Reeling and wide awake at 4.15am.: I finished my... - My Ovacome

My Ovacome

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Reeling and wide awake at 4.15am.

LPorter profile image
28 Replies

I finished my first line treatment for 4a Fallopian tube / ovarian cancer at the end of Nov. I had a complete response to chemo and optimal debulking and at my review on 3rd Jan was told Ned now go off and enjoy yourself. I started playing tennis again, had a couple of holidays and was feeling optimistic albeit understanding that my future was uncertain.

Today, as I write this, not 3 months later, I am lying in a hospital bed having being admitted via A&E with bowel problems/vomiting. A scan revealed that the cancer has returned. i feel so disappointed to be back in this position so soon.

My question is what options are available now? I understand them to be much more limited with recurrence this quickly. Does anyone have a positive "pick me up" they could share!?

Thanks for listening.

Lesley

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LPorter
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28 Replies
Dee345 profile image
Dee345

Hi Lesley. I'm in the us and just about to shut down for the night but wanted to respond. I know how it is to find yourself wide awake at 4 am with all the scary thoughts.

Your story sounds similar to mine. 4 months after a "complete response". I recurred. I'm currently on caelyx and Avastin. My gyn/onc told me that there are still many options to keep this at bay. As we're all different your medical team will be the best ones to address your situation . In the meantime I just want to send a virtual hug and say don't lose hope. It's very likely that there are many options for you Hope you can get some sleep💐 Dee

LPorter profile image
LPorter in reply to Dee345

Thank you Dee for taking the time to reply I am very grateful for your prompt and positive reply.

Choski profile image
Choski

Hi Lesley,, I empathise with you so much, it's a shock isn't it? I recurred in Jan , also having been admitted to hospital via A&E and 5 months from getting a NED after 1st line. I'm platinum resistant and there are options for treatment which will be discussed with you. I'm currently waiting for a port to be fitted and also seeing whether I'm eligible for a phase 2 trial for my particular type (clear cell). I'm happy to go on the trial as clear cell doesn't have much specific treatment and it seems there MAY be some similarities with kidney clear cell. TBC!!

I was in denial, deconstructing all my symptoms and annoyed that I was being told that it was back!!

Now I'm calm and as I can't yet start treatment I just have to grip my fighting knickers so they stay on!!

Hubby and I talk but we have had some different conversations but we still laugh and talk positively. That's important as we are still here now and I don't want to waste my life living in a possible future that isn't here yet. I hope that makes sense.

Take care, write down your questions and go through them all with your team

Clare xx

Edited for this snippet - I've chased up my genetic testing as I understand that oif you are BRCA 1/2 positive it can open up different treatments so it may be worth finding out

LPorter profile image
LPorter in reply to Choski

Yes I knew about that too Claire. I had mine done on 22nd Jan and expect the results next month.

Choski profile image
Choski in reply to LPorter

Great xx, I'm due my results in March I think

LPorter profile image
LPorter

Thank you Clare. I have spent the night processing this. I don't want to be in this situation but here I am and you are right living in the here and now is what is important. I have done my crying and now need to get on with living. Like you the knickers are on! I expect to have an appointment confirmed with oncologists today, they have already been in touch with the hospital treating my bowel problems so should have a plan soon. Hope you have success with your port. I am seriously considering an alternative this time round, my veins held up well but I have had enough "wee scratches"!

Lesley

CallmeMum profile image
CallmeMum

Hello lovely,

From reading others posts a few people get the NED diagnosis then they have a reoccurrence, my special person finished 1st line chemo had debunking then had a reoccurrence last summer all within the space of a year, so my advice would be.... Put your BIG fighting knickers and cape on and kick its arse for another time.... You may find that when you've finished treatment they use the word dormant rather than remission as that's what they said about my special person, but also remember doctors know no more than their books tell them. Good luck with the next stage of your Teal journey xxx

LPorter profile image
LPorter in reply to CallmeMum

Thank you so much for taking the time to reply, I am very grateful for your kind words.

Janine57 profile image
Janine57

Sorry to hear you're in this position, Lesley, it is a shock and so disappointing. The news certainly hits hard and takes some adjusting to. I recurred after 6 months having had optimal debulking and NED at end of chemo, and I was still on Avastin. Apparently there are lots of tools remaining in the arsenal plus trials and new treatments coming on line all the time.

Pick yourself up, dust yourself off and keep fighting BUT be kind to yourself, make allowances and build in lots of treats! 🎭🍦🏖

Janine xx

LPorter profile image
LPorter in reply to Janine57

Thank you Janine, I will hopefully see oncologists next week and a plan will be put in place. In the meantime thank you for your kind words they have helped a lot.

Nicky100 profile image
Nicky100

I' m not sure on recurrence Lesley, sorry. The Doctors will advise you on treatment options I am sure. I hope you find a way through it and wish you loads of luck xx

GoldenGourd profile image
GoldenGourd

Lesley I really feel for you. I never really had a remission. My onc said it is not terrible ( I felt really cheated after 8 weeks or so after being told my operation showed no visible signs etc) and my CA125 never went below 158 then has risen steadily in last 3 tests. I'm still on Avastin so can't say if it has made any difference - as the onc said "there is no control version of you so you can never know what an alternative path might have resulted in". I don't feel down now (after much grief) and just take each day and make as many good memories as I can. I have a nodule in my groin and we have decided to see how things go. There are options but I'm leaving them as long as I can as this may prove better. Platinum resistance is also not forever apparently and if you can wait for as long as reasonable before starting again you can get a good response.... so I'm told. So don't think there are not plenty of possibilities, but I expect this will take time to bed in.

Much positive wishing your way, Netti

LPorter profile image
LPorter in reply to GoldenGourd

Thank you Netti for the useful info and kind words. I have my appt confirmed for next week so will have a plan soon.

January-2016-UK profile image
January-2016-UK

Hello Lesley, I recurred within three months too, after being NED and a CA-125 of 35. I have been on a trial with Avelumab since November and so far I am doing very well with no side effects. I have my second scan next week and I'm keeping my fingers crossed for more good results. Apart from trials there are a number of different chemo drugs you can be given.

All the best! Helen

LPorter profile image
LPorter in reply to January-2016-UK

Thanks Helen, my appt had been confirmed for next week so hopefully I will have a plan by then.

Luchie profile image
Luchie

Hi Lesley , sorry to hear you are back in hospital. Keep the fighting spirit on. We are all here to support each other.. Sending you virtual Huggs .. Xxx

chrissapam profile image
chrissapam

not easy...problem is I think NED does not allow for those microscopic cells which can lurk...try to enjoy yourself as much as possible....remember so many people have similar experience and can carry on living for a remarkably long time! Maybe not for ever but who does?!! xx

LPorter profile image
LPorter in reply to chrissapam

Thanks, it can be so isolating, it is good to hear you are not alone.

Spencer2016 profile image
Spencer2016

I'm so sorry you are having a tough time. The Dr will have a new plan for you. I'm pretty sure I have seen awesome women on here with recurrence not long after first line treatment only to have long extended NED after second line. That is what we will pray for you. Lots of hugs for you in the meantime! 💖🌺

LPorter profile image
LPorter in reply to Spencer2016

Thank you for your encouraging reply hopefully I will be one of those ladies too.

Steghart profile image
Steghart

It can really be rubbish sometimes can't it? I just started 3rd line and have been flopping around feeling very low but we can keep on fighting as so many wonderful ladies on here have shown. Knickers up! Claire xxxxx

LPorter profile image
LPorter in reply to Steghart

Thank you, it does help to know you are not alone.

Caleda4 profile image
Caleda4

Dear Lesley, I am so sorry that you are in this situation & hope that by now they have managed to stem the vomiting. I suppose once we have had cancer there is always this thought of it returning & what would we if it does,but these days there appears to be so many things they can do with different types of drugs & treatments.

Unfortunately I cannot offer you any advice,but do send you good wishes & sincerely hope that you will not be in hospital to long.

Love from Caleda xxx

LPorter profile image
LPorter

Thank you very much Caleda for your very kind words. I am feeling much better now emotionally and physically. I am seeing my oncologist on Tues so hopefully a plan will be put in place then.

Hi LesleyI .

I had first line treatment for Fallopian / ovarian cancer like you a complete response, 5 months later it was on the move, after trying first line treatment again with only 3 month this time before it was on the move, I'm now classed as platinum resistant.

Next was Caelyx for 6 months it did help but not Ned. I've finished 3months with no chemo I'm waiting for the result of my scan.

I know my 125 is going up so when I go back my oncologist will offer more Caxely, if not caelyx it will be single Taxtol .

It's not always been easy but you can manage and yes THERE ARE OPTIONS, and remember we are all different this is not one fits all.

In the last 3 years I have turn to the ladies on this site for advice and as you said a pick me up, so when you need to keep in touch.

ps...ports are great.

I do hope all goes well Lorraine xx

LPorter profile image
LPorter

Thank you Lorraine, at this point in time that is just the information I wanted to and hoped to hear! It is an anxious time and I will feel better once I get a plan next week.

thesilent1 profile image
thesilent1

Hi Lesley, I'm sorry you have recurred so quickly and are therefore platinum resistant. There are other chemotherapy treatment options that they can use so don't give up hope. You need your positive head on. Once you've been given a plan of attack things will seem much better. Big hugs. Ann xx

LPorter profile image
LPorter

Thank you Ann for your kind words. I am seeing oncologist on Tues so will get some sort of plan in place. Not ready to pop of yet!

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