jules1982
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Hi Gavin,
Our Oncologist and also Professor Lodge’s team in Leeds do not feel that the cancer has spread outside the liver. I believe that they have seen the tumour on the adrenal gland but believe it’s benign, due to the grading of the cells or something (unfortunately I wasn’t at the appointment when this was discussed, so I only have the info. second hand from my parents).
We then got a second opinion on mum’s case from the Aintree team in Liverpool, who believe that the tumour on the adrenal gland is cancerous. It’s a bit confusing as both Prof. Lodge and the Liverpool team have expertise in this cancer but currently disagree.
Our current plan is to continue with chemo and see what happens to the adrenal tumour. Our Oncologist feels that we will know if it’s cancerous from the results of my mum’s next scan (i.e, if it shrinks!).
Dealing with the uncertainty and differing opinions is a real challenge, so we’re just taking one tiny step at a time, and keeping going with my mum’s chemo. Her first post-chemo scan is in a few weeks and we wait with baited breath.
Jules
Thank you both! A third opinion it will be!! Just when you think that you’re getting a little more comfortable with the situation, the rug is pulled from beneath you and you’re all at sea again. We will soldier on! x
Hi Pat,
I just want to echo what Jason has said here. My mum is 62, otherwise very healthy, no real symptoms and she was diagnosed with ICC, stage IV, several months ago. She too was scared to start chemo as she didn’t like the thought of pumping ‘poison’ (as she calls it) into her body (she’s lived a life of veggies, fresh air and lots of exercise).
However, she started on Gem/Cis a while back, had a few teething problems with a bit of (manageable) pain in her liver area and temporarily low platelets, but now she feels great on chemo and she has more energy than she did beforehand. She’s living a completely normal life, apart from having to pop to the hospital once a week!
I’ve read quite a few similar stories on here and a lot of people do very well on chemo, with few or no symptoms.
Whatever you decide, I hope it goes well for you. Do keep us posted.
Best wishes, Jules.
Hi Kris,
I’m sending you loads and loads of good wishes and good luck from the UK. Have a great time tonight!
Jules
Hi Marion,
The supplement, which you take as a tea, twice daily, is called ‘Shi Quan Da Bu Wan’. It’s also know as ‘Jūzen-daiho-tō’, I think. I posted an article about it recently under the ‘complementary medicine’ section and Percy knew a lot about it and has taken it himself.
We didn’t really think it would do much, until we’ve seen the very rapid and noticable improvement in mum’s health.
Jules
Thanks guys. Very informative Percy. I read your case study – this disease really is a roller coaster! My mum is going to take the shi quan da bu tan, to see if it helps with chemo side effects.
Thanks Jason, it’s good to know that it can be resolved. We were just a bit worried as it’s happened so early on in treatment but hopefully this is just a minor setback.
Hey, thanks for the responses. It’s hard to know what to worry about and what is okay at the beginning. We’re so new to all of this! It’s good to hear that this is a regular thing and hopefully mum’s platelets will be back on track for the next round. Hugs, Jules.
