just thought I share some of info as it sucks that women have to go through unnecessary chemo when it clearly isn't going to work.
unfortunately it's not uncommon to get oncologists from 'stone age' so I would like to encourage everyone to do your own research AND get second or third opinion before accepting new treatments.
I'm not working for any of these companies, so please don't think it as a promotion of any sort.... I'm just an engineer and a single mum to 6yo girl. I am looking into all possible new treatments to ensure I am here for my daughter as long as I can. and not spending months in hospitals but actually enjoying and sharing life with her!
this just a little bit I'm looking at. there's a lot more going on...
Hi there ,thank you for posting this. My problem is I feel as if I am between a rock & a hard place.
I am on my third line & because my ca 125 is high I was happy to go on my new treatment because I am worried the cancer will get out of control if I stop it.
when I research Google I am not alway impressed with what I find. I have notice you have added 3 different websites at the end of this page so I will try them.
As for asking for a second opinions that could take a long time & I might not get the opinion I want to hear & be back at quare one.
Next week I am going to ask about PARP trails but I am sure they will say no. So far its no all the way.
I do believe being knowable is power it keeps us in charge of our oc. I do feel we have to keeping looking for things that might help us but it's not easy. I find some doctor's are the problem. Take care Cindyxx
I bet a lot of us feel this way naturally, or are we made feel this way?
lots of us suffer 'chemo brain' but are we? is it actually chemo or is it depression because we are made feel 'terminal' like I saw here some women referred to their cancer?
if anyone tells you it's terminal - get them to write it down and take it to your life insurance company. firstly, I doubt any oncologist will actually do that unless you are in fact not suitable for ANY treatment and secondly, I bet insurance company going to put that doctor in their place very quickly.
PARPs got a break through only very recently, so all your previous Nos are not valid anymore. change your doctor if they are not up to speed with latest news.
second opinion must NEVER take longer because it's not sort of treatment that can wait. second opinion must be from unrelated specialist and specialist that actually took part in something else other than 40 years old chemo treatment.
there's so much going on, and even in USA they accept some patients from outside for free, providing that patient covers they own living expenses, of course.
if nothing worked, why do they not refer women for ProSigma test at Royal Marsden? ask if you oncologist even knows about this test, have they ever seen the report?
this test might give answers that save life. definitely after 3 lines of chemo I believe we have the right to have that test on NHS.
it makes me sick to think that people at disadvantage have to miss on treatments that prolong their live if not saving it. people who can't use internet to do research (and lets face it average age of 65 for this cancer suggest that a LOT of patients can't even google properly) or people who live remotely from good cancer hospitals, or people who trust their doctors and accept the fact that nothing can be done.
one more website I add is onclive.com
if has a LOT of video you can listen or read, a LOT of latest information and it doesn't take long to get used to the jargon.
knowledge is power. feeling empowered helps to boost your moral. high moral helps you feel better. by feeling better you feel like you are living and not existing between hospitals visits.
after all, we have the most powerful weapon at our disposal - our brain. for some it takes form of God, or medication or factual knowledge. Whatever gets you through the day...
Hi SmileNwave, thank you for your reply. I will ask them about this test, prosigma, can't say I have heard of it.
Shockingly it took them over a year & a half to get a BRAC test in the end I was getting really upset. It was negative. The lady that was suppose to take my blood kept making excuses. In the end I kept nagging everyone even the chemo nurses till she reluctantly did it.
Don't get me wrong I think I am getting the right treatment from my onc's compared to what the ladies are offered on here at times but they don't seem happy with all my constant questions. I think they feel I am just nagging but this is my life not theirs.
I am going to get my daughter in law to copy your reply so I can take this with me for my next onc appointment.
At least I am very lucky because my daughter in law will back me up because she wants me to live as long as I can.
I am a older lady & like you said we can struggle with technology. Thank God I have my son & daughter in law to help me or like some I would completely be in the dark about this cancer. Thank you again take care Cindyxx
best of luck. I will never get tired of reminding cancer patients that YOU are the most important person in the room and no one else.
not many doctors enjoy being cross examined and used to people listening to them without understanding a half of what's been said, never mind questioning the approach.
of course not everyone has access to even support groups, complimentary treatments and news.
I struggle to find time to do it between my treatments, work, home, daughter, school, friends and life in general. so when I have a coffee break I come here and try to help.
or search news, or listen to onclive.
I did contact some of the drug manufacturers directly for clinical trials and almost always for replies.
a close friend of mine just been diagnosed with pancreatic cancer so I try to help him too....
anyways....
ProSigna is done on NHS too when all treatments have failed.
Hi SmileNwave, thank you for the information it's sounds as if you have a very busy life.
I have heard of Nano knife & Cyber knife watched something on the tv but chemo brain doesn't help because I can't keep as much information in my head as I once did.
Its amazing you are looking out for poeople like us thank you take care love Cindyxx
I go to the Marsden intermittently and don't know what the pro sigma test is either...also my experience of American hospitals, not to do with cancer admittedly.. has not been of them wanting to do anything free(!)
Am not sure anything is straightforward. Make sure we all
I'm sure they do. but I'm also sure they have their opinion that is hard to change.
immunotherapy was around 20 years ago and they kept hearing it'll make all the difference but it still hasn't so a lot of them are still sceptical about latest achievements.
it's natural to have your own opinion but if it doesn't work for their patient, they need to recognise it and OFFER second opinion from a different specialist.
both Target Ovarian Cancer and Ovacome have wide-ranging information about current clinical trials, support groups and also offer specialist nurse support by phone:
-there's a lot that you say that I agree with such as the importance of being empowered to work in partnership with your medical team, seeking a second opinion at optimum points, being informed, not being defined by medical terminology and understanding the emotional effects of diagnosis & treatment. However, there are also some strong and sometimes contentious claims which I think I would have found disconcerting at points in my diagnosis and treatment especially when most vulnerable despite respecting that they are your opinion.
Sx
(PS I can only find reference to a ProSigna test being for breast cancer??)
We have had different experience based on which we have formed our opinion. and I'm only expressing my own. I'd be happy to have never seen or heard or read things that made me form my opinion they way it is. It d mean we live in an ideal world. Unfortunately we dont.
I was and still am treated privately and i see a world of difference between that and nhs and its not good.
My onc seen reports of this test so i believe its done for ovca as well. Reference also implies that its done privately but it's not...
on clinicaltrials.targetovaria... search for PARP shows that there's no open PARP trials in the UK, all closed and no 'soon' ones. this is not true isn't it MOLTO trial is missing for example.
on search for 'ovarian' it shows only 6 open trials in the UK.
I might be wrong but clinicaltrials.gov is never wrong. it lists a LOT more open trials in the UK alone.
and I couldn't get interactive map running either btw.
on ovacome.org.uk search for my particular filters didn't come up with much meaningful information either... perhaps only CTC-OV04 which hires from Addenbrooke's Hospital ONLY.
I hope phone support is a lot better than online search engines.
I am a bit tired of big statements of 'wide ranged information' a lot of places claim to provide, when it only take a little scratch on the surface to see that it's still is bare minimum. all legwork is still down to the patient.
I've just been reading in Target's newsletter that their Clinical Trials Centre has been re-launched. It would seem following a quick click-through that the interactive map is now working so was perhaps down for maintenance when you tried to use it.
I have personally found over the last four years (since treatment) that Target OC are incredibly wide-ranging in both their support and response. They are always keen to hear from women and their families and I'm sure would be receptive to any constructive feedback. Sx
It doesnt really matter what I've had and how it worked for me. That job is done in studies over hundreds of women and statistics are what's important to know.
What really matters is that patients are given full information and alternatives including treatment under different specialist. After all the only job of any health provider is successful outcome and not proving that what they believe is right.
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