Wednesday, May 31, 2017

Next steps

Since my last  post, I have been accepted onto a clinical trial at the Alfred's actually with an organisation co-located on the Alfred site.  Basically I was informed about three different trials, however the only one I was really suitable for is this inhibitor study as the tumours I have aren't considered to be solid (they are fluid filled).  Anyway, I was happy to start this trial, as I really had no other treatment options!  The trial started today and part of it relates to the uptake of the tablet with  or without food.  Hence, today I had a high fat breakfast which had to include eggs fried in butter, toast with butter and either bacon or sausage.  I also chose this option because it included an apple.  Thankfully I was also allowed milo in my milk...because I really don't like plain milk.  I will be visiting the clinic for three days in a row, then two days off, then another three days in a row...though next week I have the tablets without food.  After the initial week, I then have a few appointments a week apart, and then eventually, three weeks apart and the drug twice daily.  I will be interested to see    how it all goes.  I had hoped that today they might tell me that I can't go on the trial because the tumours had not reappeared on the CT scan and that my cancer markers were down to nothing!  I am very thankful though that my CA125 had reduced by over a third since my last oncology appointment.  So, that is it for me I am spending the day in bed and having my obs and blood taken every hour, until around 6.00pm.  Then I'm back here for the next two days for further bloods and observations.  Thank you for your continued interest in my journey, for your prayers....I will continue to write updates here as I am finding it very therapeutic to write about my journey.  Cheers

Tuesday, May 16, 2017

Post Chemo update

Hi friends and readers...sorry it has taken me a while to write an update after my final chemotherapy and stint in hospital.  After Easter, I had another blood test and appointment with my oncologist.  At this appointment I had hoped to hear the news that the chemotherapy had done its job and my CA125 levels had been reduced to their normal low numbers....disappointingly, this was not the case and they had actually gone up to well above their levels when I was first diagnosed...I was shocked to say the least!!!!  What next I thought?  The doctor said that sometimes this test is not always the most accurate, so I was sent off for CT and PET scans....and at the end of April I returned for the results.  These too were not what I had hoped and prayed for....they showed I had more tumours growing, and not just one, but quite a few.  I had already gone through in my head that I didn't really want radiotherapy or more surgery, however had also made a decision in my head that I would of course do whatever was suggested by the doctors!  Well, I needn't have been too concerned about either of these options as because I had more than one tumour, the radiation could do more damage to surrounding organs, and I likely have too much scar tissue/adhesions from my surgery last year, so surgery was also not an option.  Yikes!  What next then?  Go home to die I'm automatically thinking.  No, the doctor suggested referral to be considered for clinical trials....they were to make a referral to the Alfred for potential trials there.  Well, a few days later, I received a call from the Alfred inviting me to come in for a chat about the possibilities.  The short story is that there may be a potential option, however my tumours aren't "bad enough", and also the type of Ovarian Cancer I have is a lot rarer, and also, I have come to discover, much more aggressive and often resistant to chemotherapy...the upshot of all of this is that I am needing to rely more and more on God and not so much on my own strength, the skills of the surgeons and the effectiveness of chemotherapy.  My mind goes from thinking the worst case scenario to being positive.  So I have contacted the doctors at the Alfred today to ask to be considered for their trials...hopefully I will have a screening appointment next week and then be able to start shortly after.  I have to say though, that through all of this, I continue to feel God's amazing peace, which really is the peace which passes all understanding!  I don't know what the future holds, but I do know that whatever the outcome, I can only win!  If you have managed to read this far, I thank you for listening to my ramblings and ask that you might be praying for me and my continued journey.  Will continue to keep you posted.  Lisa xx