[gilllParticipant]

Hi
My husband was diagnosed with mm in April and since May has been having a zometa infusion every 4 weeks. PPPAXA have now said they will not fund this treatment after November (6months). Does anyone know if this is available on the NHS or is a postcode lottery.Also how easy it it is to get treatment on NHS oif you started as a private patient.

Gill

[AliParticipant]

Hi Gill

My Mums had Zometa infusions every 4 weeks since her diagnosis last November. Having said that she has not had one in a little while as she has just had her SCT. She was told she would be having it for 2 years. We go to clinic today so I will check if its still available for Mum in our area and let you know. Whereabouts are you?. It shouldnt matter a jot if you started as a private patient.

Ali

[meganjaneParticipant]

Hi Gill,

My husband Phil was diagnosed in May 2012 and he started receiving Zometa injections every three weeks after he had a dental survey. He is on the PADIMAC trial at St. Bart's but I don't believe we have been told how long he will receive the Zometa injections, I assumed that it would only be as long as he was receiving chemo, I will ask Phil to check next time he goes to Bart's. As far as I know there is no charge. I agree with Ali, it should not matter if you started as a private patient but from reading other posts on the site it seems there is a post code lottery in some cases 🙁

Megan

[gilllParticipant]

Thanks both fo such a quick response. We live in London and my husband is under a consultant at UCH. Gill

[MicheleParticipant]

Hi Gill

I have been receiving Zometa on the NHS since June 2011 and have been told that I'll continue having monthly infusions until it stops working.

My father was treated a few years ago as a private patient (PPP) and was told that once he started along that route he wouldn't be able to switch to the NHS.

It was a continuous battle for him as he had to constantly "get permission" for any drugs he needed to be treated with and often had to pay himself for some that PPP wouldn't fund.

[TinaParticipant]

Hi Gill,

My late husband suffered badly with hypercalcaemia and recieved Zometa on a regular basis. From what I understand it is not used unless a necessity because of the cost which is high. Pamidronate and other biophoshpates are usually tried first.

Best Wishes

Tina

[jmsmythParticipant]

Hi Gill

6 years ago my husband had Zometa every month for 2 years. He has just started treatment and is back on Zometa. Hope you get it sorted out.

Jean x

[tomParticipant]

Hi Gill

I had Zometa for two years after my SCT then it stopped so I think two years was/is the norm and I have never paid for any treatment even before it became free for cancer sufferers. My Dr had a Nurse fetch my stuff up to the clinic and if i needed any thing else my Nurse Heln woulg go and fetch it 🙂

Hope its soon resolved

Love Tom "Onwards and Upwards" xx

[tishwishParticipant]

Hi Gill

My husband Peter was diagnosed in May 2011 and was suffering very badly from hypercalceamia and was immediatley put onto Zometa infusion, he has continued throughout his treatment having them every month apart from the time immediatley following his SCT. He has been told that he will continue with them for the next year. We have never paid a penny for them but i have heard that if you are going from private to NHs then it is difficult to get it free.
Good luck

Love Trish xx

[JentayParticipant]

Hi Gill,
I've been having monthly infusions of Zometa for the past four years via the NHS and I've been told that I will continue to have them for as long as is necessary. Cost has never been mentioned so I had no idea that Zometa was more expensive than anything else. Research has shown that Zometa works better for people with mm than other bisphosphonates so don't let them fob you off with a cheaper alternative.

I have no idea if you can switch to NHS care after being a private patient but I would certainly enquire about doing so. After all, you and your husband will have paid the necessary contributions so why shouldn't he receive the help he needs.

Best of luck,
Jen

[PeterJamesParticipant]

Hi Tom
Did you have any side effects from your Zometa , I start mine on Mon am, but have booked meetings later in the day , unless it makes me feel off ?
Keep going upwards
Peter

[tomParticipant]

Hi Peter

Well I felt like I had Flu a few days after my Zometa aches and Pains you know Like flu, it soon passed then after a fair few month my veins fought the needle each month and used to play hard to get and when they did find one and blood was flowing it would Collapse and Nurse (bless) would have to have another dig in Lol.

Go ahead with your work but cut down after a day or two in case you get the flu (ish) symptoms 😎

Hope you have had any dental work done as you dont want to have teath pulled when on Zometa.

Good Luck with it all.

Tom "Onwards and Upwards"

[Author]

Posts