Hello lovely ladies, After 9 glorious months In remission my CNS confirmed by phone that a scan has revealed my cancer is ‘ active again’. I have an appointment with the oncologist on Tuesday but she also said it may not mean ‘chemo’. So, until we know what the plan is I’ve decided not to tell anyone at the moment - our family has had to deal with some pretty big stuff recently.I have been researching treatment options for a first reoccurrence and am wondering if anyone has had Avastin with or without chemo at this stage and how they found it. I did tolerably well on first round and have been really fit since last Chemo just some symptoms the last month or so- though I walked 8 mile last Saturday! Phew!
Sorry for long post- all responses much appreciated
Thank you
Jan.
Written by
Litchick
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Thank you for your reply and for the help you have given us Teal women by participating in drug and treatment trials. I’ve been looking through posts and info on here and am much encouraged. I’m feeling a bit rubbish but ready to go onwards and upwards!
Hi Jan, something I should have saidto encourage you further, I have had 2 recurrences, the second one was the shortest but now Ive been NED for 6 years, 4 months albeit on another trial drug..... dont give up hope xx
Hi. Like you I had 8 wonderful months before first recurrence and am now on caelyx and carboplatin and finding it quite tolerable. I have five days when I’m pretty knocked out but that leaves over three weeks of feeling good. Only one friend whom I see frequently knows I’ve had a recurrence. I wanted to carry on like a “normal” person. Good luck!
Thank you very much. As I read of others experiences I’m feeling more and more positive. Even though I ‘knew’ things were not right it’s a bit of a shock when you get confirmation.
I had a recurrence Feb 18 I had 14 months clear, I had Cisplatin/ Taxol started off on Carbo but had anaphylactic reaction so changed to Cisplatin. I am doing really well at the moment.
Sorry about that , after successful surgery and a Ca of 10 after Carbo platinum I had 3months clear, unfortunately they discovered a nodule in vagina removed it 2 days later and did 6 more chemo 's different one can't remember the name, anyway see what they offer you ,I am platinum resistant so just on Taxol at the moment.
We all all react different, I say my cancer comes out to wave to annoy me that makes me more determined to drown it how dare it!!
Sending you positive thoughts and hugs and hope you have a good appointment.
Thank you Ann, I’m sorry to hear your reoccurrence happened at 3 months. I love how you describe cancer as annoying- I agree it’s a flipping nuisance. I’m feeling more positive and so grateful for the opportunity to post on here. Sending you encouragement and strength.
Jan. xx
Hi Jan. I hope my story will give you encouragement. But first of all I'm wondering if your CRN told you what your ca125 had risen to and also what your stage was when diagnosed.
I was diagnosed in Nov 2011. 3c. It was a terrible shock as I'd always been a healthy person. I had the usual 6 months of chemo & 2 ops (boob to pube) & then straight into remission. My onc told me there was a 50% chance it would be back in 2 years. After 18 months it was back. There was an Avastin trial available at the time. Was I interested? You bet I was! It was an indefinite trial. I didn't know at that time that trials were usually for 6, 12 or 18 months max. It was along with carbo/caelyx. Caelyx I found difficult - lots of side effects. After 2 months my onc reduced the amount of caelyx as I couldn't tolerate it. It still wasn't easy but I could manage it. Again I managed to go straight into remission after the 6 months of chemo and have remained on the avastin since (now around 5.5 years). I have an infusion every 3 weeks. I have a port installed in my arm. I think the avastin has done close to all it can for me now. But really I've had very few side-effects. But my blood pressure is now about as high as it can get. I need BP tablets but I don't think I can take more pills. Apart from that, the only side effects have been a runny nose & sneezing. Not bad I think. I credit avastin with this & also good care from hubby, family, docs & hospital.
I had a PET/CT scan 7 months ago which showed small new growth. My onc said he thought it was probably worth keeping with the avastin. I had another PET/CT scan last week. I honestly never thought I'd 'survive' that one but I did. Again, a tiny amount of new growth but my ca125 had gone down by 1 (to 40) and so my onc has judged it's worth keeping with it longer.
And you thought you typed a long post. Good luck. Pauline.
Hello Pauline, thank you so much for sharing your experience of Avastin and your other treatment and wow 5 years sounds pretty good- all be it with the BP issue.
My diagnosis was High Grade stage 3 and I had the ‘zip’ op and 6 rounds of chemo ‘big guns’ with a great response and few side effects. NED March 2019. I’m interested to hear if the onc’ will say I’m platinum resistant now and if that could limit further chemo options .
Before I got this dammed nuisance of a disease I exercised regularly, ate healthy ,drank only socially and have never smoked.All summer I worked hard to regain my strength and was cycling upto 10 miles and walking regularly. So I’m hoping once again this will help my body tolerate what ever treatment I have.
My spirits though are being raised by all the great women on here who have offered so much support and encouragement.
In return I send you positive thoughts, a big hug and best wishes for continued well ness.
I too have HGS stage3 and recurred 9 months following surgery and first line chemo. For the recurrence (2nd line) I had carboplatin and caelyx which gave me another 9 months before the beast reared its head again. I’m not considered platinum resistant and on my second recurrence (3rd line) I had 3 sessions of carboplatin before having an allergic reaction. Since then I’ve been on a PARP inhibitor, Olaparib and this month I’ve reached one year without an increase in my CA125.
I’m not as fit and active as I used to be, but this autumn managed an 8 mile stretch of the SW coastal path over difficult terrain l, I was so chuffed. 4 years ago, when I was first diagnosed I never imagined I’d feel so well. Never give up hope.
Hi Jan and Thank you for your reply- nice to hear from another Jan. Along with earlier ones it has helped me feel well equipped to ask informed questions of my oncologist. Whilst recognising we all and indeed all cancers are individuals it really does help to learn from others.
I wish you well on the parp and come the summer more chances to enjoy walking and the glorious outdoors.
Hi Nicky thank you, your experience of stepping outside the nhs sounds interesting and encouraging but think I will wait and see what the oncologist says. On reflection I am wondering if when the CNS said that it might not mean chemo she meant there may adopt a watch and wait approach . All will be revealed on Tuesday and I will post an update.
Sending you a hug and good wishes as we walk this path together.
Hi Litchik, I had treatment with Avastin following chemo after my first recurrence. Avastin works by cutting off the blood supply to the cancer cells and is given as a maintenance treatment: some people have been on it successfully for many years. In my case I was taken off it after a year or so, as one of the less common side-effects is interference with kidney function, the first sign of which can be a sudden rise in blood pressure. And of course if your kidneys aren't working too well that limits the type of chemo drug you can be given. So if you go on Avastin ask your GP or oncologist to monitor your blood pressure and check your kidney function regularly! Hopefully you won't suffer this particular side-effect - good luck to you and stay positive!
Hi and thank you so much for advice- I really appreciate you taking time to share your experience and knowledge. I hope you are as well as you can be at the moment and this flippin disease doesn’t stop you enjoying good things in life.
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