Forum Discussion
More research needed into side-effects of chemo and hormone therapy
In our BCNA network, many members report unexpected, painful and ongoing side-effects during and after chemotherapy and hormone therapy; for example in a recent discussion on ‘hormone therapy and tendon issues’. Sometimes treating medical staff seem to be unsure about causes and best treatment for side-effects.
I read a study 'Incidence and severity of self-reported chemotherapy side-effects in routine care' (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0184360#sec013 ) This study reports that knowledge about side-effects comes largely from clinical trials. There is little evidence coming from normal clinical care.
In this study 449 people with breast, lung or bowel cancer were interviewed and asked questions about their side-effects. The study found that “3/4 of individuals undergoing chemotherapy in NSW will experience multiple side-effects during their treatment, and for over 60% this will include a serious side-effect.” The study found that side-effects were similar across the three cancer types.
The authors suggest that “this information is useful for both clinicians and policy makers, who typically make treatment and funding decisions for standard practice, but often on the basis of potentially unrealistic clinical trials. This work also confirms the need for side effects to be collected using patient-reported methods, to be monitored throughout chemotherapy treatment, and highlights the importance of observational data in providing information for decision-makers that is relevant to the clinical practice setting.”
Have a look at this study; it is very interesting and readable, and brings up lots of questions and ideas. Although this study is about chemo side-effects, and does not include hormone therapy side-effects; I am thinking that a similar study is needed to measure hormone therapy side-effects in the real world.
66 Replies
- I’ve registered but think I’m out but will watch later if I can’t see it tomorrow night
? Re side effects and alternative treatments to relieve those eg acupuncture.
I’ve heard the at least you’re alive comment too. Not much good when my 51 year old self walks worse than my 83 yo broken hipped mother - why don’t they take our discussions re side effects more seriously. No point having quantity if the quality is shite and you can’t hold a job down and you can’t enjoy/participate in “normal” life
@Rosie_BCNA could the link be put on the front page. I only stumbled across it and I’m sure there are plenty that may be interested - @arpie I think the webinar is tomorrow night not tonight. Hope all good with you. :)
- Me too, @Brenda5 - I left it blank too. But it is STATE OF ORIGIN TONIGHT!!!! (Not that I really follow the footy - but hubby will want to watch it!)
I will be watching it later, methinks!!
@kmakm - use any bits from above to explain & back up your question re CBD oil use. They are treating us like guinea pigs & IDIOTS! Just make sure SOMEONE raises the CBD Oil issue!! It is an important question, if they expect more people to maintain their AI treatment.
@melclarity - yep - I hear you! Yes, a heap of the fundraising should be used on the 'Livability' on AI survivors!
- Just registered. I wasn't sure what to put in the supporter name section so left it blank.
- @arpie I couldnt agree more, I think the Oncologists are well aware as are Surgeons of the ongoing problems/side effects of the AI's but theyre only answer is don't take it. I really think it's completely inadequate and I too wonder if they had to live a compromised life due to treatment and AI's would they then do something about it? for such a small percentage??
I agree with @zoffiel I am incredibly cynical after my path of 8yrs, as facts dictate to me, none of it helped before, why will it now? and still I do it because there are no other options. I eat so well and am very active but my Oncologist said that has no bearing on my getting another recurrence or not absolutely zip! remembering who my Oncologist is lol.
I admit Im actually doing ok, on a bad day I take panadol/osteo and keep myself moving. I have no choice in life but to work to support myself. But to the next ignorant person who says "You should be grateful to be alive" I challenge to walk my path the past 8yrs and all the challenges that are faced with no assistance in survivorship to be expected to 'get on with it' and perform like all other people of the community. As @arpie said and I do too, I was PERFECT pre treatment and in both diagnosis I never had lumps or anything...a perfectly healthy person deduced to nothing because of treatment and AI's. No wonder most people dont want to continue and worst still the mental and emotional damage of treatment and AI's is irreversible.
For all the money that is raised, I find it interesting in so many aspects of BC why are we still in the same spot and a little backward? Granted that obviously the answers are in genetics and there are so many mutations it would take a lifetime of research to uncover them all. - Hi @jennyss just registered. Should be an interesting webinar.
Good on you @kmakm and you'll do a great job at representing what so many of us are going through first hand. :) xo - Hi @Sister, absolutely you can submit questions during the live webinar. Your questions are welcome and encouraged. :)
- I'm assuming that we will be able to ask questions...
- I'm pretty sure that I'm registered. That's the problem...I do things early so I don't forget, then I forget whether I've done them.
- I feel like I'm treading water in a dark ocean, fending off monster shark with only a wooden toothpick as a weapon. I can't see the predator but I know it's circling. AI is my toothpick. It's all I've got during the never ending swim for shore.
I loathe the drug and suspect it is not only useless, but my clutching it means I'm spending valuable time focussing on something that won't help me. Or maybe it will. Perhaps I'll be able to drive my tiny toothpick right into that sharks cold eye.
Maybe the leviathan will go and eat something else. I just don't know.
