3rd bash at controlling OC: I was diagnosed Jan... - My Ovacome

My Ovacome

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3rd bash at controlling OC

Gin3268 profile image
23 Replies

I was diagnosed Jan 2015 as having OC and after debaulking I started 6 rounds of Carbo/ Praxitaxil which seemed to work but I just managed 3 mths remission and was told Han thus year that it had spread to the lining of my abdomen. Unfortunately it is in cell firm which is harder to kill off. I was told that I would have 18 months to 2 years. However, I stated 2nd Chemo of Gemcarbo/ Carboplatin which lasted all of 2 sessions because it wasn't working, the jolly old CA 125 skyrocketed. It was then I was told that I only have months now but they are forging ahead with another lot of chemo, Caelyx, which in my case I like to call last chance saloon. Had my first one yesterday. Don't get me wrong, I'm not about gloom doom and despondency . If it's gotta be months, I'll make sure that it's 11.11 months, and maybe squeeze an extra few months in just to prove them wrong.

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Gin3268
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23 Replies
Katmal-UK profile image
Katmal-UK

Hi, I like your fighting spirit, lets hope you prove them all wrong xx. Hope the Caelyx does its best xx Kathy

Leeds2015 profile image
Leeds2015

Get to a top of a mountain and shout F*** It!!!! And then prove them wrong!

giovannabett profile image
giovannabett

i decided I didn't want caelx or any other treatment, not least having to commender friends for the weekly jaunts! I took on the line of controlling the build up of ascites through controlling what went into my stomach. Now only eat when I am actually hungry. My stomach capacity has actually shrunk and I get heartburn if I try to eat more than I can chew! I would assume from your description that you are now considered to have PPC. Join the ranks. I am a Mohamad Ali, I WILL NOT BE BEATEN.! Gio

Love your courage and attitude and never forget it that's what we're here for to prove them wrong. I wish you lots of luck with the Caelyx. Love Chris XX

thesilent1 profile image
thesilent1

Good luck with the Caelyx, I do hope it works. Keep that fighting g spirit up. A positive attitude is good. All the best. Ann xo

Chamber profile image
Chamber

Hi

As the others have said keep up that positive attitude !

Judy x

A great positive attitude go for it and wishing you all the best.

Love

Karen xx

Btte profile image
Btte

Hi hang in there, I had carbo/caelyx for my 3rd round it has given me the longest time out, finished last April so for me it was 3rd time lucky, just waiting on scan results.love Bridie xx

Cre27 profile image
Cre27

As others have said 'never say never'! Hard to do but stay positive and as has been suggested already climb that hill and shout your head off! Lots of hugs xx

ellseybellsey profile image
ellseybellsey

You keep fighting and prove them all wrong, I hope this treatment works for you, remember to look after yourself,

Hugs Ellsey xx

There is always hope, perhaps the Caelyx will keep you going until such time as a new drug appears during the summer. There is rumours of such over here in Ireland. I would recommend you contact Ruth the Ovacome nurse on Monday and also look into a second opinion while having the chemo. I know doctors can be blunt but they also can be wrong and a new set of eyes on your results might open up another treatment. There are quite a few out there yet such as Gemzar and Eptopside and Taxol.

GreenSnow profile image
GreenSnow

Dear Gin

it doesn't matter what the doctors tell you. They are not God. Go for the caelyx. As long as you believe you can overcome it.

God bless you.

GreenSnow

tamaramatei profile image
tamaramatei

I know and you know that doctors are often wrong. I knew a lady who was sent home by doctors as there was nothing they could do and was told she had one year. You won't believe, but she lived 12 years. So, don't give up, you are stronger than the damn disease. Take care, dear. All the best, Tamara

Simona_ro profile image
Simona_ro in reply to tamaramatei

If you know that lady why don't you post here what kind of treatment was on and how was her life after she was sent home?

in reply to Simona_ro

My gp told me that he had a patient, opened up and sent home with no treatment and that ten years later, she was walking past his surgery every day so it does happen, So no treatment but she wouldnt give in,

Simona_ro profile image
Simona_ro

Just for my knowledge, how successful was the debaulking procedure? Was everything (all tumors) removed?

tamaramatei profile image
tamaramatei in reply to Simona_ro

That woman didn't have ovarian cancer, i am not surr whay kind of cancet she had. She was the mum of one of my colleagues, so I didn't know her directly. All i know is thay she didn't believe what the doctors told her and just minded her own business.

JanePW1965 profile image
JanePW1965

Hello. My mum was diagnosed with stage 3c on Christmas Eve 2013. Carbo/Taxol then debulking in Apr 2014, more Carbo/Taxol. Oct 2014 everyone pleased. "Think we got it all out". Jan 2015 recurrence. :-( Mum started 6 x 2nd line Caelyx 4 weeks apart. After her third Caelyx her hands started to crack and were very sore. So the Oncologist reduced the dose by 20% and all was fine after that. Everyone reacts differently and not everyone is affected in the same way. She had her 6th Caelyx on 21 July 2015 and has been on 'watch and wait' since. Her CA125 has been steady at around 150. She has small tumours near her pancreas and a lymph gland but they have stayed put. She is due to have a CT scan on 23 June. She is a very positive person and I think this has really helped her to keep battling on. So, don't give up and try to stay positive. You will find so much useful information on this site. Although I am on the site on behalf of my mum I pass on information to her via email and it has helped her enormously. Best wishes. Jane X

caz54 profile image
caz54

Love your fighting spirit. I saw my GP for the first time in a while a couple of weeks ago. i updated her with the fantastic news that I was NED. She was amazed and actually told me she thought I had three months on diagnosis of Stage 4 in Sept 2014!

Keep your positivity and humour, they are not always right!

Caz x

Gin3268 profile image
Gin3268 in reply to caz54

Thanks for yours and everyone else's replies, they do lift the spirits but I tend not to get down hearted. It's nothing to do with denial or popycock like that, it's just that my nature is all about sunshine, laughter and smiles. I have always been that way and look for the positives and educate the negatives. It also helps my partner as she is the serious one but during this she has learned to laugh with me and we plan our remaining time together with the biggest smiles you will ever see. Thanks guys x

judyved-US profile image
judyved-US

Hi Gin......Only God knows what's in store for each of us. Your attitude will carry you through.

Prayers and good wishes to you and your family.......Judy

microferret profile image
microferret

What a wonderful attitude - it's so important to live in the moment. All we really have is now, but so many people don't grasp that - ill or not. Great to hear that you are remaining unbeaten and I will send lots of good thoughts your way Gin.

☀️🍰😎

Gin3268 profile image
Gin3268

Thanks guys for all your super positive responses. Latest news is that after the first session of Caelyx my CA125 count dropped a massive 1200 points, and had no side effects. Had my 2nd session Thurs and still no red wee heh heh and I feel on top of the world. I'm sensible to know that it could be an anomaly and things could change but if this is how this chemo battles my OC then keep it coming folks. Hope all fellow sufferers are hanging in there. Keep fighting chums x

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