[piatkazParticipant]

Hi
Just had the results from my MRI and it said I had innumeral lessions on the spine has anyone else experienced this a bit scared now

Ian

[eveParticipant]

Hi Ian

My husband Slim,when first diagnosed had his whole spine effected with Myeloma,plus other parts of his body shoulder blades and skull,it sounds worst than it is,Slim has been on Zometa since March 2011 and it has helped,as for pain,only he can say,I know some times his whole body looks less flexible .

Slim,s had 3 different chemo,s plus SCT,hardly any remission,so different from you,my own personal opinion is Myeloma patients should have a MRI scan,plus full body x rays every year!!!!because the Myeloma evolves,as in Slims case his is only detectable by a BMB,one time he was thought to be in remission after 6 cycles of CDT only to find after BMB it had increased to 80 percent in bones,and he felt so well!!!!
Hope this gives you some help,no Myeloma is the same. Eve

[piatkazParticipant]

Hi Eve
Thanks for the reply when I got the results from the MRI it did frighten me but thats what paranoia does to you with this illness any aches or bad results I think the worse even though I am a very positive person and your right MM effects people in different ways.Your right about the MRI's it took 6 weeks to get an appointment to get the MRI when I'd been asking for one for months you know when there's something not quite right wth your body I've had this illness for nearly 6 yrs.
Saw the specialist today and as the Rev isnt working there going to put me on Bendamustine but have to see my consultant in Birmingham to confirm this.
Many thanks Ian

[eveParticipant]

Hi Ian

There are new trials,if you go into trials on here,it should tell you if any are local to you,if you cannot find them contact Ellen,she should be able to help.

Six weeks for appointment,and asking for MRI for months,not good,do you see a consultant every time or a registra ,what have your bloods been showing plus Kappa Lightchains!!!! Who ever arranged your MRI should have marked it urgent.it takes time for the damage you are describing ,so the Revilimid has not been working for some time,do they give you any results ,for example blood test!!!.
I would be going in with a list of questions to find out why,it has not been picked up earlier, Slim is on Revilimid 4 cycle his best cycle is the last one,but no matter what they think,he will be having a BMB just to make sure it is reducing in the Bone Marrow,we have been here before with Thalidomide ,I take the attitude prove me wrong !!!!,I have learnt from earlier experiences to stand my ground,the only thing I have not got for Slim is a PET scan,but as they say it will not show what is going on in the Bone Marrow!!! Eve

[piatkazParticipant]

I have been on Rev for 5 cycles and it never worked and the light chains started creeping up each time then started jumping the last 2 cycles they added cyclophosphamide and my light chains reached 1500,I see a specialist everytime I go and receive blood test results.Hope Slims well.
Ian

[eveParticipant]

Hi Ian

Slims been on CDR for all cycles but reduced Dex as he ended up with pneumonia on Thalidomide ,which caused blood clots plus damage to lungs,The Revilimid caused a Artery blockage from thigh to knee ,so I really do watch him carefully,

Look at the trials being offered it is for people who are running out of options,just sorry. Keith who died this year is not around to try them,he fought so hard,but should help Dai. Eve

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