussion going on. Ever since myeloma was flagged up specifically by Chris Whitty at that press conference before this lockdown my heart sank and has stayed there. Like Greg says I don’t understand the science at all!
Can only hope that as time goes on we all get more specific guidance from our medical teams but my guess is they will understandably err on the side of caution!
Maybe we will just have to weigh everything up as time goes on and make our own decisions as to the level of risk we’re prepared to take? How can we socially distance or shield from partners and children who will need to return to some kind of normal life for months and months?
I suppose when it comes to it we will just have to summon up the strength we’ve all found time and time again and carry on!
Best wishes to all
Sue
Hello Zoe My goodness your head must be spinning! Do you have someone to go along with you to the haematologist? There is often a lot to take in and it helps if someone else hears it too! Glod that your appointment has come round quite quickly so you can hopefully get some answers soon. Wishing you the very best. Suex
Hello again! Ouch a fractured shoulder sounds extremely painful. Glad that you have started Zometa. I was at the RNOH last week and the consultant there was telling me how important it is. He said with an ageing population everyone would benefit from it!
You’re right that the SCT was very daunting and I certainly wondered if I really wanted to do it or could it be postponed. I had read that there were trials in the very hospital UCH where I would be having the transplant that was looking at putting newly diagnosed MM patients on maintenance treatment at the end of induction and keeping SCT in reserve so to speak. I was told that the advice atm is still to proceed straight on to the transplant to consolidate the treatment. So I did! I was in hospital for three weeks and it was hard going at times but luckily I didn’t pick up any infections. I have been home now since 13 March and am very slowly getting back to some kind of new normal I suppose!
You have loads of tests prior to the transplant process so that they know exactly what your levels are etc and they test your heart and kidney function to make sure you will be ok to go ahead!
Good luck with the treatment for now. Best taken day by day and week by week and cross the bridges as they come! Sue
M
Hello Rosary
When I was first diagnosed it was thought that I had a solitary plasmacytoma that had caused the vertebrae to collapse and would require some radiotherapy only and then monitoring after that. A PET scan showed up two very small lesions which then altered my treatment plan completely. I was on VTD and was told that would be for six months and then referral for stem cell transplant if I wished to go that route. I also had monthly Zometa infusion which I think has really helped heal and prevent further bone damage. Have they mentioned this for you? I must admit I never asked about the stage I was at! Think I was strangely relieved to get an answer for the horrible pain in my back and ribs even though it came as a dreadful shock to be diagnosed with MM. I hope your back is not too painful. If I remember the pain subsided pretty quickly once treatment started. I wish you the best of luck going forward. Sue
Hi Susie have just joined the forum having lurked here for about a year and got a lot of good advice from the posts. I’m sorry to read that you feel so down atm and that you have found your hospital so unsupportive now. It is a long road that we myeloma patients are on and at times you can feel very isolated. I don’t know about you but I have never met another myeloma patient even though the last year has been a never ending round of hospital appointments and clinics. Are you at a very large hospital? Why did they give you an appointment for Zometa and then turn you away? Sounds very thoughtless of them. Its It’s difficult too I think if you keep seeing different doctors and can’t build a relationship over time. Sorry that I can’t offer much practical help but do sympathise! Do they have Macmillan nurses at your hospital. They have a great reputation for getting in front of consultants and getting answers apparently! Good luck with your on going treatment. Keep on keeping on Sue
