Struggling with news of relapse

[Coutance]

I am new to the forum but have already gained so much from how supportive everyone is. I am really struggling at the moment. I was diagnosed stage 4 in August 2017 with a strange presentation of swollen gland in my neck - no other symptoms. Scan showed swollen nodes but no other evidence of disease so I had the usual taxol/carbo for 3 cycles then surgery and then 3 further cycles, finishing in March 2018. All went really well and all my scans during treatment were clear with the surgeon finding very little inside - total hysterectomy and removal of omentum. Very lucky in being accepted for Prima (niraparib) trial and moved forward very positively. Think I was on the drug as had number of side effects, not evident before trial. unfortunately CA125 immediately started to climb and my scan last week showed a small thickening in the pleura - everywhere else clear. My oncologist is aiming for stability by using Letrozole, trying to delay the weekly taxol/avastin until a later stage. Anyone any experience of this? I am struggling to cope with the loss of my 'hope' and positivity and am so worried that the cancer will just spread before the letrozole has time to work. It just seems that all my news is bad - BRCA negative and now platinum resistant. Any advice about this or some positive stories would be greatly appreciated as I feel I am in a deep black hole at the moment and just don't know how to get out. I have an absolutely wonderful, supportive husband and friends but I think you are the only people who will truly understand how I feel.

[Lottie44]

So sorry to hear that Coutance. Do you mind me asking where in your neck your swollen lymph node was?

Thanks

[Coutance in reply to Lottie44]

Thanks Lottie, the node was just above my left collarbone at the bottom of my neck and came up during the course of a day. Apparently this is a rare presentation and is the wrong gland for ovarian.

[Caroles1]

We do know how you feel love, I have had no experience of this, but Im sure someone can help better then me, just wanted to wish you well,

Love,

Carole xxx

[Coutance in reply to Caroles1]

Carole, thank you so much, I really appreciate your support and good wishes xxx

[Caroles1 in reply to Coutance]

Let us know how you get on xxx

[BeeWild]

Hi sweetie I too am BRCA negative and classed as platinum resistant as my recurrence has occurred 4 months after front line chemo x I’m not on the same regime as you for my recurrence I’m on the CEBOC trial which involves weekly taxol and the introduction of cediranib.

I’ve had 6 out of 18 doses of taxol to date (no7 on Monday ) and I’m still managing to stay in work and generally feeling well ☺️ Also using the cold cap this time x

After 3 doses of the taxol and before the cediranib was added last week, my Ca125 had dropped from 1993 to 345 (82%) so looks like the dose dense taxol is kicking the beasts ass and now we’ve added the cediranib I’m hoping it truly obliterates it! Get my markers checked again this Monday x

Recurrence is harder than initial diagnosis i feel as it dashes all your hopes of a long remission and a cure but I’m concentrating on getting through this regime and praying I get a good remission this time so I can at least have a proper holiday! I’m not letting this steal any of my sunshine and I’m staying as positive as I can x

Good luck with your treatment and don’t be too disheartened I’m sure your team are going to throw everything at this beast for you xx

Take care and hugs Bev xx

[Maus123 in reply to BeeWild]

Good luck on Monday, Bev. Good news on the ca125. Xx. Maus

Sorry for hijacking the thread, Coutance.

[BeeWild in reply to Maus123]

Thank you Maus xx

[Coutance in reply to BeeWild]

Thanks Bev and so pleased that your treatment is working so well - gives me lots of hope and inspiration! I also intend to use the cold cap when I eventually go back to treatment so hope it works well for you. I didn't mind losing my hair first time but lost it again after surgery and don't want to really start all over again for a third time. Feels important somehow to just preserve some of the 'old' persona. Hope things continue to go well and look forward to your posts. lots of love xxx

[Maus123]

It can be quite overwhelming, Coutance. It floored me, when I learned of my recurrence a bit over two years following initial diagnosis (stage 3a borderline serous OC with just a few low grade cells). Especially since my oncologist seemed to expect a 6 to 10 yrs period before recurrence, if at all.

Please don't despair. Finding the right treatment for you specific disease can take a bit of 'trial and error' . You could always get a second opinion too, but the anti-hormones might just work? All the best with your treatment. Maus

[Coutance in reply to Maus123]

Thanks Maus, I really appreciate your positive message and encouragement. At least there are plenty of treatment options to try and I am lucky in being able to trust my oncologist - he is involved in lots of the trials that are currently running. All the best to you too xxx

[tara108]

Hi Coutance. I so sorry to hear what you are going through. I so understand the feeling of loss of hope etc on recurrence. It felt to me like the ground had just dropped away again. Accepting it is back, stops the possibility that it won't come back and it can be devestating. Sounds like there are a few options for you and alot of women respond well to avastin etc. Trust the 'black hole' will pass and if it is lasting longer than you want, perhaps find a good therapist who really knows about cancer to talk with, as that may help. Sometimes, even with supportive family and friends, we need someone outside that circle to talk with. Hugs from Australia

[Coutance in reply to tara108]

Thanks Tara, you are absolutely right in how it feels to have a recurrence - the loss of hope that it won't come back is devastating. Talking to someone is really good advice and works for me - I am lucky to have a Maggie's Centre at the hospital I am at and they are absolutely wonderful, I really can't recommend Maggie's highly enough. I have an appointment to have a chat on Monday afternoon and I know I will be 'lifted' as a result, as I have been by all the messages I have received. Lots of hugs being sent to Australia and hope all is going well with you xxx

[January-2016-UK]

I'm BRCA neg and platinum resistant too. There are still lots of drugs for us, including trials so please don't feel you're running out of options. It's a shock when we find out that something hasn't worked it's true but your positivity will return and along with it your hope.

All the best!

[Coutance in reply to January-2016-UK]

Thanks January for such a positive message. I know my positivity will return but it is really helpful to hear that from someone who has been in exactly the same situation as I am in. I don't wish this dreadful disease on anyone but it is so good to have others who understand so well and can help the 'newbies' like me. All the best to you too xxx

[Lily-Anne]

Welcome to the party 🎈

I found recurrence much harder to deal with than the original diagnosis

I also have a tumour in my neck. It’s at the base of the neck in the deep cervical lymph node. It hasn’t changed size or presentation since discovered. It varies on scans between 15 and 18mm. My oncologist said lymph node travel to the neck is more common than it used to be. They can’t confirm it as OC orientation without a biopsy but there’s no real value in my knowing either way

Have you been offered Avastin? I am having it as a stand alone, well I was but there’s been a few hiccups like sepsis and falling down the stairs!

LA xx

[Coutance in reply to Lily-Anne]

Hi Lily-Anne, many thanks for your response and interesting that you also have the lymph node up in the neck, sounds the same one as me. Interesting what your oncologist said about becoming more common. My node went down fairly quickly with my first line chemo and has not returned thus far. I was offered avastin with final chemo sessions but I opted for the Prima (niraparib) trial. It was a tough call but my oncologist felt the trial might be better for me, knowing we could always fall back on avastin (I am in Scotland so not sure if eligibility is the same in other parts of UK). Sadly the niraparib has not worked for me (or I was on the placebo). Maybe I should have just opted for the avastin with my final chemo sessions instead. Very tough to keep making treatment decisions when no one really knows what is going to be best for each person - it is such a complex disease. Hope you are recovering from your recent 'challenges'. Best wishes xxx