I am so glad I found this wonderful community as you all seem so helpful.
I was diagnosed at the beginning of March 2017 with probable stage 4B OC.
I had been back and forth to my Family Doctor for six months with mild generalized belly pain, mild distension, and some urinary urgency and frequency. The doctor always suggested urinary infections or just hysteria. I have a strong medical background and just knew something else was going on. This is not an uncommon diagnostic path I have learned.
In Feb 2107 we were on holiday Portugal when my distension and pain rapidly increased, so we cancelled our holiday and flew home to Canada…..the worst flight ever! I went to the Emergency Room, was admitted to hospital, had nine litres of ascites fluid drained and a multitude of tests.
I have just completed my third carboplatin/ paclitaxel chemo, have a CT scan next week, then a consultation with my Oncology Gyne team regarding debulking surgery. Surgery tentatively set for May 25th, followed by three more cycles of targeted chemo. My CA125 was 2200 at diagnoses, rose to 5500 before chemo started, and was 1250 three weeks ago.
I found the chemo tolerable but have had lots of increased general belly pain, feels like Pac-men doing munching and cautery, on days three, four, and five. My Oncology team say this is the chemo actually working on the tumors.
Anyone else experienced this?
I hope the surgery will lessen my ongoing abdominal pain….I am tired of the constant pain. I have the option of increasing my narcotic dose but I hate the side effects.
Thanks for listening.
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midcanada
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I do take extra liquid Oramorph when I need to for the pains in my abdomen, I know it can cause constipation but I just take extra sodium docusate to manage that. I am also on daily morphine tablets and with everything else I take I feel I'm on too many daily meds to worry much about taking more and for me it's all about reducing discomfort and pain whilst also managing to keep my bowels free from possible obstruction . The chemo nausea and side effects are just another annoying thing to have to cope with! It's hard isn't it!
You certainly had an awful experience but glad to see that CA125 has come down and wishing you good luck for for your surgery.
Thank you Clare. I have a good routine going to manage my bowels, nausea, and most of the daily pain. It is the post chemo abdominal pain that I have the most problems with.
So sorry you have had to join our gang but a big welcome .
Yes was on same chemo and day 3 and 4 used to feel like I had a gremlin inside doing cartwheels . Worse at night and used to pace up and down the bedroom which helped as well as drinking lots of water . Found it reassuring in the end as pictured the chemo getting the better of the cancer .
Have a lot in common with you , can sympathise re the flight . I was diagnosed whilst on holiday in Mauritius, when stomach swelled with ascites and I looked like I was 9 months pregnant . Had been feeling well but weeing more frequently . Ended up having an emergency laporoscopy in Mauritius where they drained 5 litres and found the cancer . After having to wait several days before our insurance would let me fly I then had the worse flight ever getting back to the UK . Where I was diagnosed stage 4 ! What a shock ! Has put me off ever getting on a plane again but hoping with time I will get more confident .
Was diagnosed in June 2016 had 4 chemos , radicle surgery Nov , 2 more chemos finished Jan 2017 and now on Avastin for maintanance for a year . Surgery was successful and now No evidence of disease (CA 125 was 3880 and now 9 ! so am beginning to enjoy life again ( keeping everything crossed that it doesn't come back )
So hang in in there , try and enjoy your good days and keep your team informed of any side effects from the chemo so they can help if needed. Sending you a big hug and best wishes for your treatment . There are lots of other lovely ladies on here who are all great at offering support and answering any questions .
I think quite a few of us fell ill abroad,I had a horrendous holiday in Singapore and Malaysia,I lived there as a child and it was my first time back in 40 years.
My Dad passed away before and he always wanted me to go back.When I came back,I was sick with lack of appetite then ascites,thought I had a bug until I looked 6 months pregnant!
I plan on going back and hope the trip is more enjoyable😬
Hi Sally, yes I had pain which I described as a laser zapping the tumour. I had three chemo before surgery and had this for all three. After surgery I didn't get that pain at all for the last three chemos. I hope surgery goes well for you xxxx
I can relate. I had 9 litres drained and a Ca125 reading of 5000. I had chemo and avastin. Whilst on the chemo I felt the funny pains. Like a PAC man munching my belly. My oncologist said it was the chemo doing its job so every time I got the pains I'd imagine the cancer cells dying.
My last chemo was in January. Still on avastin. I'm in complete remission at the moment.
You've had such wonderful response on here from these lovely ladies. I do not have anything to add but Thankyou for asking for advice as I've learned a lot from your replies received. Wishing you speedily relief as I know how painful this is. Bestest Wishes to you Claire xx
I wonder why the abdominal pain I feel after each chemo is not one of the side effects mentioned for us OC patients on the same chemo drug regime? I found the list very comprehensive and somewhat daunting as presented, and my RN team did not mention the fact during my teaching sessions. Odd.
Everyone has given some wonderful input and support. I too hope the surgery goes well. I use an old-fashioned remedy for my severe period type pains - a hot water bottle on my tummy. If nothing else, it's very comforting. Warm regards Carole H x 😊
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