[LindseyParticipant]

Hi all

I was hoping some of you clever lot may have some thoughts on this – our consultant does not seem to be being that helpful, or perhaps I am being unfair.

My mum is currently being treated, and is now about 4.5 months in from diagnosis and on about the 5th cycle of RCD (she is on the myeloma XI trial). She has had some side effects (bloody DVT was our Christmas present!) but is responding ok generally. The problem they don't really seem to be dealing with is pain – aside from keep upping the morphine.

She had back problems at diagosis (3 collapsed vertebrae)and most recently cracked ribs. She has had a dose of radio on both, and the back seems to have eased. However the ribs are causing problems which is really frustrating, especially when he keeps telling us she shouldn't be in pain. Part of the problem we think is that the vertebral collapse has lost her a few inches in height on an already diminutive stature, which has compressed everything, leaving her with a big tummy (as in 6 months pregnant big)and curved shoulders. (tum probably not helped by all the digestion problems the pills cause as well!) Her tummy then pushes on her ribs which must account for some of the pain. She explains it as feeling like a cramping in her side, everything being pressed together, rather than stabbing pain, causing her alot of discomfort. Has anyone experienced anything similar?

My issue, as I said, is that this is never looked at in terms other than pain killers. But I keep thinking if something could be done about her posture – pulled up or at least straightened out a bit then this would help everything. I don't know if she is a candidate for a kyphoplasty or similar, but this is never even mentioned. She has never seen or been referred to anyone else – a orthopeadic specialist etc – whenever things are mentioned the attitude seems to be that there is nothing that can be done about the physical damage. I keep telling myself that they are concentrating on fighting the cause, and the damage will be looked at later, but I wish they would do something to help relive the pain. And on here it seems as though people have had various other treatments to backs etc- was this during or after chemo? I would love her to get a second opinion from a Myeloma specialist (oh to be at The Marsden!) but I don't think the few hours in the car is very appealing to her right now.

Sorry for the long message, but really, any thoughts at all gratefully recieved.

Thanks so much

Lindsey

[MinParticipant]

Hi Lyndsey,
You describe exactly what my husband suffers from as a result of 4 crushed vertebra. His problems of pain are mostly to do with the ribs sitting on the pelvis or hip bone due to the new short torso. Big tummy and bent back looking like a hump. Smaller appetite… frequent toilet visits as all his organs are crammed into a smaller space. In his case he had two balloon kyphoplasty following on from radio therapy, but I have to say it was a difficult task persuading the consultant haematologist to refer him.
From experience I can say that, they will not do this on a crush that has a tumour load in it. The fact that the vertebra have crushed is an indication that a tumour has caused the damage. Following his 1st operation on two he was almost immediately out of pain. going from 160 mg of morphine a day to paracetamol X2.
Peter should have had two further Kyphoplasty done on 9th of December one of which had just happened recently. but they had to be canceled due to the fact that a tumour needs to have receded following treatment or it can cause problems.
In his case he had not been on treatment long enough. ( He is a relapsed patient having already undergone an SCT. He was also found to have DVT's.jusst before Xmas snap pun) On the 1st occasion we had to get a referral via other sources. For instance you could ask your Mums GP to do the referral. By the time you get an appointment and reach the point where the op can be done the Myeloma treatment she is on may have made a difference to a potential tumour.
We found for instance his consultant had never heard of balloon kyphoplasty. I rang the trauma hospital to find out which Dr was able to perform the operation, and a nurse specialist in osteoporosis booked him in for an osteoporosis check up its called a dexa test. following which, she referred him to a surgeon. The surgeon was only too happy to do the op as the hospital received a grant of £2K from the government for treating a cancer patient quickly!
What I suggest you do is try and contact her gp but do the research so you know who you want the referral to. Speak to an osteoporosis nurse specialist at a local hospital. I found ours on the internet. Look up your hospitals and search there trauma teams for a 'spine man' There are very few surgeons trained to do Kyphoplasty.
He did regain a little of his height, he is a bit straighter, but more importantly the pain relief was a blessing.
He has the pain again now but only because of the new crushes. But his Macmillan nurse helped him to understand that upping his morphine to the point of coma was not the answer. Changing the pain tablets from time to time for a different type is more effective and prevents him having to have ever larger doses. The cramp pain he found was eased by 2mg of diazepam. ( He no longer takes this but was on and off it for 10months)
If I can help with more info let me know. If you click on my name under the photo you are presented with the opportunity to send an e mail directly to me.
I think you are on the ball for your mum and its just a question of timing now.
Regards
Min

[LindseyParticipant]

Dear Min

That is such a lenghthy and useful response, thank you SO much for taking the time to write it. It has given us lots to think about, and ask about, and I feel bouyed to get on the case! It is also so good (well not 'good' but I am sure you get my drift) to hear of someone with similar experiences. So reassuring to know you are not the only one, but also to hear that things have helped your husband in similar circumstances – and the diazapam is something that has never been suggested. Gives you hope that there are other options out there – just a bugger that you have to chase them yourself!

Thanks so much again, and I really hope he manages to get these new problems resolved quickly and gets back to those 2 paracetamol and a long, peaceful period!

[mhnevillParticipant]

Dear Lindsey

Although my experiences are not like your Mum's she has my extreme sympathy because I don't think that Drs always do take pain seriously enough.

I think you should ask to see an Orthopeadic Specialist, or a Pain Specialist as morphine probably isn't the answer, or if it is, maybe she need patches. Is your Mum on steroids as part of the Trial? I found that these were like a miracle cure for all my pain – MM and Arthritic. Unfortunately, now I have completed the course, my aches and pains are returning.

As far as geting "straightened up" goes, I am finding the work I am doing with the Community Physio very helpful. Does your Mum get this support?

All blessings to you at this difficult time.

Mavis

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