After a rising ca125 and scan results showing cancer back in my peritoneum and remaining momentum I'll be back on chemo again very soon. To say I'm gutted is an understatement ,I'd hoped for longer than a nine month remission ,my oncologist said if the chemo has a good effect I'll be put on a maintenance drug afterwards, I'm thinking is it all worth it ,last time I had six lots of chemo ,surgery then three more lots of chemo, five months getting over it ,so just four months of feeling good , perhaps it won't work perhaps I'll only get a few months again ,I'm in turmoil ,I didn't ask any questions I should have ,I wanted him to say ,no worries, we'll zap it again then you'll be fine for a couple of years, even though I know that's not possible ,I feel so despondent ,any words of wisdom appreciated ,or a good telling off.
Cheryl.
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Oh Cheryl! Of course you are despondent, it’s only natural when we have a set back but you know what this disease is like... it doesn’t do what you expect it to do! So hopefully your response to the chemo will be good and the maintenance treatment will be just that and will keep it under control... that’s what I am hoping whenever I actually get to finish my chemo.
Meanwhile... could you look at any trials? Apparently patients do better on trials whether or not they get the drug that’s being studied because they are so well monitored. Could that be an option for you?
Sending you a hug....this roller coaster is never an easy ride! xx
I hadn't thought about trials ,but will mention it at my next appointment. Starting to feel a bit calmer , good luck with your treatment ,hope it goes well.xx
Oh dear. I am feeling the same. It’s so hard to look on the bright side when we have been through so much. It looks like we will be on the same journey. Sending a big hug x
Sorry you're going through it as well ,we'll just have to get on with it again ,let's do this ,big girls knickers again ,wishing you luck with your treatment. Xx
Hi. It does suck and it’s hard to absorb bad news by yourself. I was in your exact situation with nine months after frontline. I had carbo caelyx which was doable because of the four weeks in between. It didn’t wreck my body and soul like frontline did. I still had some cancer left at the end but went on Olaparib and that shrank it to 2 mm as of four months ago. It could keep working for a long time ; there’s no telling. I assume you’ve had genetic testing? If you’re BRCA negative it helps to know if you’re HRD positive. I hope it goes as well as possible for you. Xx
Your story has given me hope ,thank you, I'm going to have paclitaxol and carboplatin , same as first line , they wrecked me ,but I'll give it a go . I have had genetic testing ,I'm negative. Wishing you continued success with you treatment. Xx
That's not the Cheryl I've got to know, we're in this together. Look after yourself in every possible way I got this book which I have found helpful How to Live by Professor Robert Thomas.
Also have a look at this ovacome.org.uk/webinar-reco... and keep fighting, it's alright to let it out but then pick yourself up because there could be a lovely rainbow around the corner with your name on it. Take care stay safe and keep fighting. Sue xx
I too only lasted 9 months after first line. I remember feeling worse about the recurrence than the original diagnosis. Anger, fear and new worries kept my brain very busy at the time.
My consultant was brilliant and we got straight into treatment at the time which made me feel l was fighting back.
Goodluck with your next line of treatment and remember you can always ask those questions via your CNS. Lots of love and remember you can do this again.
I feel for you, having been in the same position, with recurrence just 7 months after frontline. I found the second line of chemo easier and went on to Niraparib afterwards. That kept things at bay for 3 years, and I've had a wonderful time - so for me it was definitely worth it.
I found out last week I'd got a new tumour but my oncologist has said the team think it would be better to wait 2 months and see if it grows, or causes more severe symptoms and if it does then do surgery. Surgery wasn't an option for my first recurrence, but things have moved on since then. I'm carrying on with the Niraparib as tiny bits of tumour left after my second chemo haven't grown.
Whatever you decide has to be the right thing for you, physically and mentally. We all react differently, so none of us can predict how it might affect you. All I can say is there are positive stories as well as negative ones, and we're here to support you whatever. Wishing you all the very best xx.
I too hoped for a longer remission and only got 7 months, which should have been 6 really as I was so bloated with ascites.
You are bound to be gutted, that’s a normal reaction.
My onc said don’t look at this a terminal illness look at it as a chronic illness with good and not so good times, it has helped me, I don’t look to far forward, just plan for the near future.
I didn’t get the op as it was in my chest lymph’s, in a way I’m glad although at the time I was extremely upset.
Can you call the CNS for answers to the questions you didn’t manage to ask your onc ? Not good to be left wondering, you need answers.
I’m sure we all wonder if it’s worth it when we are at our lowest, that’s natural.
You are strong and you will get through this, I promise.
Thank you Christine ,what you say makes perfect sense ,I'm a bit more together today ,I'm going to call my CNS later ,I hope you are doing alright ,its a b*****d isn't it .xx
Hi, I feel for you and know what being down is all about. All of us have ups and downs. I just had a flu shot a few days ago and my arm is so sore. That on top of my aches and pains from maintenance therapy can surely make a person down. I don’t sleep well, because iv’e been getting charley horses in my legs lately. This is a roller coaster ride for sure. Hope you feel better, 🌺🌺
Thankyou, Cheryl. I don’t know your age, I will turn 74 next month. I sure can tell I’m not getting any younger fighting through this . Trying to stay positive and I keep praying. Keep the faith. Donna
Hi Donna ,I'm doing OK thanks ,had three of six chemo's not to bad, three more to go, midway scan results on the 6th, so getting a bit anxious . How about yourself , I'd wish you a happy new year but perhaps a happier new year is more appropriate .😁xxCheryl.
Hi, you sure have a strong spirit going through more chemo again after being in a little remission. Hope that you don’t have to go through more surgery. I’m doing ok now after they dropped my dose of niraparib to 100 mgs. I will still be monitored with my blood work. This drug is hard on the bone marrow that makes our red and white cells. This journey is a bitter sweet thing. We have our hopes and then something happens again. Take care and keep the faith, Donna ( your November pal). Birthdays
Keep on fighting we all have moment's of despair and yes questions I always kicked meself after leaving an appt and felt may be I should have asked questions ...wish you well and ring them up or email your CNS nurse and ask them they should be able to get you answers.
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