So there I was at my halfway scan results ( from the cisplatin and gemzar) and suddenly and sadly the Dr has said there are no more treatments other than chemo tablets ( cychloosphide?) left to me now which doesn’t make sense to me having just told me my cancer is now chemo resistant.. I am afraid I was so shocked and upset with the news I didn’t ask that question. I am also hanging onto straws of a possible trial somewhere else.. the Marsden or UCH ? And then I would be on yet another regimen / treatment which may eliminate me from being able to start on it ( if it exists!) Nothing left for me at the christie which is heartbreaking as I love the people up here! I am keen to look at anything now trial or alternative here or possibly abroad however I’m in a sticky way as I find the pain constant now. Hoping the drs at the pain clinic on fri will sort me out! I’m nervous though of the fentanyl patch - will it fry my brain with so much opioid releasing into my blood stream?! Any advice on all the above hugely gratefully received- Thankyou all so much xxx🙏💕
So any advice please..now chemo resistant... - My Ovacome
So any advice please..now chemo resistant...
I am so very sorry you have gone through this, it just doesn’t seem possible that they would say there is nothing else, there must be something!
I’m also not surprised you didn’t ask questions your brain must have gone into freefall.
Can you go back and see them with questions?
I hope you receive some positive support on Friday. Sending tons of love to you. Xoxo❤️❤️❤️
Yes thank you so much for the reply.. I am feeling very odd and filled with sadness especially as my daughter is about to visit. And I shall go back next Thursday with a few questions tucked under my arm. I feel like they have such a good reputation and I still feel relatively young and fit (were it not for everything radiating from my tum!) so it is heartbreaking they only have these tablets ( and low fiber diet) to offer... which don’t sound much of an option! X
Oh dear,
You are in a really difficult position.
If you take a break, there is the fear of your cancer progressing with no restraints, but if you start on tablets, you might compromise any possible trials.
So, my advice is to take a deep breath, make a cup of tea, and take a close look at the Clinical Trials Gateway and see if there is something just for you.
Look for Platinum Resistant Ovarian Cancer or just Ovarian Cancer.
Also, take a look at the Care Oncology website and see if they have a treatment you can try.
It can’t hurt and might help.
So sorry to hear about your situation and wish you could arrange another consult with your prof to discuss options. Bring a list of questions and a friend with you!
Best wishes,
Laura
All fantastic advice thank you. Yes a notebook is essential after so much chemo ones brain cells are definitely too fuzzy to remember everything! Have mixed feeling about Care Oncology but perhaps now there’s nothing to lose...🙏
I am so sorry to hear you find yourself in this position, I didn't know "chemo resistant" was an actual position that you could find yourself in. I am afraid I don't have any treatment advise for you, I just wanted to wish you all the very best of luck and hope you find a treatment plan very soon. Take care xx
Thank you so much 🙏
Hi. Have you seen Jools post below? Might be worth asking a second opinion from this lady unless you have already asked? I wish you nothing but the very best xx Kathy xx
No i haven’t seen Joel’s post I shall try and search ( not terribly good with this site!!) but if not perhaps she will post here if she can?! Thanks Kathy so much 💕🙏
its about Prof Christine Fotopoulu who works at Hammersmith - might be worth getting in touch for 2nd opinion xx
Thank you I shall google her. Is she someone who is good for
Us gals who’ve been told ‘no more treatment’?! X
I am aware of a few ladies who have been treated by her and she appeared on a Hospital TV programme which featured one of the ladies who uses this site. Anything is worth a try and definitely a second opinion is always worth asking for. I wish you luck. Do let us know how you get on. I have everything crossed for you xx Big Hug, Kathy xx
Thank you again Kathy - yes anything at this stage! I’m just feeling too much in pain to travel but hoping that will be addressed at pain clinic soon 😊🤞💕
Hopefully they can get you right so that you are able to travel if you need to xx
H hun im trying to get a appointment with her soon after I finish my cisplatin.put call out today,she was on maternity leave. I heard very positive results with her and I have a good team round me,but always researching all avenues. im thinking possibly more surgery but its a grey area because its seedings etc,im also taking serrapetasse think it has a place! but that's my own opinion.next chapter is a parf for me ca125 coming down , but again I know its the chemo kicking its ass, keep researching every avenue , its does become an every day challenge, sometimes I wish I good switch off, I always get through when im low that there others suffering much more , big hugs & kisses jools.
Hi Jools - I’m to start clinical trial in the morning - ONX - which is a targeted therapy . Will keep you posted. Am in too much pain now which is awful taking Oxynorm and fentanyl patches etc - nothing works that well! Good luck to you - sounds like things are working for you which is great! Love Tracey x
Well forever hopeful, that’s me, must say just coming out of 4th day being able to go to toilet properly is a bonus! What we look forward to lol ! Please let me know how it goes got everything crossed for you, can you get some canibas for pain! 🙏 xx
Oh T here’s hoping you can now think a little more clearly after a little space and get back to see prof J with a list of questions as like you I’m thinking if a chemo tablet may work what’s the difference to IV?
I know you must be reeling and need time to re group and get those fighting pants well and truly pulled on but you will do that I know you will x
Here whenever you need a chat, rant, cry or scream xx
Much love and hugs
Bev xx 💕
Thank you so much Bev - I really appreciate it and hope so much that your treatment also comes through and works for you! X
Sorry to hear this - suspect the tablets are cyclophosphamide - they are used in solid tumour treatment - I’m not a chemist or doctor but perhaps their mechanism of anti cancer action differs sufficiently from standard chemo to be worth being used - I haven’t looked into trials yet but it may be worth contacting the RM or UCH to see if any options - hope that they can get in top of your pain x
Thank you so much for taking the time to reply. The Dr I saw is actually going to call both hospitals to see if there are any options - which is above and beyond I think so kind - and yes it is the tablets you describe and yes I’m rather confused if he has told me I am chemo resistant now... x
Hi Hopefulgal,
The Cyclophosphamide does have a different action to what we’ve all had IV. Don’t ask me to explain it 😶 but the CR site explains it quite well. The drug sticks to a strand of the cancer’s DNA. If you do go on it, you mustn’t have a live vaccine (flu jab ok) as it makes you slightly immunosuppressed. (Do ask docs).
Fentanyl I know of from my nursing/midwifery days and I’ve had it myself with OC when they did my biopsy. It is a good, but powerful drug. The good thing about the patch is that it’s ‘slow release’, so I would think it’ll be ok (head-wise!). The doctors should provide info for you....but it’s hard to take it all in isn’t it.
Really hope you can have a plan soon.
Much love,
Keep hopeful,
Linda xx
Thank you Linda so much...this patch is seeming more and more attractive! And I shall remain open minded about the chemo tablets. The clinical trial angle is also so important and I’m nervous that the cancer is now thickening around the sigmoid colon so that may be a potential blockage now ( I’ve been put ion a non fibre diet now..) so fingers crossed for everything.
Thanks for your knowledgable help! X
Just another thought Hopefulgal....is there any possibility of surgery - to free up your bowel? You’ve probably heard of the Surgeon at the Hammersmith Hospital who will tackle difficult surgeries. Her name is Christina Fotopolou. Some ladies on here have had successful surgery with her.
Linda you’re so so kind to take this time to look into options. Thank you again. I shall ask Dr Clamp when I see him at the Christie again re surgery ( they seem set against further surgery??) and if he knowS her.. I am also keen to look into her myself too. I don’t just want to wait until this wraps around and possibly kills me!
It just feels wrong when the rest of me is so full of life and relatively young! Well enough ranting I just am so appreciative. X
It’s a pleasure.
Yes, definitely worth asking Hopefulgal.
If you have the energy, find out if you can email CF or her secretary.
I think she has some posts on utube..
Best wishes xoxo
I am so sorry to hear this - it is very overwhelming news to get is there any option for immunotherapy I haven't had much luck with chemo I was never NED and tried Carbo Taxol with avastin, avastin alone cisplatin then olaparib so I actually got ascites on olaparib and not sure if there are any other chemo options, have you been offered weekly taxol, this disease is so cruel, research other hospitals trials maybe doctors that use Pembrolizumab the immunotherapy get the PDL1 test if its feasible sorry cisplatin didn't work out its such a hard drug to take. I am awaiting Immunotherapy I am feeling hopeful as not much else has worked. This wasn't offered to me I had to research it and chase it down pester people if you have to best wishes C. xx
Thank you Coksd - I haven’t heard much re the immunotherapy route ( my prof isnt very hopeful himself) but I am going to research once I feel up to it. I am hiding under the duvet right now - I must rally and start putting one foot in front of the other! Thank you and good luck With your trial wherever it
May be x
I know that feeling I know the test is carried out here in Ireland I am going up tomorrow and Il ask the consultant if he knows of where they are using it for ovarian cancer in the UK the drug is also made here it is approved for cervical, one form of lung cancer and skin cancer and maybe a few more but its mainly suitable for people with the high PdL1 status. if you look up oncofocus and immunofocus when you get the head space.
Thank you so much! I shall start again tomorrow! The pain meds are not doing the job so that doesnt help sadly! Luckily have a pain clinic on Friday and between now and then I shall try and get the research done - I just can’t give up...
So very sorry to hear that you are in this awful position, I can’t comment on any drugs , but wanted to send love and the best of luck . Maybe when your brain has had time to let all this sink in , you can go back to professor j and talk it through with him . Take a friend with you . 🙏🙏🙏🙏🙏
Thank you so much for kind response - and yes husband comes ( but we both sometimes don’t hear the same things!!) 😊💕
Hi
The last time I went to see the prof he said you can record your consultation if you wish.
I forget everything as soon as I leave the room . My husband and I are the same , we both hear different things xxx
That’s interesting. My sister comes with me and we have very different views of the conversation!
Hi. My Mum is on a trial at the Drug Development Unit at the Royal Marsden in Sutton. The trial is not OC specific but is targeted at the mutation, so will never come up on any trial website if you only search for OC. My mum is a low grader though so not sure if this will make a difference, although I wonder if there are different types of mutations for HG? We've also searched for this trial but have never seen it 'advertised' on any trials gateway. So I guess what I'm trying to say is that there may be other options which are not widely known but perhaps a second opinion may be able to explore those? Wish you all the very best xx
Thank you so much - lucky mum to have such a caring daughter. I’m looking forward to my daughter coming to see me for a hug tomorrow. I shall definitely ask about this route ie at the Marsden too... thank you 🙏
I know that one lady I follow on IG FK Munro is receiving immunotherapy in Scotland so it is available as trial - might be worth messaging her as she’s stage 4 and declined further chemo - although she has recently had new tumour in lung I know it had shrunk other areas so it’s worth asking x
Wow! Sounds worth moving even further north! Thank you for this perhaps if you could come across the actual trial I would be SO grateful to know what it is...thanks again 🙏
I’ve messaged her so hopefully she’ll let me know x
Thank you so so much. If you want to pass on privately via messaging that’s also wonderful. I am just feeling like time is not on my side from the pain aspect but fingers crossed something will come up...🙏🤞💕
Ok she says it is the mediola trial but it’s full - it is a parp inhibitor ( Oliparib ) plus durvulmab which is a targeted cell death agent - hopefully if your doctor is ringing round for trials they will find something on offer for you- I know that it took a while for Fi to find one that she was suited to and that she didn’t have chemo while she waited as she refused any second line chemo. X
That’s great thank you - sorry the trial is closed ( I just missed out on another recently too grrr!) but I shall not give up.. there must be something out there?! Thank you for your kindness... 💕
I believe there is a immunotherapy trial starting in Truro as my doctor said he would have put me on it if i wasn't going to start chemo again. A big hug. Anne
Thank you if you get to hear exactly what the trial no / name or anything is Anne I’d be so grateful.. funny, I was born in Cornwall and haven’t been there in years...
That is so disappointing for you, Hopefulgal...so I’m guessing the scan results weren’t favourable? The only thing I can think of against a clinical trial is if you are at risk of bowel obstruction- that sometimes rules you out of an otherwise suitable trial.
I haven’t had a fentanyl patch, but I do have a morphine patch, and it is honestly a god send. It’s only a low-level one, but it has knocked out all my background pain.
Vicki x
That is a tip for the day as I have rotten pain and am going to hopefully get something working with a patch. Thank you!
I can't think of much to enhance the advice above but just to let you know that I'm gutted for you and hope something pops up to get the wee divils back under control. 💐😘
Thank you LittleSan - much much appreciated. 💕
Hopefulgal1, I’ve been in exactly same position since first line chemo - told Platinum Refractive as it just kept growing. That was February 2016. 3C high grade serous with mets around liver etc. Last scan reported stable disease.
I’ve been on alternative meds since then. I do not qualify for any clinical trials. If you are on facebook there are a couple of groups I can recommend that give some great information on particular subjects.
Wishing you all the best
C.K.C. - facebook.com/groups/4234777...
Jane McLelland Off-label drugs - facebook.com/groups/off.lab...
Wow you are doing amazingly considering that was back in 2016! This would be great any help greatly appreciated. Do message me privately if you would like? I am so grateful. I would be interested to hear any success at starving cancer at all...
Ps Jan2612 - I’ve applied to both FB pages hope to hear and be accepted soon. X
Hi Jan - I'm also in both the above groups. If you get to the point of creating ' a map' - and you'll know what I mean if you've read any of Janes book, then feel free to message me. I haven't started anything as I'm stage 1 and supposedly could be ok - but I've spent 3 months working on it and can help should you choose to go down that particular rabbit hole
Lynn
xx
Hi Lynn I am looking at all options now ( sorry I know you messaged Jan there am hopping in!!) and I found the book quite over whelming. I am not as intelligent as I think I am or chemo has fried the brain. If you could help
Simplify this for me I’d be v appreciative - I’m about to restart on berberrine at least well just trying to get back on that horse after being knocked back so hard. Thank you 🙏
Sorry it's me - I did mean you - I think Jan looks like she knows what she's doing I got distracted just seeing the devastating news about Lily-Anne and I lost my train of thought ..
I'll send you a message as I don't want to contravene the 'don't post anything alternative rules'
Lynn
x
Hi ladies, sorry I didnt reply straight away but was distracted by other sad news.
My story is too long but both those sites are the alternatives I’ve used. I think Jane and one other member in that group have provided the “metro map” she mentions in her book. If you use a tablet or laptop rather than a mob phone - if you type ‘Ovarian Cancer’ in the search bar on her page - you should get a fair bit of info that way. Although I understand the thinking behind it - I personally follow a less severe or extreme diet plan. Eg I’ve cut out adding sugar and watch sugar intake and also watch the type of fats I include....but thats been it.
In September 2017, I added CBD/THC. The other group provide excellent information about ratios / dose and type of product (warn against th not so good) etc. They too have a protocol for Ovarian Cancer - again if you use the same search term inside that group you will get info you need. The admin (and members) are really helpful.
Lastly, but not least, there are a few of us ladies that have our own very small group on Facebook especially for Ovarian Cancer ladies / (carers) who are interested in looking at, discussing or trying alternative medicines....honestly, without judgement. We then try to feedback any results good or bad. We dont claim to know the answer but we’re certainly not ready to be written off. Anyone who fits into that category and might be interested in joining - you’ll need to send me a friend request on Facebook as it is set up as a secret group. I think there maybe one or two members that might post on this forum too. I’m Jan Hayes on Fbook....and have an ovarian cancer cover photo.
Hope that helps a little bit x
Wow Jan that’s all so hopeful - and as you say we are not ready to be written off! You’ve inspired me to try and sit up and start again ( just need to sort pain out though it muddled me..) and thank you again. I shall def look to you on FB. X 🙏💕
Hope you do find a suitable trial. It’s a shame the cisplatin & gem didn’t work out.
You can probably still start on a trial even if you begin the tablets as it usually takes a while to jump through the hoops and usually i think it’s 28 days from previous treatment. Worth checking anyway.
Good luck.
Yes I’m going to ask the Dr at the next clinic I’m seen at x thank you - it all feels like time is not ‘ on my side’ right now but I have to absorb the news and start researching yet again... it’s a hard thing to do when I’m in pain now. Thank you again so much 🙏💕
I am so sorry to hear this news, I don’t know anything about what trials are a available, you need to get them to get the pain under control first, then you will hopefully have the energy to research what trials are available to you.Sending you virtual hugs
Ellsey xx
Thank you so much Ellsey. Yes my mind can’t focus when I’m in this pain. So hope they sort that...
So sorry to hear this. I know quite a few women in USA on Inspire site, ovarian cancer string put up alot of information on what treatments may be available when we become chemo resistant. You may want to take a look. Here is one link but there are more.
inspire.com/groups/ovarian-...
You just join and become a member. Most of us don't use our real name. You can find alot of information just typing it in to search box on ovarian string. Some of trials are in UK and Oz but not all. Sending big hugs from Australia
Thank you Tara - yes I am also on Inspire. Great website but just exhausting trying to find anything that is actually workable for us here in the U.K.? They seem to be way ahead in terms of treatments ie at NYC hospitals but all Medicaid etc so would likely cost 100’s of thousands of pounds for treatment? I would be prepared to put house on sale and savings in as would husband but not sure this is a valid idea... right now
I can just stagger over the road for a coffee!! 😬 thank you and loads of luck and wellness to You x🙏
Hi again. Yes. I find USA and partly UK and Europe I think also way ahead of Australia! I can't get parp inhibitor on script until after 3rd recurrence! Otherwise it is about $80,000AUD a year! But maybe a clinical trial may help you if it's possible to get on a suitable trial. Holding hope for you, Hopefulgal. Big hugs.
Hi Tara108, Dawn here from northern NSW, I was told that oliaparib is available on the PBS. Haven't had it myself, had a trial one which worked for 7 months. Worth rechecking with your team. xx
Hi Dawn. Thanks and I will check it again but I think it may be just for Brca 1 and 2 women. My oncologist told me it wasn't available for me 2 weeks ago. Nice to meet you here on the UK site. What part of N. NSW are you? I'm on N. Beaches of Sydney.
We're about 70km south of Coffs Harbour. Used to live at Berowra though!
I believe I read that some of the parps are considered to be effective with some non-BRCA patients, I don't have BRCA but HRD.
I am on a phase one trial which is for solid tumours in general rather than for ovarian cancer so worth asking about these. I am platinum refactory or resistant
Thank you Neona - I will ask about this too. I have a list of food questions now : praying it gets somewhere..🙏💕
Whoops apologies for auto correct I meant “good”! Which trial are you on and where may I ask? I’m feeling like we may be prepared to go anywhere now..! X
It is called the Patriot trial and is the drug AZD 6738. I have been stable for 14 months but have scan tomorrow. I believe there are trials for this drug in combination with chemo as well.
I go to the UCLH Research Facility and travel from Cornwall fortnightly
I take my hat off to you to travel up from Cornwall.. you’re amazing!
A devastating bit of news, but it seems that the ovacome support group has come up with lots of questions and suggestions for you to take back to your team. Hang in there. There are also trials not specifically for OC which might be helpful for you, e.g. there's one at my hospital on cannabis for nausea management.
Sending virtual hugs. xx
I’ve no advice but I wanted to end a 🤗
Thank you 😊 I just want to say I LOVE your ‘tag’ name Woolyhat - so mAde me smile! X
I was wearing one at the time I set up the account in the depts of winter. It seems quite symbolic, looking at it now. Woolly chemo brain, etc! My keyboard was set to USA at the time, hence the spelling!
I love your Hopeful Gal too. Keep that hope going.
Hi Hopefulgal. So sorry to hear of your predicament. You’ve had lots of great advice. All I can do is send you love and virtual hugs and my hope that you find the best way forward. Jo 🌺🌼🌸🌻🌹
Thank you so much everyone here has been so kind to leave comments x
Also love and wellness to you too! Thank you again xxx
Ouch, that's tough news. First you need to get some pain relief though, right? In order to think straight and research your options like trials etc.
I hate not being able to help. Can just send warm thoughts and virtual hugs and tell you 'it will get better again'. Hugs, Maus
Dearest Maus thank you so much for your message. You touched on this situation totally right. I can’t focus enough to get researching. The pain clinic is tomorrow and goodness - did t realize how much I’d be looking forward to
Getting this sorted! Then I need to find a wee little miricle - any tips re clinical trials for overtreated women gratefully recurved!! 😁 but seriously thank you for taking the time to Send this Message xx🙏💕
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