My Ovacome

Bad day

Hi ladies I am new on here 👍 Macmillan centre recommnded I join. I had bad news and usually handle things well, but inside I am falling apart.

My story so far. Diagnosed with grade 3c ovarian cancer and stayed in remision for 18 months then relapsed. Had treatment again, but only stayed clear this time since November when treatment ended. Looks like it is now back a ct will confirm this on Monday. Has anybody else had a reacurance so soon after chemo? Not sure what to expect now xxx

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Hi. I too was diagnosed 3c in 2015. Had 14 months before I recurred and coped with that news ok and got in with chemo. This time I’ve only had 8 months reprieve and am now in second recurrence. This one floored me and took me to a very dark emotional place that I couldn’t get out of for a long time. (You’ll be able to look back over some of my miserable posts!!) Not helped by a week in hospital with severe pain. But, I am now just about half way through chemo and my emotional state has certainly lifted.’I think once you know for certain and you have a plan in place you will be able to get your head in the right place again. Don’t worry if this is a slow process - it certainly has been for me and I still haven’t managed to get back to the completely positive person I’ve been before during treatment but I’m getting there and you will too xx

Good luck on Monday xxx

Becky 💐

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Hi Becky

Thank you so much for your reply bless you. It is so hard isn't it? The difficult thing is I do not let my guard down in front of family so I am exploding inside. So glad you are feeling better now. Did you have the same treatment each time?

Maxine xx

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Hi

I finished chemo in October 2017 for a second recurrence. It’s no fun when it feels as if youve ploughed through the side effects for nothing. Which chemo did you have?

Did you have any scans during chemo?

LA xx

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Hi LA

I had carbo/taxol first time around and then carbon with a trials drug. That was hard going as it was every 3 weeks 4 days in a row for 6 hours a day. I had scan half way through and st the end purely because I was on trials. In November I was told I had a full response xx

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Hi Maxine.

I had surgery and the typical carbo/taxol first time round, last time was carbo/caelyx which I tolerated really well - worked in between and this time I’m on carbo/gem which is battering me!! I know what you mean about keepingnot from your family - mine are great and I find letting it out on here helps. My CNS is always saying I can have counselling but I haven’t taken her up in that because my head is in a better place now but I find that when everyone is out screaming into my pillow sometimes does the trick!!!! Lol

Becky x

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Thank you Becky did you lose your hair with all of your treatments? I lost mine with carbo/taxol but not with the carbo trials drug 😁

Xx

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I’ve always used the cold cap which has been really successful for me. I cut it shorter and it got very thin with the taxol and I lost the hair from everywhere else!!, last time it stayed long and didn’t thin. This time everything seems to be working, it’s thinning a little bit after 3 cycles I haven’t lost any from anywhere else so I guess the cold cap is just a precaution!!

Becky x

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I had a recurrence in 2013 within 3 months of surgery. I found it difficult to deal with at first, but did calm down. Di

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Hi, Glad you have found us, my history is my first recurrence was 6 month and the next only 4 month I've just finished my 5th line treatment Carbo/Caelyx with good results, my

oncologist wanted me to try a trial drug that was 9 week ago my 125 is going up again now 245, so back on chemo Carbo/Caelyx then Caelyx as maintenance.

That is my history as soon as I stop chemo it goes up, the trial was not chemo I had to come of chemo if it works the drug make cancer more sensitive to chemo this is aimed at recurrence of ovarian cancer.

Hope all goes well with the scan ,take care Lorraine xx

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Hi Lorraine thank you so much for your reply, it is helping already talking to you ladies I am so glad I joined.

Love and best wishes Maxine xxx

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Hi

I’m so sorry you feel like you are falling apart.. we will all try and piece you back together, you are among friends here and lovely ladies who will try and help you.

If you have been 6 months in remission, you may have better access to treatment options... so hang in to that thought. They will have a plan in place for you, so once that ball gets rolling, you can try and focus on that. There’s a lady in here I think who has had it 5 times and she is still doing OK!

I understand your feelings of wanting to explode! I am a little the same this week. Especially with ‘ well-meaning’ people! I really can’t suggest strongly though that you don’t put a brave face for your family. Be honest. Be open. They might want to be open themselves...? We did the same, but we closed off from each other. Shouting or expressing emotion really will release much of what you are feeling, and you won’t feel so silenced.

If you can’t, is there a good counsellor your GP could recommend you to? Explaining to a stranger ( who is trained in this) could really help you.

I’m wishing you love sbd am here if you need anything,

Love Nicky ❤️

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Hi Nicky

Thank you so much as I truly feel better already just knowing that I am not on my own in this. I did talk to a councillor at the Macmillan well being centre which helped too. She got me on this site. J feel I have to protect everyone I love as I do t want them to worry. I keep telling myself I am still here enjoying my grandchildren. After my treatment finished in November we all booked a villa holiday in Spain and I pray I do not have to cancel as they will all be devastated if Grandma cannot come. I had to pull out of a holiday in Greece last year due to treatment. I pray Whatever treatment I have I can still go.

Love to you Maxine xxx

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💓💓💓💓

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So sorry you are going through this, recurrence is incredibly tough emotionally. Completely agree with Nicky that it’s good to open up to family and friends if you can. I didn’t, like you I wanted to protect people but I did feel silenced and that was sometimes isolating. I’m still protective of the children but try to be open with loved ones and it does help. I found counselling incredibly helpful as well. And I did get through it! As you will.

Elizabethe x

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Thank you so much you are so right I do have to start opening up xx

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HimImwas diagnosed 3c or 4b they couldn’t decide in June 2016. Never had a remission as such, back on treatment 6 months after first line. Then 2 months after second line on a trial drug. Do I have never had long between treatments but this drug, Rucaparib, seems to be doing a good job. The only problem is it has also resulted in dropping red blood counts so am having a week off and had a blood transfusion to remedy anaemia. I’m hoping to go back on the drug on a reduced dose.

Basically there is hope, no matter what stage or what remission or recurrence you are facing. We are here for each other.

All the best to you xxx Netti xx

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So glad I joined 😁 I have never heard of that drug is it what they call avistan? Xxx

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No Avastin is another type of non chemo treatment. Rucaparib is a PARP inhibitor, like Olaparib. It is a tablet and not chemo. There is so much to take in so don’t worry if all this seems new. You get to grips with stuff slowly, mainly on a need to know and ready to find out basis.

Xx

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Thank you so much. I am hoping that I do not get a harsh chemo this time around as only finished in November 😭 xxxx

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I recurred within 3 months of frontline. I paid for a private consultation in London and am now on a clinical trial at the UCLH Research Facility. Have my second svan next week and am very nervous. There are lots of options out there but you may need to look for them yourself.

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Thank you so much and I do worry that certain treatments are not offered 😷

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Hi.Im waiting for my scan results on Monday also...Stage 3c.Bracca negative.I too keep this disease to myself.Im usually a positive person.This one is hitting me harder..I had carbo/taxol original diagnosis.4 years ago.I reocurred after 1 year.Then had carbo/taxol again...This gave me only 8 months.I then had carbo only(no hair loss this time)Awesome....Unfortunately its only been since November(4 months).I feel what your going through.Its too soon.But I know there are other drugs that I have not done yet.May have to go back on Taxol.Not sure..I too will know more on Monday..Ill be thinking of you.We can do this again...(minus hair loss which will not be good)...Hope our next treatment keeps us stable at lot longer this time.Let us know how it goes.

LYNN💙💙💙💙

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Hi Lynn please let me know how you get on. I have a ct on Monday and then hopefully get results within a week. Good luck and yes we can do this and get a longer remision this time 😷

Lots of love

Maxine xxx

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Salmon45, I know your probably in the UK, but please ask about IP chemo, its saving lives and makes reoccurring cancer 3 plus years. Please. Its working in the US. I don't understand why Drs there arnt suggesting it. I had it the first time diagnosed been cancer free since. They also call it stomach wash chemo because its put directly into your stomach cavity area and washes the organs and tissues with chemo. I just celebrated 4 yrs cancer free. Of stage 3c ovarian cancer. It may help you. I wish you the best,❤Liz

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Thank you so much Liz I will ask when I see consultant which should be end of week when scan results are back xxx thank you 💖 Maxine

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I was diagnosed in June 2016. Finished taxol and carbo in January 2017. Was still having avastin as maintenance but ca numbers were rising so was back on the carbo and taxol in October 2017. Had three carbo and had anaphylactic shock so finished the course with taxol only. That ended at the end of Feb this year. Had a complete response. I’m hoping it stays away a lot longer this time. Don’t think I could deal with another early recurrence.

Wishing you all the best. Keep strong. Xxx

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Bless you you have had a rough time of it. Everything crossed for you xxx

Maxine x

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Thank you Maxine. I’m ok. Gotta keep going. Lol.

I hope you are ok. Keep

Positive xxxx

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Hi Salmon, so glad you've found the site.... the powerful impact of feeling isolated is the one thing that can be mitigated by sites like this and Im so glad that your Macmillan centre was aware of the forum. Have you also seen the Target Ovarian Website? They have excellent guides including one for women dealing with recurrence, targetovariancancer.org.uk/...

TOC also arrange regional 'Being Together Days' throughout the UK... there is one coming up in Manchester very soon. Ovacome have also started having regional events with one on the south coast... think its Southampton?

Do have a look... I was diagnosed over 5 years ago and meeting other women in similar circumstances be it on line or in person has been so incredibly valuable.

Wishing you hope & strength, Sx

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Thank you so much for your reply I will have a look at the other sites. Just waiting for scan results to know what I am up against this time.

Thank you again.

Maxine xxx

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do keep posting whilst you're waiting if it helps... there's plenty of good sense, good humour and great support here and we all know how waiting on results feels! Wishing you hope and strength Sxx

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I will do thank you all so much xxx

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