Hi Lyndyloo that's interesting, your Vinorelbine regime was different to mine, I'm doing the oral but only taking tablets on Day 1 and 8 then week off. I've found it really hard going. I feel poisoned, hung over, have nausea although the drugs are good, I'm taking them permanently!! Also it feels as though it is stripping my intestines and I spend most of the cycle eating bananas, custard and white bread..hmmm...perhaps I'm just whining!
Thank you to all for liking my new puppy, she is very sweet xx
I was on the tablet form of vinorelbine which I took 110ng every week no break. Day 1 day 8 & Day 15 which they must class as 1 cycle. The IV vinorelbine seems work day 1 day 8 and 1 week off.
My side effects were not too bad. Main ones were trots on day of treatment & feeling tired. I did not loose any hair which was good. When is your next scan?
Hi Linda,Nicky and everyone. I have been on denosumab every 3 months for 4 years. I now have back teeth crumbling and have been referred to hospital for extractions. I have been taken off denosumab for the time being, don't know when i'll be back on. i'm thinking i'd rather have false teeth rather than my bones getting even worse with cancer.i'll tell the onc this next time and let you know what she says.
love your dog Linda
How nice to be back on hormonals, even if they give you side effects it’s nothing like chemo does as I found out last year when I was in Fulvestrant - bliss in comparison to Eribulin! How did you find Vinorelbine? It’s another chemo mentioned to me but I don’t know much about the SEs and how you cope with the dosing which I think is day 1 and 8?
Stillhere - so sorry you’ve had to sell your horse, what a difficult decision that must have been and to have said goodbye to two of your doggy family. But my goodness what a little heartbreaker you now have! What an absolute cutie, definitely must be bringing the sunshine back ☀️😊
Thank you for your reply regarding teeth extraction.
Yes had 12 weeks on Vinorelbine had CT scan. Had results on Monday. Oncolgcolgist happy with results so put on Letrozole which I had in 2010 till 2014. Still not had Arimedex. Not sure why I was put on Letrozole but I sup pose it did work for a long period. Their behind may be it will be 6 years in January since I last had it so it was worth trying it again.
Nice having break from chemo anyway.
Hope tooth extractions heals well
Just to say thanks for your input on denosumab frequency, I will speak to my team about having the jab every 6 weeks, sounds more usual. More importantly, my fingers are crossed for your problem free recovery from a tooth extraction. Boy, cancer is a permanent joy isn't it??
My supposed relatively mild chemo, Vinorelbine is giving me such horrid side effects, I'd be happy to jack it in tomorrow. Having lost our 2 beloved doggies recently and selling my lovely horse due to feeling so unwell we now have a gorgeous little mini wire dachshund who has brought the sunshine back into my life.
Thanks for your support. I was referred to the max-fax department at my local hospital, had a chat with him a couple of weeks ago and then the tooth came out on Monday! There wasn’t much to be done to save it as it had had extensive (and very expensive!) root canal work done on it a few years ago. We now sit and wait so to speak. From what I have been told this time around as well as last time, it’s not clear who will or won’t develop ONJ, there’s no particular pattern other than reducing the risk of infection but generally your own dentist wouldn’t want to deal with it and would usually refer you. Fingers crossed you don’t have to use this knowledge!
Hope you are keeping well, I lose track of what treatment everyone is on, are you on chemo at the moment, the one I can’t spell beginning with v? Sorry, chemo brain strikes again.
Sorry you are having to have a tooth out. Can I ask for future reference did you go to a normal dentist and did they refer to a max fax dentist at hospital.
Hope chemo is going well with the desired results.
I will be hoping nothing untoward happens. I have been on some type of bone strengthening treatment for over 11 years now so it’s always a worry when something like toothache/infection comes up and you have to deal with it. I did have a tooth extracted a few years ago when I was on bisphosphonates and all went OK afterwards with no jaw problems but I could be chancing it now by having to have another one out. They were both back teeth with root canal problems and from what I have been told even getting the root canal work redone can cause jaw issues and even then it might not save the tooth. Plus, in my case, a small area right at the tip of the (long!) root had some type of infection which could have flared up again and caused an abscess which in itself can cause jaw issues so I didn’t have much choice. Not exactly a situation I wanted to be in but nothing I could have done would have avoided the extraction other than taking more care of my teeth way before BC became an unwelcome presence in my life!
I couldn’t agree more about going to the Max Fax team, I’ll be forever grateful to them. I had mine done by a Dental Surgeon, had antibiotics, stayed off the Denusomab before and after as instructed, and had only had 5 doses of Denusomab anyway, but still had issues. I’m still under my Max Fax consultant and they see me every 3-4 months, which I really appreciate, and they have said any future work other than simple fillings will be done by them. Will just add my Max Fax consultant said they would advise staying off Denusomab for 6 months afterwards (I was told by Oncology a minimum of 3 but I was off it for 4), because it is such a long acting drug but accepted that would be decided by the Oncologist. That said my Onc is so impressed by them I think she would probably agree! Hope all goes well for you Nicky...Kate x
If your current chemo/treatment regime is 3 weekly you can ask for your denosumab every other cycle, or even every 3rd cycle. I did this whilst on Fulvestrant which is given every 4 weeks so I had my denosumab 8 weekly. However having gone back to chemo (boohoo) I was getting it every other cycle so had it 6 weekly. Recently I have been off denosumab as I've been waiting for a tooth extraction - not ideal at any time let alone whilst on bone strengtheners and chemo. I see kate was off denosumab for quite a while to sort her tooth problem out, I'm not due to be off it for quite so long but definitely feeling more achey since not having the injection for over 3 months now. Fingers crossed that I don't have any issues with ONJ but all precautions have been taken with antibiotics and of course letting the max-fax people at the hospital do the extraction. Any issues I will report back on a separate thread to help anyone else in a similar position.
Hi Stillhere, I only know about my experience but I’ve never heard of it being given more frequently than monthly before. Appreciate we’re all different but my scans have been stable having it three monthly. Kate x
That's interesting. I have started Denosumab in the last couple of months after a bone scan but because I only see my team every 3 weeks I also have the injection every 3 weeks! It seems more frequent than other patients?
I was originally on monthly Denusomab injections but following a few issues with several ladies, myself included, the hospital policy was reviewed and now it is given three monthly. I had a problem with my jaw following some dental work and was referred to the Maxillo Facial team, the consultant I saw there agreed with three monthly as it’s such a long acting drug. When I had the dental problems I was off Denusomab for almost a year, and my bones suffered, have been back on it three monthly for just over a year now and things have really improved, infact the discomfort I’d started to get settled down after just one dose. Kate x
Congratulations on being stable I've done research on thst drug and you cab have it every three months I too on it and have it every four weeks unfortunately not had much luck sgeb originally when was going to start it my calcium was low so got delayed then I eventually got it tri months later had the injection went yo oncologist in September and calcium had dropped so couldn't have it again though on calcium d3 forte can only think u had stomach bug and wasn't having as much dairy in by diet milk and cheese but oncologist was not worried me missing a month xxx
A huge congrats on your good news. I’m on Letrozole plus Palbociclib and nearly fainted when my Onco told me he didn’t want to see me for two whole months as my mets were stable . THEN it was three whole months. Hey ho, if the experts are happy who are we to complain? He must be pretty confident that your condition is well controlled and you are managing. No way would you be put at risk. Hope you’re 🥳. X
My oncologist has changed my denosumab injections from every 4 weeks to every 3 months. Is that standard practice? He seems ok with it but I’m feeling a bit panicky. My latest scan is stable.