round two!!!!!: hello everyone - i know i have... - My Ovacome

My Ovacome

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round two!!!!!

parvinc profile image
18 Replies

hello everyone - i know i have not written much in the last couple of months but have been reading all your blogs. well! i got the dreaded news yesterday that i have got a reoccurence - the last scan on 28/11 revealed "progressive disease" in my lapoctomy wound and surface of my colon. i know lots of you have had reoccurences and its something we all dread but are aware could happen, but i still cant get my head round it. the fear and helplessness has hit me 10 times greater. i have spoken to my onc nurse and she says chemo is the likely option. i need some moral support ladies- and someone to say that i can do it again and that treatment has worked for someone 2nd, 3rd, or even 4th time round. i am scared that this is all life will consist of now - occasional respite and chemo and sickness and feeling BLOODY lousy all the time. sorry ladies but i just feel like giving up and hiding in a hole. Last time I knew I had to get on with it - but this time round the thought of the yukky chemo fills me with dread and i feel that phychologically that cant help. i had surgery in january after 6 lots of chemo then two more in march. i have just gone back to work and my life had just gone back to "normality". this site has kept alot of us sane and able to air thoughts and questions that we cannot ask loved ones - please help!!!!

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parvinc
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18 Replies

Of course you feel as you do; it's harder contemplating the chemo when you've been through it and know what's ahead than the first time when you just think 'get through it. and get better'.

However; you WILL deal with it, and there will be good times that make even the rubbish things strangely ok. If you can; find a counsellor to talk your fears and dreads through with. They can help you through the stuck feelings and motivate you to know you can do this and be happy again.

Wishing you every good wish.

Isadora.

Jacks150 profile image
Jacks150

Hi there,

I am currently having a second round of chemo. I finished my last one in May and starting a recurrence in June - even though my oncologist kept saying that it wasn't. After several tests and a rising ca125 I started treatment on the 1st of November.

It isn't too bad this time as I know what to expect, I am still managing to work even though only part time but I love my job so it is keeping me going. I have chosen a new hair style this time and am enjoying all the surprised looks I am getting. I have gone from a short style to a medium length bob overnight! My friend is jealous as she is trying to grow her hair and it seems to be taking forever.

I have accepted that it may be my new norm having chemo every year but as long as it keeps me alive so be it. You will get through this keep strong.

I read somewhere that someone said she had a recurrence very soon after treatment. She felt she had not had enough chemo first time round so needed some more to get the job done. She was then in remission for a year and still going the last time I read about her so that is my aim.

I am due a scan just before Christmas so fingers crossed but the signs are good my ca 125 has reduced well and the lump in my neck (which I can feel) has got smaller.

It is scary but as you see on this site lots of people are doing well and getting through so we can as well. Isadora is an inspiration along with lots of others who regularly post here.

Don't give up you can get through this. Good luck

Jackie

BusyLizzie profile image
BusyLizzie in reply to Jacks150

Hi Jackie,

Can I ask which chemo you are having for round 2 please?

I finished chemo of taxol/carboplatin in October but with a rising CA125. CT and MRI looked OK in November, but they think there may be something on the MRI so I am having a PET scan before we decide surgery/chemo or radiotherapy. Also what is your occupation? I am very impressed you are working part time through this. I am planning to go back part time in January...?

Love Lizzie

X

Jacks150 profile image
Jacks150 in reply to BusyLizzie

Hi Lizzie,

I am having plaxitaxol only every three weeks. I had carbo and taxol 1st time round.

I am a childminder looking after up to 8 children after school and one little one during the day. I only work with the little one one day a week and don't have the after school children on the day I have chemo or the following week due to my immunity.

My fellow childminders are covering the days I can't work. It has been so much better still being able to work as I love my job and was devastated when I had to stop 1st time round due to treatment and surgery.

I have two young sons who love me childminding and spending time with the other children so it has been great for them as well. Keeping things as normal as possible.

Good luck with your scan let me know how you get on.

Cheers Jackie

Jane profile image
Jane

HI Parvinc, I can only offer solidarity for feelings around recurrence. I am picking up my CA125 result today which will let me know what to expect when I get my CT result next week, I finished treatment for 3C in October last year and my CA 125 was up to 47 in Feb, peaking at 122 in July, PET scan and biopsy confirmed recurrence in a lymph node and I really expected 2 or 3 or even more years before being in the system again. I have read lots of people stories and recently met a woman who was on her sixth round of chemo and doing fine. Like you not what I want for my life, I want to get on with work, study, bringing up my kids and have to work through the feelings of being back in the bloody system.

best wishes

Jane

BusyLizzie profile image
BusyLizzie

Hi Jane and Parvinc,

I am here too.....teetering on the brink of more treatment after finishing first line chemo in October. Scans not too bad a PET scan due to see what is bubbling under. CA125 was rising for last 3 first line chemos and now at 250 + whatever has gone on through the last week or so.

Like you ladies, up and down. Hope and gloom alternatively.

Today though I feel hope, and comforted by the fact I am not the only one going through this (although I don't wish it on you for my own comfort).

C'mon you mad scientists out there - please find us a cure!

Love Lizzie

X

Fitzy profile image
Fitzy

Hi Parvinc

I too am on 2nd round chemo - finished 1st round in Jan 2010 so have had a gd break, but still unexpected. My recurrence is in 2 lymph nodes - like yours Jane. I am now on carbo/gem for 6 cycles, and also taking part in a clinical trial (ICON6). The trial drug, combined with the chemo, is giving me more side effects than last time, so feeling like crap for about 10 days. My CA125 is coming down though (now 11) so fingers crossed that something is working!! Here's hoping that maybe my trial drug, or one of the many others ongoing at the moment, will lead to that elusive CURE in the VERY, VERY NEAR FUTURE!! Love to all xxxxx Colette

Meryl profile image
Meryl

Hello Parvinc

I've just completed my 3rd round of chemo and after each one my CA was in single figures. After each of the first two I had six months off and I'm hoping that I get another six months from now. As someone previously mentioned I've just accepted that I'll be having chemo again by the summer, hope for yet another remission, then more treatment and so on until my onc. runs out of options. Having lost a close friend a few months ago to cancer (not OC) who ran out of options after one course of chemo, and having another very close friend dying of cancer right now for whom no treatment was possible, I'm really thankful that there is so much treatment available to me and that it's kept me alive and well most of the last two and a half years. Don't give up Parvnic, you've got a long way to go and a lot of very effective treatment to try. Good luck. Meryl XXXXXX

Helen1 profile image
Helen1

Hi,

I am also on 2nd line chemo after only a 3 month remission & I have to say it is funnily easier this time round,I am not as scared.

I had just started aback at work & was feeling great,which I think is making this lot of chemo easier,I am much more healthy than when I originally started chemo in March 2011.

I think my disease is going to be like a chronic illness & I am aiming for a longer remission this time.........as long as treatment is available the disease can be managed &, it will just have to fit in around my life.

I am on cispatin iv weekly & estoposide orally & so far minimal side effects.....just waiting for the hair to fall out again,never even managed a haircut since the last chemo!

Best of luck,stay strong

X

maggie11 profile image
maggie11

you women are all so brave, I am full of admiration for you all, I had oc 35 years ago with no recurrence, after treatment. Had breast cancer 10 years ago I believe because of 25 years on HRT (nothing to do directly with oc, far too long ago). It was Invasive in one node so had 4 chemos. You see I know what I'm talking about. Your lives are in many ways so hard but you keep going and supporting and believeing. So many people complain and moan and groan about nothing, they are unaware and unawakened, you brave women are so beautiful believe me. lots love to you all maggiexx

AngelaAbell profile image
AngelaAbell

I have only just picked this up having spent a few days in hopsital being 'drained'. I really think that the bloating (I was 12 months pregnant by the time I was drained) is the worse part.

I finished my 2nd lot of chemo in two years last August (although I had surgery and treatment for oc in 1998). I had a great couple of months then the bloating started again. Came out of hospital feeling almost normal but i have started to bloat again almost immediately so I guess the cancer is really active again. I have a scan and appoinment with the oncologist booked before Christmas and assume that I will find out options then. Meanawhile the specialist nurse is on the case re the immediate bloating.

Like Parvinc and a number of you I couldn't bear the thought of life being a round of different chemo treatments and initially thought that I would not agree to more ttreatment if their was a reoccurance after the 2010 treatment. But my oncologist argued that i had really enjoyed my 5 month remission and in between down times I did enjoy life despite the chemo. This time I am not sure what I will do but I think that I have learnt to manage the rountine and accept the problems and all the time the positives outweigh the negatives I think i will stay with it.

Good luck to all you ladies out there. It is good to hear from people with similar problems and how they are coping and encouraging that you all feel positive enough to keep this invaluable site going.

love and best wises to you all - and fingers crossed for healthier and fun New Year

Angela

FlorenceW profile image
FlorenceW

Hi

I too am on second line treatment. Was diagnosed March 2010, had 3 chemo, surgery, 3 chemo, which finished Sept 2010, then re-diagnosed last month, and started chemo last Monday. Like most of the above ladies although my ca125 was going up I felt too well tobe ill again, and had really hoped for a longer time between treatments. But have felt more calmness and at ease with myself this time than last, and the chemo seemed easier. So good to hear other ladies stories...we're all in it together and it's great to read similar blogs about how people are getting on....everyone on here should be so proud of themselves. Go Girls!!!!!!! Love to all and happy Christmas!xxxxx

parvinc profile image
parvinc

thank -you ladies for all your comforting words and encouragement. i have been to see the onc and i start chemo next friday - i am having carboplatin and a new drug to me gemcitabine. so here we go again!!. but after hearing from you all it seems that there is many brave people out there who have coped with this again and again. my children come home next week for christmas from university and they will be with me for the first treatment. i pray that the side effects are not too bad and i can work through some of this. i wish you all a great christmas and a healthy and hopeful new year xx parvin.

spanishanna profile image
spanishanna

Parvina, sorry to be so late catching up with your post but feeling a bit under the weather is the understatement of the year after my last round of chemo. I am so sorry to hear you have occurrence but below I am going to list all the treatments I have been on in the past 5 years. It is hard, I would dearly love some time in remission, but it will never be. Never give up hope, yes chemo is shit, it makes you feel awful, but at least we have life.

Dec 6th 2006/March 2007 Carboplatin/Paclitaxol

Sept 2007/ Jan 2008 Paclitaxol/Gemcitibane

May to Sept 2008 Caelyx

Sept 2008 to Jan 2009 Topotecan

Jan 2009/ June 2011 Avastin/Cyclophosmide

June 2011/Dec2011 Avastin/Carboplatin

Dec1 2011 Cisplatin/Gemcitibane

Good luck with your new treatment

Anna xx

BusyLizzie profile image
BusyLizzie in reply to spanishanna

Hi Anna,

Re: "yes chemo is shit, it makes you feel awful, but at least we have life".

Don't hold back Anna, tell it how it is....LOL!

Love Lizzie

X

spanishanna profile image
spanishanna

Sorry ladies about the language, but it does get to you at times.

Love Anna xx

BusyLizzie profile image
BusyLizzie in reply to spanishanna

Like we care about the language! It just made me titter.

Love Lizzie

X

sunny1 profile image
sunny1

Just wanted to offer my support to you too. We are all 'in this together' and buffer each other up when feeling bad. Im having my 2nd chemo on friday, shaved my head yesterday and try to put this 'in a box' which I tend to do quite well.

K x

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