Good news and bad with my metastatic breast cancer

Hello again.  Maybe I should add "avoid consultations with the oncologist on Friday 13th" to remind me about today but I'm not particularly superstitious which is just as well as I was born on the 13th.  I had a CT scan in early December and the only thing that troubled the consultant was that one lymph node was suspicious in that it seemed slightly larger.  But it may simply be how the CT scan was done, the angle of the scan.  So as a precaution, I had another scan as soon as possible which was last Friday.  Back today, yes that lymph node is actually fine, but the scan now shows small tumours in the liver.  So now we know the paclitaxel chemo I have been receiving has kept most of the cancer at bay but it hasn't been able to keep the lymph nodes in the liver area from getting bigger or prevented it from spreading in this area.  I was advised to go on to GEM/Carbo now, in preference to choosing eribulin.  This latter drug will be shortly withdrawn by NHS so it is the last opportunity to go for it without private funding.  Obviously I want to give myself the best chance I can, so after discussing pro's and con's I've gone for the GEM/Carbo option.  I just hope I've made the best decision, but won't really know till the next scan in 9 weeks time.  It's all very scary but I'm keeping positive thoughts and everything crossed.  Also I just cannot believe how aggressive this cancer is.

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    Hi Boatgirl .... sorry to hear about the good news and bad - nothing is ever straight forward is it?  As the liver is the the only spread, i wonder if you have considered surgery or ablations/nanoknife to the liver tumours - this has certainly lengthened my prognosis and may be worth finding out about x

  • Max, thanks for replying especially in your situation. I think all options need to be looked at. I asked the oncologist about surgery and was told no. I actually have been looking at nano knife and I have to say the only reason I know about it is because I remembered some of your posts mentioning it. It's good to hear that it has worked for you. I have signed up for the GemCarbo as its a straightforward swap this coming weds at the chemo suite with the drug I've been on. But I'm also going to get ready for the next oncologist appointment including the possibility of referral elsewhere even though the travel will be a challenge.

  • Hi gill. I sent a msg to the moderators asking them to send u my email address. I got an email from the team sending me a link to something and when I went on it it just said I was declined access to the page. Maybe if they see this they can look into it. Hopefully Dave will help - sounds like u have found him x

  • Hi Max, hopefully Dave will recognise my cat Smudge on fab.  Today has been another rollercoaster.  Regular appointments, one for bloods and Xgeva, and the other with the usual oncologist.  The GEM/Carbo has stuffed my bone marrow / haemoglobin levels so I will be looking forward to a day of blood transfusion next week.  In addition to the chemo of course.  It is clear I am not going to be able to tolerate GEM/Carbo for long.

     I have also now made a formal request for a referral to the London oncologist as recommended by the clinical radiographer.  I have also sought explanations for the scan reports which failed to report the tumours sooner.  Hey ho, might as well go for broke. :-)

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    Gosh you are really going through it right now gill. Please check with your radiologist and oncologist that it's ok to have your chemotherapy so soon after the liver procedures. Mine was postponed a few weeks, then a reduced dose to allow healing before putting more strain on the liver from the drugs. Also stopped my chemo a few wks prior to nanoknife so check that too honey.  You are right that it's another rollercoaster ride but stay calm and all will be fine. X

  • Hi Max

     

    Thanks for the heads up.   I have emailed the London consultant so hopefully everyone on the medical side will be lined up on what should be done regarding chemo before we get too far into next week.

    I have also sent on the latest blood results to him.  We had an issue which delayed the op this week, and that was because the bloods weren’t right.  It turned out that the sample from the portacath was contaminated with the fluid used to keep the line clear.  It took a while to sus out, and to be certain they took further samples venously so that they could pin down the problem.

    In theory with my latest counts I am supposed to be seeing signs of breathlessness and excessive tiredness but I’m not.  So I will ask for the next sample to be taken venously just in case this is the same issue, and we can see what happens with that.

    Hope your chemo is going ok.  Have some big hugs from me!  Gill

  • Mods have replied - no can do - referred me to a link where it was explained previously why they have had to rule out being the middleman. Hey ho. 

  • Gill,

    For some reason Facebook didn't allow me to see your request until I viewed your profile.

    Sorted now

    Dave

    X

     

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