Have been reading( lots of the blogs to day as SO much time to do it... I am very disappointed in my body and recovery, but accepting more and more that this is a chronic disease and to be lived with and treated whenever possible.
Diagnosis 3c December 2011, 3 cycles of carbo/ taxol prior to surgery. Ca 125 at 2089
Count dropped well of the courses down to 300's before surgery.
TAH/BSO. Plus rectum plus omentum plus appendix
3 more rounds of carbo/ taxol, ended in June 24/06/12. Ca 125 =128
Changed everything in my world, became dairy free and vegan macro/biotic at diagnosis.. Lots of mediation and acceptance of issues troubling me beforehand.
Felt ok on treatment, tired, tingled extrembetories, lost my hair etc but can live with all that.
So sure all would be well.
Had a nagging., pain in my rib even in last 6 wks of chemo. Oncologist sure that it is linked to omentum surgery,but it was harsh not like normal adhesion. Gabopentin medication very effective. Asked for body scan which I had at mount vernon middx ( different to where otherv
treatment given) I also sneaked in a ca125 request,,which came back at 800!
Plan was to try tamoxifen for a cople of months as only off chemo 10 weeks!!
Then body scan showed lots of ' Rice Krispies / barnacles/ encrustations down descending colon,out side liver and diaphragm area.
It was decided by me that the tamofen didn't stand a chance of putting out this re ignited flame, which I feel never went out just damped down.......so chemo to be restarted and then go onto tamoxifen at the end of then 4-6 cycles. Apparently 20% of ovarian cancer patients will react to this mainline breast treatment. Worth a try
On Monday at 1 am I woke in terrible bowel cramping pain. So bad I ran around the house like a headless chicken! Took swigs of oral morphine stale in the fridge... Comical on reflexion but I knew as a nurse I was obstructing...... Son called 999 and I was brought into hospital.
Pain management excellent, and steroids to reduce bowel inflammation in a pump form. Bowel calmed down and cleared! Yhee...... Meanwhile chemo recommended different prescription .. Carboplatin and gemCarb ..
Today had ascites drained 2 litres,mso not as bad as 9 mths ago when it was 5 litres.
Thoughts.. Mine.... Shame... Not a good prognosis the medical staff seem to say that then longer the first remission the better the outlook.... I truly do not think I went into remission so where does that take me? I have to believe that this new combination will be more effective.... Going into bowel obstruction is scary and painful, it is still moaning as I type !
I remain positive and defiant. My lovely daughter in law brought me in a bracelet today,a silver bangle and it has twisted around inside and out ' EVERYDAY .... Holds the possibility of a miracle' I shall wear this with pride and determination to survive.
Any thoughts bloggers?
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MidwifeGill
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Thanks Gwynn x awaiting drain removal which was horrid last time x
Hello Gill
During yet another sleepless night I am on here again. I have just read your blog. You where kind enough to reply to mine and I value all the kindness, friendship and support I have received from the members on this site. I am thinking of you and am sorry you have had such a tough time. Although everyone on here has the same story but with variations on the theme we are united in empathy for each other. My best wishes to you my friend.
So sorry you are going through the mill at the moment. Your daughter in law sounds lovely. What a lovely gift and very thoughtful message.
I have heard of ladies who didn't get a good remission 1st time around but then went on to have better remissiions later on. You may respond better to a different chemo.
I always think whilst there is a breath in my body there is always hope.
I also had a bowel obstruction, but this occurred during chemo. I totally understand about running around like a headless chicken thing. It was the most painful thing ever and I spent a few days in hospital. Rest well, and trust me .... the bowels will settle down.
thank you blue 100... I came home from hospital and am having steroid pump changed daily by nurses. Day 12 today I forced the bowel to work by taking 6 sachets of laxido, and we have a tsaumi
I hope you have managed to have a bit of sleep and that you're in a better state this morning. As someone said, we all react in different ways to different chemo regimes. Positive hope is where it's at though. You sounds as if you have a wonderful family, loads of love and wishes coming from everyone on here too. I, for one, believe in the power of positive thought and the love of family and friends. Sending you a hug.
Hi there, sorry to hear about your painful obstruction. I've never got into remission at all despite 2 chemo regimes back to back (I've also had 4 different surgeries now over 2 1/2 years). Because I don't respond to chemo I had surgery in a specialist centre in Basingstoke in July that managed to clear out all my disease, which was also 3c and had spread to the outside of liver, pancreas, spleen etc as well as multiple small tumors as you describe thought abdominal cavity. Just thought I'd mention in case the chemo and tamixifloxen doesn't do the job.
woow.... delayed but only just back on line...licking wounds what a journey you have had as well..... like you i am not getting any rest from the beast. The chemo just dampens down the fire briefly. That is amazing that they have cleared out your disease! who do you see and where... I may ask for 2 nd opinion....
I think the tamofifen will work like a placebo.......
Dear Gill, If positive thoughts can lead to a resolution to your situation then you, more than anyone I've ever met, will succeed. I'm really hoping the new cocktail works. I hate the idea of your having a drain. Several people have mentioned this treatment and it sounds pretty beastly but whilst it may be crude it seems to be effective and will make you more comfortable.
As a distraction to your problems I went to the talk by Professor Hani Gabra last week and I intend to post a transcription of what he said but thought I'd better check my understanding before posting on this site. Sometimes we hear what we want to hear! I've never met such a positive oncologist. He says treatment for Ovarian Cancer will change in the next four years. His research looks at the minute detail of cancer and its treatments - the DNA. Apparently chemotherapy changes the DNA and for us it mutates a protein that usually fights the abnormal cancer cells. Gabra works in a syndicate across several countries and there's evidence from trials in Denmark that they have found the antidote to prevent the change to this vital protein. The first trials go ahead this year, with a greater sample next year.
Hold on in there girl! There's hope for us all on the horizon.
Take care. I hope you get home soon. Lots of love, Annie
I read your reply to grey badger and I think I may speak to Dr Gabra myself and offer to be guinee pig. My spirit guides told me tonight that a drug I am soon to take will work... sooooo. Cleared the obstruction today with 6 sachets of laxative, though 12 days with no bowel movement too long.... it worked, so still on steroid pump and chemo, now have to deal with the rising cancer again.... x Gill
Hi Gill, just wanted you to know I am sending good thoughts your way with lots of love and hugs. I have had a blocked bowel and only a few weeks ago I was in hospital with pain and vomitting as my bowel had started to play up. It does settle down but it is really painful so hang in there.
Your experience takes my breath away and I take my hat off to you for your endurance. I lost the rectum at my last surgery, hence permanent colostomy but my experience has been nothing like yours!
margaret, I lost 1/2 my rectum in surgery but no colostomy... but after 12 days when you think you organs are failing, I was preparing to have one just to help elimination from my battered body x still early days but thank you for your words... we are all on a horrid journey x
Just wanted to say it sounds as if you only live a stones throw from me. Mount Vernon is my local although I myself do not have treatment there. I am now on 2nd line treatment (gem-carbo )and I too never had much of a first time remission, but hey ho you know what they say 'pick yourself up dust yourself down and start all over again' Yes, this is a s--t disease we all have terrible dark days and I can only imagine what a bowel obstruction must be like but you can do it girl, please let use know how you get on, sending lots of hugs x
I very much agree with the sentiments on the bracelet. Great!! I have had it since 2008 (no remission) but I am still here - still taking the medicine.
You sound as though you have had some tough moments recently. I really hope you have some calm during the next lot of treatment and that the dreaded fluid stays away.
Thanks sarah..... 4 years sounds good to me at the moment! This week has been so hard didn/t think I'd make another 4 days but I am at home with nursing daily steroid pump and good care, could be alot worse.
Had 2 litres drained and if it happens again I shall have mini port and it can be managed at home as well....i will survive this x
Home. lovely. Your own bed and comforting things around you.
Cursed bowels. I have been waddling around since May with distended intestines that look and feel like I'm pregnant but more painful. I am heartily fed up but I am up and about most of the time so I musn't grumble.
Very sorry to hear what an awful time you are having. Have similar treatment but was lucky to not need chemo before op only six lots after I reacted to taxol so had to stop it and had rises in ca125 when stopped. I also had pain by ribs and have no real answer from oncologist. Was worst during chemo finished begin July and has reduced a lot. My ca125 at end chemo still 72 but have been told no scan needed. I hope you feel better soon I don't know what ascites are. Keep fighting
Hi Sharon.. a late reply sorry, only just online again. You do not say what surgery you had. My pain under my rib came during chemo and they clutched at straws but felt it was surgery related removal of the omentum. They put me on Gabopentin a great drug for nerve pain... do ask. I felt it was a screen, and it was the obstruction I now have is in this area it is the splenic flexure.. 90 degree turn in the bowel going down. This has OC cells rice krispies/barancles attached and clumping and they have swollen thus blocking my bowel! ( I am a nurse so this is very clear to me but maybe not you... do google large intestines and you will see what I mean, and how close it is to my rib pain left sided). My ca count never went below 128 and is now back at 800! was 2089......I will not have them again as it was lomg 2 weeks waiting for scan results after the bloods... worried me silly.
Ascites is water in the abdominal cavity. When the bowel is inder attack from OC cells it tries spasms to get them off and when this doesn't work it starts to flood with fluid in an attempt to wash them off... silly body.... closed unit so it can't go anywhere just builds up like apregnant tummy. When i was diagnosed no one would listen to me, my girth went up by 12 inches in 2 weeks. It was obvious (as a midwife to me it was water feel it eveyday) but No they said it was wind and irritable bowel syndrome!! I have 5 litres first time I was drained, only 2 litres this time. I have read of someone having 13litres! at one draining.
Thanks for support and hope info makes sense x gill
Thanks for that does make sense to me. I have been lucky and only had the big tummy when first diagnosed and was lucky to get my operation three weeks after ultrasound found tumour. I never needed drain. I had debulking with omwntum removed. The pain has reduced a lot I only get it occasionally about twice a week but does seem to be related what I eat as it seems to be wind related where as it used to occur after excerxise. More uncomfortable not bad enough to need painkillers. I will keep a close eye on it. Thanks again for your help.
Gill, do you know what type of OC you have? Mine is a rarely mucinous variety which is know not to respond to chemo well. My surgery was called the sugar baker technique, it normally used for people who have a cancer called pseudomyxoma peritonei which starts in the appendix and spread mucus stuff around the abdominal cavity ( this is what my original Tumor did). I don't know of others with OC who have this procedure so I know which others are suitable.. You do have to be in reasonable health however, it's a very op and you need to be in intensive care after. I was in theatre for 17 hours! oh and they didn't want to operate while I had ascities- I had my second chemo dry in up thankfully.
Hope they get top of your ascities as that is horrid to have.
Gill, I've only seen this post. I am puzzled. I have heard of women in your position who were deemed platinum resistant because of short/non remission and who were given cisplatin and etoposide (the Rotterdam regime). It worked well for one, giving her a year's remission. The other lady it did not work for at all and she went on to an experimental treatment. I would suggest you get in touch with Ruth at Ovacome and get her thoughts. I have heard that Prof Leidermann in an expert in cases like yours. She may know differently. You should be able to get a second opinion very quickly - within a week or two. I'm thinking that you are refractory/platinum resistant and thinking of the Rotterdam regime because it is apparently the most effective way to deal with that. I hope this helps. Cx
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