Recurrence? Or not!!

[Alifit]

Hello to all!

For the last few weeks there has been some question as to whether I’m having a recurrence - my CA125 has been rising since August last year and is now around 400 - it went up 100 over four weeks between appointments. I had a scan which showed some tumour growth and a small amount of ascites. Two weeks ago my consultant suggested that there was a possibility I would need to start on second line chemo - Carbo/Caelyx, however, she wanted the scan to be re-reported by a gynae specialist radiographer and reviewed by the MDT. I went today, armed with a calendar of all the things I’ve arranged this year in the hope that chemo could be fitted in around my life, only to be told that my tumours have barely increased, one has actually shrunk, albeit only 1 millimetre! Four weeks until my next appointment and another three months until my next scan as long as I feel ok. I do have quite a lot of abdominal discomfort, but I’m fairly sure it’s still after effects from my operation.

I have also mostly been on holiday! A second honeymoon in Paris - mostly charging about from one architectural monument to another, just like 36 years ago and a few days in Wales including a yomp up the Great Orme (no cable car or tram for us - straight up the mountain goat path!) and a sailing trip out of Conwy in the fog!!

I know some of you are really going through the mill at the moment and although I’ve not really posted or commented for a while, I have read all posts and keep you all in my thoughts.

Love to you all, Ali xx

[Seasun36-uk]

Hi Ali, how confusing!! Is CA125 a good indicator for you? It sounds like you are keeping very fit & that must be a good sign! Your different trips sound great. Keep us posted. Linda xx ⛰ 🧗‍♀️⛵️

[Alifit in reply to Seasun36-uk]

I had high CA125 for a year before I was properly diagnosed - nothing showed on scans until I found a tumour which was on my omentum - it was suggested then that it was naturally high - it’s never been lower than about 25.

I was so certain I was heading for a recurrence that I warned my family that I would like them to be on hand as Tom is not going to be around for a lot of this year due to his sailing trips. I had prepared myself and them for the worse but have now had to tell them that it’s ok for now.

I’m not that fit, but extremely stubborn. I’m determined that the bugger won’t stop me!

Hope all is well with you, we must do the Swan again!

Ali x

[RonLitBer]

That is some steep incline. Very impressive that you are able to climb up it. Wonderful news as well.

[Alifit in reply to RonLitBer]

It was quite steep and slightly lacked a path! I don’t believe in doing things the easy way!!

Best wishes, Ali x

[lorraine71-Australia]

Hi, Ali, I find that my 125 is a good indicator my oncologist keeps on top as soon as it goes up a scan is ordered and yes I end up on chemo. it's up to 340 now and I've just started Carbo/ Caelyx. I have had this combo before with good results, my history is as soon as I go off chemo my 125 goes up arfter short break.

I just would like to say I admirer your stamina doing all your trips, sound great hope you continue for many more.

Take care Lorraine xx

[Alifit in reply to lorraine71-Australia]

Thank you Lorraine - I just feel very lucky that I can still do most of the things I want to, although I have to pace myself now.

I know it will come back at some stage so I also feel the need to be as fit as I can ready to put up my best fight!

Hope all is well with you, Ali x

[Ossett]

That’s exactly where I am at the moment, small increase in a nodule and ca125 increased to 124 from 74 in three weeks oncologist taking things a month at a time and scan in 3 month if I still feel ok, it’s a weird feeling x

Trish x

[Alifit in reply to Ossett]

It is isn’t it! I have to talk to myself severely because I put every twinge or discomfort down to cancer - such a negative waste of time.

I hope you continue to stave off the beast.

Take care, Ali x

[Petrolhead]

Hi Ali

Good to hear that there has been some shrinkage albeit small and others not really changed. Carry on the good work on the trips. Romantic to redo the honeymoon.

No yomping for me as have just driven through France to Monte Carlo for the historic Grand Prix The only walking I will be doing is around the shops

Best wishes

Fay writing from Monaco

[BeeWild in reply to Petrolhead]

I was at the Monaco GP in 2015 it was awesome! I’m very jealous you’re there but have a great time xx

[Alifit in reply to Petrolhead]

Paris is a very romantic city, but with all that architecture to see we averaged around 8 miles every day - we used the Batobus instead of the Metro which gave me the opportunity to snooze!

The last time I drove through France was in 1981 - spent a couple of weeks in Menton and visited Monte Carlo. I’m guessing you have travelled in one of your lovely cars? We were in an Opel Kadett!!

Hope you are doing ok Fay, enjoy your adventure, Ali x

[January-2016-UK]

That’s excellent news about the tumours, perhaps the malt whisky may have stultified them.

The second honeymoon in Paris sounds good but especially the hiking in Wales. I’ve never been sailing let alone in the fog, scary.

Enjoy the time off of chemo, the longer the better. I didn’t restart chemo until my CA-125 very slowly increased to the 600s and had the whole of last summer off.

[Alifit in reply to January-2016-UK]

Well, if there was a trial to find out if a decent single malt was the cure for our ills, then I’d be the first volunteer in the queue! I’m quite happy to ride this out for as long as I can - when I mentioned the discomfort I feel just under my sternum, the registrar said ‘That’s gastritis!’ which I know can make your CA125 go up. Maybe that’s all this is after all! (No disrespect of course to sufferers of gastritis, which can be ghastly).

Best thing about the sailing? Getting back to the Marina and drinking more wine than is sensible!

Best wishes, I hope all is well with you, Ali x

[harpist_UK]

Hope you manage to switch off from it and enjoy the hospital free time! In my experience it's important to make the most of the non-treatment times and go on your trips etc.

[Alifit in reply to harpist_UK]

Absolutely - I’ve got lots planned this week; visiting friends in Derbyshire, a 7 mile walk, horse riding, two book groups and then going to see my daughter and family. I can’t be ill, I’ve got too much to do!!

Hope you are well, best wishes Ali x

[harpist_UK in reply to Alifit]

Enjoy! Not going through my best phase at the moment, but hoping to be sorted out soon!

[Alifit in reply to harpist_UK]

I’m with you all the way - sending my love, Ali x

[Hidden]

Brilliant news always good to hear. Glad you enjoyed Paris and Wales. We need these trips to keep the focus off the treatment and the fear. all the best

[Alifit in reply to Hidden]

Oh it does mess with your head sometimes. I’ve been knitting too - tiny hats for our local neonatal unit to keep my mind occupied in the evenings!

Ali x

[Hidden]

I recognise the bloody-mindedness - I'm just starting week 4 of the NHS couch to 5k programme- mad but determined; and the informal single malt clinical trial; and the mysterious possibly symptoms.

And I absolutely agree I have too much planned to deal with any silly cancer! Good for you. x

[Alifit in reply to Hidden]

Now that’s something that was on my list to do - was going to do the Race for Life, but I can’t find one locally that doesn’t clash with something else. I’m told I have asthma (always in denial - no scans or blood tests for that!) and hay fever is making me cough, so maybe next year!

Well done you for doing this. Enjoy it, Ali x