Mum 71 told the worse then given hope, Help please?

[SusanC]

My mum,s caelyx treatment was stopped because of hand and foot syndrome about 4 weeks ago. She was told there was another drug they could use but had to get funding from PCT and to come back in 8 weeks 5th April for the result. For 2 weeks she was back to normal you would not have thought there was anything wrong with her. Then last Friday she started vomitting, could not even sip water. Sunday she was admitted to hospital with severe de-hydrationand put on plasma lyte drip, nil by mouth. Monday she was still vomitting and in terrible pain, they sent her for a ct scan. Tuesday on my way to visit her I get a call from her telling me the doctors had said there was nothing else they could do for her and not to travel as she did not want me upset and having the drive back home again. I obviously took no notice and got myself to the hospital. I arrived at 3.15pm and asked to speak to someone, 20 minutes later a team of doctors arrive, examine her and said that because she was noramlly so active and in very good shape for her age they were prepared to operate. The ct scan showed the tumour had completely blocked the bowel. They advised that they may get her into surgery and find there was nothing they could do and would close and it would be pallative care only. 5.15pm she was taken down to theatre, 9.50pm we got a call to say she had come through the surgery and was in HDU. They were confident they had removed all of the tumour but they also had to remove all of her bowel as well, so she now has a stoma fitted. As with her operation Feb 2010 for debulking she has amazed the doctors and was moved to a ward last night. Hoping to get her up today. Sje asked if sge would have more chemo now and was told they had not invested all there time and resourses not to give her anymore, so in approx 8 weeks all being well she will have more chemo, not sure what they can give her as she seems to be allergic to all so far that they have given her.

Has anyone else had a similar experience? If so how are things going for you?

Sorry for the long winded mail.

Take care all of you.

Sue

Daughter to Sylvia

xx

[BusyLizzie]

Hi Sylivia,

Blocked bowel is a fairly common issue with oc I understand and I know it can mean the end, but for your Mum to have come through it and then be given more chemo is a wonderful sign. I have not been through anything like that yet, but wanted to say what great news this is, and something a lot of us ladies will be storing up in case any of us need it as a precedent for the future. Oooo, I sound all barrister like.

Anyway, the very best wishes for both of you and please do keep us informed as to how it goes. Please also let us know when you find out, which drug they could use but had to get funding from PCT - is it Avastin?

Love Lizzie

X

[Hidden in reply to BusyLizzie]

Hi Lizzie,just read your reply to this and just wondered if you could clear up for me the part of '' a blocked bowel meaning the end'' It scared me a bit can you clarify for me ? Sorry to be a pain but im one who gets worried ver easily Love and hugs Lynn XXXX

[BusyLizzie in reply to Hidden]

Hi Lynn,

You are in remission, please do not let my comment worry you. Susan's Mum has proved with a blocked bowel there can be hope, see Sue's new blog. If you really want to know more then google 'blocked bowel and ovarian cancer'.

Love Lizzie

X

[SusanC]

Lizzie,

Thank you for your reply, I am not sure what the drug is, I thought it may be taxotere, Mum could not have Taxol as she had a servere reaction on her 2nd course so they stopped that and gave her caelyx. Mum has had about 3 bowel obstructions in the last 6 months but got over them and lead a near normal life, gardening, decorating etc. I truly believe it was because so was so active that the doctor thought her worth a try at surgery. But saying that she had no choice really, I am positive she would not have survived very long without it. They could not even get blood out of her because even after 48 hrs on the drip she was still de-hydrated. She booked a party for my 50th birthday on the 24th March at Newbury races and has told me not to cancel that she WILL be there, every one says this is what is driving her on at the moment and that she needs something to aim for. I have questions I need to ask the doctors but they have been and gone by the time visiting starts. Hopefully I can find out more soon, I do know that there was desease in the pelvic area that they could not remove.

If anyone wants any addition information or has a question please do ask, if mums experience can help anyone else she would want me to help if I can.

Sue

x

[BusyLizzie in reply to SusanC]

Hi Sue,

You have helped already by sharing what has happened. I have learnt a wealth of information from the ladies on here as well as ovacome themselves (if you ever need to talk to them, you can call them and they will help answer technical questions).

I completely agree with short term aims. Make sure she has another one for after your 50th! My aim is to get to the end of June, my first wedding anniversary and a birthday I wasn't sure I would see.

I am currently on caeylx, I have just had dose #3. We were about to give up on it after dose #2 but I had a last minute fall in my CA125 marker, so we shall see at the end of the month if it was a blip or a trend.

A very happy 50th on the 24th - I shall be 46 in June. My Mum is 82, so your Mum is a Spring Chicken tell her.

Love Lizzie

X

[nandi in reply to BusyLizzie]

Lizzie so glad to hear you have had a drop in your CA125

Love Dorothy

[BusyLizzie in reply to nandi]

Thank you very much for that Dorothy. It was a 250 point drop. I am feeling confident my next CA125 in a couple of weeks may also be good if things continue as they are. I feel great and am wearing 'real' clothes instead of my woolly expandable bloating dresses!

How are things going with you?

Love Lizzie

X

[nandi in reply to nandi]

I am doing great, finished chemo, had CT scan (no results yet) because we are on 3 weeks holiday in Colorado visiting our son, his wife and our adorable grandson,15 months old Brendan. Thanks to you I saw Dr. Iain Mcnish at Barts before we left. He felt that I would benefit from a PARP trial in the future. I was very impressed with him.

I am delighted you are feeling better and a drop of 250 is wonderful. I have heard of someone on caelyx who had almost 3 years of remission before they needed more chemo. Hope to hear of another drop for you next time.

Love from Dorothy

[SusanC]

Lizzie,

I really wish you well, sites like this are a tremendous help, there seems to be hardly any support groups for Ovarian Cancer and I do believe we get more information from sites like these than from the medical profession. I have spoken to Ruth on numerous occassions since Mum was diagnosed in Oct 2010 she is great. Mum has just called to say they have her sitting in the chair and are taking out the drain and epidural today. Small steps to recovery, my emotions are all over the place, Mum never wanted a stoma and made that clear at the time of her first op but now after all the pain she has endured with blockages I think she wishes she had had the bowel removed during the first surgery.

I am considering asking for her to see a different oncologist though, as hers told her there were not many more drugs for chemo to try, and then another doctor to do with chemo said we have more options available. Never quite sure who to believe.

All the very best

Sue

x

[BusyLizzie in reply to SusanC]

Hi Sue,

Ruth and the other nurses from ovacome will be able to advise on chemo options, but I guess it depends on how your Mum has responded to previous treatments as to how well she is likely to respond in the future. Otherwise, you can always ask your GP to refer you to a different local oncologist. You can tell him which one and where if you ask Ovacome who the local ovarian cancer expert oncologist is in your area. They gave me some great advice when I went for a second opinion - like make it easy for your GP by providing fax numbers and telephone numbers of your preferred oncologist once you have selected him/her. Also get your GP to tell you when the referral has been faxed, and then ring the new oncologist's secretary to make sure she has received it! If you are near London or Leeds you have some wonderful options!

Love Lizzie

X

[SusanC]

Lizzie,

Mum is in Basingstoke, she is not one to complain or rock the boat so getting her to agree will be a different matter. Sometimes we all need someone else to fight our corner though. I will make sure I can travel up and be with her for the out patient appointment, presumming she has one, she did not after her hysterectomy.

Sue

x

[BusyLizzie in reply to SusanC]

Hi Sue,

Normally the surgeons do a follow up appointment so it is surprising they did not do one after your Mum's hysterectomy, but I guess you know that! Does she have a specialist nurse - if not I would ask your hospital for one. They can be real movers and shakers from within the system when you need them. Basingstoke is not a million miles from London, so for second opinions there are some cracking ovarian oncologist specialists at the Royal Marsden, UCL and Barts. I understand your Mum's reservations though - I feel quite shy about saying - I would like to talk to someone else although of course I trust you completely LOL! As ovacome said though, if it was your onclogists wife/mother/daughter they would be getting 5th and 6th opinions so you could tell her that!

I hope your Mum is still coming on leaps and bounds. There are several ladies on here with a stoma fitted, they are upbeat and have incorporated it into their lives even though they have tricky moments they seem able to laugh at them with us. My Mother-in-law always said she will never have one fitted, so if I have to have one at some point in the future I just won't tell her as I couldn't stand the negative vibes!

Love Lizzie

X

[Hidden]

Hi Lizzie, thanks for reply! I got myself really worked up there sorry! Just to say to you too im happy for you that your count is coming down Well done !! I go for check up on Thurs Wish me luck ! Love Lynn XXXX

[BusyLizzie in reply to Hidden]

Wishing you luck, but I am sure you will not need it. Your CA125 came down very quickly on chemo, so I am sure the last few chemos gave it all a good blast to infinity and beyond.

It is hard not to read read things and get worked up, so I understand, but obviously I have to let off worries and fears too and sometimes perhaps they are a bit too specific so sorry for that.

Love Lizzie

X

[Hidden]

Gee Lizzie you are a great source of info and love and friendship on this site so dont you be worrying about letting your worries out! You care for everyone on the site and always have an answer. I think i just read the bad bits im so scared and always looking for hope you know! Im sorry if i gave you the wrong impression and thanks a million for your good wishes for Thurs. Im not very clued up on my disease and sometimes get things mixed up (think i got chemo brain still) All i know is that it is nasty ut there are lot who have survived i pray that ALL of us on here do too Love and hugs to you Lizzie and thank you Lynn XXXXX