Hi everyone, hope you are all feeling well. An update from me.....
Had the follow up CT scan and the rotten beast is back with avengence!!Been told by oncologist that this is now with me till the end. As it came back in a matter of weeks, it's a strong aggressive strain that's surfaced in the peritoneal lining and pelvic lymph nodes are swollen! Told the kids to enjoy whatever amount of time we get together as it will be treated but will almost certainly come back each time therefore aiming to keep a longer remission period in between each bout.my body needs time to heal in between and that will determine how long I can survive and fight this witch of a disease. I feel great, healthy slight tummy ache? Ggrr am sooo angry I cry one minute and laugh the next...feel like they're talking about someone else most of the time...awaiting heart monitor and start caelyx soon as ...gutted is an understatement!!! X💕
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Angie-69
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Sorrry to read this -can you get a second opinion at somewhere like the Royal Marsden or Christie’s in case there are better or different options available to you - because of the short remission I’m assuming they’ve said you are platinum resistant so it might be that one of the specialist cancer treatment centres might have other options not available locally such as the Rotterdam regime - wishing you well x
I could only ever stomach the teacups as a kid so just want to get off right now or else bury my head in the person next to me’s lap till it’s all over - hope the next chemo gets you into longer remission and isn’t too bad-x
So sorry to hear that Angie and I can understand you feeling gutted with it recurring so soon, sending you massive hugs! But it sounds like your team are on the ball and hopefully this next lot of chemo will be more targeted, and more effective, and get you many many years of remission.
It’s so hard when you have kids and dealing with the news (my kids are 12) but mine have actually surprised me with their resilience. This is the cruel thing with OC in that many of us get no symptoms and we feel so well which makes it even more difficult to comprehend...however it’s good that you do feel well and that will stand you in good stead for your next lot of chemo, I’m sending you all the luck and tons of positive thoughts 💖
Oh Angie .. sorry to hear this. I am also in process of recurrence but it is a slow one. I do know how you feel...I am so well just now, doesn’t seem real xx
I keep waking in the morning thinking...its ok they screwed up..im fine can't be me!! So sorry you are on the same rollercoaster....i hope you're ok xx💕
I also recurred very quickly after frontline and was offered caelyx. I decided to get a second opinion and paid for a consultation at the London Clinic. I was immediately referred to the UCLH Research Facility and am now on a phase one clinical trial called Patriot. I have had 2 scans so far which have both shown stable disease.
So sorry to read your news, Angie, and feel for you so much. Good luck with the Chemo and fingers crossed for a long remission afterwards. It's such a shock to be told you won't be cured. I can well remember how the world seemed to stop briefly when my old Oncologist brutally told me that "there's no cure" when I asked what would happen if it came back again. I just remember my husband grabbing my hand and hanging on to it in shock. We were stunned. Well, that was eleven years ago, I'm still here, have had two lots of Radiotherapy, and am about to start my fourth line of Chemo, so don't despair. Sending love and a big hug, Solange 😊
Wow your reply was inspiring...ty so much it's so great to hear how long ago that was!!! Amazing 😍I love reading these kinda replies it gives me hope. Ty for that , much appreciated....may your journey be even more successful hun...fingers crossed for you xx💕
Oh Angie, I am so sorry. It is just like a bad dream - that if we could only wake up and all is well. I second the advice on seeking out trials, don't give up hope. Sending lots of healing energy and sweet time with your babies. valerie xx
Hi Angie, So sorry to read your post, just would like to try and give you some encouragement when I was diagnosed I was told that I would not last 12 months that was 4 years ago, it's not always been easy my history is as soon as I go off chemo it starts up again.
Now on my 6th treatment Carbo/ Caeylx I have also had Caelyx as a single chemo with good results. A second opinion can also give you piece of mind about the treatment you are offered.
Wow Lorraine you have had a tough time! I hope you get a rest from this evil disease. I wish you well for the future and hope you keep in touch with your progress xx thanks for your inspiring words 💕
Angie: You are living what too many of us are living and the rest of us live in fear of. I'm coming up on the appts that are going to tell me whether my cancers are back and to what degree, and yes, it's unreal to even think about. I completely relate to you saying you feel like your doctors are talking about someone else. I think it is only just now hitting me that I have two cancers and they aren't likely to go away and just what does that mean exactly? It will be a year on June 19, and I'm telling you the reality of all this is only just hitting me. Sometimes I feel like I'm always somewhere between absolute panic and total peace. It's very strange. You sound like you have an AMAZING attitude and I hear your sense of humor, and I feel your despair, and I LOVE your hair! All markers for success, I say! I am SO sorry that you have to go through this and I can't imagine what it must be like to have children in this situation. It's unfathomable. Second opinions can't hurt, stay active in your care (you know you better than anyone - even your doctors!), and please don't ever be afraid to be afraid and reach out. I'm right here with you, holding your hand all the way from the great state of Texas. There is strength in numbers and power in love!
Wow ! Thank you so much for your care n support CynD...so sweet xx thanks for the compliments too...brought a real big smile to my face ! 😁 I wish you strength health and happiness for the future in sunny Texas.. .take care x💕
Hi Angie I am in exactly your position finished first line Chemo January 2018 with a great response Ca125 dropped from 6000+ to 18! But now the beast has stirred again and CT has confirmed recurrence! Like you it’s disbelief and almost feels like an out of body experience! My tumour is like cling film around my bowel so I have been accepted into CEBOC trial at the Christie alongside weekly Taxol which I start on Monday! (See previous post for link)
I am truly hoping this will but me a much longer remission time and I can get on with my life instead of constantly having to attend to this very unwelcome guest I have that’s called OC!!
Not sure if CEBOC would be right for you if your bowels aren’t at risk but worth a try to mention it to your oncologist?
Keeping everything crossed we can both get this beast to sod off for a while and give us some peace and quiet!
So sorry to hear the news. I am 3 c and was told my disease is very aggressive. I responded dramatically to the chemo and now am on avastin maintenance treatments until Dec. My oncologist told me in March my pet ct was NED but I could not even celebrate. I was so relieved I had been given a reprieve for now. It is a shadow that hangs over us all. I would get a second opinion as previously suggested.. I have made a load of lifestyle changes ... I am trying anything to limit its return. Sending you and your family loads of hugs.
Thanks for replying Shaz, can I ask what life changes you made and did they make a difference? It's so cruel the way it hangs over us like the grim reaper!!! Hopefully soon we can kick him into touch x💕
Angie--I have heard so many stories of women who were told it will just come back when done with each treatment, then a different treatment is tried and they get a longer remission (or are still IN remission). I am one who does not want to get my hopes up too much because the "fall" is extreme for me if it doesn't work, but my doctor was talking to me about vaccine trials he is doing and actually used the word CURE---not for me necessarily, but saying these new treatments they are having trials with are showing great promise. I hope they will try something slightly different for you that may knock back your particular strand of the beast for a long time---and I agree about a second opinion and never say never!
Wishing you luck and hope you keep us posted. oxox Judy
Thanks so much for the advice Judy. Will keep hoping for trials to open up for me...just been told am starting caelyx on Tuesday if heart is up to it...so nervous to get back on this crap wagon xx💓
I'm so sorry to hear this I am in a similar situation but like Coldethyl recommended I think I will try this hospital it has great reviews and some positive outcomes. I went through chemo carbo/taxol with avastin ca125s still 181 were you on avastin at all. my current onc is not helping much so I am trying for opinions from other hospitals. It is so hard to deal with. Keep positive xClare
Hello Angie - I read another one of your posts where you say that they have told you, you would not survive an operation........did they explain why they thought that to be the case? I also have peritoneum deposits but have been told that chemo and laser treatments are options. I am hoping for chemo op and then more chemo, I am much older than you, and have not been told of such a negative outcome.
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