This topic contains 95 replies, has 23 voices, and was last updated by 
Perkymite 11 years, 3 months ago.
Ann
As you can see a huge support on this site….wishing you all the best with your treatment 🙂 Colin has never said why me but it does make you wonder, but then why anyone. You and your husband have had a tough time, so you ae due some good times now!
Ann and Pete, glad you guys are doing well. Hope Peter is making a slow but sure recovery!
Peter, we are not so active now by any means! We don't go far at all, at the moment Colin is less tired but has reduced his back medication due to the advice of pain specialist (getting off morphing based tablets), but now his back is going into spasm. If its not one thing it's another. At least the sun is shinning!
Vicki and Colin x
Hi Jan
Many thanks for getting in touch with me.
After reading your story, do you think that your vertebraes collaped durning your sleep? I remember, turning over one night and my intire ribs cage felt really strange, a few months after that while in hospital they told me I had two broken ribs.
It is strange how things take a sudden turn , one minute you are ok and the next you receive the news that you have Myeloma. I had never even heard of Myeloma.
It really must have been a real shock for you, especially running your own business, you have all that extra worry. Have they done anything about your vertebraes?
Keep well
Ann
Xx
Hi Ann
I had 6 x 3 week cycles of CDT
This caused me little or no problems , loved the steroids , great energy boosters, the one down day after them was worth it
I finished CDT mid Nov ,but as I didn't want my SCT until after Christmas plus my wife Carole had one of those birthdays with a zero, so had some thalidomide to keep the little b— r at bay. My stem cell harvest was also no problem
My pp level at start of SCT was 42 & at finish was 3
Went for SCT mid Jan , in for sixteen days of which say ten were not that nice , most people have much the same post SCT problems , but all doable
Still get a bit tired , sense of taste not quite back , left me very weak but getting to grips with that & back doing some work , including my share of the domestics !
But who cares re the suffering , six weeks after my escape I was declared in full remission , with not a trace of the dreaded pp
Work on the theory no gain without some pain , then be totally positive
Vicki & Colin
Don't mention back pain , I have got the most repaired read end in the NW
Patched up with bits of steel , nuts & bolts, very few nurses in south manchester not seen my bare backside under the theatre light , usually see the scars , then say hello Peter how are you, even Wife had minor spinal op last year , we get two for price of one , had epidural just before SCT which helped , now ready for another
Us men were born to suffer
Lovely day today , gardening & a jog ( little liar ) at Blackpool
Peter
Hello Ann, so sorry to hear your news, yes its hard to believe how quickly this illness comes on, my Mum has MM and has bone damage, she is on oxynorm as she was sensitive to morphine but there has been no mention of help for her damaged vertebrae. We also knew nothing about MM until 6 weeks ago and this has been a fast learning curve but still have lots of questions however i guess that overtime we will learn how to manage and it helps to talk to the lovely people on here, lots of good wishes to you and your husband,
San xxx
Hi Ann
Yes, my vertebrae collapsed whilst I was asleep but I didn't feel a thing until I woke up. I lost 3" in height and as a result have a hump in the top of my back. It took me ages to get used of my reduced height. I've shrunk to 5'1" and my one son is 6'2" – he now looks so tall next to me. Like you, I went to A&E the week prior to my back problems complaining about severe chest pains, but was told it was probably just wind! So yes, you might have broken your ribs whilst asleep.
I was offered vertebroplasty treatment after my SCT which aims to restore any lost height by inflating a balloon inside the fracture and filling the balloon with bone cement. However, I felt so tired for months and months after the SCT that I couldn't face returning to hospital for an operation.
Due to the back problems, it took me 18 months before I could turn or sleep on my side in bed and I still can't sleep on my front. My consultant prescribed fentanyl 50 mcg pain patches which provide constant pain relief for three days at a time and at least these manage to dull the pain. I also take daily tramadol pain tablets. I think the fractures slowly healed themselves over 18 months and the back pain has been much better after a year of Zometa infusions.
I had to give up my business because of my lack of mobility, bone pain, fatigue and not being able to lift items without severe pain. Like you, I had never heard of myeloma before my diagnosis, but all of our family lives have changed considerably since treatment. I am not as active and become tired very easily. However at least there is treatment available to help control the cancer with hope for more effective drugs in the UK in the near future.
Jan
Hello San
Nice to hear from you.
It appears that your mother and I were more or less diagnosed roughy the same time.
My consultant knew of my damaged vertebrae as he showed me the X-ray on his computer, the only suggestion he offered was to see if radiotherapy would be needed to help with the pain. But in the mean time I had to go to hospital with pains and was kept in for four days, it was the consultant on the ward that sorted out the appoiment for me to see the "bone doctor. After seeing the bone doctor, she suggested to get an MRI scan done to see the what damage had been done. I went last Thursday for an MRI scan in Taunton hospital as suggested , so I am just waiting for the results now.
There are still lots of questions I need to ask, but I guess this will come in time.
Keep in touch and let me know how things are going.
DID YOU KNOW……that you can get an exempt form from your doctors for all your prescriptions so you will never have to pay ? I did not know that and was never offered it, I only knew because my husband had cancer last year and there was a notice on a wall board in his hospital.
Ann xx
Hi Tom
Thank you for your well wishes.
So glad things are working out for you.
What I do not understand is why do you have to wait for the SCT after completing CTD? I thought if all went well they would do that straight away, or am I missing something?
It is nice to know that you can get to a point where your are drug free, I have never been a fan of taking any drugs, then all of a sudden you have to take a pot full of them….
All the best to you
Ann
Xx
Hi Vicki and Colin
Yes there has been lots of people sending me messages, which is really nice.
As to the " why me" statement I made, please do not think I was being selfish by that, as I believe that you just have to get on with what ever life throws at you, I do not feel sorry for my self, as there are many people worse off than me. But one thing I now know and that is to enjoy every day from now on, and not to take everything for granted.
I actually went clothes shopping today for about 1.5 hours, my sons girlfriend drove me as I am not driving at the moment, it was really nice, as you say the sun was shinning, it was nice to get out of the house for once to be honest.
Best wishes to you both
Ann
Xx
Hi Ann,
Welcome to the forum, I am genuinely sorry you had cause to seek us out but now that you are here I am sure you will find us supportive and willing to share the sum of our experiences. The first thing I should say is that you will never be guilty of the act of 'it's just me'… I assure you that will never be the case. Big things, small things, triumphs and small disasters, we have all been there before you and suffered the seemingly dire embarrassments caused by the side-effects of this illness… usually most often as a result of treatments and medicines rather than the disease itself. :-/
I hope that Yeovil has an experienced haematology team to guide and support you through the different stages of MM. There are a couple of regulars here who are treated at Taunton but I have not heard of anyone attending Yeovil in the past 4 years on this forum… so I wish you well at the hospital. 🙂
I am receiving my treatment at the City Hospital, Nottingham, with first-class facilities and a dedicated Day-Case Unit with 2 wards above for Haematology patients only. Saying that I have heard wonderful reports from General Hospitals with small haematology teams, so I wouldn't worry about the facilities too much… I'd rather have a dedicated team of medics any day over bright and shiny facilities. 😉
I came to Nottingham from Pembrokeshire in search of treatment and I can't complain too much but I used to teach at Yeovil College and lived at Norton-sub-Hambdon… (1988-92) a very happy time of my life and I absolutely loved the area. 😎
Remember, it's never a case of 'it's only me'… ask away and get the benefit of our experience… some way down the line, others just days or weeks ahead of you. Between us we should be able to offer practical advice about processes, procedures, treatments and medicines, domestic and life-lines affected directly and indirectly by MM – as well as offering a sympathetic listening ear for small woes or big rants. 🙂
Regards
Dai.
Hi Ann.
Welcome to the forum sorry that you've had to join us.
I was diagnosed after 18 months of back pain. It first presented itself whilst training for the London marathon 2010 I was finally diagnosed Oct 2011 – 3 days before our wedding.
We returned from a short honeymoon to our first meeting with our consultant to be told myeloma is not cure able but is very treatable. Unfortunately my myeloma has been very reluctant to play ball and I have been through all the standard treatments with little or no success. I've now been on RCD for over a year and thankfully it is having some success in damping down the myeloma.
I also have extensive spine damage and have lost 3 inches in height I am scheduled to have an operation, kyphoplasty, on my back in June.
Good luck with your journey with this awful disease you will soon learn that everyone's journey is different.
You will find this forum very friendly with lots of very useful advice and many shoulders to cry on if you ever feel the need.
Once again good luck.
Every day is a gift
Andy & Steph xx
Hi Ann
So sorry to have to welcome you to the Forum. As everyone has said, everyone's MM journey is different. If your blood shows Paraprotein, the level of PP at diagnosis, and the rate at which the readings rise will influence decisions about treatment regime. It might be useful to speak Myeloma UK Specialist Nurse with your specific questions.
All best wishes.
Mavis
Well, there's not a lot for me to add except welcome to a very exclusive club, membership criteria is high, if I remember rightly there's only about 4000 new members a year to the Myeloma Club in the UK and not all are on this website.
Think I'll begin the overseas branch.
Anyway, if nothing else, it is good to talk and there is a sense of support from the site. Get ready for a rough ride – maybe not as good as Alton Towers though but with equally as many scary moments.
Richard
Hi Peter
Not to good with my replies at the moment, spent the last few days laying on the sofa with no energy at all and sleeping most of the time, maybe it is just the body telling me rest.
Please explain the pp level bit, I seem to be missing information on some stuff, I am going to see the consultant again this Thursday, hopefully to have my first chemo and second treatment of Bisphosphonate. I have just had three weeks of steroids and thalidomide.
I am glad you seem to be ok after all your treatment
Ann
xx
Hi Jan
That must of been so strange to wake up and find your vertebraes broken, and wonder what was going on. As you say you lost height, my son came home the other day from Uni, and he said to me are you getting shorter Mum, not sure if that was because I had not seen him for a few months or I was really shorter due to the Myeloma. I am waiting to see if I can have treatment on my back now, or if I have to wait until after all my cancer treatment.
I am hoping to plan lots of events this year, if things allow. Lots of family stuff, weekends away etc.
I tried to start my own business last year, I design and make bespoke wedding stationery, but have come to realise that people mess you about so much, and now wonder if it is all worth it.
Ann
xx
Good Morning Dai
Many thanks for your reply, I look forward to being on this forum as you say everyone is at different stages and offering plenty of advice. I have much to learn about Myeloma, but each day I learn something different.
I am about 20minutes drive from Yeovil College, so I know it well. The clinic I go to in Yeovil hospital seems to be newish, I think they spent a lot of money on it recently and they have their own clinic with Macmillan, the people are really nice and friendly.
I am sure I will be on this site many times asking questions
All the best
Ann
xx
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