It's back

[Friscok12]

Finished chemo in Feb just been told today fluid in my lungs and nodule in tummy bigger anybody had before 3 mouth check is this the end cause its came back to quick xx

[January-2016-UK]

Hello, please don't panic, it's definitely not the end. I recurred at three months. It will mean you're counted as platinum resistant so your team will not use a platinum drug now, although they might some time in the future I've read recently. There are many other drugs your oncologist can use. Or maybe a trial, specially for platinum resistant patients.

I'm guessing you have an appointment soon to discuss this with your oncologist but it is certainly not the end. Some do recur quickly and then go on to have a long time without a recurrence following their second line chemo. I expect others will be on line soon to reassure you too.

All the best!

[Friscok12 in reply to January-2016-UK]

I have to see my oncologist sometime soon scan to be disscused at weekly meeting next week to phone cns nurse on Monday was sent in to hospital cause they thought pain was my gallbladder but that was fine got really bad pain under right rib xxx

[Daniellafriman]

Im so sorry to hear that.. Do you have that nodule there before cause you said that its got bigger or fluid?

All the best to you ❤❤

[Choski]

So sorry to read your news, there will definitely be a treatment plan for you so as January says try not to panic, although I do understand entirely. I found I was in denial when I recurred (5.5 months) then I became very angry - nothing I went through Ar diagnosis- so I found it harder and I Hope you can speak with someone if you need to.

Initially I was put forward for a phase 2 trial specifically for clear cell but I Had a TIA so was ruled out of it, interestingly I would have been on the control arm of the trial and on weekly taxol which I'm now on anyway.

Write down all your questions, and i hope you meet with your oncologist sooner than later.

One last thing I was put on lots of meds in Jan when I recurred which I'm still on: morphine tablets , daily steroids, Omeprazole, anti nausea, daily injections for blood clots, sodium docusate laxatives, top up liquid Oramotrph etc etc, .if you are in discomfort and are given meds please be sure to take them. They do help keep things stable .

Thinking of you

Clare xx

[Di16]

I had surgery and had a scan 3 months later which showed I had recurred. That was 4 years ago. I'm alive & currently feeling well. Di

[111173]

I am in exactly the same position. Diagnosed in January 2014 with PPC, finished last chemo in February, but I just know that fluid is collecting under my ribs. Unfortunately I have already had surgery and three rounds of chemo. I must have become platinum resistant. Having a scan on 18th but really worried this time. Where will I go from here? I am determined to go on my holiday to Sardinia on 23rd for a week. Does anyone think I'm being foolish?

Lynne

[Choski in reply to 111173]

Lynne,, sorry to hear of your recurrence too. Re your holiday - I can only share my experience of my recurrence in late Jan, I've gone downhill every few weeks - I stress that's ME however I would talk with your oncologist about your holiday. iF you are feeling ok and don't need pills to manage you may be ok but also have a look at your insurance and think of a few 'what if this happened' scenarios.

Hoping you continue to be as well as possible ,

Clare xx

[111173 in reply to Choski]

Thanks Clare I read your posts all the time and I think your attitude to all this rubbish is amazing. I already have insurance with MIA and find them very helpful.

Keep as well as you can.

Lynne

[chrissapam in reply to 111173]

No I don't think you are silly....go if you can and enjoy it....it's only a week and you could come home in an emergency but if I were betting I would say you won't. Good luck in your decision makingxxxx

[111173 in reply to chrissapam]

Thanks chris I suppose that's what I wanted to hear.

Lynne

[chrissapam in reply to 111173]

enjoy, (hopefully) xxx

[Hidden]

Good morning I was in a similar position to you last year finished first line Chemo Jan Scab in Feb NED scan three months later showed thickening and of course the dreaded rise in ca125 went on watch and wait and started 2ndline chemo August gem/cargo finished January this year ca125 was still 600 but no tumors but still a little thickening started avastin January managing fine living normal life ca125 still rising had a scan last week results this week I don't expect it to be good but I'm just getting on with my life! I'm a year on from you and still as large as life so it's defo not the end keep you chin up and take what ever is offered to you I'm told there is loads of drugs for us so I've embraced that thought n enjoying myself - I'm not great at posting but hope this has helped xx

[Hidden]

Hi

Sorry to hear how things have gone for you, but don't give up hope as if you are platinum resistant there are many clinical trials going on that offer hope.

I'm new here, was diagnosed Stage 4a at the end of March 2017. I have read loads and really wanted to do an immunotherapy clinical trial, but have been told that I must go down the chemo route first as there are very few clinical trials open to women who haven't done this. Some of the immunotherapy trials look very promising. There are also PARP inhibitors, but I think you have to edtablish your BRCA status first to establish whether those would be helpful.

I feel fortunate at present as I don't have many symptoms in spite of a 11x11x7 cm ovarian tumour and pleural effusion with 3cm lung nodule.

Because I'm fit my oncologist has kindly agreed to me taking a month to start some alternative treatments as I feel very strongly about jumping straight into chemo.

I wish you every success and strength in going forward from this place in your healing journey. Keep hope as there are many options - ask your oncologist for guidance about trials available to you.

You can also look them up on clinical trials.gov putting ovarian cancer in the search box on the page that comes up. It shows you trials all around the world.

Good luck

[judyved-US in reply to Hidden]

Hi Tori......just a few words of encouragement for you. I was also diagnosed with stage 4a in Sept.2014. I had the surgery, then the 18 weeks of Taxol and every three weeks of platinum. I've been in remission ever since. I've had a few "blips" with my ca125, so I hold my breath every time I'm due for another one.....still every three months. I do hope your outcome is as good as mine has been so far.

Sending good thoughts to you and your family.......JudyV

[thesilent1]

He, you are definitely not at the end so put that thought straight out of your mind. I recurred 8 months after finishing first line chemo and remember feeling just like you. My tumours were small and as I felt well, I was able to go on watch and wait.. I had 18 months like that, getting scanned and bloods done every 3 months. I'm not saying you can do this too as I'm not a medic but they might be able to clear the fluid in your lungs which would make you more comfortable and then take it from there. There are still plenty of options for you so try not to worry. Good luck. Ann xx

[Friscok12 in reply to thesilent1]

Did you have fluid in lung xx

[thesilent1 in reply to Friscok12]

No, I didn't have any in my lungs. There are lots of ladies who will have had this though, and it could possibly be there due to infection. I remember my uncle having pneumonia and fluid on the lungs due to that and if i remember correctly, antibiotics cleared it up. Ann x

[Jessica-DianeB in reply to Friscok12]

I've still got fluid in my lungs and I'm on my final round of chemo next week!!

Up to now, been told they don't 'think' it's a cancer progression. But rather a reaction to all the abdominal surely I've had. I'm having regular X-rays to make sure it's not increasing.

I've had 3 chest drains.

As my clinical nurse reminds me, there are lots of treatments, options. You must stay strong and challenge those negative thoughts until the day you are told there is nothing more they have to offer. And even then you can look into alternative routes.

Once they have a plan for you. You will feel reassured.

I'm so sorry this is the situation you are in, sending positivity xxx

[judyved-US]

Hi Friscok.......I have not had the same experience that you describe, but I hope that you're encouraged reading all the posts from the wonderful ladies on this forum who understand just what you're going through. I send you my best wishes and good thoughts........JudyV

[lorraine71-Australia]

Hi, This is not the end I recurred in three month it's now near 3 years , it's not always been been easy but I will continual to fight on, Have faith in your oncologist team they will come up with a treatment plain, sending you my best wishes ,,Lorraine xx