Nearly made it to 5 years

[Lockygill]

I thought I’d got away with it until my CA125 spiked at my very last 6 monthly appointment. After a CT scan, a PET scan, a biopsy and another CT scan I’ve been told that I have a reoccurrence somewhere in the Hepatobiliary area. It is hoped that it is operable and I am seeing a consultant next week after my case has been fully discussed. Here we go again! Such an inconvenience at the moment as life is so good.

[sarah48]

Hi Lockygill,

So sorry to hear your news. How far up did your CA125 spike? Mine has gone from 9/11ish last March to 18 in October and then 33 this March. Oncologist isn’t worried (but I am) as I have no symptoms and it’s still under 35. He says it must just be inflammation in the body. Had another test early May and it was 31, which he says is also good. Off my own back I am trying to eat anti inflammatory foods and will have another test in June. I would just like to compare with you as a reoccurrence is on my mind. I really feel for you but sometimes ladies recur just once and then not again, so hang onto that. Sarah x

[sarah48]

PS I also have a stoma. Do you irrigate yours as I have felt such freedom since doing that?

[Lockygill in reply to sarah48]

Hi Sarah. My stoma is not eligible for irrigation but it doesn’t bother me in the slightest and doesn’t stop me doing anything at all x

[sarah48 in reply to Lockygill]

Glad you are not bothered by it. What was you latest CA125 out of interest? x

[Lockygill in reply to sarah48]

Sorry I have no idea. I’ve never asked. Don’t know why....

[sarah48 in reply to Lockygill]

No problem. Wishing you all the best. Let us know how you progress. You have a great attitude which is so important x

[Lyndy]

Oh no Lockygill! This also happened to a friend from my support group. As I am now approaching the 4 year mark I know I have to be realistic. I wish you all the very best for your second line treatment and that you get back to NED shortly xx

[Lockygill in reply to Lyndy]

Thanks. It’s always on your mind but I had just started to forget about it a bit more. I’m staying very positive.

[Hidden]

Sorry to hear your disappointing news, but you must be well versed in staying positive, you did it once, you can do it again! Not what you wanted I know but it might just be a little op and be all sorted. Good luck at your Consultant appointment, I will be rooting for you. 🤞🙋‍♀️xx

[Lockygill in reply to Hidden]

Thanks Lyn. I’m feeling great at the moment so I just want it sorted so that I can live my wonderful life x

[Lockygill in reply to Hidden]

Thanks Lyn. It’s a disappointment but that is the nature of this beast. I got good news yesterday that they want to operate so at least there is something to be positive about. Fingers crossed all is okay with you x

[Hidden in reply to Lockygill]

Good Luck with your operation. Sadly I discovered yesterday that I am probably heading for 1st recurrence, actually don't think it ever went away! Damn this disease!!

[Caroles1]

Hi Hun,

I am approaching the 5 year mark and I feel so sorry for your news. I am not stupid enough to think I won’t re occur, but approach the Ostritch mode of living.

I’m too busy and too many people need me to be well.

I’m sure that is your case, but, you have gone so long that there will be so many options for you if you have re occured and you have such a positive attitude that you will cope with what is to come.....if anything.

Let us know how you get on,

Life is wonderful

Carole xxx

[JanePW1965]

Phew Lockygill. What a blow. My mum finished 3rd line Carbo/Taxol on 9 June 2017 and has been stable since with a CA125 of 9. I keep my fingers crossed and hold my breath with every three month check. It's nerve-wracking!! Sending positive vibes and hope things go OK. Jane XXX

[Lockygill]

Thank you Jane x

[Coldethyl]

I can only imagine your disappointment and shock - fingers crossed that second line treatment gets you as long a remission - when I was having chemo I met two lovely women in their sixties and Severties who has recurred with breast cancer - one at 16 yrs and one at 22 yrs - just goes to show that we are more than likely never done with cancer until we die of something else - wishing you well x

[Lockygill]

Thank you.

[Petrolhead]

Gill- what a bummer. The five year mark is a significant line in the sand for a lot of us. I hope the surgery option is one that you are able to take. Let us know what you decide.

Best wishes

Fay

[Purple-iris]

This disease is so cruel and so messes with our head as well as our bodies !

So sorry you are now having to face a recurrence but it sounds like you may have the option of surgery which is good and that you are well otherwise so will be able to bounce back from this blip and get another 5 years clear or longer.

I’m coming up to almost 2 1/2 years since firstline chemo and have my 3 monthly oncology appt tomorrow so holding my breath. I swing from ostrich head, I’ll be one of the lucky ones to running out of time as NED and resigning myself to the fact I’ll recur at some point.

But as Carol says life is wonderful and we know more than most to enjoy it and make the most of every day.

Good luck with your consultant appt and let us know how you get on.

Love and best wishes Kim x 💜

[Lockygill in reply to Purple-iris]

Thank you x

[Lind58 in reply to Purple-iris]

Wishing you the best at your 3 month appointment

[LittleSan]

With that fabulous attitude I'm sure you'll do well to get back to full health again. Just a gut wrenching blip hopefully. 💐😘

[Katmal-UK]

Hi. I think I know how yr feeling having nearly reached 5 years on my first remission and 18 months on my second but, albeit on a parp trial, I am nearly approaching my longest remission of nearly 6 years..... it can be done . Good luck with yr treatment xx Kathy xx

[Lockygill in reply to Katmal-UK]

Hi. I have followed your posts over the last few years. Such good advice and determination x

[Wanthealth in reply to Katmal-UK]

That sounds very hopeful! I’m finishing my 6th treatment now after 1rst recurrence after only 4 1/2 months ( incidental finding during routine bladder lift surgery). Now I will be starting on a parib ( don’t know which one out of 3 yet though) which one are you on?? I’m very concerned about all the side effects I’ve read about, bit scary! Any information you could share would be appreciated

Thx. Sue

[ZenaJ]

So sorry to hear this news. You've fought the fight once, you can do it again. Can't think of what else to say but there have been many ladies with recurrence and they come out the other side. All my best wishes, Zena xx

[Lockygill in reply to ZenaJ]

Thank you x

[Harrygirl]

I’m sorry to hear your news, I can imagine it is disappointing. Keeping my fingers crossed that your consultant provides good options to deal with the recurrence swiftly so you can get on with living your wonderful life!

Your great attitude will certainly help.

Wishing you all the best!

Christine x

[Lockygill in reply to Harrygirl]

Thank you x

[Lindaura]

Just chiming in with solidarity about this crap disease, that leaves us all with a gnawing fear, even when we are feeling terrific, as I am now.

Fingers crossed all your treatments will be successful again.

Please keep us posted.

Best wishes and hugs,

Laura

[Lockygill in reply to Lindaura]

Yes. I was feeling great. Every niggle now seems very relevant x

[Wanthealth in reply to Lindaura]

Hi Laura,

I soon will be going on a parib , just finished 6th treatment today after 1rst recurrence . Thought you had posted that u were on one as well. Was wondering which one and what are side effects?? Reading about the side effects for ( the 3 Dr is looking at for me all sound scary and horrible) anything you could share would be appreciated!

Thx Sue

[Lindaura in reply to Wanthealth]

Hi Sue!

Yes! I am in Niraparib and when they start it they go through every side effect with you, and looking at the sheet, many say “more than 1 in 10” women experience them and the others are “1 in 10”, so I was very worrier.

Then not much happened. I felt slightly nauseous the first couple of days, and now just occasionally.

And BTW : I was started in just 200 mugs and I take mine in the morning, so I don’t experience insomnia. I take an Omeprazole an hour before. I use only Cyclizine for my slight nausea.

I was hoping to lose my appetite, because I have gained 5 Kilos over my fighting weight.

But instead, I am hungry every three hours!

I also have a terrible thirst and drink loads of filtered water all day and night.

I have all my normal energy back and then some, so there might be a speedyness effect.

I can walk 2 miles a day and am never breathless.

My joints hurt at night, but I recover by morning.

The first months weekly blood tests showed no damage to my bone marrow and I just feel great!

This is only my second month, but because I feel so well I am worried that it’s not working!

Silly, I hope.

Meeting Onc in 8 days and a scan a month from now.

I am BRCA1 positive and I am hanging all my hopes for longevity on this PARP.

Hope that helped,

Laura

[Lockygill in reply to Lindaura]

Thank you x

[Mptelesca]

Just wanted to say that you will do this. Positive attitude counts high for healing. There are so many new options out there now. Have you been on a PARP? If not, they may discuss with you. I do believe I have read that now PARPS are used for first recurrence. No matter what, you will do this! Hang in there and keep us posted. Sending hugs....

Marisa

[Lockygill in reply to Mptelesca]

Thanks. So far I am managing to keep a positive outlook x

[Clearcell-lady]

You sound like a very positive and energetic person. Keep up your spirits and hope you handle the the treatment with the same courage you did first time. Gd luck!

Maryanne