I went to the chest clinic Monday. We have retested the fluid on the right and it’s no longer Chyle so embolisation is now off the table so at least that decision has been made.
I met with my oncology team on Thursday. My oncologist is off sick so I saw the registrar we talked about weekly taxol again. I wasn’t ready to make a decision so we have decided to wait until after my next CT scan on 5 July as I know the team would prefer to wait for signs of progression on my scan.
My last couple of scans have been stable and so has my CA125 but just rang up to get latest reading and it’s gone from 106 to 312. Feeling a bit anxious
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ScardyCat40
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At least no need to worry about the embolisation surgery for now. Phew.
Stable scans are good, despite rising ca125. Is there any trial available for you, as alternative to chemo? Maybe MEK inhibitors etc...
What's your gut feel? Would you rather just keep an eye on the ca125 for now, as long as you have no symptoms and the scans remain stable... or would you prefer to start some treatment now in any case, because of the rise?
I was on a MEK inhibitor Trial LOGS we stopped it due to side effects so I will be excluded from any other MEK trials.
I am breathless as I have pleural effusions on both sides of my chest and I feel bloated pretty much all of the time. My next scan is the 5 July so see what that shows.
Hi, I'm waiting for my next scan my 125 is now 500 so understand as we all do how hard it is waiting for scan results and further treatment plains, so good luck with the scan results and your treatment plain take care Lorraine xx
To add to the madness I am also thinking about moving. I currently live in a second floor flat with no lift and I have been offered a gtound floor flat
If it'll make your life easier, move to the ground floor flat. I went through a bout of blood clots in my legs and chest and the thought of stairs makes me cringe. Good luck with your scan.
I have been pessimistic a bit lately and sometimes I think well if I haven’t got much time left is there any point moving. Don’t know where it’s coming from I certainly haven’t been told I don’t have long left. I have been feeling this way since Sharon passed away.
I'm sorry you're going through that thinking, ScardyCat, and I'm especially sorry you've been feeling this way since Sharon died.
I'm going to go out on a limb here and say I know exactly what you're writing about. It's the "should I bother to buy another winter coat", or "should I replace my glasses when I'm not sure about my treatment".
I go down that rabbit hole. But it's such negative thinking, and I think we need to turn it around. For example, if I wasn't in treatment, yes, of course! I'd replace those glasses. Last winter I thought what the heck and bought a new winter coat. I was toasty warm all winter.
If you weren't going through cancer, would you move? Not having to deal with stairs as we age is a good thing
Take good care of yourself, and I think that now, more than any other time, we need to be kind to ourselves.
Hi Lorraine - I am sorry you are having a miserable time, but at least you are free until 5th July. I bet you are not keen on more chemo, even if Taxol is tolerable. Surely the bloating can be got under control, though I don't know how. I had a urinary stent fitter due to an enlarged ureter and I have to say I feel less bloated. I hope you will get answers and the support you need - Nicola
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Dilemma
Laura Update 2 - The Fight
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