Hi to all you wonderful women who have posted on this site. I have been so privelaged to read your stories. I had ca overy 12 years ago,when I was 51, treated with carbo/taxol and surgery and had been well ever since until last year at this time. WHEN I STARTED to feel really tired,had severe indigestion ,bloating It never crossed my mind initially that it would be cancer again,but after some false diagnosis, I had a vrus, I had an under active thryroid. In July last year after drainage of 12 litres of fluid of my abdomen (what a relief), I was diagnosed with Primary Peritoneal cancer, did not ask stage, although presume it is a stage 3. I had 3 doses of carbo/taxol then surgery at which the surgeon said she could, t see any cancer and then I had to further doses of chemo. Got my post treatment scan results on Friday and my oncologist said it was clear except a small area on the wound which was, t there before surgery and he is putting down to scar tissue. I know how lucky I am , just a couple of queries. I remain really cream crackerbed , any suggestions? I want to remain really positive but after reading a lot of the posts it seems reoccurrence is a strong possibility so what should I be checking for! I hope this is being proactive and not pessimistic.
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dryden1
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I dont think you are being pessimistic, you are just curious as to how this silly and stupid illness behaves. To be honest there is no great pattern. You have a clear scan now and focus on that. You now recover from treatment and surgery as best you can, be kind to yourself and rest every day. Try and plan something nice in a few weeks. I think planning treats and trips help us along. You will feel tired for a while and have aches and pains but that is normal. If you are ever worried about any symptom, ring Ruth the Ovacome Nurse or go to your gp. I wish you well
I finished my chemo a year ago and am in remission, but as I have said before, am not stupid enough to think it won't return, but Suzuki is right,we are all different and I live my life day to day with my head in the sand!
I read the posts and reply to some, only if I feel I can give input, but we can't all live our lives worrying about what might happen,we are all in different places,with different problems and I can assure you I feel cream crackered every day.
I pace myself, I know I do too much, but,when my body hits the wall, I rest, have a nap and I don't feel guilty.
I suggest you might want to do the same, plan ahead some treats and holidays, breaks ect.It is good not to dwell,I don't know if we are ever the same again,but there are some days I don't think of Cancer and I still absolutely let my hair down and enjoy myself and forget when my mind allows.
All I know is this website is invaluable as we are talking to people who know,as by this point I feel I bore all around me,
Thanks for your kind words. I will try and live for the day and live by the motto Carpe Diem. With that in mind just booked a holiday in Spain for early June. Hope all continues to go well with you
Excellent Dryden! I myself go to Dubrovnik in May and my daughter has her wedding on the beach in Turkey in June, so living life to the max! A holiday to Spain in June is a Good way to start,live your life,no one including those who haven't had cancer knows what is around the next corner.
Its hard, it drives us mad but you have good news. Try if you can to enjoy it and like the ladies before have mentioned your post is a positive one xxxx Trish
Thank you so much for your reply what an inspiration you are. I hope your bowel problem as been sorted out and you are getting appropriate treatment for the kidney function
Hi, I can't give any words of wisdom as I am newly in this club and have only just started my chemo journey (on badge 1 for first session!) I would say though - listen to your body, be as positive as possible however if you are at all worried then, as has already been suggested by Suzuki, speak with Ruth the nurse or your GP. you've recently had a shock and whilst youve had a really good scan result you must now start to believe in yourself again. I hope that my words make sense.!! Take care Clare
Great words of encouragement thanks. Hope the chemotherapy goes well, if I can say I had few problems and I hope it is the same with you. I didn,t feel particularly great 3-5days after the chemo so I rested a lot, the only symptom was aching limbs, strangely enough mostly my knees and I found that hot baths and regular paracetamol helped. No nausea although I did take regular anti emetics.
My hair started to come out after the second dose, so I opened a bottle of wine and got my husband to shave it. The wig that I got from the NHS was great , think it looked better than my own hair because I got lots of compliments
That must have been such a shock, given the length of your all clear for CaOv. On the bright side (which we all try and look for I think) you responded really well last time, and medically I believe you stand a great chance of a good long period being clear going forward. Carbo/taxol gave me an initial remission of over 2.5 years and my oncologist said a good response is a great predictor for same going forward with the same drugs, and she was right. All very best of luck, Meryl
Meryl, thank you for taking the time to respond after all you have/are going through you are still able to give words of encouragement. Yes, I have to tell you it was a great shock but c' est la vie!! Forward and onward
Is it possible that the PPC was a spillover from the CA? PPC is almost always detected in stage 3 or 4. Nevertheless the fact that there are no visible signs of PPC anymore, make the most of it. Will be of intrest to know the details of your CA 125 if you can share the same. My wife is a standard case of PPC at 3C and now with debulking and hipec done and 4 cycles of chemo, she awaits the final two cycles and then the dreaded ct scan. So, once again enjoy yourself now that you are in the clear w/o bothering too much o/w. Will also be intersted to know as to normally (can differ tindividually) , how many days after the last chemo does the body take to recover fully?
Hi, Thanks for getting back to me. Actually the oncologist could not believe that a Stage 1a Ovarian cancer would come back after 12 years so they took about 12 biopsies which were examined by a fair few histologists and they decided it was definitely Primary peritoneal. As far as the CA 125 is concerned the oncologist doesn,t think it is a great indicator of prognosis. So haven,t had it done for 6 months and I have to say I did not ask for the results when it was done. As far as the chemotherapy is concerned I got through both times with very little problems, day 3-5 were the worst days for me , feeling really, really tired and had aching legs-which is a side effect of the taxol, hot baths and regular paracetamol helped with this .
I finished the chemotherapy on the 8th january and have to say at times still feeling very, very tired , not feeling up to a marathon yet-so nothing as changed there. I do try and do some form of exercise everyday because I did read an article, I think it was in the Guardian which said it helps recovery
Yes, you are right - finding forms of exercise in which you can stretch yourself at your pace is very good. I use yoga (download an App and try about 25-30mins on 5 days per week), pilates ionce a week in a class in our village hall and, if I can swim twice weekly in the council swimming pool (not luxurious but the only one handy).
My GP's advice was to "grow healthy cells" by not losing weight, eating healthily, exercise well and REST well...the latter is the most difficult for me but with persistence and patience I'm learning how to use downtime (sitting with feet up) productively, creatively and most enjoyably!
Also, our daughter, who is a respiratory registrar & close to qualifying as a consultant in a London hospital, advises me to "Notice trends, don't set targets" - if you set targets you can disappoint yourself but if you notice trends you can celebrate each little bit of progress!! Also she says "You can get tired, even very tired, but don't become exhausted." She knpws I was very good at over-riding my body's stop button and that is another lesson I've now mastered...taken 5 years since initial diagnosis with one recurrence in Jan 2013 (another major op + dose-dense chemo for 18 weeks) so we are pretty chuffed. My 70th birthday is on Thursday this week and just after my 65th, the surgeon gave me less than 20% chance of living 5 years. So, as everyone else says, one daay at a time and just 'grow your new body's healthy cells' - and see where they take you! They certainly won't take you back to your old life but what maybe waiting round the next corner?
I see you have signed up as a follower of me! It might be a good idea to take aspirin 75mg daily to try to prevent recurrence. See all my posts. Worth discussing with your GP or oncologist, or both. I would strongly recommend it, if you have no medical contraindication to taking aspirin - that is why you need to discuss it with your doctor, as they know your medical history. Ibuprofen, which I take, is another possibility. But always discuss with your doctor before trying anything. If you have a bad stomach you could maybe take omeprazole to protect it.
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Primary Peritoneal Cancer 
1st recurrence ovarian/ carbo/caelyx 
allergic to Caeylx, what now? 
CA125 has risen post surgery. AND Sore and weak and feet and ankles post chemo.
