[ruth75Participant]

My husband was diagnosed with Myeloma 2 weeks ago. it was discovered after he was referred to a&e by an optician who discovered a ruptured blood vessel behind his eye. He was found to have haemorrhages behind both eyes and very high paraprotein levels in his blood. he has also been suffering really bad back pain for about 4 months prior to diagnosis. He also had a bone marrow biopsy two fridays ago.

His treatment so far has been 4 plasma exchanges and a number of blood transfusions. He has had high dose steroids which he has now stopped. He started chemotherapy last wednesday, he is on the Myeloma X1 trial taking lenalidomide.

Anyway, his last plasma exchange was last friday, he is due to go back this friday for tests and possibly a transfusion as his fbc is still very low, but he is in extreme pain with his lower back – he said it improved whilst he was in hospital but has gotten worse again. He's not one to complain about illness or pain and usually suffers in silence, he won't normally even take a paracetamol or anything, so I'm concerned how much pain he seems to be in.

Should he be on pain mdedication? Could it be an infection from the biopsy? Should he go and see someone before Friday?

Thank you

[PerkymiteParticipant]

Hi Ruth,
You have not mentioned an MRI Scan, cat scan or even an X-Ray, most myeloma sufferers get at least an X-Ray looking for lesions in the bones. As example of this at my last appointment I reported I had lower back pain and I had an X-Ray within the hour! Lower back appears to be a favourite spot of Myeloma.

If I had a temperature then I would make contact urgently with my hospital, do you have any contact details for a specialist nurse or such? If no temperature just uncomfortable pain I would certainly start taking pain killers such as Paracetamol. They cannot do any harm and could help. If the pain is extreme I would make contact urgently with my hospital. This is only my opinion of what action I would do.

You also have an excellent resource at this site the Myeloma Nurse. Can I suggest you give her a ring the number is on the site.

Kindest regards
David

[ruth75Participant]

hi, he was given an x-ray as part of the initial investigation then he had a skeletal survey (?) last week when he was in the hospital but from what has been said this was done to provide some sort of benchmark (not sure if that is the right word) for future reference. Does this sound normal? They haven't indicated any bone damage from this as far as I know. He's not had an MRI or CT scan – there was talk of a CT scan right at the start, before he was given the diagnosis but they changed their minds and did the x-ray instead.

I've only got the information he has told me to go on, plus his discharge form that he was given for medical insurance purposes. I was with him for the initial diagnosis but since then he has just been passing information on to me, so I apologise if I sound a bit vague on some things.

I'm not even sure he wants my help, but I was worried.

[eveParticipant]

Hi Ruth

My partner is on his 10 day of chemo,I can only tell you he should not be in any pain,if you do not ring the hospital to find out why,go to your own doctor,My partner is on very strong pain medication and is in pain when he does to much.

Normal exrays show up lesions on large bones mri scan for small bones eg spine;,no matter what the damage is he should have good pain relief the hospital should be your first call.He does not have to be in pain;

It is very hard to take in everything that is happening to begin with.but do not hesitate to contact the the hospital,My partner had bad pains in his side and was told to up the pain relief and it worked 5minutes on phone thats all it took.regard eve

[PerkymiteParticipant]

Yes, the Skeletal Survey is perfectly normal; firstly indicates where any Myeloma sites are located but also gives them a "bench Mark" to check further skeletal surveys/X-Rays against.

The fact that they did not carry out any further examination, such as MRI scan, after the X-Ray indicates that they could not see any lesions on his bones which is very good.

Kindest regards
David

[brochoParticipant]

Hi Ruth so sorry to hear your husband is having a rough time . It takes a bit of time for everything to take effect and for the doctors to get test results to help them understand the best treatment .I agree with advice you have had dont delay in phoning the specialist nurse or even the consultants secretary if the pain is bad , its only by telling them they will know what he needs.It does get easier with time and I hope your husband will be home soon which will be better for you both best wishes Bridget

[KWilsonParticipant]

I would definitely say he should be on pain medication. The pain IS severe and as the treatment goes on should lessen, especially if he is put on a Zometa or similar drug (an intra venous infusion for the bones). If you have any worries whatsoever, don't wait for your next appointment, ring them as explain the problems.

Good luck.

xxxxx

[adminKeymaster]

It sounds like he has very low platelet levels given the bleeding. I doubt the biopsy caused the pain as the pain was present prior to the biopsy, was it in the sternum or the pelvis?

Are you sure there is no loss of bones – it would seem a logical explanation for the back pain, though of course the back pain might be independant of the disease – has he ever had a bad back before.

The start of treatment certainly relieved my pain, but then I am very lucky.

Good luck to you and above all to your husband.

[ruth75Participant]

Hi everyone, thanks for the replies. Since I posted this things got worse, last Monday his back gave out and he ended up sofa bound. He has been there ever since, with the exception of a couple of painful trips to the loo.

He refused to do anything about the pain, insisting he had pulled a muscle. Eventually his girlfriend made a GP appt for him, but when he tried to get to the car he couldn't and had to give up. He was meant to be back at hospital on Friday for further tests but couldn't make it, and had left it too late for them to arrange transport for him, so he is now going back tomorrow.

I have absolutely no control over the situation, being separated from him, and between them they seem determined to make things worse. Surely it can't have been good for him to be sat on a 2 seater sofa for a week, propped up with pillows?? He's 6ft5 for goodness sake.

Anyway, he's still in extreme pain. The gp prescribed some painkillers on thursday which his gf picked up for him, he says they helped slightly.

I'm fairly worried about him to be honest. I'm finding it difficult to deal with, being quite isolated from everything, I only know what he tells me and I don't ever know how selective he might be being with the information he passes on.

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