4 time survivor: I was first diagnosed in 200... - My Ovacome

My Ovacome

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4 time survivor

Kimberlea profile image
59 Replies

I was first diagnosed in 2001. I was in remission for 3 years. When it came back the 2 nd time I was in remission for 10 months. The third time I was in remission for 6 years. The 4 th time I was in remission for 1 year and 3 months. I just had my CA 125 and found out it was back . I should start chemo in less than a week? I am 56. I have been dealing with ovarian cancer for 14 years. I carry the BRAC gene. I feel lucky to be here, is there anyone that is a 5 time survivor?

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Kimberlea profile image
Kimberlea
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59 Replies
Katmal-UK profile image
Katmal-UK

Hi Kimberlea

im a 3 times survivor diagnosed in 2007. 4 years remission then 18 months, been in remission now for 10 months. I too have the brac gene, brac2. am currently on olaparib on a trial. feel lucky to be here and working full time. trying to enjoy everyday. i hope yr chemo goes well and you get another long remission xx

Kimberlea profile image
Kimberlea in reply to Katmal-UK

Thank you. I'm praying for another long remission. It seems harder to Bounce back the further I go out. Maybe cause I'm getting older. Lol

Katmal-UK profile image
Katmal-UK in reply to Kimberlea

Hi Kimberlea

I replied quickly this morning and I should have added my mumwas diagnosed with 3C had a hysterectomy, one round of chemo and then went 18 years before sucummbing to bowel cancer (which they say was unrelated but I'm not sure). There is hope out there. I live in hope, pity my employers were so intolerant but that's another story (which causes stress and undue worry) lol xx

I wish you all the best and all the ladies on here xxx

Zannah profile image
Zannah

Thank you for such a positive post. I hope that the chemo goes well and you have a long remission.

Love

Zannah xxx

Kimberlea profile image
Kimberlea in reply to Zannah

Thank you. I hope this would encourage someone. There is hope. :)

jennybutler profile image
jennybutler

Wow you are doing well, I had 18 months 1st line only 6 months 2nd line now on 3rd line hope to do as well as you are doing. It makes the statistics old hat there are some good chemos. that can keep us fighting this b-----d and new drugs come up all the time. Best of luck with your next chemo.

Love Jenny xxx

Kimberlea profile image
Kimberlea

It's nice to hear others can relate. I think a lot has to do with attitude. I'm grateful for more time and cherish each year. Best wishes In your journey to fight this . Hugs kim

HumbleD profile image
HumbleD

Your post has filled me with inspiration that there is always hope. I was diagnosed in 2010 and had a remission of twelve months. Then further chemotherapy and a remission of eighteen months and currently on third line chemotherapy. I feel incrediblly lucky to be here but inspired when I see others like you having such long periods of remission. May you have a further long period of remission after your latest treatment.

Thank you for posting it fills me with hope and I really do need that.

Love Wendy xx

Kimberlea profile image
Kimberlea in reply to HumbleD

You go girl! Never give up! There is always Hope! Stay positive. Live in the moment! Thanks Wendy! Hugs Kim

sweetpea profile image
sweetpea in reply to HumbleD

Wendy, there is always hope and also some miracles, never give up and keep on fighting this b_____d. Love and healing hugs Ann xx

HumbleD profile image
HumbleD in reply to sweetpea

Thanks Ann, I will xx

sweetpea profile image
sweetpea

Hi Kimberlea, I'm only a one time survivor, but that one time is nearly 4 years now, I am also BRCA1 positive. Good luck with your new treatment and I hope it gives you a very long remission xx Ann

Kimberlea profile image
Kimberlea in reply to sweetpea

Thanks Ann! I hope you stay in remission many more years! Stay strong!

sweetpea profile image
sweetpea in reply to Kimberlea

Thanku Kimberlea, I will and I do xx

thesilent1 profile image
thesilent1

Hi Kinberlea. Thank you for this post. I have had first line treatment and am currently in remission. This gives me such hope. Can I ask what stage your disease was when diagnosed?

Keep on fighting. Ann x

Kimberlea profile image
Kimberlea in reply to thesilent1

I was diagnosed stage 3C. Every time it comes back it is in the stomach area. I had a radical hysterectomy,twenty lymph nodes removed, my ovaries,cervic,and gall bladder removed. I am BRAC 1

thesilent1 profile image
thesilent1 in reply to Kimberlea

Thank you Kimberlea, this gives me even more hope now. I was diagnosed at stage 3b in June 2013 and have completed first line treatment. Currently waiting on review. Thank you so much for sharing this with us. Keep up the fight and kick its ass! Ann xo

Millie-May2 profile image
Millie-May2

Thank you Kimberlea for such an encouraging post. Good luck with the next line; I hope it brings you an even longer remission.

Love Millie xx

Kimberlea profile image
Kimberlea in reply to Millie-May2

Thanks Millie!

Anitaalmond profile image
Anitaalmond

So pleased to hear you are having good survival rates after treatment Kimberlea, it gives us all some reassurance that treatment is well worth going through. I have just turned 50, I have the BRCA 1 gene fault and have just completed 2nd line chemo. I do wish you well in your upcoming chemo and hope you have many more remission years ahead. A lady at my hospital has been having chemo on and off for 16 years so there is definitely life after cancer, just a different kind of life. The best of luck, hope all goes well xxx

Kimberlea profile image
Kimberlea in reply to Anitaalmond

16 years! I'm encouraged! Good to hear. Definitely a different life. I don't take things for granted :)

Hi Kimberlea,

Thanks for sharing your story (I was diagnosed with stage 3a OC last October, had TAH, omentectomy & partial peritonectomy & Taxol/Carbo) it gives me hope that I could have a long spell in remission. All the very best for your forthcoming treatment I hope it results in a long remission. Libby xx

TrishLey profile image
TrishLey

Wow. I never thought of it that way; four times survivor. I like that :) Very positive way to think. I'm on Avastin maintenance after 2nd line so that makes me a two time survivor! Xxx Trish

Kimberlea profile image
Kimberlea in reply to TrishLey

Yeah! Hang in there! You can do it! They have come along way in the last 14 years when I first started. Have Hope sister your Not alone.! Xx

Jillwendy profile image
Jillwendy

Thanks for this I have just started second line after eight months remission and was feeling a little down when I got home last night from first session of toxic waste. It's good to hear positive posts, makes it all more bearable. Mostly try really hard to stay positive but just some times it slips. Keep fighting all and everyone of you lovely ladies

fluffycloud profile image
fluffycloud

Dear Kimberlea, what a positive post you keep going girl Love Pam x

I was borderline in 2005 completed hysterectomy in 2006 with first line carbo taxol. then in remission for almost 3 years and it came back with a lot of pain , I couldnt sit down was dismissed until mri ordered by rheumatologist showed cancer active in area of pain, So had gem and taxol. Then in 2011 had rt to try and zap it as this little piece is on to a blood vessel. It did shrink it. Back on chemo O

Kimberlea profile image
Kimberlea in reply to

I had that cocktail of chemo. I was only out for 10 months that time. Texel an Carbo have worked the best for me.

marianc profile image
marianc

Hi i am braca1and only had 7 months remission after 1st line. Now on avistan. Can u ask what chemo you had along the way. Which gave you long remission.

Good luck. X

Kimberlea profile image
Kimberlea in reply to marianc

The first 2 times they did surgery removed the tumors then carbo and taxol. The third time they just did chemo. I was out 6 years.

LindaB profile image
LindaB

I was diagnosed in 2008 and will start my 4th line soon. It gives me hope and confidence to read your story. I do wonder how many more treatments my body can take! I would like to know what treatment you received to get a remission for 6 years...was all your treatments the same? Good luck and best wishes xx

Yes its a bugger, had first course chemo 2006/2007 after completing hysterectomy. Second line 2010 after complaining of pain in my bum for months Gem/Taxol. RT IN 2011 to try and zap a piece that kept growing back. 3rd Line Gem Avastin Oct 2013 and remaining on Avastin. As my oncologist said recently, there is always hope. So far my markers are down, I am having a scan in mid July but he will be away so not seeing him until Aug. If scan shows anything scary they will contact me before August. But the ca 125 marker is staying down tg. In the meantime I am scared, I have returned to work on a short time basis, I dont know how this is going to work for me. I have always returned to work before. I also have just ten months to retirement. But going back to work has given me structure to my days. I know I am lucky Avastin is freely available here in Ireland and it seems to have good results. I also hope with this treatment you will again get a long remission. You know the recent drug findings for CLL have given me hope and hopefully there will always be something out there for us.

thehusband profile image
thehusband

Good luck with the next round of chemo.....what stands out for me in your post is that your 3rd lot of chemo gave you the longest (to date) remission.......Our Onc always told Christina that each time you have chemo the remission/time off, call it what you will, will decrease. Well obviously it doesnt and that is a positive for anyone who is currently having chemo, just the knowledge that IF it comes back, the next time it could go away for a good while........take care. Laurence.

What an interesting and encouraging conversation.....

I loved the chemo as "toxic waste" description!

And, like Laurence, your story bucks the trend of what I'd been led to understand too.

Wishing you all the very best with your next lot and do let us know how you get on. xxxx

Di16 profile image
Di16

Mine is back for the 4th time. Waiting to hear about a clinical trial & weekly Taxol.

Di

Kimberlea profile image
Kimberlea in reply to Di16

Hang in there! You will come through this! There are many of us banking on your success !

DwMidnite15 profile image
DwMidnite15 in reply to Di16

Hi Di16....mine is back for 4th time too. Just started treatment with Doxil on Monday. Actually feeling pretty well..didn't know what to expect since i was always on taxol,carbo.platin. my 2nd line of treatment included avastin....which lasted four yrs. Drs. Told me it wouldnt benefit me this time, pretty scary times. Just trying to b happy and positive and enjoy life...but sometimes i just think too much.wishing u the best..keep n touch.xo Donna

citrine profile image
citrine

Thank you for such an encouraging story. Wishing you all the luck in the world with your new treatment.

Love Mary xx

angeladale profile image
angeladale

Wow ! For once , a really encouraging interchange . Part of the Human condition to remain hopeful but so often we hear the bad stuff ...

I've just completed weekly taxol ( since New Year's Eve ) having completed Rotterdam in August 2013 , and Carboplatin /taxol ...Gemcitibane / Two ops in 2011 when first diagnosed .Lost hair twice , promised ( Ha Ha ) that I would lose it again ...thinned but grown and had haircuts all the whilst !! ( pic taken last year ) ...feel ghastly , BUT still here !

Mooching round garden , friends and family in and out , I feel very lucky indeed when I think of earlier generations ... and now ?

now , waiting for trial / or drug or I know not what ...

I must admit that I am exhausted and weary to distraction ... ( anyone else got whirling room brain , all the time ? ) ....and go for weeks and don't achieve much ? ( retired ), and have

great admiration for those working or with little ones ...how , oh how do you all manage ?

Because manage you do !

Yes , life with this is not as I had planned ...but , it is a life ...

can I pay tribute here to many who contributed when very ill and have passed on ....

and to their partners who continue to share their experiences , for in a strange way , it adds to a positive input ??....

which is where this chat all started ....

Llike so many , still here when I thought I would'nt be !! . for those newly diagnosed , or feeling blue ( and why shouldn't you ? ) we can only live, day by day , and this site bears testimony to many who have lived many years , even with this awful disease .

An on line Round of Applause !!

Kimberlea profile image
Kimberlea in reply to angeladale

I second that. a round of applause to everyone who has gone through chemo and cancer! My happiest day is the day I am done with my last chemo. Everyday after that is really living.

thesilent1 profile image
thesilent1 in reply to angeladale

Brilliantly put Angela. Love Ann xo

topeka profile image
topeka

No so you are very luck to be a 5th timer. I am happy you have made it each time as it's not fun to go through. I was curious, did you keep your ovaries and not have them out, or did this appear in different areas. Thanks

Kimberlea profile image
Kimberlea in reply to topeka

ovaries, cervix, lymph nodes, omentum, gall bladder, uterus gone.

tutti profile image
tutti

I started in2000 and have had five recurrences all of which have resulted in surgery last time2011 so this is my longest gap. My surgeon says I am very unusual as mine comes back one tumour at a time.As a result have lost womb ,ovaries ,bowel bladder,part of liver and half diaphraghm.For a change this year have looked to the rest of my health and have just had a knee replacement which has been worse than any of the cancer surgery! In2005 I was given six months to live so have proved the doctors wrong.Good luck with treatment.

Kimberlea profile image
Kimberlea in reply to tutti

Keep proving them wrong! Nothing is set in stone. Attitude is everything. If I believed the out come they were giving me I wouldn't be here today either. "Live long and Prosper".

thesilent1 profile image
thesilent1 in reply to tutti

Brilliant. Thanks for this. Keep strong. As nn xo

DwMidnite15 profile image
DwMidnite15 in reply to tutti

U r amazong!! Stay strong! Xo Donna

I have read all your blogs and I am so glad I have joined this site. Well was joined before but I somehow got lost in transit/ All these stories give me great encouragement. Yes we should give ourselves a big clap on the back for getting back up and out there. It is a fight and attitude can help, there is always hope. Sometimes the immune system kicks back in and our bodies fight for themselves. There are new drugs out there. For me, I suppose the Gemzar Taxol gave me the biggest break with just a course of rt in between. Have been on Gem again and as I said now on Avastin every three weeks and the numbers are still coming down. You try to live as normal as possible but you also feel down now and again and that is okay too, that is the time we have to be gentle with ourselves. Hope everyone was able to get out in the nice weather. I found that I couldnt stand the heat and I love it usually. All the best to everyone and chat soon again

iamstillme profile image
iamstillme

Hi Kimerblea wishing you all the very best wishes for another long remission and you get through treatment with not too many side effects . What a positive post and I'm sure it gives hope to many of us including me . As you say I firmly believe that a positive attitude goes a long way and there are advances being made all the time

Take care

Ally x

zuzana profile image
zuzana

What a positive post giving hope to many of us. I started second round of chemo in april but didnt work and disease moved to breast as well ;( next week starting a new chemo so reading posts like this make me more strenght to fight and win. Thank you to all of u

Love zuzi x

baxbird profile image
baxbird

Woo hoo! You go girl and keep proving the stats wrong!

Love this positive post

Dawn xx

Whippit profile image
Whippit

Dear Kimberlea

I'm really grateful for your positive post. I had two years free of chemotherapy after my first line. I've finished my second line and am currently on maintenance avastin but have not been given any hope by my oncology team of such a long period treatment-free this time round. It was really heartening and uplifting to read your story and to know it is a possibility. I wish you many more years as a long-term survivor. x

Kimberlea profile image
Kimberlea in reply to Whippit

Never give up! Before I went out 6 yrs my dr. Told me I would be lucky to go out a year. So they can only guess. Try and live stress free and bet on yourself! Best wishes in your fight against the C.

Whippit profile image
Whippit in reply to Kimberlea

Thanks. I love your take on it Kimberlea and shall follow your advice to the T. xx

DwMidnite15 profile image
DwMidnite15

Hi Kimberlea, i was first diagnosed in Feb. 2007....I was in remission for one year four months. My second remission lasted almost four yrs.....which was awesome!! Last yr.recurred which lasted 9 mos.....not happy about that! Just started on Doxil on Monday....which in itself is scary with the cardiac risk. I pray and hope for a long remission. Needless to say...I know what u r going tjrouvhstat strong and I wish u health and happiness. Keep n touch w me. Donna

Kimberlea profile image
Kimberlea in reply to DwMidnite15

Best wishes! Hang in there.

MaggyH profile image
MaggyH

This is such a lovely and positive thread, just what we all need. I finished my second line of chemo 3 weeks ago and am so looking forward to a chemo free period, and hoping for a long warm summer.

Sometimes its hard to feel happy and positive as sadly this disease changes your life, but it does makes you realise how precious life is and how much you love and appreciate family, friends and the simple things.

Here's hoping we all have a happy, healthy, warm summer!

Love Brenda xx

charleee profile image
charleee

I was diagnosed in 2007 with oc 3 and after having everything removed had carboplatin 6 x 4 weekly on a clinical trial for 7 years. Just in December at yearly check up was told I would be discharged next visit when trial was over. 2 days later after a routine liver ultrasound due to abnormal lfc at my gp was referred back to onc to find out in January I had a pelvic mass, liver and lung lesions. Had liver biopsy and then started on carbo again March. 3 months then ct scan showed shrinkage in pelvic mass but growth on liver lesions. Was told I could wait for symtoms or try caelyx which works in 20% cases and opted to start it as I feel I needed to do something! Had first round and due another Monday and will then have ct scan after 3rd round. Fingers crossed this will work. So nice to hear a 4th line survivor it gives me hope! Good luck in your fight and you are a real inspiration!! Anyone else had spread I would appreciate seeing good news!! Gl xxxx

sharonforce profile image
sharonforce

Yes - five times for me! I am also BRCA positive. Currently on my second parp inhibitor trial drug and doing very well. Good luck with your treatment.

best wishes

Sharon

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