cancer came back: Hello everyone, Sadly my... - My Ovacome

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cancer came back

Sarah23 profile image
19 Replies

Hello everyone,

Sadly my cancer has come back after only my first 3 month check up

I am deeply saddened by this has my C125 came down too 13 from 10.000 and then went back up 104, I was intrested to know if second line chemo can work and the C125 can stay down and can go onto have a period of remission for awhile? not just 3 months each time? chemo was not very plesant at the best of time but you will do anything to stay alive!!

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Sarah23
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19 Replies

Hi Sarah,

as you will see from these pages we are all fighting our battles with different results. Everybody reacts differently to each drug, so nobody can guarantee

anything. I have just done my 5th line, and have had a couple of 3 month gaps in that time, but at the moment my Ca125 is down to 19, so I'm hoping for a couple of months break before I have to start again.

stay positive and make the most of each day.

Good luck

Viv

wendydee profile image
wendydee

Hi Sarah!

Just a word of support....we are all different but there are so many good news stories on here, and info about healthy eating, staying positive etc, that you will get through this problem, and I hope and pray, will keep fighting the b**ch that is OC with the help of your medical team. If you need info, try the search box at the top of the page, there's a wealth of stuff on there

Stay strong

Love Wendy xx

BusyLizzie profile image
BusyLizzie

Hi Sarah,

You and me kiddo sound like we are having a similar rough time. I know Chrissie's blog (reasons to be cheerful) has a feel good story in it about somebody whose second line was better than first. I think the problem in the main is platinum resistance.Please let me know what you are going to be given for second line chemo so we can compare notes.

Love Lizzie

X

bosue profile image
bosue

Hi Sarah,

Sorry to hear your news, something I dread just finished carbotplatin and CA 125 wavering around 40 but scan was clear, so next appointment end of March, we all worry that its only gone for a while. Good luck with your next line of treatment fingers crossed for you. Love Sue x

Dear Sarah

I'm so sorry you're feeling so wretched. I have heard that some people have a short remission after the first line of chemotherapy and this doesn't necessarily mean another treatment won't give you a longer break. I bought the book Anticancer: A New Way Of Life by Dr David Servan-Schreiber. He had a brain tumour which failed to respond to his first line of treatment but he's gone from strength to strength over the years. You might find his advice helpful though many doctors in the UK poo poo the idea that diet and lifestyle can play a part in dealing with cancer.

Take care my dear. When you feel down think of all of us on this site willing and wishing you to feel better.

Loads of love xx Annie

It is unusual but I have encountered a couple of people who have had a longer second remission. Fighting OC is all about beating the odds and you just have to hope and believe that you WILL be the one who beats the odds. I don't want to give anyone false hope but at the same time I believe that if there is a chance you have to go for it. The latest research shows that OC tumours vary greatly in what they are sensitive to so not all OC tumours will respond to the standard treatment. See for example the Clearity Foundation website about the results of tumour analysis.

Also, the latest theory of treating cancer is not of the magic bullet that will kill it for once and for all but of a cocktail of drugs that will keep the cancer in check for many years. It's a question of finding out what is the best drug/combination for you.

I hope 2012brings you some better news.

sweetpea profile image
sweetpea

Hi everyone, I have been on this website for about a year maybe and have never really posted anything cos I felt so stupid, everyone uses terms I dont have any knowledge of so didnt want to comment. I must however say a word or two today. My youngest sister and I were diagnosed with Stage 4 OC one year apart, sadly she lost her battle in June of last year, 3 years after being diagnosed. She had 3 different types of drug combinations and radiotherapy in those 3 years, I however had carbo and taxol over 6 months and have been in remission for over a year now. So you see everyone is different but positive attitude and making the most of every day is the best way I find to cope with it. I still go for 3 monthly check ups and still panic every time in case it has come back. I hope things go well for you Sarah love Ann xxx

Tracy29 profile image
Tracy29 in reply to sweetpea

Hi, you should not feel stupid about posting on these sites, even if you dont have knowledge of every individual situation, sometimes the reassurance of just knowing someone is there is a big enough contribution to change someones day x

sarah1963 profile image
sarah1963

So sorry you're facing the prospect of having to go through it all again so soon. I had 6 months between first and second line chemo. BUT I got well over a year between second and third. Like everyone else has said our cancers react differently but on the whole they are chemo sensitive. You responded well first time round and you won't be starting the next course with a CA125 of 10,000. Impressed by this figure by the way. I've only managed a score of 6,000.

Keep going and being positive.

Love Sarah

BusyLizzie profile image
BusyLizzie in reply to sarah1963

Hi Twin,

Watch this space....I may get the record with my CA125 doubling every 4 weeks! LOL!

Love Lizzie

X

sarah1963 profile image
sarah1963 in reply to BusyLizzie

I don't think you will make the record once the Caelyx kicks in. Meryl recorded a great response to it and mine was good too. I was glad to read that you had taken a 2nd opinion on what to do next. Hopefully that has given you confidence in the next step.

Do you start tomorrow? How are you feeling?

I've also got a couple of sets of false eye lashes in the draw that I have never got round to trying. They look like caterpillars - not exactly the natural look.

Love Twin

BusyLizzie profile image
BusyLizzie in reply to sarah1963

Hi Sarah my littke twin,

Tomorrow is c-day (caeylx day). E45 on standby. I have a gorgeous set of lashes and eyebrows now (even if I say so myself). Gosh how I missed them when they were gone. The lack of them made me look ill, even though I was probably healthier than I am now with the cancer on the rampage! I know what you mean about the false lashes. As I said before, I never actually felt the occasion to don them in the end on the carbo/taxol, but even the most normal lashes I bought looked like something out of Lady Ga-ga's vanity case.

Love Lizzie

X

sarah1963 profile image
sarah1963 in reply to BusyLizzie

Hi Brave twin

Hope things go smoothly tomorrow. I'm sure they will - I found it much easier than carbo/taxol.

All my hair is growing white - including eyelashes and eyebrows so I am beginning to look like an albino. Not compatible with brown eyes! I will investigate the dyeing options. I will try to get someone to take my photo to include here but only when I can be bothered to put some make up on.

Are you managing to keep your spirits up with husbands back at work and a dreary January? Its a bit of a challenge when you're stuck in the house a lot. I'm trying not to watch too much TV.

Back at the Marsden on Monday for scans/tests to mark the end of the trial period. I will blog the final results. Trying not to pre judge or take anything for granted!

Love Sarah

BusyLizzie profile image
BusyLizzie in reply to sarah1963

Hi Sarah,

I am and up and down...you know how it is. I think it is good for husband to be back at work really, it gives him normal time. I have also started working from home a little which is a nice distraction and helps with the self confidence. I hope the results of the trial say something like:- Highly successful in the case of Sarah1963 and she can keep on taking the tablets for as long as she wants to! She now graduates with an A*.

A bit like an end of term report.

I am off to talk to my lovely GP later. To be honest not about anything in particular but I want him to admire bloating and I like his face.

Love Lizzie

X

Marianna profile image
Marianna

So sorry for your news, but keep up your happy thoughts! I was diagnosed with Ovarian CA and secondary tumours in Omentum in Oct 2009. Told that i may not see Xmas without the chemo. Given a course of Carboplatin and even though i had dreadful sickness i kept very positive. even pushing myself to go back to work and ignor the cancer. In the Jan 2010 had a scan and CA125 done. Oncologist was amazed as they could not find any cancer on the scan and my CA125 was down to 11, I firmly beleive that cos i would not acknowledge the cancer and kept really positive helped. As i just had the tests redone and its still sleeping and no sign of it. Long may it last.!!!. I know we are all different but give it another go. Yours just might need abit of persuasion to make it go to sleep for a while. Good luck and have happy thoughts. x

Hi Sarah

Sorry to hear your news. Not what you wanted to hear. But treatments are changing all the time and success rates are improving enormously. As has been said people respond differently to different chemos. How we respond to the side effects are different with each chemo too

Good luck. You have love and support from us all on this site who know a bit of what you are suffering from our own experiences.

Luv'n'hugs

Suex

kitjules profile image
kitjules

H Sarah,

I am so sorry to hear that.... I know how you must be feeling because you don't want to hear the word cancer again after chemo, and certainly not after only thee months!!

Every body copes differently with Chemo, so its hard to compare but I do know there are many ladies on here who have had chemo over many years and are still fighting and living! I gain great strength from that, hope you can too.

I had surgery last year to remove one ovary/tube followed by chemo and have just been told I will need further surgery and a hysterectomy with chemo after... not such a good start to the new year and not what I wanted to hear.

Try to stay positive, we may have lost a battle, but we have not lost the war by any means!

Julie xx

Olive profile image
Olive

Dear Sarah, It is now 17 years since I was diagnosed with OC, stage 3 advanced. My CA 125 went down from 158 to 4 but I was told I was high risk for it to return. I still wonder whether or not it will and just to try to get on with my life. I think the "positive attitude" does help which I have and do endeavour to apply to myself at all times. I wish you the best possible New Year and hope a remedy can quickly be found for you.

MargaretJ profile image
MargaretJ

Hi Sarah!

Sorry your news is not so good but I met someone at cliniic who had only had 3 months at a time chemo free in the 9 years since she was diagnosed. I found that oheartening as I thought if it came back that quickly I would be a goner! I got 9 months last time. I am thinking of you as you start all over again! Good Luck!

Margaret.

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