Hi all, I'm finding it really interesting reading about all the new treatments that are being given now. It was 8 years ago that I was diagnosed with Stage 3C and none of these, after op/chemo, was offered to me. It shows how quickly things can develop and I hope it gives many of you hope of what the future has in store.
Best wishes to all, Zena x
Happy New Year, Zena! Many congratulations on your 8 years - that’s really wonderful. Yes, it is so reassuring to know that the options for us ovca ladies have improved and increased if we are unlucky enough to have a recurrence, be newly diagnosed or even where there is disease that is difficult to treat. It’s really great - these scientists and doctors and cancer researchers are amazing. Wishing you a happy, healthy and fabulous 2022 and beyond 💖. Mel.
Hi ZenaNice to know you are still well, as am I , 7 years, going on 8 too. Fabulous they are coming up with new treatments, not available to us back in the day. But, we are still here, so totally grateful.
Don’t come here much, just getting on with life, lost friends, but a lot getting on with life too, so not all doom and gloom.
Life is for living and to all you brave ladies Zena and I are examples it can be done,
Happy NewYear xx
Carole
Great news Carole that you are also doing so well. There's not so many of us that keep in touch on here. I think once things are going well a lot of ladies try to avoid the subject as much as possible (only guessing of course). I like to keep up with what's going on and to try to give some hope, as do you.
Best wishes for the New Year. Love Zena xx
Hi Zena,I hope you are doing well. I too find it interesting. When I was first diagnosed in 2007 I remember asking my then Consultant what would happen if the treatment didn’t work to which he replied ‘then we will try something else, there are new treatments coming along all the time’. He was so right. Best wishes, Kathyxx
Hi Kathy, I've suddenly got my email notifications back. They disappeared for no reason about a year ago and have now suddenly come back again. Weird.
I'm so pleased you are doing well. I've forgotten, what stage were you? My consultant told me the same thing. Of course, I knew that new things are discovered all the time but it's good to hear it. xx
Hi Zena, I was diagnosed 3b. Brac2. Yes it’s amazing how things are moving. I have now trialled 3 new drugs, in fact still on one for the last 8. Xx
Wow 8 years. You are cancer free for the moment how did you do it?
I did everything my medical team suggested. I've been very lucky and I'm pleased to say there are many of us out there but not all on this site. There is always hope. xx
I am so happy for you. I did everything my team suggested as well had I year of remission the rest chemo and now radiation. Down to one tumor they are zapping but am sure the next scans will show a new crop of tumors. I have not had resectioning or stoma or ascites or pleural effusion just the odd tumor here and there. This one is on a node hence radiation. Am delighted you have escaped the paradigm God bless and may it continue
I hope that when you finish radiation that that will be the end of it for you with no more tumors. I'm I glad you can see the good side regarding the things you didn't get. It could always be worse. I'll be thinking of you and wishing you the best. x
Well received wisdom is that the cancerous cells continue to pop up. The notion of being done w it is seductive at curie they will want me to go back on chemo as soon as I've recovered from rad. I plan on delaying if there is no tumor on the scan as I seriously need a breather. Hugs from. Paris
Oh Ruebacelle, you must be exhausted. Let us hope for good news. I'm sending best wishes, Zena xx
Such good news Zena. Are you on any maintenance drug now?
No, I think it's too late. I just keep my eye on things. Of course, every time I have an ache or pain I think I've got cancer again but I guess that's only natural. xx
Lovely to hear from you Zena. It’s gives us all such hope. Keep posting. I know some ladies get a little conscious about posting positive news but they shouldn’t. We need more and more good news stories because it gives us hope to soldier on Sending you lots of good wishes and love ❤️
Happy new year Zena, I too read on here about the many treatments now available that weren’t when we were both diagnosed all those years ago. It’s gratifying that such tremendous progress is being made in the treatment of OC which offers hope to us all. Take care and stay safe lovely ❤️Xx Jane
Hi Zena. Happy New year to you! And such great news about your story. Do you mind if i ask if you have had any recurrences in the past 8 years and are you on any maintence drugs now? I've just started my chemo following debulking surgery (stage 3a) so I'm still a bit new to OC and trying to get my head round it all. Thank you! xx
Hi and Happy New Year. No, I've been lucky to not have any recurrences. The worst thing was a blocked bowel a few years ago. I didn't know about them then but apparently, after the surgery you can get them at any time. I've never been on any maintenance drugs so feel extremely lucky. I was never offered anything but regular blood tests and a CT scan. I still test my CA125 every 6 months just for peace of mind.
It's a difficult thing to deal with and we all have our own ways. All you can really do is follow the advise from your consultant and surgeon. Good luck with the chemo and take care of yourself. xx
Gosh that is excellent news that you haven't had any recurrences! Best of luck to you and long may you continue to be cancer free!
Thank you so much. Best wishes to you also. xx
Happy new year, Zena. Good to hear from you!
Happy New Year to you to. I haven't been on much as I've had no notifications. Now they're back I'll be looking much more regularly. I'm please to see there are still some names I recognise. I hope all if well for you. x
I've been ned on Olaparib for twenty months. I'd prefer to not be on meds but I know I'd have been in bad shape without it and I'm lucky it works for me.
Hi Zena, my wife too has started on year 7 but with recurrences . Glad to.know you've been free of OC since 8. Take care and God Bless
I too restarted looking at our site after a lull ..Any idea whereabouts of Joan (Suzuki) . Haven't seen her on this site for a while so the concern.
Naimish
Hi Naimish, I'm sorry to hear that your wife has had recurrences but good that she's getting through them.
I've only just started to see peoples posts after about a year of no communications. I tried to get on for about a year with no luck and then all of a sudden it's back to normal. I haven't seen anything from Joan but let's hope it's because all is well and she's just getting on with enjoying life.
Best wishes, Zena
Hi ZenaJ, what stage were you diagnosed at after chemo and surgery? I am stage 3/4 because it spread. Do in Oct. of 2019 and have been on niraparib since July of 2020. I’ve had a few breaks once in awhile for my blood being off. I just came home from the hospital from a bowel obstruction which I have had two of these in the past from 2 other surgeries. They are so painful. Happy to see that you have been doing well. So far, my scans don’t show any recurrence, thank goodness. Wishing you well, Donna U.S. xx Too many abdominal adhesions can make you at high risk for bowel obstructions.
Hi Donna, you sound very much like me. I was stage 3C due to spread. During chemo i had a couple of blood transfusions but after everything removed and chemo I didn't have any other meds for the cancer just for neuropathy and laxatives due to bowel damage. My bowel blockage was about 4 years after surgery and nothing since, luckily. I've had no recurrences, again, luckily.
You sound like you're doing really well so I send best wishes for the future and a happy new year and many more of them. Take care, Zena x (UK)
Hi again, did you ever take a parp maintenance drug after your chemo and surgery? I have been on Niraparib since July of 2020. My dose was lowered to 100 mgs. from 200, because it was affecting my blood counts. I had a blood transfusion in Sept. of 2021, but have been doing ok since then. Once in awhile the dr. took me off for a week , because of the blood work not being good. So far, I have been doing good, except for neuropathy and bowel blockage. You sound like you have been doing good lately, so happy new year and sending my best wishes. Take care, Donna xx
Hi Donna, no, I was never offered any maintenance drugs after my chemo and surgery. I'm guessing it wasn't available at the time and I believe it is too late once you've been NED for a year. I've been extremely lucky and wish I had a wand that I could wave to make everyone else the same.
Take care, Zena x
Just saw your message, and the parp probably wasn’t available. You are so fortunate that your cancer hasn’t returned. Wonderful blessings! I hope that I can continue the same way. Donna
I guess I repeated myself a little, just reading my previous post. I guess my age is catching up to me. I turned 75 last November, a milestone for sure. I know there are a few of us older gals on here that are on this cancer journey. I think there are a few a little older than me.
Unfortunately, there are all ages. It's the younger ones with young children that upset me even more, although I believe all life is precious and we mostly all have families.
I repeat myself all the time, mainly because I can't remember who I told what to. Some people hear everything several times and others not at all. It doesn't matter they can always stop me.
Getting older hasn't stopped me doing things. I love retirement it gives me time to pursue all my many hobbies. It's a pity we can't travel at the moment. I really miss my overseas holidays.
Anyway, I'm waffling now. All the best, Zena x
Good morning, I have my app with theOncology Gynae this morning, it is the first app but I have already had the MRI scan that was diagnostic of a Mucoid cystic adenocarcinoma. Worse part is that I am a Dr myself, so know things but not enough (my area is sports medicine of all!!!! ) and that is really driving me mad. I suppose that taking the sit for the ride is going to be really difficult, but ... I am completely asymptomatic, just found a lump in my tummy and there it was... I know my abdomen is free of big metastasis but also know that cancer cells go everywhere... I have million of questions: can I still run, swim, have sex... I feel fine... Sorry.
Hi there dolphinsurfer
Thank you for your reply. You’ve shared that you have a million questions right now and we understand what an overwhelming time this can be. If you would like to chat things through with a member of our support team, please don’t hesitate to get in touch. You can call our support line on 0800 008 7054, email us at support@ovacome.org.uk or send us a message directly through this forum. We’re here Monday – Friday, 10am – 5pm, and are happy to talk through anything that may be on your mind.
Best wishes
Annie
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Finding the way forward
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