Hi I'm Alison

I was diagnosed with stage IIIc ovca at age 51 in December 2009. After my initial surgery & chemo, my first recurrence was about 12 months later. As you can imagine, I have had multiple treatments over the years - more chemo, 2 clinical trial drugs, radiation, hormone blocker pills, more surgery ... The full story (and a better summary) are all on my blog here https://alisphere.wordpress.com/contents/ovca-journal/ and I welcome readers, always hoping there could be something in my experience that might help others who have the disease. I feel very fortunate to be enjoying a healthy life most of the time.

Comments

  • Hi Alison,  Thanks for posting a link to your blog.  I found it very interesting, it is great that even though you have had a number of recurrences you do enjoy a healthy life most of the time and are 8 years from initial diagnosis.  My journey is similar.  I had 18 months on  a trial drug, olaparib, which must work in a similar way to the rucabrib that you were on.  I am a BRCA2 carrier and I was wondering how you can be a BRCA1 carrier, yet they are not linking your diagnosis with this faulty gene.  Have other members of your family been genetic tested?  In my family my brother and sister both have the faulty gene and my sister has undertaken preventive surgery.  I will keep checking your blog to see how you are going.  Take care Helen

  • Hi Helen, Thanks for reading my blog. Good to hear from you & great to connect with someone with such a similar pathway (although I'm sorry, it's not good news for either of us!) I gather the test for somatic vs germline BRCA mutation is pretty straightforward. The BRCA1 mutation was there in my tumour tissue (biopsy) but absent from my blood sample. If I had inherited this mutation it would be everywhere in my system (germline) and observable in my blood. It is interesting to hear that some of the latest ovca research is indicating multiple pathways even in one patient. In other words, of my multiple lymph node tumours, there may be more than one mutation causing the problem. This is sometimes the explanation for the failure of targetted therapies such as rucaparib & olaparib to completely control the cancer. Perhaps the one tumour that grew in my case was not caused by a PARP problem but some other mutation involved. Scary, I know!


     

  • Hi Alison, Thanks for filling me in about the BRCA1 mutation.  It is all very interesting and we are all so different.  I didn't know that you can have the mutation in your tumour, but it does not show up in your blood test.  They are doing heaps of research into these mutation issues and not just in ovarian cancer, but in other cancers as well.  We need to hang in there until they come up with a drug that will help all of us.  Take care.  I have just reached the half way mark of my present chemo regime and am not finding it too taxing.  I hope you are going ok with your treatments at the moment.  Helen

  • Yes I know. I felt like I'd won a lottery when I heard my result of somatic BRCA! I get the benefit of the best researched mutation pathway without any genetic implications for my loved ones.

    Thanks for your kind wishes. Wishing you all the best for the rest of your chemo and for a speedy recovery.

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