Hi, I dont think I have ever posted before though I have derived great comfort from reading others posts. I am in Ireland, my mam, who is 62, was diagnosed with stage 3c ovarian cancer in Dec 2012. Peritoneal carcinomatosis was also mentioned later so to be honest I dont know if maybe that is the more accurate description. She also had a bilateral pulmonary embolism and continues to inject daily with Innohep (heparin).
Excellent surgeon feels she is unsuitable for surgery, she never had a "mass" as such, its more that the cancer "seeded" inside her abdomen, so surgery would have to be so radical as to leave her with poor quality of life, while not necessarily removing all the cancer. Also the fact that she is very prone to clotting. When she was biopsied for diagnosis they drained a huge amount of ascites (bloating had been her main symptom, apart from tiredness).
First line Carbo Taxol failed almost immediately she finished. We were then told the outlook was bleak, but she elected to try Caelyx, 3 doses followed by hospitalisation due to mouth ulcers, couldn't continue, but she got 5 good months chemo free. In April of this year her 3 month scan showed activity, so third line Carbo Gem followed, which she tolerated well. 2 good months once that ended, followed by development of ascites in recent weeks.
Saw oncologist today (no problems with her, very nice, approachable, accessible etc). Pockets of ascites and tumours have grown, compressing bowel. Also something on top of liver. Partial drainage last week (600ml) has given no relief. The fact that it's in pockets complicates drainage. Again, mam willing to try more chemo, so awating a hospital bed to start Avastin and a yet to be decided drug, and another scan to see if more drainage possible. My mam is a lovely brave kind good person, I am her only daughter and we are very close, she is much loved by us all. All we want right now is for her to be comfortable, she can barely eat and feels great abdominal pressure. If anyone has anything positive they can say, anyone who had positive experience with 4th line chemo, or anything at all, it would be greatly appreciated. I wish you all the best on your journey with this horrible disease. I apologise for the length of this.
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marymarcy
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Oh Mary, what a worrying time for you and your Mum. I haven't had anything similar but just want to say that I hope your Mum will soon be more comfortable and that I'll be thinking of you and sending love to you both. You sound a really special Daughter and I expect your Mum is very grateful to have you
So sorry to hear of you'r Mam's suffering, keep supporting and loving her through this hard time. I supported my daughter Jaci through her OC journey and know how important it is just to be there. Gillx
Sorry to hear you and your mam are going through this.
I'm supporting my mum too but mums been told to have quality of life over quantity and right now mum is doing that (chemo wiped her out but she's had a lot of it).
I know it's hard but please be strong and positive.
Dear Mary, my heart goes out to you and your family, such a difficult time for you all. I have primary peritoneal cancer, since early 2012 and currently on third lot of chemo, Caeylx this time, half way through 6 sessions and doing ok, I think! Ascites is horrible and personally I believe the pain and discomfort is causes isn't always recognised. I had third lot in the summer and this was also in pockets so had to be done using scan for accuracy
to avoid organs. I had three drains! Almost immediately after awful pressure and pain, I felt better, such relief. The initial partial drainage didn't help me much either and annoyingly, along with my key doctor, I had to fight for the additional drains but I had no choice. Perhaps you might consider pushing for the drainage your mum needs, using ct scan??
I wish you all the very best and hope you can manage to keep us updated at some future point.
Welcome to our friendship group. I'm glad you've posted because you've had several replies already from people going through the same as you, or dealing with the same diagnosis as your mam. It's a horrendous situation watching a loved one suffer. It's good you are all such a close and loving family and that will sustain you through difficult times.
I'm guessing you are in Eire as your mam has been offered Avastin. That is something to hold on to. Latest trials suggest Avastin is at its most effective later on in a treatment pathway than for first or second line which is how it is made available by the NCDF in England.
I have a similar presentation of tumours which have seeded deep in the abdomen and I'm also not suitable for surgery. It's good it has been considered for you mam because you know the treatment plan has considered all the options.
I hope you feel comforted by all the replies. You're doing a great job for your mam. You could also ring the Nurse Helpline at Ovacome. They are really wonderful and I'm sure will give you good advice. The no is 0845 371 0554.
No apologies required. Unfortunately I can't give advice as not got that experience but I am sure some ladies will be on to help. Sending you both a big hug. Ann xO
I to had a great amount of as cites which was pushing all my organs upwards which made it difficult to breath and was very uncomfortable. It was hard to get the hospital to drain this but in the end had three drains taking 20 litres of as cites. After that there were pockets of it. The consultant said that the chemo would get rid of it which it did eventually.
I had three rounds of chemo but after the first one I was extremely ill and for the next couple of chemo only had one type instead of two. I don't think I was well enough to start it in the first place. I have stage 4 ovarian cancer which had mastersised, had the Infusion in my left lung and clots in the other. I have been having fragmin injections everyday since March this year.
I had a scan after three chemosynthesis but the secondaries had not shrunk enough for surgery. So had another 3 but back to two sets of drugs another scan and 5weeks ago I had debulking surgery, they took both ovaries, Fallopian tubes, womb, the omentum part of my bowel and some other bits and pieces. The surgeon said I have a small amout of cancer behind the small bowel. Now seeing my consultant tomorrow to see what's next.
The specialist nurse said I have peritoneal disease.
I am sorry if I am rambling on just trying to explain my journey so far.
Woody 64
Hi Mary I am also in Ireland way down South. I am indeed sorry your Mum is having so much trouble with her OC. Well I am on Avastin and tolerate it fairly okay. I have been on it for twelve months now. Maybe if they could sort out the ascites, your Mum could eat and gain some strength to have something else with the Avastin. I agree maybe about another ct scan to see where the ascites still is and drain it if possible. You must be a great support to your Mum at this time and I am sure she appreciates it. One registrar explained oc as a load of spaghetti knotting its way around the tummy, it is not a tumour as such. I had gemzar with the avastin and it worked for me. I would advise you to talk to your Mums consultant as soon as she gets a bed and ask her about any options your Mum has. You can ask the duty nurse to call you when the consultant is around and you can speak maybe in a private area. Wishing you and your Mum the best. There would be nurses gynae liason nurses attached to the main hospitals that you can also talk to.
Hi Mary - as above I am so sorry your mam is having to go through all this but also glad she has you for support. You perhaps don't appreciate how important you are but believe me, we all need someone supporting us through this awful journey.
I understand from a previous post from a lady living in Ireland that you have very good access to chemo drugs so take heart from that. My youngest Daughter moved to Ireland last year and it is a comfort to me to know this.
I hope they can continue to treat your Mam and keep her comfortable.
Hello Mary and mam. You will find this support group a great help and will hear first hand from ladies facing what your own mam is facing. I am on Avastin, after 2nd line carboplatin and gemcitabine and tolerating it well. Keep pressing for answers to get mam more comfortable. Wish her all the best, hugs and love from London, Irene xxxx
I live in Dublin and have stage 3C. Your mum has been having a bad run of it but when it works for her the Chemo seems to giving her small remissions. I am currently on Etopiside and Carbo and it is working very well for me with few to non side effects. I am on 3rd line treatment and I have had a similar journey on the Peritoneal side of things . I am sending you and your mam all my love and best wishes.
I would recommend contacting the consultant to ask if they can arrange a drain (or drains) whilst they are doing a scan, they did this for me - they can do it during a CT scan or using Ultrasound.
Remember also they are looking at other chemo and Avastin so try and keep positive they will make her a lot better and keep her symptom free. Be pushy re the drains as I think they need to be pushed on this as I do not think they always appreciate how the fluid affects quality of life/being able to eat. They were monitoring what I ate in hospital and had me down as scoring really low as I could not hardly eat with the fluid which is only something I suffered from before they got my ascites under control. Good luck and take care x
My heart goes out to your Mam , because no , no one knows just how awful ascites is !
Guided drains are not pleasant , far from it ...
BUT the relief is worth it . You feel SOOH much better !!
Ascites also causes imbalances in body salts/minerals , dehydrates you ( ironically ) ,adding to the ghastly illness .... if the chemo works , yes it can abate naturally , but it takes time and travelling for chemo when you feel so grotty makes the experience so much worse .
Comfort and relief , has sadly to be fought for .
A compromise could be reached when Ascites develops in pockets , to drain some but not all ? ( so , I had one side done but not the other . )
Then hope ....I have had five major drains since diagnosis in April 2011 , four lots of chemo ...all the debulking on offer , and at the moment , perhaps a lull before the next storm . But , a success story in a way and to be forwarded ...
Lots of strength to your Mother , and to you ; so hard to do all the supporting and worrying .
Ladies thank you all so so much. I was nervous posting initially, afraid I would hear things that would scare me more I suppose, but I'm really glad I posted. It has taken me till now to digest your replies but I will tell mam tomorrow and hopefully will help to give her strength.
I will definitely push for more drainage and thank you for that advice. I think I was too shocked on Tuesday to push for anything or to know whst direction to take. It's a privilege to be able to support mam, she has always been so supportive of me. Even now she is more worried about leaving dad and us behind than anything else, although we are far from babies!
Whippit, yes we are in Eire, in the southeast, and Suzuki, the spaghetti analogy is a very helpful one. Mam is very practical, farmed with my dad and brother all her working life so well used to helping sick animals and carrying out procedures, not remotely squeamish and so she was jokingly contemplating doing some drainage herself, made me pull out the old World Book encyclopaedia to look at the human body, I hadn't realised just how much space the bowel took up, I could see more clearly what surgeons or oncologists have to grapple with. So we decided on balance it was better to leave intervention to the professionals!
Thanks to all of you for your kind words and for sharing your stories. I wish you all joy in your lives and continued strength in your battle. Xx
Hi Marymarcy, I have a brill oncologist here in Cork who was many years ago attached to Waterford Regional, he is a good kind and informative man, do you think you would like a second opinion so ask oncologist. It is very hard when you go for a check up because you are scared to hear bad news and then I know I lose the run of myself and say nothing but look blank. It is only a few days later you go over things and said I should have said this or asked that. I possibly have met your Mums oncologist at an Ovarian Cancer information day in Cork, I know at the second last one there was a lady onc from South East, in fairness she did sound fairly informative and up to date. There is also another site an Irish Site called Ovacare which you can join. It is based in Cork, there is a coffee morning coming up here on the 8th Nov at the Clarion Hotel if you could attend. There is also an information day but its in Galway on 22nd nov. There could be a gynae liason nurse attached to your hospital, there are also support groups in the South East I think your nearest one would be Solas if I am correct. wishing you well and hoping that this information is helpful to you, best wishes
Very helpful Suzuki. Not sure how I missed th Irish Ovacare site! I think I have figured out who your oncologist might be, I presume naming names is against the rules, not sure how to send a pm?
I have discussed second opinions with mam on a couple of occasions, she has opted not to so far, but no harm to have someone in mind to go to as wouldnt have had a clue otherwise who would be a good option.
Hi. I know that lots of others have replied to you already, but just wanted to say what a wonderful caring daughter you are.
IN relation to ascites - I know the feeling and discomfort it can cause, as it happened to me once, but with drainage the relief was great. I'm on 3rd line treatment with carbo/taxol//avastin and hoping it will bring a long remission time again. I know that the drugs will have to change the next time but will deal with that.
The bowel blockage/obstructions are a problem and I had 2 'procedures' carried carried out to help me, as a loop in the bowel was blocked and the pain from it was dreadful, but with regular laxatives and plenty of pears & kiwis, (not sure if anyone has mentioned those 2 fruits to you) I still struggle to keep on top.
You mention you are in the south-east - I'm in Cork, but if you decide to come to Cork for a 2nd opinion, do get in touch with those of us here, and if your Mum is up to the journey, she might like to chat/moan/talk to some of us also.
Each of us reacts to OC in different ways, including the way our bodies react to the drugs and we always seem to forget that there are variations of OC around also. I'm on avastin for nearly 2 yrs now and thankfully no perforation problems.
Say hello to your Mum, who is my age - young!!!!!! a bit wrinkled and crinkled I have to say though.
Thank you again, but she is a very caring person and very easy to care for, never complains and always good humoured, it would be hard not to be caring towards her. We have had good fun even on this horrible journey.
Mam has always tended towards constipation, for many years, so quite familiar with kiwis, pears and a myriad of other things, and what works very well for her are Colax aloe vera colon cleanse tablets (health food shops and some chemists stock them). Who knows, might be a suggestion for some followers here to try.
You're certainly young! I know there are probably days when you feel like you are 100, but I hope plenty of youthful days too! I'm so glad I posted here, and will definitely think of those of you in Cork if we take a trip down.
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