[strictlymyelomaParticipant]

just started second month course of Chemo Trial (CRD)
in discussion with the consultant(and after reading on the internet)re possible bone damage thru MM asked if i should have this infusion at some stage (the response quite surprised me))" havn't you had this yet"!!! and yes i should have the infusion(makes me wonder a bit!!)as no recent MRI had been carried out (last one was a year ago+ to check any potential damage)and i do get low/middle back pain and central middle and side rib pain, an MRI has now been organised for 22nd December (shame its so long away)Question: can anybody let me know about any possible side effects from having this bisphosphonate infision proceedure carried out Ta
Norman

[PerkymiteParticipant]

Hi Norman, It does make you wonder a bit doesn?t it. We totally rely on the doctors and Nurses to get it right.
Sorry, I cannot help on bis infusion I take Loron which is the daily tablets. I have no side effects at all from them.
Kindest regards
David

[ElizellenParticipant]

Hi David!
I have been having monthly bisphonate (zelodrenate) drips since being diagnosed with raised IgE levels early this year and apparently will do so for the forseeable future.

I have had no side effects from it at all. The procedure is simple and takes about 1/2 hour in total, just meaning I sit in the ward reading a book while it happens.

I was told to make sure my dentist knew I was on bisophonates and given a leaflet for him to read. Can't remember why that was so – that 'old timers disease' kicks in now and again 😉

[TinaParticipant]

Hi Norman,

My husband Patrick goes through fazes when he has monthly infusions of Zoledronic Acid (Zometa)mainly when he becomes hypercalcaemic (too much calcium in his blood). I am happy to say he has not suffered any side effects to date.
I believe the side effect Liz is referring to is caused by long term use which may cause a degredation of the bones in the jaw.
Good Luck

Tina

[PerkymiteParticipant]

It is all to do with Ostenonecrosis of the jaw.

click on this link http://www.myeloma.org.uk/services/faqs/myeloma-symptoms-and-complications/

Kindest regards

David

p.s. Drinking plenty of water is very, very important. I dring 5 to 6 pints a day!

[brochoParticipant]

Hi Norman I have been having these infusions for the last years Initially I was on Parmidronate once a month, fairly simple takes about 2 hours Usually ache for a couple of days afterwards , a bit like flu , bit after that no problem Having changed to Zometa recently , just had my second dose I have had no side-effects as yet .I do find it helps ease the bone pain and I try to drink lots love Bridget x

[ElizellenParticipant]

Thanks for that link, David!!

[KWilsonParticipant]

I've had bisphosphonate for aaaaaaaaaages and altho' I felt a bit sort of 'odd' for the first few days after the initial three or four infusions, I soon got used to it and haven't had any problems at all since the.

I do feel it helps with the pain and also helps to keep the MM at bay somewhat, which, as I understand it, has now been clinically proven.

xxxxxxxx

[MinParticipant]

Hi Norman
Firstly, look up on this site http://www.myeloma.org.uk/intro-to-myeloma/myeloma-news/ News about zometa.
A biphosphonate that my husband has been on for 18months now. He has a drip in the day unit every 6 weeks and it takes about 30minutes, following which he usualy feels as if it helps with his bone pain. His consultant has several patients where it has caused osteocronosis of the jaw, hence the reason he only has it 6 weekly.
Having said that whilst its purpose is to prevent further bone damage, he has in fact had another crushed vertibra since being on it.
If you are on steroids (I suspect Dexamethazone) I believe steroids can cause bone damage on there own never mind the MM diagnosis which will often cause bone damage too.
I believe its main purpose is to prevent the osteoporosis that is caused by steroids as well as the damage that the disease does to your bones.
Prior to his mm diagnosis my husband was on massive daily doses of steroids for his kidney problems which probably contributed to his bone damage. A dexa test will tell you if you have osteoporosis and is very quick and normaly easily obtained at your request.
We just rang up an osteoporosis nurse specialist and made an appointment without any reference to a Dr. He was seen in two days for it. (on the nhs)
and I learnt about it on a NHS website for the local trauma unit. I was in the room when he had it done and its like a low level x ray but while you lie on a bed, but with more detail.
Always handy if you have to wait a very long time for mri scans etc.
Sorry for being so long winded but want to cover all the options for you
MIn

[GeorginaParticipant]

Hi Bridget

I saw on your post that you were originally on pamidronate but have recently changed to Zometa. Can I ask why you've chamged?

Many thanks
Georgina

[brochoParticipant]

Hi Georgina hope you are well . I had been on parmidronate for almost 4 yearsand my doctor felt a change would be useful Also there have been some studies which have shown that zometa when used with dex and velcade has had an effect on myeloma cells . love Bridget x

[BADGERParticipant]

Hello Norman

I have had a monthly infusion of Parmidronate for the past 18 months the first few times caused a bit of bone ache in my legs but since then I have been fine only problem is I have deep veins so it takes two or three digs to find one
Keep well Jo

[GeorginaParticipant]

Hi Bridget

Thanks for the info. My mum is on pamidronate. She was on zometa when first diagnosed but this was changed to bonefos when she had acute renal failure (she fully recovered). She wasn't on anything after her SCT but the myeloma has recently returned and she has been put on pamidronate. I did ask about zometa as I had seen the recent study on its benefit. They said if we felt strongly, they would change to zometa but reasons for not are kidneys (they think pamidronate is better if you have had previous kidney problems) and risk of problems with the jaw.

My mum is being treated at UCH and I think you probably see her in the velcade room on Wednesdays!

Hooe you are well.

Take care
Georgina

[brochoParticipant]

Hi Georgina I hadnt realised your mum went to UCH too Whats her name I shall look out for her on Wednesday love Bridget x

[GeorginaParticipant]

Hi Bridget

Its Jose.

Best wishes
Georgina

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