I had been on the LOGS trial for recurrent low grade serous cancer for the past 12 months.
It has been keeping the cancer mostly stable but not without some complications. The medication had been having an adverse effect on my heart output. I had been through two dose reductions but sadly my heart function dropped again.
I have been taken off the trial drug and we have to allow 28 days for the drug to flush from my system. My oncologist was on leave when they decided to stop the drug so I don’t know where I go from here yet.
If I did not have to this rare pleural effusion on my right called a chylothorax. I think he would recommend a treatment break. I have had two drains in the last month and my breathing is becoming more uncomfortable. I due to see my oncologist next Wednesday for an end of trial appointment. Then straight afterwards I am off to the chest clinic. I hope I they come up with something to help I am tired of not being able to breathe properly
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ScardyCat40
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At least the trial kept things mostly stable, it’s a shame it affected your heart. Hoping you hear soon about another trial or treatment for you. Hope the breathing gets sorted out soon.
Hope they come up with treatment that will ease your breathing problems soon.
Hugs Ellsey xx
You have done so so well - I have watched your progress as I wasn’t eligible for the Logs trial at the Marsden they put me on the ‘alternative’ tamoxifen, which has held since June last year. But like all of us, I go from 3 month to 3 month. For me it includes managing, output (blockages) from my ileostomy, without which (5 years) I wouldn’t be here.
Challenges all the way, but always going forward - hopefully your next step will bring some relief from your current symptoms. A fine balancing act, treating the Cancer and side effects of treatment. So take time for yourself, a step at a time. Huge hugs go to you, you are quite amazing 😉😘
Hi suzie, just reading your reply, it is all a balancing act and one day at a time is needed. Hope you don't mind but I have a question for you, I have just come out of hospital with a bowel blockage, I have a colostomy and have just had my first second line calyx and a scan showed up a tumour in the bowel which I had guessed was there. How do you manage the blockage, I've been given a low fibre diet sheet but if honest I'm terrified to eat but need to build up for next Caelyx and so far today, got home last night, have had yogurt and fortisip drink.
Hi Fiona - ? for you have you just had the colostomy. I have had my ileostomy for 5 years now (my little ‘Pet’). I have low grade OC been diagnosed with primary peritoneal as I had a total hysterectomy when I was 38. I was diagnosed 2010 so been on my journey 8 years. Was on Letrozole for 2 years then had the blockage manage 6 months before they decided ileostomy. Prior to surgery I was on a low fibre diet. Post op I tried numerous foods, keeping a food diary plus output chart. This helped as I very soon learnt what my very short intestine could tolerate. Last year they tried again to remove tumour but intestine now stuck. Saw an amazing Colorectal Consultant (2nd opinion private) who talked through diet. Since that time I have been balancing very low fibre food and keep any watery output prevention to as minimal as possible. With an ileostomy very easy to dehydrate.
So in answer to your reply, yes you are not alone, yes it is scary stuff. Keep a food diary for awhile, eat little and often. Find what your gut and output (yours will be very different from mine ie colostomy vs ileostomy) can manage. Do you go to a Stoma Group - ours is a hoot - we have a good cross between Ilies and colons as well as internal pouches.
So my diet now consists of ‘well cooked’ food only veggies that I can mash. Avoiding skins of any kind, nuts, currants, raisins etc etc. But it’s not an issue it’s as we’ve said a balancing act.
If you would like to chat (I am in Poole) my landline is 01202 691 091. I know both my Stoma & Oncologist Nurses are very supportive, particularly when I fall into a ‘black hole’ which I did a couple of weeks ago. So remember you aren’t alone. Just give it time, and a huge dollop of patience.
Take care - well done Fiona keep asking the questions. Love n hugs to you 😉
Sorry the trial has had to stop and hope they can find an alternative which does not have the added complications. Let us know next week what they have planned for you. X
Sorry to hear abt the current issues with your trial drug and breathing. Hope they can come up with good package for you asap. Let us know what they are recommending.
I was just about to reply to one of your comments on my last post to ask how you were when I searched and found this. I really do sympathise re the compromised breathing... just wishing you well really and hoping they come up with a plan that will work for you.
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