[susieParticipant]

Hi All

I have had Zometa for 2 years now. In the last 4 to 5 months I feel very unwell for about 4 days after receiving the infusion. I also get quite bad back pain and continual sore eyes. I shall be asking to stop it but wondered if anyone has similar problems with Zometa ?

Best wishes

susie

[Ang287Participant]

My husband has now been having Zometa infusions for 3 years and says the pain afterwards has lessened to what it was originally. He now makes sure he has lots of water afterwards so he doesn’t get dehydrated. He has never mentioned sore eyes but definitely gets some back pain and other aches.
Best wishes, Angela

[davidainsdaleParticipant]

Hi Susie

Sorry to hear that you’re having problems with the Zometa. I was on Zometa for two years but the Drs stopped it 12 months ago saying that there was no benefit in carrying it on after two years.

I had the usual ` Zometa flu’ the first time I had it but after that no real problems. I did think that three or four days after each infusion my skin seemed more sensitive and irritable.

They say a good tip is to drink plenty of fluids just before and after having Zometa to help the kidneys.

The medics or Myeloma Uk helpline are the best ones to speak to.

Hope this helps.

David

[susieParticipant]

Hi David

How interesting your doctors are saying there is no benefit in giving Zometa for more than 2 years. May I ask where you are being treated ? I shall be telling my consultant next week that I don’t want to continue with it. It seems the hospital I am at gives it indefinitely!

Thanks so much for your reply.

Best wishes

susie

[davidainsdaleParticipant]

Hi Susie

I am at the Southport and Ormskirk NHS Trust on Merseyside.

I do recall seeing a report somewhere ( maybe on this website ) which seemed to support the collective wisdom that there was not a lot of benefit in having Zometa for more than 2 years. I don’t know if there is a gender issue here because presumably woman on average tend to have thinner bones and perhaps are more prone to fracture.

That said, I have met a number of people at Patient Information days who seem to have been on Zometa for longer, so maybe it just comes down to local practice and consultants.

I forgot to mention that there is a good MUK Info Guide on biphosphonates if you have not already seen it.

Hope this helps.

David

[susieParticipant]

Thanks a lot David. I’ll see what my consultant says but I do want to stop it. Apart from anything the thought of osteonecrosis gives me nightmares and I’ve become obsessive with mouthwashes.😀.

All the best

[stanley-1960Participant]

Hi Susie,

I have just had my 30th monthly Zometa today. The side effects for me as David says is the 36 hour flu afterwards this lasts for 12 hours where i feel like iv’e been kicked by a mule. For me its a small inconvenience for the benefits. I have quite a lot of bone damage and the transformation has allowed me to play golf 3 times a week, road cycle 30 miles 2 times a week and walk long distances without pain or discomfort. The interesting thing is the profession in the uk  are divided on the anti myeloma properties of Zometa. Below is a quote from myeloma beacon MRC myeloma ix trial 2013

<span style=”font-family: Arial, Helvetica; font-size: 12px; -webkit-text-size-adjust: auto; background-color: #ebeadd;”>”The results of this trial showed that targeting the bone with Zometa as part of treatment significantly improved survival of patients with myeloma. These results show that preventing and treating myeloma bone disease has beneficial effects beyond just controlling bone pain and preventing fractures; it also increases survival” </span>

This survey mirrors an earlier 2010 trial covering 2000 patients. My consultant was going to stop Zometa after 24 months as per hospital protocol. I strongly stated that whatever my current results i wanted to carry on with the Zometa. He had a change of heart and i continue to have the monthly infusions indefinately. For me personally the side effects and additional risk of ONJ are outweighed by the obvious benefits to my bones and the possibility of the anti myeloma properties of the drug.

Good luck with your decision.

Stanley

[stanley-1960Participant]

Hi susie,

wouldnt paste the quote but here is the article link.

 

http://www.myelomabeacon.com/forum/zometa-infusions-t3180-10.html

Best regards,

Stanley

[susieParticipant]

Hi Stanley

Thanks for your input. Having read some of the myeloma beacon articles. I may see if my consultant would agree to 3 monthly infusions. I’ve seen that some medics say one thing and others say the opposite. I know my dentist says Zometa stays in your system for years, if so why continue if its not necessary.

Thanks again.

susie

[janwParticipant]

Hi,

I’ve been on Zometa for five years without any side effects and actually have reduced back/rib pain from the drug.

After relapsing in Oct 2015, I commenced VCD for eight cycles and in April 2016 I noticed a possible ulcer in my upper palette. After visiting the dentist, it appears I have some bone or tooth growth erupting through the palette. The bone/tooth continues to grow and I use mouth wash together with bicarbonate toothpaste to try to limit possible infections. I saw the hospital dentist who suggested a wait and monitor approach. The additional growth could be as a result of Zometa, but because the
drug is quite new, this is a fairly new field for doctors and dentists.

The thought of OnJis worrying. On doctor’s advice, I’ve stopped Zometa because as others have said the drug stays in your system for years. Personally, after suffering from three collapsed vertebrae in 2010 without any warning and other various bone lesions, I would like to recommence the drug in the future to try to prevent further bone damage. Perhaps a discussion is necessary with my doc in three years time, but possibly at a reduced rate of three monthly in order to reduce the risk of any problems.

I hope you manage to sort out the issue with your doctor Susie.

Regards Jan

[susieParticipant]

Thanks Jan. Gosh 5 years on Zometa. With me at the start of my journey, I didn’t have any lesions so I was lucky. I do have a very painful lower back but they’ve told me it’s wear and tear. ie vertebral slip caused by slipped discs.

I have my appointment this afternoon so we’ll see what he says. I’d be happier having it 3 monthly but whether he’ll agree I don’t know.

I hope things go well for you.

Best wishes

susie

[louishenryParticipant]

I had a bit of exposed bone in my mouth. The maxillofacial doctor sorted it out by scraping back a bit of bone, then mouthwashes. It healed in time for my SCT last November, no problems since then. She said if the Zometa helps the myeloma keep having it and I’ll sort out any problems that arise. So I’m still having it every four weeks

[andygParticipant]

Hi Susie.

There still a lot of discussion going on about the benefits of Zometa at the moment. Some claims have been made that it has an anti myeloma effect but that hasn’t been verified.

I’d been on Zometa for just over two years before I had to stop it due to ONJ. At last years info day I asked if I would be able to restart Zometa when my ONJ had cleared up and was told since Zometa stays in the bones a long time there was no need to rush back to it and because I had developed ONJ Zometas benefits may be outweighed by the risks to me. Statistics apparently show that 2-3% of Zometa patients get ONJ. As I didn’t have any infections I was advised not to have any intervention as studies had shown this wasn’t the most effective way to to treat me so I was just told to maintain good oral hygiene. Lots of mouth washes of warm salt water and not the commercially available ones as most contain alcohol and have a cancer of the mouth risk!! I still have a tiny bit of dead bone and hopefully that’ll fall out before my next appointment at Max – Fac and I’ll be signed of that problem.

Every day is a gift.

Andy xx

[susieParticipant]

Hi Andy

Nice to hear from you. It seems many of the old posters have gone elsewhere, as they don’t input here much any more. I hope you are keeping as well as possible.

I spoke to my consultant yesterday about stopping/reducing the Zometa. He said the reasons its given continually is that it interferes with the actual myeloma cells thus having an anti myeloma effect. True or not I don’t know but he’s agreed to miss a months infusion. I do wonder if I wasn’t drinking enough though and that caused me to feel unwell.

Best wishes

susie

[bandityogaParticipant]

Hi Susie

My husband has been on Zometa since 2012 but we did mention it to her today and she has now said that Ian can now have it every 3 months instead of monthly. If he relapses then he will be put back on monthly Zometa.

Hope this helps.

Maureen

[Author]

Posts