Mike / Steve,
My other half is being seen by Sean Molloy, he is meant to be one of the best, we had to get a fitted body brace as well but for one imminent collapsing vertebrae (doesn’t go up to his neck just above the chest and to the shoulders) – going back on the 26th this month to be re-assessed after 12 weeks of having the brace.
Apparently for anyone living outside of London to get an appointment with Dr Molloy it can take up to 2 years he is very highly reccommended, and if there is any hope of not having an operation he will hold off – we had a few other Dr’s wanting to operate straight away but its the last thing we wanted.
I hope all goes well
Sab’s
Hi,
my partner is newly diagnosed a few months back, he is on the Carfizomb Trial, all i know is that pending on where you are being treated there are are usually a handful of trials taking place, at the UCLH they are do two different trials for newly diagnosed and one for relapsed. I don’t know what makes someone a candidate but have heard of people asking to be put on trials, I guess my other half just ticked all the boxes for age (very young), gender, ethnic background we were put forward for the trial even before we had the full myeloma diagnosis. And I don’t believe you can get the Carfizomb if you are no on a trial if you had it previously, but I guess if you don’t ask you don’t get.
BW
Sabs
That is correct, that’s the trial he is on, but from what i can gather at least at the UCLH there are 10 different trials going on. Usually they sign you up to them straight away but I have heard of a few people asking to be put on certain trials.
Hi Brian,
I believe the only time when you are offered maintenance on the NHS is when you are part of some trial, my significant other is on a trial only cycle two but will either have a sct after the 4th cycle or go onto have a further 4 cycles (randomized as to what group he goes into) and then have 18 months of maintenance. If he was on standard treatment there would be no maintenance option.
That’s reassuring to know annmarie thank you, my other half wont rest up so we have a problem them however he has been told that from next week he will have a monthly IV treatment to help strengthen his bones so fingers crossed.
Hi Emmaj,
I can’t pretend to know what you are going through and I’m afraid I don’t have any answers I have been asking the same questions, my finance is 39 and had back complains for months before anything was done. He has a pending collapse of a vertebra and is walking around currently in a fixed molded body brace, two thirds of one of his main vertebra the bone density has all but gone and is being pinned up literally by a small amount of new bone growth. I was asking the same questions, and though the MM is bad it seems to take a second seat to getting his life back on track and dealing with the MM as it comes with the Chemo.
Yesterday we had our Cycle 2 clinic appointment – while we are dealing with a MM Spinal surgeon who we wont see again till the end of June, but we have hope that he can make a full-ish recovery, while his bones wont be the same as what they were the body does adapt to compensate, I guess you could look at it like having a fracture or break from an accident and you heal, this time around just a little slower and you are a little more fragile. My other half will be starting a drug next week to help strengthen the bones (i believe this to be a once monthly IV drug same time as he has one of his chemo sessions) but they do believe that his vertebra will heal to the point that no brace will be required after X amount of months, and with the chemo working on the MM he should go back to leading a relatively normal life. We then monitor the status of his MM and hope that any signs will be caught before any other damage is done. He is currently refusing to take any pain medication but that is purely his choice – I think he likes to know exactly how he is feeling and when is a good day and when is a bad day so he knows when not to over do it. If he isn’t careful he can cause spinal damage and paralysis so everything for him is touch and go now.
I am truly sorry to hear what happened to you, I guess you start putting things into perspective and just like us over night your world changes – it has been two months now since he got his diagnosis and I cant pretend that life has gone back to normal yet, we are still finding out new things every week – and not necessarily for the good, its definitely a roller coaster ride, which I would love to get off.
But my thoughts are with you at this time and I hope things go well with your treatment. Please keep me updated on how your progress goes, your similarity to my other half is all too familiar if very extreme .
Regards, Sab’s
Thank you annmarie, your husbands situation is sounding very similar to ours, he had back pain for 7 months even though A&E and the drs found abnormalities in his blood and urine samples but nothing was ever done for 7 months it wasn’t until they finally referred him to physio that they did an MRI scan and found his L4 (i believe it was) to be on the verge of collapse as well as MM lesion sticking out like a sore thumb.
I am just confused as to, will the bone collapse / can it heal itself / will he need medication / will he be pain free without medication / does he have to have medication, its a few days over two months now and still I am totally lost – again because he is seeing two different specialists i can only presume that they are presuming the other ones will take care of him.
But we are seeing someone tomorrow so will bring this up – Has anyone had damage to their back / bones and had it heal itself without the use of medication ?? Can you go back to normal or is it pain management all the way now?
Thank you Patsyann / Maureen.
My other half is not big on pills so currently isn’t taking any medication for his back, but feels that something is wrong (though refusing to go to A&E) The situation we are in is that he is being treated by two different hospitals, one for the MM and one for the back, the back specialist is meant to be one of the best in the UK, apparently it can take up to 2 years to get an appointment with this guy. He wanted to give it 12 weeks in the body brace to see how how or if it heals . He is in the back brace now purely because there is a slim chance that his bone can heal itself (though my significant other doesn’t seem to be paying any attention to being told to stop bending and don’t lift anything heavy, hes tallish so bends all the time and I am sure doesn’t actually know how to squat), I may have to call the specialists coordinator prior to our visit and grass my other half up. But I have a feeling at the end of the day they are going to have to do surgery to cement his vertebrae.
Interestingly enough neither the back specialist (dealing with MM bone damage) nor the dr’s at the clinic are that interested in his pain – he has a high threshold of pain so people seem to be ignoring it, its what got us into this situation in the first place – 7 months of pain before anyone took him seriously enough to do any form of scan to find the damage and the MM.
We are in tomorrow for the start of cycle two so will bring up the back issue, I just have no idea if its physically possible for it to heal 100% and for him to be pain free without drugs. To a degree I am more worried bout him potentially being crippled right now than the MM.
These times are defiantly here to try us.
Thanks Taff,
But I’m now worried that we are basically being told that’s that, live with the pain – he was diagnosed with something called hyper-movement he’s more flexible than most ppl which i guess is one of the reasons his back hasn’t caved in just yet, and why the restraints of the brace are hurting him so much, but if this is it at 39 and its as good as its going to get i’m not sure he can live like that. literally all of his hobbies and interests have come to a very abrupt stop, I just want his back to heal 100% the cancer to go into remission and then we just keep monitoring him from there for the future. But i want him to be himself again, pain free (albeit the issues of having MM and going to the hospital) and be able to do silly things we take take for granted like ride his motorbike, go karting, be able to travel / drive even.
Knowing we cannot predict how long the treatment will keep him MM free or even work is one story, but another is his general health and being stable, its unreal as to one second your are fine happy go lucky the only problem you have is this ongoing annoying pain in your back to which several dr’s think its just a pulled muscle/ tendon after 7 months of pain, to suddenly being slapped in the face and being told your very sick and over night you’re health and whole life has just deteriorated to the point that you’re no longer the person you were because everything has been taken away from you – literally in the space of a day only for it to get worse as the weeks have gone by with more and more limitations.
It’s frustrating to say the least for me so I can’t even imagine what my other half is going through.
Can his vertebrae heal fully or is that it forever ruined?
Sab’s
Helen – <span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”>NICE have said no to Carfilzomib</span><span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”> </span>
My significant other is on a Carfilzomib trial (Cardamon trial) for newly diagnosed and another trial is being run for relapsed – I know that there are other hospitals running the same trials just not sure which other than the one we are at (UCLH).
Thanks Mick, that is definitely one way to look at it, this week was much better compared to the previous two weeks of chemo, this i am sure will calm down I just cant wait to get back to some form or normality.
Sab’s x
Thank you everyone, I guess the biggest issues to date for someone like me is the not knowing, everyone is individual and there is nothing standard about how someone will react to the treatments given or for how long. We had false hope in the early days whereby they turned around and said that there was a 40% possibility that it was Plasmacytoma and potentially curable but they still thought 60% outlook was MM which it was. But reading beetlejuice54321’s comment I’m left wondering if there is something more to his diagnosis – they wanted to redo a biopsy (we declined) because the soft tissue sample came back clear – they took a big sample to cover the trial / standard treatment and a bit extra for general testing. I guess I will have more questions for them come cycle 2 when we see the Dr.
I just want to know that he is on the mend both his back and the cancer, and the thought of a year or more to see if he goes into remission is agonising. I just want him back to normal and then we take it from there monitoring him and wait for the dreaded relapse day.
But there are already a few positive signs – his vertebrae though two thirds of it is damaged by the MM, is actually being pinned up by new bone growth – though not unusual I still find it very perplexing that solid new bone growth down the vertebrae has occurred while the MM is destroying the bone density itself (still no valid reason as to why that can happen as of yet) so for now no operation is required and fingers crossed it can heal itself and within a reasonable time frame as right now he is very limited in his activities which is soul destroying to watch.
Hi Dawn,
He is being treated at the UCLH (Guess we couldn’t ask for a better place) while they have 10+ trials going on his in on the Cardamon Trial (Carfilomib) – Chemo Twice a week (IV line – Wed & Thu) third week today. It consists of 4 monthly cycles 3 weeks chemo / 1 week off after the 4th cycle i believe he gets a month off and they harvest his stem cells its then a flip of the coin (randomization) as to what group he is then put into e.g either another 4 cycles of chemo or he has the stem cell transplant, after that he is then on 18 months maintenance of weekly chemo dosages. So in all 2 – 2.5 yrs worth of ongoing treatment.
They offered him the trial straight away while they were still carrying out the tests giving him the option of standard treatment (Velcade), he’s been through the mill already visited an excess of 7 hospitals and seen god knows how many specialists to date.
I only hope that being young and strong is a positive towards him though its a considerable difference already since the day he was told and his physical abilities.
