[FIFICHICKParticipant]

Hello again all
I am very worried about my dad and dont know where else to turn other than here. I hate seeing him the way he is and its heartbreaking to see him in paid. He is iin chronic pain constantly now. He has recently been taken off bonefoss and was given his first treatment via infusion which apparently is stronger than bonefoss and contains pain treatment but i have no idea what its called. He was told that the side effects would be mild flu-like symptoms. Mum was with him the day he had the transfusion and the nurses came to their home to give it and all seemed to well. By the evening he was shaking volently and was in so much pain that he simply went to bed and stayed there for two and half days.
My husband and I went to visit them at the weekend and only managed to see dad for about two and half hours as the rest of time he was asleep. But having seen him the day before his treatment I was shocked by the change. He was in chronic pain, was shuffling and very unsteady on his feet, needed help getting up and down on the sofa, he was very pale and his skin cold to the touch. He was hardly eating and complaining about a bad pain along the side of his head.
His palative care nurse came out yesterday and she finally noticed his hunched back, how pale he was and said she had never seen him look so ill. She is also worried that he has now done some damage to the top of his spine at the base of the neck as he is saying it all feels loose. Due to the fact that he only fairly recently had a scan they cannot do another one. She didnt think it had anything to do with the new treatment but wanted to get a second opinion. She increased his oramorph yet again and he is now on four large doses a day and a patch.
Has anyone else had this treatment and come across these problems? I just dont know what to do and worry that everything has just taken a turn for the worse. My fears are made worse by the fact that my previous partner died froom prostate cancer which had spread to his head and he complained of pains in his head and they found that his head was full of tumours. Two weeks later he died.
Seeing him in so much pain is heartbreaking and I trying to hold myself together for my mum and my sister but trying to remain focused and throwing myself into work just isnt working. I just want to be with him all the time.
Has anyone experienced this kind of thing? Does it mean what I fear it means?

[eveParticipant]

Hi

Have you phoned Ellen on the free number of this site
Have you got your dads permission to find out what is going with consultant.

These are important things,may be your Dad has chosen a pathway you do not like,he may not be prepared to tell you,until you at least get his permission to know what is going on,you will not get any were.

I suggest you ring his consultants secretary ,and see if you can speak to him,or the nurse who is in charge of him,make sure you ave your Dads permission. In writing other wise you are wasting time.
There is the data protection act,and unless you get something in writing you will not find out anything.

The older generation,sometimes want to handle it themselves ,does your mum know anything,

I wish I could be of more help,the only other thing I can suggest is be there when the nurse is due.Eve

[janwParticipant]

Hi

If your dad has just been changed to Zometa via infusion from bonefos tablets, then the first infusion can certainly cause you flu like symptoms and leave you very tired for a couple of days afterwards. (There are quite a few comments on this forum about Zometa in previous discussions describing the side effects.) However, once you dad gets used to the monthly infusions, hopefully the side effects will diminish.

Around the time of the infusion, your dad should try to increase his fluid intake a couple of days before, during and afterwards to reduce the side effects. The long term use of Zometa is supposed to help with bone pain and help with myeloma. It took me about six months of regular use before I started to achieve some bone pain relief from Zometa. I haven't heard that it actually has pain relief in this type of infusion, but perhaps you dad is on something different? I still have to use pain patches, 8 lots of 50mg tablets of tramadol to keep my pain under control. The zometa has allowed me to reduce the tramadol tablets to 4 per day.

You will need to talk to your dad's consultant about any bone damage which has been identified during his treatment. I have a hump in my back from collapsed vertebra. My consultant informed me the back would not straighten apart from an operation, but he also advised sitting in bed resting again soft pillows would not help with my posture. Hopefully your consultant will be able to advise on what was seen during his last recent scan and whether this showed a curve in the top of your dad's spine or anything in his neck. If nothing was seen on the scan, you could mention the palliative nurse's comments and ask for the consultant to have a look at your dad's back/neck. Unfortunately with myeloma you can damage your bones at any stage.

I hope your dad feels better soon and that you get some answers to your concerns.

Jan W

[mhnevillParticipant]

Hi (is it Fifi?)

As Jan says, if your Dad is on Zometa he probably won't have the flu like symptoms again. I only had them the first time when I transferred from Bonefos. I have been having four weekly infusions for two years now. I have been very pleased, because at the time I started on it, my Consultant was expecting me to have stress fractures because of the amount of bone damage, but I haven't had any.

I know it sounds a lot of pain relief, but at this stage your Dad needs to take as much as necessary even if it makes him very sleepy. Hopefully he will be able to reduce it as the treatment kicks in.

Keep strong for your parents.

Love Mavis

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