kevinj

Dear All,

I though I should update you on Mum’s journey with CC.

As a brief recap, Mum was diagnosed with CC following hip replacement surgery in March 2014. A biopsy of the hip bone was taken which showed she had advanced CC (IV) with secondaries/specs appearing at that time in about 3 other locations as well as a 7cm tumour in the right lobe of the liver and some other smaller satellite lesions in the liver.

We were told back in March 2014 that Mum’s age (72) and the staging/presence of secondaries meant that a surgical option was not basically available.

Mum had her hip replacement surgery and then rather valiantly launched into a GEM/CIS chemo programme.

We were basically told back in March 2014 that Mum might only last for a few months. She is still here…and still (rather miraculously) continues to valiantly fight back!!

Mum’s liver function throughout from diagnosis last year to the present day has been fine.

Mum’s programme of treatment for CC has been 8 cycles of GEM/Cis which she was able to tolerate very well between March 2014 and September 2014 The GEM/CIS did a mop up of the secondaries and kept the tumour in the liver stable for over 7 months. Mum did very well on GEM/CIS chemo.

We then became a little bolder and decided to try SIRT to get some shrinkage of the tumour in the liver.

Mum had to come off chemo to have the SIRT treatment. She had two SIRT treatments. One in November 2014 and in early February 2015. We have just received latest PET /CT scan results. It does not look as though SIRT has worked for Mum…which is obviously very disappointing.

The only good thing perhaps for Mum in having SIRT is that it produced no bad side effects….for both separate treatments…other than her feeling tired.

The latest scans are showing progression in the liver and elsewhere in the bones. We had to gamble (to come off the chemo) to have the SIRT. Mum has been off chemo between October 14 to March 26th, 2015. Coming off chemo was the gamble to have SIRT…and regrettably it has not for Mum paid off.

Mum went back onto GemCIS this week. Let’s pray it will kick back in…and give some more time.

Perhaps the moral here might be (and might not be as well) that the oncologists might sometimes be boring and conventional in their treatment proposals and might, for instance, only push a chemo solution (as was the case here). I basically pushed for the SIRT treatment here. Mum’s oncologist was not convinced SIRT would be helpful…and he was right.

We also now have the Foundation One test result back which I will share in a separate posting.

Best wishes

Kevin

Dear All,

FOUNDATION ONE TESTING

Following a wild run around this week in making contact with Mum’s histopathologists/hospital/oncologist, I am pleased to confirm that it looks as though we have a sample that will be good for Foundation One testing.

I think the Fedex guy collecting the packet/sample from me this morning in London thought I was some looney….I can’t remember having shipped something with so much value to me…and it seemed quite odd that it was a bit human tissue belonging to my Mum with tumour present!!

Anyway…the sample is now on its way across the Big Pond ..to Foundation Medicine in Cambridge MA.

So my question now is what will I do with the Foundation One test results when they came through PLEASE ?

What results should I be looking for from this Foundation One test? Are some results better than others? What happens if approved medication/trials are recommended. What does one do next?

Please remember that this is London, UK . Oncologists may not (will not) be used to looking at the results from a Foundation One test. How can I help them? who should I consult? Is someone who specialisese in tumour genotyping, for example, needed to interpret the Foundation One test? perhaps rather than an oncologist?

Any further guidance from the Community on how I should prepare now for getting the results (so that i understand them) in ten days time would be very gratefully received indeed.

Thank you

Best wishes

Kevin

Dear Catherine and Marion,

Those links are REALLY helpful Thank you

I will let you know how we get on in making progress with this.

Foundation One have already informed me that they would prefer a more up to date biopsy than some tissue from last February 2014’s biopsy…but they will accept the old sample…if we want to do it that way. I will chat this through with Mum’s onc.

Thanks again

Best wishes

Kevin

Wow Catherine-so pleased to hear that for your Mum.

Your message contains very helpful information.

You hit the point on the head with perhaps your reference to an “adherence to the “Gem/CIS” protocol”

I am happy for GEM/CIS to continue to be part of Mum’s treatment programme…which seems to be keeping things stable in the liver (perhaps it is working much better with the mets)…and which she seems able to easily tolerate.

What I am keen not to miss out on whilst we go down the Gem/Cis path is considering other more novel treatment options/trials.

Perhaps a strategy is to stay with GEM/CIS whilst it seems to be working/doing a decent job…but we use this time whilst Mum is pretty fine/well (her liver function/blood test has/have been normal throughout this…even following SIRT) to look for treatment options that we might consider later…that is why the genomic testing etc is currently on my mind.

Anyway best wishes to you and your Mom

Kevin

Thanks for the additional welcomes and the guidance on Foundation One Duke. Much appreciated:-) It is a great relief and support to be a part of this Community.

Not wanting to pose a rather depressing question/thought near the outset of my joining (as most of the time I am an optimistic person…honestly) , but my impression from what I have heard from the onc’s here in the UK in relation to Mum is that she is Stage iV and that rather limits what they are able and willing to do in relation to treatment.

Resection is out of the question… apparently because there are bone mets in other locations (but currently being controlled by chemo)…and perhaps because of Mum’s age. We had to struggle to get the SIRT…but I think that was because of the potential complications that can accompany a SIRT delivery. Perhaps a view that Mum should now just be palliated is the reason why we have not yet been offered genomic testing/other stuff?

During this process I have tried to ask what I would want for myself if I was in Mum’s situation. Perhaps it is good to be pushy…within reason? Ruffle a few feathers?? In the pursuit of ensuring one does not miss out?? No good asking for something when it is too late??

Anyway, this website and the information on it, at least permits me to be informed and I will hopefully take the right questions to the onc’s/others for consideration.

Hope you all have a lovely weekend

Best wishes

Kevin