Hi everyone, just saying a warm hello to the community. I'm in the Stage 4C incurable platinum refractory club - a really rubbish subdivision of a club that in any event no-one wants to be member of! I was diagnosed with my 3rd hit of OC in December 2017 following emergency hospitalisation due to a collpased lung at work. I spent most of last year on various chemotherapy regimes, interspersed with a second chest drain and pleurodesis procedure which so far has stopped the cavity refilling. I have disease on my liver capsule, diaphragm, outer stomach lining, various spots in my abdomen & a large tumour in my ileum. My weirdest 'friend' is a large chest well lesion which has invaded one of my ribs and causes me more actual pain than all the others. I'm now on Letrozole as well as pain medication. I also have psychological support from my palliative care team to help with my feelings about what is now a very, very short life. I veer between being obsessively active and fun-orientated (I am mercifully still on two legs at the moment) and utterly devastated, tearful, heartbroken and terrified. Today is very much the latter - hence my visit here, to reach out to some online potential friends and send warm thoughts to you all. Xx
Just introducing myself : Hi everyone, just... - My Ovacome
What a sad introduction!
But welcome to the forum.
Please give us some more background in your disease journey.
Where are you located?
How did you discover you had OC?
What treatments have you endured and did you get any respite at all?
Have you tried and received a second opinion for your options now?
Every experience, no matter how good or how bad, helps us all.
Hi Laura & thanks so much for your reply. I live in London & am being cared for at UCLH
Macmillan Cancer Centre. In brief my history is: mature teratoma on left ovary in
2001 resulting in left salpingo oopherectomy. Tumour contained a small malignancy but
was contained so no further treatment. 2012 - large stage 2C malignant tumour on left
ovary resulting in total abdominal hysterectomy & omentectomy. Received 6 x carbotaxol
and 2 years' follow up scanning. Recurrent cancer occurred outside of scan window
hence was not detected until my collapse in December 2017, by which time it had
metastasised as stated. I received 3 x monthly carbo-caelyx but growth continued so
then went on to weekly Taxol. This was suspended briefly for my chest drain (3 litres!)
pleurodesis & recovery. My November scan effectively
showed stable disease and so I
went onto Letrozole. I am BRCA negative so I'm not eligible for PARPS etc.
My next scan & clinic was to be in March, but I've been suffering
from a lot of pain and
discomfort in my chest so was CT scanned today pending possible palliative radiotherapy. I am, of course, terrifed that this scan will show that the hitherto
relentlessly trotting horse has decided to break into a full-tilt gallop - all we can do is to
keep everything crossed that the inevitable has not yet arrived....
I did go to another hospital for a further opinion on a self-pay basis. To be honest I didn't
myself find it much comfort - but I really think that it's very important to have one
nevertheless, as even that consultant had a further treatment idea (possible
reintroduction of carboplatin on the basis that apparently some people can 're-sensitize'
- though my understanding is that this opinion is not shared by all consultants). The
main reason that I wanted a further opinion was really to have as much time as we
wanted just to talk, ask questions, get 'rookie' explanations but without taking up
desperately valuable clinic time on the NHS. It didn't really work out in my particular
case, but I don't think that means it was a bad idea per se.
My options now appear to be - hope that the Letrozole to give me a little bit more
progression free survival, keep a close eye on clinical trials, and (like everyone else in this
horrible situation) keep everything crossed that I buck the stats.
Sorry for the lengthy reply, but I wanted to try and deal with each point in your kind
A big hug back
Hi Middz. You have certainly been through the wringer! Welcome to the forum, a place none of us want to be but you will find great support here. This is a place to rant, rave, pop in for a shoulder to cry on , anything really and someone will always reply. Glad to hear you are having a better day today. In the meantime I'm sending you a virtual hug, please do visit whenever you have any questions or as I said before want to let off steam or basically ANYTHING! xx Kathy xx
Hello, it is nice to meet you albeit under sad circumstances. I empathise with the fear and hope you have more days of activity and calm than horrible times. We are all here for you and sending positive vibes. Are you looking at any alternative opinions/options and are you getting lots of support? I am still waiting for big op. , next week, but have found the people on this forum a great comfort and I hope you find the same. Feel free to pop in anytime and get virtual hugs, love and new friends.
Keep in touch
Hi short friend - thank you for your kind words. I'm afraid that it has taken me a few days to be able to sit and reply to the many, many incredibly beautiful, kind and supportive replies from the amazing women on the forum - yours included. I did go for a further opinion - it wasn't that helpful for me, but I still think that its important to consider doing so.
As well as my 'standard' meds, I've been taking a supplement called Ashwaganda on the basis of a lot of reading and research into its anti-angiongenic abilities. The jury is out, but on the basis that my treatment options are very limited and it is doing me no harm, I am willing to keep going with it!
I hope that your op went well, that you are feeling as comfortable as possible and are being looked after (including lots of treats when you feeling up to them!). Each time I've been in hospital I've been looked after so brilliantly by our wonderful NHS staff, so I'm sure you will have been too.
Sending you virtual hugs
Hello and welcome - you certainly have been through the wars - hoping that you have a better day today - the emotional swings are one of the hardest parts of this diagnosis I think - you get told to make the most of life at a time when everything seems to make that almost impossible - hope that joining the forum can offer you some support from those that understand what it is like to be in this place x
Hi coldethyl and thank you for your kind reply - yep, the emotional swings certainly send you on a roller coaster don't they? I guess that there is simply no way of truly coming to terms with the vastness of this situation - sometimes I feel like I'm locked on a boot-loop where I'm receiving the devastating news over and over again. But getting out and doing as much as I can, for as long as I can, really does help - sometimes distraction is the only thing isn't it?
Sending you hugs
Hi Middz, welcome to the group - you will find so much support here - there is so much experience to be shared. I, too, find myself veering from one extreme to the other emotionally - some days I think I should train for a marathon, other days I don’t leave the sofa!
Never worry about subject matter if you have a question - no subject is taboo here!
Best wishes to you, Ali x
So sorry to hear you are having such a hard time, Have you had a second opinion I am stage IV I was diagnosed with bilateral plural effusions in Nov 17 then went on frontline carbo/taxol and avastin I recurred under 6 months and was deemed platinum resistant but went else where and got cisplatin my markers are dropping and I have 2 more treatments to go. I also got the immunofocus test to check my PDL1 status and it shows I would be suitable for immunotherapy I had to get this done privately and pay for the treatment privately too. They used my biopsy from the plural effusion to check do the test. I hope you can find other options. best wishes xx
Hi I think if the PDL-1 levels are over 50% that there is a good chance immunotherapy should work I am not certain of all the criteria for it. Some patients can also react well to it if its lower than 50% but its expensive. The one problem is it isn't funded or licensed for ovarian cancer so accessing it may be at a high cost. I only found out about this myself when i had a recurrence in September as it wasn't made known to me on diagnosis although I was diagnosed at stage IV 14 months ago. I still went ahead with second line chemotherapy while awaiting the results of the PDL1. There is also an oncofocus test that uses targeted therapy. These tests cost €1800.
Its best to find an oncologist who may run the test or look over your patient file maybe discuss it at their MDT to see if you would be a suitable patient.
That is great news and its a hopeful option that you are suitable, did you also try some complementary therapies I have done reflexology from the start and also did yoga classes in between treatment and I find it helps with staying positive at what can be a very daunting time. Positive thoughts xx Clare
Hi HopefulGal Glad to hear you are giving cisplatin another go its a tough drug I have 4 done and its hard but CA 125s are going down still only showing signs of platinum sensitivity. I approached a private hospital after hearing of oncologica and immunotherapy I posted a link above to the post. I had the test and my PDL1 levels were high enough to be suitable this isn't funded here for ovarian cancer so I will have to pay if I go that route. If you had an original biopsy as diagnosis the testing oncologist should be able to access your slides and run the test. The oncologica tests for mutations and tries to match up targeted therapies. I have 2 more cisplatin to go so I am not sure what percentage I would need to have a CA 125 or ct reduction in disease to be suitable for orlaparib but it was mentioned at the start of the cisplatin single agent treatment. So I think if the PDL1 is over 50% it shows a good sign that immunotherapy should work but its best to get an opinion from a treating oncologist that works with this immunotherapy and they can look at your case overall as opinions can vary greatly in my experience. I should know in a few weeks what route I will be going. Best wishes and keep in touch I will let you know how its going. xx Clare
Oh Coksd - I wish you every luck in the world. It’s a bloody tough drug this - and I’m only on 50%! So I really take my hat off to you for doing it for so long. Really hope the ca125 has dropped for you. Yes I am also hoping that it could change my options re parp inhibitors if I can get back to platinum sensitive. Always knocking on doors hopefully aren’t we? Many thanks for posting the above - with love x
Hi Coksd, Nikkibaillie & Hopefulgal - thank you for your kind reply & the really helpful information it contained. I'm so sorry that you also are in such a dreadful situation but am so inspired by your level of knowledge and insight into your disease. I haven't to my knowledge had by PDL1 levels checked and have so far been excluded from PARPs because I am BRCA negative. Like you, I became platinum resistant so have not had any more platinum based chemo - though my second opinion in December suggested reintroduction to see if I will resensitize - I intend to raise this in clinic which is coming up soon. For me, CA125 has never been a useful marker - I think I've only hit three figures once in all the years that I've been tussling with OC - but I will definitely now look into the Oncologica tests and discuss cisplatin and immunotherapy with my consultant.
I really hope that your levels keep moving in the right direction....
Hello Middz - what a rubbish time you are having! I am a newbie on here joined in June 18, although I cannot add any advice on your diagnosis, I can assure you that this is the nicest forum that you could wish for, it is filled with lovely ladies who although they have there own troubles and horrendous treatments to contend with, will always take the time to answer your questions if they can, or just extend the hand of friendship and un-wavered support. We have all experienced the exact same emotions and will always be here to share your journey. For me this forum has kept me sane during an emotional roller coaster. One piece of advise that I will pass on to you from a lovely Oncologist is " forget statistics we are all different" no one knows how you will respond to treatment. Stay positive and be prepared to fight! Take Care xxx
Hi lyn1987 and thank you so much for your kind and inspiring words. Yes this site really is such an amazing place, full of kindness, support and also a huge amount of knowledge and experience too - I hope that I will be able to contribute too, even if only to extend a virtual hug to others just as you all have to me - knowing that there is someone out there means so much doesn't it.
Welcome to the party 🎈
Sounds as if you feel worn down by the system but it’s not insurmountable. I was given my orders to tell my family and book my final party at the nearest cemetery which I duly did. Along with screaming, crying and acceptance in January 2018. I’ve just crossed the line into the second new year I wasn’t supposed to see. Honestly not one of the medical predictors are God.
It drags you down on bad days and some of those I’ve actually thought ‘hey shine the white light this way, I’m done’ then I think of ghost and wonder if I’ve been naughty enough to go the other way so I think hang on let’s wait and see.
I’m topped up with so many pain killers some of which make me very groggy.
OC is scary but it doesn’t have to be lonely. I’ve posted here in the middle of the night crying so hard I can’t see the screen. The next day the help and comments are like a thousand hugs and I can’t help but feel better. We’re all here for you. It’s much better shared
Hi Lily-Anne - I am so sorry that you're here in this club, but thank you so much for your kindness in taking the hand that I extended into the virtual darkness, like so many others here. I was absolutely overwhelmed by the speed and number of beautiful replies to my rather desperate reach-out - it truly is humbling and I just hope that I can contribute in some positive way myself. I am so glad to hear that you are giving the middle finger to the stats - like you say, everyone is an individual and I guess even those little percentages have to happen to someone huh?
Sending you love and hopes for many many more naughty days
hello, your reply to Middz was lovely and supportive and gave me a feeling of being understood and supported, even though it wasn't for me! Please continue with your positive responses and kindness as you can see it helps others. Hope this message finds you having a good day. Lots of love and good vibes! short friend xx
Middz, Have you been able to get 2nd or third opinions? I have had some of what you describe and it has been eliminated. Honestly, please, for your own peace of mind, get more opinions. For example, there is targeted proton therapy that can be focused on specific tumors to kill them non invasively. I've had my diaphragm ablated which removed all tumor on the outside. How your chemo is infused is also a factor. The list goes on. There are ways to eliminate parts of your disease. Don't give up! Yes, I know, easier said than done. Gentle hug across the water.
Hi Tesla_7US and thank you for replying and with such helpful information - I have had a second but not a third opinion and at the moment joint wisdom is that there's so much widespread disease that options are very limited. But I haven't talked about proton therapy or ablation so I will take your advice and find out more. I'm so glad that you have had some success with your treatment and hope that this keeps on going.
Gentle hugs back
Hi Middz. Welcome. I am 4C too and can only echo what others are saying about this wonderful forum. Even in dark days and nights when your mind just can’t stop thinking of all the what ifs there is usually someone posting uplifting and inspiring posts or reassuring you about treatments, whilst understanding the emotional ups and downs. It’s like being able to have a good weep to someone to help you on your way again. Pop in anytime and you’ll always find new information and support. On the good days there’ll be things that make you laugh out loud!
Hi Cherly & thank you so much for your lovely reply. Am so sorry that you're in the 4-club too - it truly sucks doesn't it (that's a huge understatment I know)..... Yes, this forum really is amazing - I've been truly moved by the amount of kind and supportive replies that people have been kind enough to post. I hope that I'll be able to contribute too- even if its just with a kind word and some gentle support...
Hello Middz. I think we all would rather not be part of the club as you rightly say...but here we are. I don’t understand how it’s happened some days either! But please take time to check in here.. I do most days - and it’s amazing what love support and understanding you will find here. I even got a tip off about a clinical trial that my oncologist in London didn’t know about.. also I so hope you have family to give you support there too?
Sending love and a virtual hug 🤗 to you and just keep on putting one foot in front of the other. ❤️
Hi Hopefulgal1 & thank you for your kind and warm reply - yup, just putting one foot in front of the other right now, but even doing that is a positive thing isn't it? Like you, I've already been given a few really interesting bits of information re treatments etc - amazing - and every reply has been so kind and supportive, it really is like stepping into a room and having everyone turn around and say "hi, come on in and take a seat!"
Hugs to you
Welcome Middz--so so sorry for all your pains, invasions, hospital stays, lung collapse--my goodness, it sounds like your bad days are well deserved but your good days show you are still very capable of having them. Obsessively active and fun oriented is amazing. I love this group and hope you find the same comfort, help and support many of us--and definitely I-- have had, and keep having, here. Sending hugs and hope. oxoxox Judy
I have been fighting the last 3 years with a 3 C diagnosis. I really believe attitude is everything. Yes it's not a ride any of choose to be on. But like with any living you take the good with the bad. We all have an expiration date. We just know ours is nearer than most. Which I believe makes life sweeter because we don't take any wonderful moments for granted. I know for me meditation really helps especially on the harder days. Sending hugs and good vibes your way. Lori
So sorry for what you are going through. You have joined a very supportive and informative group. From all I read on this forum...hope is out there. All new treatments are entering the market hard and fast. Just hang in there as best you can. Enjoy your life and please do not give up hope. This is the best place to have a cry or to just voice your fears. I was terrified at first and now I find such comfort from everyone's encouraging and caring words. We are here for you!
You are so very welcome! For me, just knowing that I wasn't the only person on the planet going through this made a great deal of difference for me. We learn from each other and we comfort each other. The main thing is we all have great hope and faith that we will beat this one way or another. Stay strong and believe!