Good morning ladies looking for some good tips and advice please
I’ve just come out of the Christie after nearly two weeks I was admitted for sickness which was caused by blocked bile ducts which came whilst I was on the Rotterdam Regime my 5th line in four years!
I’ve had the works Carbo taxol debunking op cisplatin gem cisplatin caelyx avastin twice olaparib cisplatin and taxol and now been taken off the last cycle of the Rotterdam
They managed to put one stent in to clear one bile duct and I’m on tablets to help try and clear the other duct but have increasing liver mets.
I have an appointment this week to discuss trying to get the liver stable and was wondering if any of you lovely lot have been in a similar situation or have any good advise or good questions for me to ask when I go?
Thank you in advance and I hope you all have a lovely mother’s day weekend xxxx
I am in my second year of treatment, and have not been through all you have.
Like you, I am BRCA1 positive, as is heartbreakingly, my only daughter, but I have been counting on the BRCA1 mutation as making me more responsive to treatment.
Your story terrifies me.
However, my team has been much more proactive in my treatment than yours has been.
I let everyone know that I would not tolerate the “watch and wait” plan that so many advocate, just because it gives time for the cancer to get hold of other organs or lymph nodes.
So, I am just finishing Carbo/Caelyx for first recurrence and so far it has done the job and I am so lucky not to be allergic to the Carbo.
I will now go onto Niraparib, but I see you have been on Olaparib and it did not stop your cancer from returning.
Can you tell me about that experience?
Meanwhile, my suggestion for you, is to try weekly Taxol.
Many ladies reported good results with this regimen. The Taxol is a slightly different dosage and Type that works without all the terrible side effects that the stronger dosage causes - and that you do not necessarily lose your hair.
I hope your Oncologist can figure something out for you.
There are new trials all the time, and there is still the Care Oncology Clinic that might be worth a try.
I don’t know much about the ins & outs of liver mets but...I know it depends where it is on the liver (on/in which lobe) & if it is localised or not. Sometimes surgery may be considered if it is, for example, one or two nodules/areas, especially on the outside. A lot of us had spread to the liver on initial diagnosis & all removed at surgery.
Wishing you all the best. You’ve had a lot of potent treatment; build yourself up with good food, 🍇🍓🥒🥑 perhaps one glass of wine 🙂, sunshine ☀️ & rest...before the next battle commences.
I am so sorry you have been through this amount of treatment - and I so hope they come up with a plan for you. It seems to me they need to pick you up mens you with some rest and nurturing food and try another tack : the Prof there’s is amazing I so wish you a good turn of events ...🙏💕
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