I am on third line weekly taxol. Had third dose on Monday. Disappointing had to start this as finished Caelyx in October with good results. CA125 down to 219 which is good for me. Now 2319. In the two years since diagnosis never felt ill and been able to carry on with life and all exercise classes. Since feeling ill in December now feel disease moved to another level. Had fluid drained in early January. Went in again on 22 January thinking it was more fluid but diagnosed blocked bowel. Been unable to eat and end up being sick. Really worried. Saw consultant yesterday who said to continue with taxol they are hoping it will shrink the tumours. Got a badly swollen left leg too. Been referred to dietitician. Stomach constantly on the whirl. Obviously losing weight and absolutely no energy. Spending half the night on the sofa as can't sleep. Anyone any suggestions for trying to eat anything? The only good news not lost hair yet! But I'm sure I've got this to look forward to! Been given Movicol and Dicotyl for bowel.
Feeling really down and feel disease has moved to another level
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Peppertombs
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I can see from your earlier post that this bowel stuff was already a problem months ago.
I wonder whether you did at that point seek another opinion, as was suggested?
I have had a bowel obstruction and ended up having a bowel resection. And, as a result, feel we could really do with more info about the range of causes for this. (one surgical team felt I should go on steroids and wait it out, the other, whose advice I am immensely grateful to, felt I had to have surgery.
As I understand it now, obstructions can be causes by a range of things: cancer in or on the bowel, stuff we've eaten etc etc...
It seems to be assumed that this is something we can always fix if we change our diet and/or take laxatives and that basically the problem is a blockage in the tubes - a plumbing problem.
I'd been having on off symptoms for over a year before I ended up in A&E with it. In my case it turned out that adhesions after surgery had sort of put a brake on the bowel doing what it should do, pulsing and pushing the contents out. So even if I'd stayed on the nil by mouth regime for weeks and it had worked, the underlying problem would still have been there. (this regime did work for another woman but it took 3 weeks). My surgeon advised if I felt it happening again to stop eating and drink small sips of water.
I hope you don't have to wait too long for a sign of life from the dietician, but I think you'll probably be advised to stick with a low residue diet, aka a white diet for the time being.
Quite why other staff can't suggest this themselves is beyond me.... I felt very alone managing this side of things.
There is stuff on the internet and this links seems pretty standard and helpful. Anything to help you get a bit of nutrition without making matters worse!
Thanks for reply. Yes last year it resolved quickly. This is so much worse with the sickness can hardly get up the stairs. Looked at link which is useful
Eat smaller amounts more often, you may be weak because you are not eating, I suggest, pasta or mash, maybe scrampled eggs, anything you like which is easy to digest, ice cream and also ask your doctor or health nurse to supply you with the fortified milk shakes etc.
When I had weekly Taxol, although my hair thinned, I didn't lose it all. I was told this was unusual but not unknown. I posted on here at the time, & had some replies from others who had the same experience. Di
Hi, Sorry to hear of all the problems you've been having. There seem to be so many different things we are all getting, most unknown to me so a surprise, shock. We're given all this side effect advice but no-one ever mentioned to me about possible blockage in the bowel.
I had this last November same as you, really sick and nil by mouth for a week. It unblocked itself but I was told it could return at any time. Mine was due to scar tissue. Since then I've been eating small amounts. To start with not much at all but I'm eating too much now if anything. Still in small quantities but too often.
I am worried it will come back and sometimes wish I'd had an operation but then I think I'd only wish I hadn't had an operation if I had one. Like you I wish they'd all get on the same page with this. How are we to know we're getting the right treatment and doing the right thing if everyone you speak to has a different view.
I hope you soon get your eating under control but in my case I think it'll be an on going thing for a long time. I was told not to eat fibre for at least two weeks so stuck to fish and vegetables and plenty of laxatives.
Hi. I wondered if it might be helpful to share my recent treatment for a blocked bowel as it sounds as tho you are not being treated for this?
My symptoms had been around for a couple of months: difficulty going to the loo, which was very painful and sometimes caused me to be sick. Then one afternoon not able to go to the loo at all and being constantly sick with severe abdominal pain. I went in to hospital via A&E which was a hideous experience in itself, until I was given I/V anti emetics and morphine which gave me some fairly immediate relief.
I know from the CT scan that my bowel blockage was caused by the high grade serous epithelial cancer and that surgery is not indicated due to the spread of disease throughout my peritoneum (this was confirmed by the surgical team in A&E).
This article is helpful to explain surgery v non surgery but is not cheerful in outlook.
My oncologist (whose knowledge and experience I totally trust) put me on sub cutaneous dexamethasone to reduce inflammation caused by the cancer in order to reduce/clear the blockage. I also had sub cutaneous anti emetics (cyclizine) pain relief (morphine) and buscopan to reduce the peristalsis. I was initially nil by mouth to totally rest the bowel, then sips of water. After a day l, once I had managed to pass wind, I could have clear fluids. It took another couple of days but I did finally manage to pass some more wind and go to the loo. The dietician recommended a low residue diet which I have since followed fairly religiously. (Mac27 posted a helpful link re low residue diets above)
I was discharged home on the same meds orally, but a reducing dose of dexamethasone which, now three weeks later l, I am still taking at 2mg. I am no longer in pain or being sick when going to the loo and managing to go regularly without laxatives.
I have now started weekly topotecan in the hope this might keep the cancer at bay. The risk of another blockage is high if this is not the case.
I suppose the point is firstly you need a scan to clarify the cause of the blockage in order to know whether surgery is indicated or not and then to ensure you get the right meds and follow the right diet. I would really encourage you to clarify whether you need to clear the blockage before having further chemo as I was advised chemo when the bowel is blocked is not safe.
This is a really helpful outline of the experience (who would have thought passing wind copiously would be a cause for celebration!).
What you outline was the approach favoured by my first surgical team. I am very sensitive to steroids and have ended up psychotic on them so was not keen on that.
I read up more generally on bowel obstructions and their treatment, not just in case of OC, before agreeing to go down the surgical route.
I've had two years of being fine since, in that department, and the tissue which was removed was clear of any malignancy, so basically the reality was better than what the CT scan was suggesting.
Oh, and I was also in the middle of chemo when this happened. Extraordinarily it ended up being delayed by only one week, a session to which I more or less crawled!
I do hope you're feeling a bit better and stronger now, Peppertombs. xxxx
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