[AnnaParticipant]

This is the first time l have used this forum I had muli myeloma diagnosed in 2012 after I had to have an emergency back operation with collapsed T10 vertebrae I now have rods and screws in my back which was a success. I had CTD treatment and stem cell treatment. I had myeloma diagnosed again in January after remission for 9 months I am now on Velcade,Dexmethasone and cyclophosphamine. I am to have 8 cycles I am on cycle 4 Ian suffering from fatigue, anxiety and bloated stomach on some days today is a good day. Anyone can advice me on the bloated tummy I am not suffering from constipation?
Thanks Anna

[davidbrParticipant]

Hi Anne

Slightly off topic from your post but I am interested in your back OP. I was diagnosed in May 2013 and had my SCT in Dec 2013. I was told I was in complete remission by my consultant recently so am currently not on any treatment. I have 2 crushed vertebrae which I am seeing a consultant about next Monday so will have to decide if I want to have them fixed.

If you could let me know more about your back OP I would very much appreciate it. Like how long where you in hospital, how long to recover, and questions I should ask and things to be aware of. Why did you decide to have it done. Mine is very painful day to day and I am really suffering at the moment. Co-codomal take it off but I don’t take them as they make me constipated. Did you consider pain management such as patches.

Any advice you can pass on would be great and I thank you for reading my reply.

Best Regards and wishing you well David

[AnnaParticipant]

Hi David
My story is different to yours as I was suffering with back pain for a couple of months. I kept going back to my G.P. who told me it was musclar and kept giving me pain killers. Eventually I decided to pay for an MRI the referral had to go through my GP. I had the MRI on the 24th October 2012. The next day my GP came to my home to give us the devastating news I had to go for an emergency back operation to Kings College hospital. Up to this time other then my back I had been very healthy avoid taking tablets and had only been to hospital once. The MRI showed ‘extensive infiltration of the vertebral column plates at several levels and collapse at T10 with consequent spinal cord compression and partial collapse at L5′. I had an emergency operation a pedicle screw fixation from T8 to L1 and a t10 laminectomy’. I found out I had myeloma a week later. I stayed in Kings for a week I had morphine which did cause constipation I had pessaries and laxative which helped! Looking back now to be free from pain is fantastic I occasionally take paracetamol for pain. After the operation when I came home I had to sit in a armchair with back support, I used a wheel chair when I went out then a walking stick. Now I can walk normally the only change is I can’t sit on chairs with wooden backs or lie flat on the floor as I can feel the screws digging into me. I sent x-Rays of my back with my claim to get disability living allowance and was able to get a mobility car and a blue badge which was a bonus with all my hospital appointments. I find my back stiff in cold weather I went to India at Christmas my back was fantastic in the warmer climate. i hope my story this helps you make up your mind.

[davidbrParticipant]

Hi Anna

Thanks for your reply.

I like you had back pain and the first doctor gave me an exercise sheet and said take some paracetamol. The 2nd doctor asked me if I wanted a “sickie note” and gave me naproxine which gave me kidney failure. Fortunately the 3rd doctor a locum was on the ball and realised I might have Myeloma. After an x-Ray which showed my 2 crushed vertebra I was diagnosed with MM.

I was told by the back specialist there was nothing he could do until I had the MM under control. Hence the 2 year wait till now before I talk to someone about having my back fixed.

Once again thank you for you reply it has been very helpful and I wish you all the best.

David

[Kazzam2Participant]

Hi Anna and David, sorry to but in, I have not been on much recently, I find this site friendly and useful, but my myeloma came out of the cupboard recently, first relapses after SCT, so a bit shocked as greedy me expected longer

I hope you are both doing as well as can be expected.

Just an observation, an awful lot of people end up diagnosed by locum/duty doctor. I was going to my own GP for approx 4 years, he kept upping painkillers, physio etc, he once referred to me as a ‘fit’50 year old! A few months later, in his abscence, I seen a dot doctor, in horrendous back pain, within a few minutes of seeing me, she ordered am emergency X-ray and urgent blood tests, long story short, she saved my life.

Sorry got carried away, best wishes

Karen. 😠🐱

[davidbrParticipant]

Hi Karen / Anne.

Anne did you get any answers to your bloated stomach? My Stomach is very bloated at present, seems more food is going in than coming out. I try not to take co-codimal no more than 2 a day so am not sure if the bloating is caused by pain killers or MM.

Karen glad to hear you finally got diagnosed can’t belive it took 4 years you must be very tollerent/ paitent.

Just want to say how I am getting on. Went to back speciallist and she said I didn’t need any treatment for my crushed vertabrae. I was very pleased at the time as I didn’t want surgery. She said she would refer me to my local pain clinic.

Having thought about it I am a bit surprised i am not having the crushed vertabrae fixed. As I am 1.5″ shorter and my waist is 2″ bigger, I have problems breathing due to small chest cavity, and have had various levels of pain over the last 2 years. walking is difficlt and I walk with a sideways stoop as I can’t stand straight. I find it difficult to find a sleep position due to pain etc. etc. etc.

Best Regards and wish you both well. David

[Kazzam2Participant]

Hi David,

Thanks for your best wishes, just re read my post, i was not very clear, it took 4 years to be diagnosed, which was nearly 3 years ago, I am on my first relapse after various treatmeats, Thalidomide, SCT, Vertbroplasty (for crushed vertabrae, I lost 3 inches in height), But they said I will always have pain, hence the Zomorph. Constipation, and bloated tummy is the norm (oh the joys.

I would try and get a 2nd opinion if I were you about back op (we had to go private to avoid waiting list), it has helped. Have you ever been given a brace? Very uncomfortable.

Best wishes and regards and good luck, keep us posted.

Karen

[davidbrParticipant]

Karen

Thanks for your thoughts I think you are right and I will speak to my GP about a 2nd opinion.

David

[davidbrParticipant]

Karen

Sorry to be a pain but just breifly how did your Vertbroplasty go. What did they do was it just one day in hospital? If you are busy no problem and thanks anyway.

David

[Kazzam2Participant]

Hi David,

Thanks for your reply.

About my Vertbroplasty, it went well, though the surgeon/consultant, said it was a challenge! I admit to being very nervous, but I was knocked out, thankfully as lying on my tummy was very uncomfatable. I came round bout 3 hours later, they gave me lunch and painkillers, though I do not remember any pain. I had my own lovely room, actually would be nice to stay in, my husband brought me home about an hour after. I cannot believe I ate my lunch! I returned a week later(check up)and was treated to footage of the operation!! Hubby is a bit squeamish so diverted his eye! Amazing really, I would highly reccomend Rennie Winston, ( never quite sure if that name is other way round), I first met him when I was in hosptital, he does NHS and private. I also (as part of it)had 8 physio seesions at the private hospital, it was quite helpul, I have no regrets, I still have a bit of curviture, but my posture and pain is a lot better.

I forgot to mention, I was originally booked for 2 operations a month apart, because the can only do 2 or 3 vertabrae each time, however when I went for check up, he said I would not benefit from 2nd op. I wish I had asked more questions, like ‘why’ etc.

oh sorry, you said briefly! Got carried away, sometime feels like I am telling somebody else’s story. Hope this helps, i intend on getting on here more, as it is a lovely helpful and friendly site, most myeloma sites are American I find.

If you need anymore info, you are welcome anytime,

kind regards

Karen

[Kazzam2Participant]

ps, sorry David, I sent without checking spelling etc!

Karen

[davidbrParticipant]

Karen

That is brilliant thanks for letting me know and the more detail the bettr. I find it helps to discuss things with other MM suffers and you have help me thanks.

Just wondering why surgeon said you did’nt need the 2nd Op.

David

[Kazzam2Participant]

David,

Glad to be of help, I agree, it really does help discussing with other MM sufferers.

I often wonder that, was it because it was not as bad as first thought, or there was not enough benefit to be gained to make it worth it. I am putting it on my list of questions for my consultant, she will have had a report off him, I see her next Tuesday, after starting cycle 4 of Velcade :-/

Take care

Karen

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