Hi All
Was diagnosed with 2ndaries in spine and ribs at end of Nov 2007. Very painful when I moved etc. Treatments are herceptin and zometa. In general I think my back is a bit better, but overall I am feeling worse, aching all over and just no umph. Even when the pain killers are working I still find it hard to get going. I have heard that Zometa can make you worse before better. Any tips on this and how long it takes - I have had 2 zometa infusions so far
Thanks
Jane
Hello Jane, it can take a few infusions before you start to feel better and you can often feel worse after the first couple of infusions. Hopefully you’ll feel better soon…another thing my onc has told me is that healing bone mets can be painful, something I’ve experienced during my treatment for bone mets. xx
Hi Jane
I have had 4 infusions so far - my next is due on Tuesday.
I suffered delayed reactions to the 1st one - I had the achey flu-like symptoms and sickness. But things started to improve after the 3rd one. I do feel achey - when my next infusion is nearing - like I need topping up!!!
My energy levels have been ok though. I was dx with 2ndaries in aug 07 - pelvic/lumbar region and spot on rib.
Take care xx
Hi Belinda and Sixpen
Thanks for your comments - my onc said I had a battle ahead when the treatment started. Didnt know what he meant at the time. Now I do.
I was sick for a few days after my 1st one, about 3 weeks after. Put this down to too many drugs in my tummy at one time, but I`ll check with onc when I see him next.
Think my energy levels are partly due to that I only finished rads 3 weeks before my 2ndary diagnosis. 2007 was not a good year.
I find that a heat pad on my back works wonders.
Role on number 3, hope its a turning point
Jane
Hi Jane,
I was diagnosed with bone mets end of Oct and am in the same boat as you in that I am still experiencing pain and waiting for it all to kick in, so to speak. I have very little energy to do much as I find the pain very debilitating. Just wanted to let you know that you are not alone.
Here’s to a less painul 2008
Angee x
Hi Jane,
and those who havent been on the bone drugs for that long. I started having bisphosphonates (pamidronate) 5 years ago for extensive bone mets. I was in a lot of pain and that was a problem getting the right sort of control. I was having pamidronate 4 weekly and it was 3-4mths before i started to notice any improvement. But during that time from dx to a bone scan after 4th treatment (4mths) the bone mets got a lot worse - spreading further. The whole of my spine was affected, both sides of pelvis, femur, skull, ribs and collarbone. But after that time I was able to stop all painkillers! and after a year the bonescans showed quite an improvement. I rarely need any painkillers now but of course have to be reasonable careful what I do. I did used to notice things got worse just before the next infusion, so when the mets showed they were getting worse I was changed to 3-weekly infusions and this tied in with the herceptin that I started on 4 years ago. If specific areas continue to be painful it is worth discussing rads to those areas.
Dawn
Hi All
Thanks for support. Pain is dreadful when it happens, there is nothing anyone can do to help you. Over the weekend I was waiting for each four hrs to be up to take some more traemdol. What a life.
I think the pain I have from my spine mets is going a bit. now and most of what I am getting I think is zometa side effects, or other side effects (herceptin, zometa, tamoxifen etc) as it moves around my body. Just as I am convinved I have mets or a broken bone in one place it seems to die down there and go elsewhere. Seems to go to anywhere Ive had a minor injury before ? Especially the ribs under my mastectomy site. I have 3rd treatment on Friday and hope I am getting through the worsed of it.
Has anyone ales had balance type induced sickness/nausea ? I have been sick/nausea for about 10 days, doctor thinks it balance related. I dont disagree, just wondered if anyone else had experienced this.
So far today is going well painwise, 2 paracetamol and 1 tramedol seem to be doing it, so thats great. If only didnt feel sick. But on the bright side, it keeps me in bed and stops me doing too much.
Take care
Jane
Hi Jane, some times I feel like my grandmother who was always popping pills, however I am now a firm believer in “its all about getting the drugs right”
I cannot tolerate tamoxifen and take faraston, i dont get giddy any more and feel as sick. Oh and I started taking valium again, dont know why I stopped really who cares about drug addiction? its our life isnt it! gives me heaps more energy, maybe too much which is why it is 4.26am?
Take care and hang in there, love Suzy
Hi again Jane,
I have heard others speak of nausea from taking tamoxifen. I have no experience of this myself as not on hormonals.
Dawnhc
Hi All
Have my suspiscions about tamoxifen, But I started it alongside herceptin and the sametime as 2ndary diagnosis so painkillers and zometa all started a week later so its difficult to say.
I am going to have my ovaries out on Monday - so that will mean I can soon change from tamoxifen !
As for valium, I have prozac and it does me the world of good. I enjoy what Ive got and can be positive rather than resentful and negative. Dont care if I take it forever.
I was also awake at 4.30, but decided to read as little boy was in bed with me. Hes already computer mad without me having the laptop in bed at night. I really enjoyed the read as for a few weeks I havent been able to look at a page. A good sign. Also made it to hair dressers today and didnt puke. I now love going to hairdressers and was dtermined to be there. But thats all I did.
Started a new ant-sickness yesterday evening and have been alot lot better. But feel this is acting on the symptoms not the cause. But it is great to feel a bit less ike the exorcist
TFN
Jane
Hi Jane not sure how long ago this post was but i thought i would reach out to you. I have osteosarcoma started in right tibia with limb salvage surgry and then metastasized to about 15 other bones. The most dangerous tumors are on my T2 and T 11 spine. The T2 is extremely close to my spinal cord. I just finished sbrt radiation surgery last week to the t2. Trying to keep me from being paralizrd. I started a new chemo drug similar to taxotere yesterday along with zometa. Before the t2 radiation treatment i had radiation on my sternum which has proven to be the worst pain ive ever had in my life. it started about 6 months ago and gradually got worse. The radiation has not helped with this location. So we syarted zometa and chemo again to see if we can get some relief and maybe shrink the tumors again. I just wanted to see how the zometa is working for you or any other patients on this site. It seems 4:30am is a popular time for those of us with bone cancer . Any suggestions or info would be helpful. Thanks sharon