My Mum is currently having chemo for what they believe is either primary PPC or omentum cancer. She had no symptoms other than fluid around her lungs which came back positive with tumour cells of an ovarian nature. Lungs drained 4 months ago, biopsy done and now chemo. Taxol and carbo 3 weekly and weekly and ca125 down from 10000 to 352. Scan after 2 rounds showed some reduction in area of cancer (mum has no obvious tumour) but not enough to warrant surgery yet. Now on round 4 with same regimen plus avastin 3 weekly. Desperate for it to work so she can have surgery. She's been well in herself. Any advice from this wonderful community would be amazing. Much love Sam X
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Hi Sam. Not sure what advice you are looking for but wanted to wish your mum well and say the fact that the CA125 has dropped significantly is amazing. Glad your mum is coping well with the Chemo. Kathy xxx
This sounds like good progress. Don't get too hung up on the surgery - I was diagnosed 3C ovarian cancer with mets in omentum and peritoneum last October - have had 6 carboplatin/taxol, with Avastin added in for the final 3 and now continuing on Avastin alone as they think surgery risky and the drugs alone have got me from CA125 13,500 to 20! Currently 'no visible disease'. Keep going, keep exercising, eat well are 3 bits of advice I'd give. Good luck to your mum.
Thank you for your comments. It's such a minefield of information and I suppose what makes it uncertain is that she is yet to have surgery. I would love to hear from anyone who has something similar and hasn't had surgery just like Harpist. I am amazed how much hope I am getting from reading everyones stories. Thank you xxxx
There don't seem to be many that don't have surgery - there is another lady like me who hasn't that I've chatted to on here. I think the thing is to keep your thinking flexible and take one step at a time - I as initially told I've have surgery after 3, but they said then it was too near the bowel and, as the chemo was working so well they'd persevere with that. They still say 'no surgery' but it may not have been totally written off for the future. the important thing is that they made me feel a whole lot better and I'm glad to be living a normal life now!
How did you cope with chemo and avastin? Mums chemo has been fine but now half way through round 4, she's now starting to feel grotty! Upset tummy seems to be her thing. X
The chemo wasn't as bad as I expected - in fact I was so ill before the treatment that the only way was up! I felt tired the week after but the only other issues were constipation after treatment and a bit of neuropathy in fingers and toes. I think the tiredness got worse as the treatments went on - sometimes I felt a bit drunk and spaced out, but I kept doing walks, meeting people etc and carrying on as normal. The Avastin has few side effects - bleeding gums and a bit of stinging in the nasal passages and that's it. I think side effects vary with different people and on each cycle - and some symptoms I had came and went - eg I had a bit of skin rash and itching after the first chemo, but that disappeared.
I was diagnosed on March 30, 2016 with PPC. I chose not to have surgery. I have had 4 of 6 Chemo treatments and my DR tells me it is working well. We are all so different. I am feeling pretty good most days. I wish the best for you. You are so right...taking each day at a time is so very important.
Hi Crickette - thanks and all the best to you too. It's tough for sure but I do all I can to take control with diet, exercise, lifestyles, treats and quiet time when I need it. And now I have to say my life isn't restricted apart from having to pace myself. The big deal is handling recurrence worries - all a big learning curve. Interested you opted against surgery - any reason for that?
My choice to not have surgery was a very personal and tough one to make. My doctor suggested it and I went to the surgeon. After talking with him, two other Oncologists, numerous friends, my family and reading everything I could get my hands on....it was clear it was not for me. I felt I was going to put myself at more risk, infection, pain and cost. Up until my PPC diagnosis this past March, I was the picture of health. I never have had any surgery. Frankly, it scared the heck out of me too. I have had 4 of 6 Chemos and everything is looking very good. I do not regret my decision. However, cancer is so very different for each of us and we all have to make these hard choices individually. I am so looking forward to feeling more like my old self! Normal, I would have said in the past...now, looking forward to my new normal! I am so glad you are doing so well! I am right behind you! Crickette
Brave choices. My pathway really came from my oncologist who said I'd have better quality of life without surgery and I was a top-rate chemo responder. Glad it's looking good for you and you will feel like your 'new' self soon, I promise - it's all about an attitude of hopefulness and designing your new lifestyle. I follow the holistic guidelines of the Penny Brohn UK charity (see their website) as I believe it's about the whole person - hospital saved my life, but they didn't tell me how to live it!
I have PPC. I had 4 rounds of chemo and surgery and now completing 2 rounds of chemo. I have the same weekly arrangement and avastin will continue for 14 sessions after chemo. I think where you have surgery or even at all depends on how PPC presents. Some people have a scattering of cells all over the peritoneal like salt and pepper. This can be treated with chemo. I had several large tumours. In fact one was described as an omentum cake. Yuk. So chemo to shrink. Surgery to remove and then chemo to sweep up anyour remaining invisible little buggers.
I'm really no expert so please check but I do think that's why surgery isn't always used. Good luck.
I also have PPC, and last year had 9 lots of chemo and surgery to remove omentum and ovaries. My CA125 was in the thousands, and is still high but in the hundreds. Yet I feel well and apart from tiredness ( I put that down to the chemo) feel my 'old self' again. Everyone is different and everyone's disease is different, but there is definitely hope.
Thankyou Alison, I'm so glad you're feeling well again. It's only this past few days that mum has started to feel grotty, but part of me feels bitter sweet about it as I believe it's a sign the chemo is doing its job! How did you cope with surgery? Xx
I was very anxious about the surgery (never had a general anaesthetic before) but it went smoothly. I had a week in hospital before going home and had to move very carefully for a few weeks after that. Really hope all goes well with your Mum's continuing treatment.
Hello, I'm stage 4 ,6 rounds chemo plus avastin then continued with avastin every 3 weeks, my last one tomorrow. Was told that I was inoperable from the start although I've had a few scans to see if I could. Ca125 down from 4000 to 52 so far. Apart from stiffness and neuropathy in feet I am doing ok,was told at diagnosis I may only have a few months, I'm determined not to go anywhere yet, find something positive in everyday, enjoy the little things, never give up x
Absolutely never give up Sally... I have a very good friend who is a Doctor and she tells me constantly that the power of the mind is something way beyond what they as Doctors know. Bring positive gives you as much a fighting chance as medicine itself xx
This is my third attempt to write a reply as they keep disappearing. I don't know where the gremlins are so now I will make this as short as possible. I think I am the no surgery PPC lady that Harpist mentioned. Diagnosed 2011. 3weekly Carboplatin and Taxol for 6months brought my CA125 of 8000 down to normal. I remained NED (No Evidence of Disease ) up to Mar this year when a scan showed some lymph node swelling. Another scan next week will determine what happens next. Your mothers CA125 is coming down very quickly which is great.
The constipation was the worst bit for me. I took the laxitives prescribed and try to eat fruit, drink water and have a little exercise. Before this ipad decides to give up again I just want to wish your mother all the best with her treatment. She obviously has a very caring daughter . My own mother was 90 when I was diagnosed and I was minding her. I continued minding her as it kept my mind focussed on something else . It was good that you found this site as you will find a mine of information here. If yiou need to know anything else just ask . I just wanted to put your mind at rest. I do not fit the statistics and neither should your mother. So now just smile at your mum and tell her you have found one of those rare creatures , a PPC lady who is still standing overv5 years later. Take care
Dearest Molly, what an inspirational post. Mum had round 4 chemo today and her CA125 is now 228. Its dropping about 35% every time and is keeping her hopeful. I won't go into too much detail, but like you Mum is already a survivor against the odds following a bad car accident 6 years ago. She broke every limb and had to learn how to walk again. The odds of her surviving the massive operations she had to fix her knees, femurs and arms were massively against her, but she did survive and now she can walk and ride her bike again. She's a fighter and knowing there are people out there who are survivors and fighters of this horrible disease will really spur her on. Just simply thank you and sending lots of luck for your next scan xxxx
I am glad that my story is of some help. Your mum sounds like a far braver lady than I could ever be. After what she has been through chemo will be a walk in the park . She sounds like a lady who will never give in and with you behind her she has a fighting chance. As I said ask here about anything you need to know. I wish I had known about this site 5 years ago but better late than never ! Will put up post when I get my scan and results. Take care and just take one day at a time. I find I am at my best when I live in the moment and thanks to learning mindfulness at a support centre . My favourite saying is " yesterday is history, tomorrow is a mystery, today is a gift and that's why we call it the present !
How are you doing . Thanks for remembering that I am a member of the exclusive PPC club ! I really like to encourage people and despite my grumpy old worried head I do try to put my best foot forward every day., take care
Feeling really well on my Avastin, Molly, and no visible disease on end of May scan, but today's CA125 was 300, so I'm hoping that's not a bad sign... just when I was thinking I felt pretty normal most days. Oncologist has told me in the past they go more on symptoms than on scores, so fingers crossed.
That's great . I have decided I will only worry if count is beyond 1000 seeing as it was 8000 on diagnosis. My GP did it today as its a hassle when I ask the oncology dept. scan next week followed a week later with results . You feel great and your scan was clear. Happy days !
Fingers crossed for you and us all! You're right, it's all relative with the CA125 - my highest was 13,500 and lowest after chemo was 20. So 300 is probably ok. Let's keep that attitude of gratitude going
Hi. I was diagnoses July 2015. Perforated bowel treated with surgery was very I'll afterwards .then had 6 rounds oc carbo / taxol. Scan then showed Ned so surgery was not advised at that stage. Have just had 8 the Avastin treatment today. Scan 2 weeks ago again showed Ned. Markers 7 The MDT again advised no surgery yet. I have 4 more treatment to go before. Next scan. Feel we'll apart from tiredness and some aches and pains . We can t help but worry, but try not to just enjoy life good luck
Hi guys, just wanted to ask a question? Mum is now about to start round 5 chemo (carbo and taxol) with 2nd dose of avastin. Up until last week she's been fine with few side effects, but this last weekend has been crippled with stomach pains. She described them as colicky with them coming and going. She's a tough cookie, but they've kept her in bed as they are so painful. Did anyone else have these? X
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