Hello Ladies, just to let you know the oncologist rang with my CT scan results today. The Taxol obviously stopped working a few weeks ago and the cancer is progressing slowly but surely. I don’t yet know the new dimensions of the tumours but the tumours in my liver have increased. I’m going back on single Carbo which I had for first line treatment. It worked for 6 months in 2018. Anyone else gone back on Carbo after a long period and had a good result? I’m naturally worried and disappointed but at least they’re not giving up on me altogether. I mentioned surgery but the oncologist assured me the Carbo goes right through the body including the liver. I’m not convinced. At least they haven’t written me off which I half expected. Bit tearful at the moment but I know I shouldn’t be.
Love to you all Angela xx
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Gemimablackvelvet
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Bless you, Angela. It is OK to be emotional. Let out the build up of stress. I don't have an answer for you about Carbo but sending you a very big hug xx
Dear AngelaI'm very sorry to hear that. I'd been thinking about you and wondering how you are.
I'd been hoping the Taxol was keeping things static for you.
Really hoping the carbo will stop the progression .
Would you be able to look at trials too? Hopefully others here will have experience and suggestions for you.
Feeling tearful is completely natural, have a good cry....you're bound to be upset after taking that call. I hope tomorrow you will feel stronger again.
Hello again Liz, thank you for replying. I should be thankful they’re going to try again. I would just once liked to have had a reprieve and a few months of NED. I’ve never had that like many other ladies. I expect I’ll feel better tomorrow
Angela, I am so very sorry to hear that your cancer is progressing. I know all too well that sinking feeling and the angst that comes with it. We know it is a possibility but we are never truly prepared to hear that our disease has not yet been conquered. Be tearful, be angry, be emotional ... you have been dealt a setback ... but also be hopeful as the doctors still have much in their toolbox with which to treat you. I have a friend who was Stage 4 upon diagnosis and who recurred in the liver and lymph. Her first round of re-treatment did not include Carbo (I can't remember with what they treated her) as she was only 10 months post initial chemo and she did not see her disease slow. Three months later, her oncologist put her back on Carbo alone and she did well. She is currently at a CA125 of 16 and thrilled. (long may it last!) Though we all know that "everyone is different" I am hoping you have similar results. I have also read studies showing that Carbo alone can indeed be effective in recurrences such as yours. There is still reason to be hopeful.
It all seems so overwhelming now but I believe it will be your testimony later - "I had a tough recurrence and I am now NED!" I can't wait to see that post from you and I have hope and faith that you will conquer this.
Well I’ll take that Sophia. Just what I wanted to hear. Thank you for taking the time to reply. You hit the nail on the head . That sinking feeling. I wish all of us the very best. One day they’ll find a way to beat this. I can’t imagine how the younger ladies cope.
Oh Angela I’m so sorry to hear this. I’ve no helpful experience to share, but hope that the carbo does the trick and smacks the cancer into oblivion for you! For now, look after yourself. Let yourself be sad, disappointed, and scared - that’s absolutely understandable - and I think that it’s by recognising and accepting those feelings that we’re able to gather ourselves up again and face the unknown ahead of us. Xx
I’m so sorry to hear this Angela. It sounds like your team have a good handle on it though so that, combined with your indomitable spirit will get things back on an even keel. Have your cry, try to get some sleep and tomorrow is another day. Sending you big hugs. Xxx
Thank you KBO, I felt like this so many times before. My spirit takes a bashing every so often like so many ladies on here. I’m just going to bed now - it’s going up for 2am. Love from Angela xx
So sorry to hear this sad news. I finished 1st line on carbo only as taxol gave me horrendous neuropathy in my feet - the carbo alone carried on reducing my Ca125 and got it down to 38 from 1486 so yes it can work on its own.
Hi Lyn, I’ve just mentioned to Delia that my oncologist said I’d be throwing myself into the unknown with trials and didn’t appear very keen on the idea. I may go for that eventually. Someone has to try trials (if you see what I mean) great news about the Carboplatin. Love from Angela xx
Hi Angela. You’re allowed to wallow for a day or three until you regain your positive spirit. After all it’s f—Ing cancer that won’t just lie down and disappear. I think it’s hopeful that they want to try carboplatin since that’s the main chemo for OC but so many become resistant to it. But I would also look into trials. Sending hugs.
Trials are in my thoughts Delia but my oncologist did say I’d be throwing myself into the unknown or words to that effect. I’ll probably get to a stage where I’ll try anything- regardless! Carboplatin worked for me but I had a recurrence within a 6 month period but The oncologist thinks it can work again after such a long break. I had it in 2018. Brought my CA down to 9 from 225.
Thank you for the hugs. I need them tonight. Tomorrow will be a better day.
I am so sorry that you have received disheartening news, Angela. I hope the Carbo proves effective again and that you soon receive positive news. Wishing all good things for you.
Hi Angela, big virtual hug to you lovely. This made me tear up cos I too am having my 1st reoccurance and waiting to see what my treatment will be, its very hard not to feel utterly alone and scared but I am putting my trust and faith in my team as I know they just want the best for me. Good luck with your treatment hun I will be thinking of you xx
Hi Brum, sorry to hear of your recurrence. This is my forth so you can get through it. I listened to a lady named Pam on YouTube. She had had 9 different treatments over the years and was still feeling well. She was fro Rochdale. Good therapy to listen to Pam again I’m going to do that this morning. Love Angela xx
Hi. For what it’s worth, I had carbo three times in the past five years and it worked every time, reducing the tumours. It was the gold standard for OC for a long while. It’s good that you are not classed as platinum resistant and they can give you this again. Wishing you all the very best. Jo 🌺🌼🌸🌻🌹
It's shocking, this flipping disease. The most rubbish gift that never stops giving eh?
I could only ever have Carboplatin for my chemo and it reduced my Ca125 from well over 10,000 to 254..so it does do its job. Never NED for my ovarian/Primary peritoneal though.
That was October... By December a separate stage 3 breast cancer had taken up residence and a mastectomy and full node clearance followed in January. Now I am not on Carboplatin but finally am getting nab paclitaxel (for allergic people), Avastin, Herceptin and Perjeta.
Like you I was just grateful they didn't give up on me... Trust in your oncologist and gather your big knickers up and hold that chin up too.
We have no choice but to soldier on... We are strong women fighting for more time. Keep going girl.. You're not alone.
Dear Linda, I remember your case now. So glad you’ve come through it so far. What a journey. You made it! All the best for the next stage. I’ve never stopped wearing big pants since my debunking 😀. We in the north are supposed to be tough. Not so sure I’m a good example.
Hi Angela, I know what you mean when you say it would be great to have a day not thinking about this but you and I seem similar in that it just seems to be one thing after another. I am so envious of folk who seem to be doing well and I know that sounds awful to say. We just have to trust their judgment and do what they say which I think is another issue. Yes we all have choices but do we really. I feel my life has turned into doing things I don’t really want to do as I am told this is the best thing to do. You are such a strong lady and have encouraged me many times. Give yourself a few days to gather your thoughts and then move forward. It’s the only direction to go in Angela. Xx
Hello again Karen, thinking about it we have become ladies doing as we’re told. No other choice. I draw up a list of suggestions for when the oncologist rings and still end up doing as I’m told. We can only put our trust in the experts. I’ve spent the last 3 years trying to enjoy every day as it comes but the big C is always at the back of my mind. I guess we’re all the same. Yet somehow we get there some of the time if not all of the time . Tomorrow is the 3rd Mother’s Day I never expected to reach but here we are.
Hello there. You sound in pretty good spirits this is good. My onc says carbo can work after a hiatus so stay strong laugh lot and watch a mindless thriller. Hugs from france
Hello again Ruebacelle, I hope you onc is right. Surely they wouldn’t try it again if they didn’t have some faith. England just beat France in the 4 Nations Rugby- sorry! 🤦♀️
Hi Angela. So sorry to hear Taxol stopped working. I had Carbo for the second time, although it was not a s single agent. It was with Gemzar and Avastin. It worked beautifully in spite of being Carbo resistant. My docs were pleasantly surprised at how well it worked. Hang in there...praying you have good results as well Best, Nadie
I am sorry to hear that the Taxol has stopped working for you. I am back on carboplatin only for recurrence after 5 years and have mets on the liver... it’s working atm and isn’t too awful so I hope that helps xx
Hi Angela,Similar situation. Ultra sound yesterday shows no ascites so guess it is disease making me so bloated, (there is a lot of omental caking).
No more chemo but put onto Letrozole which I have heard good things about. It is a hormone treatment. I too asked about surgery but was told it was not possible.
Good luck with the carbo. Worked well for me over three lines, Caelyx had to be stopped, and Taxol great for three months then stopped working.
Hello everyone, although new to this sight I’ve been reading your posts for a couple of months. So sorry to hear your news Gemimablackvelvet and my best wishes go to you.Your post has encouraged me to ask for words of wisdom encouragement from the ladies. I was diagnosed with stage 3c July2019 treated with carboplatin and paclitaxel x6 with debunking surgery between chemo. All good for few months so treated with Caelyx x6 progression of disease. The plan is now to treat with weekly Paclitaxel. Any body out there with similar plan? Feeling rather deflated and a bit hopeless thank you
Please don’t feel deflated and hopeless. Weekly Paclitaxel (or Taxol) works very well for most people. Both Carbo/Caelyx and weekly Taxol worked for me originally then progression. I’m now back to Carboplatin anytime now. They’re both very good chemos. I didn’t have side effects with Taxol, just lost my hair. All the best
Thank you so much, that helps. I’ve not been this low and overwhelmed before. I really hope your next treatment plan has good effect. Look forward to hearing your updates Diane x
I’ve recently started carboplatin single agent for third line. My oncologist said that it’s still the best drug on offer and has minimal side effects on its own, so I was happy to be given this option. I don’t have any results to share just yet though. Fingers crossed 🤞
Hi Sherry, I had Carbo/Caelyx in 2019Which worked very well and I mentioned that to the oncologist but he didn’t think my body could stand it at the moment. Maybe that will be tried again sometime.
Apparently not. My oncologist says there’s not enough proof of it working. He said at one time it wasn’t available on the NHS either. Thank you for replying
I expect u feel like u r being expended in thin air , numb, fearful of what may come .... I’ve visualised a t myself but find it too sad to go there .... the cancer rollacoaster sure keeps going up and down and no reason why you shouldn’t have another up! I wish I luckWith what ever is coming ..... have u looked into Orasal ? See what u think .....
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