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UPDATE on 6 month scans


Lin wilki

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Results of PET scan and CT scan at 6 month mark of clinical  trial ---  progression.  Not good news.   The trial did not work.  The radiation did its job and killed all the nodules in left lung, stabilized the mass in right lung (which has now shrunk a little).  But lymph nodes enlarged at 3 month scan - was thought to be inflammation - but, it WAS progression.  Many new small nodules in left lung. So, time for the old tried and true CHEMO  Carboplatin and Alimta. Exactly what I was hoping I didn't have to do!  Seems I have a rare HER2 Amplified mutation that  was not helped by immunotherapy.  Started first treatment of chemo today, see how I feel.   New direction - hope it helps. My doctor and clinical l nurse were very supportive and assured me there are other tools in the toolbox,. just not immunotherapy.  Time will tell.

I will continue with my doctor at main UofC hospital for at least another treatment - then another scan.  If this treatment is effective and tolerated, I am transferring to the smaller facility near my home for convenience.  I had to be at the main Chicago hospital for the trial, and now I can be treated close to home. Same hospital, just a smaller offshoot facility.  I will be sad to leave my team - but better to not have to travel an hour away every other week.   I hate change, and this is one I am certainly not looking forward to.  I guess I will mope for a couple of days, and then -- get on with it!!!

 

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I was crushed when onc told me no immunotherapy is going to work!  Later maybe a clinical for my mutation?  And no more radiation — too many new nodules !! All crappy news.  For now see if on right track with chemo   My faith and hope has been shaken.    When I see onc next week I hope to have a better outlook

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Of course you are shaken up!  I’m so sorry about the clinical trial.  It is such disappointing news especially after a monument effort.  You must be exhausted on all fronts. If there’s one thing we do know is the Carbo/Alimta combo is a good clean up for those of us with mutations.  The HER-2 is indeed rare but did your team talk about a potential targeted therapy at some point with Poziotinib?  MD Anderson just posted the Phase II clinical trial results about a month ago.
I think we all understand how crappy this all is, the hardest thing to do is crawl out of the dark hole and fight back.  Time limited moping sounds like a good plan then it’s time to lock load. I know you will find a battle rattle. A big hug to you from KC. 
Michelle

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The upside of this is I can get treatment near my home - that's where I had my consult with my doc.  She put me in clinical trial, but that meant I had to travel to the main hospital, about an hour away..The downside - well on the many downsides - is that I lose my team - my doc is no longer at the smaller facility!  She has a good idea which doc is a good fit for me there.  I feel like my team is not ready to let me go - so I check in with them next week and my next treatment will be there also.  Then a scan to make sure we are on the right track, and I transfer. Yes my clinical nurse said we're not done - herceptin infusion is down the road.  Also, they will always be on the lookout for a promising trial.

It's just a lot to swallow right now, but it will be OK -  I am at a great hospital and they are here for me.  \

Thanks for the encouragement.  Enjoy your holidays.

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I have a similar situation here in that I’m not treated at the main campus either, there’s an outpost 9 minutes away from my house.  There’s a lot of advantages going to a smaller location, primo lab slots, less waiting, friendly staff, more concierge type service, less chaos. 

One of our support group members received herceptin which worked well, she’s a 13 year Stage IV survivor.  

I know you’ll miss your team however there’s a good chance you might love your new one, think about what you can put in the fun bucket because you’re not sitting is traffic or waiting rooms! 
 

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Lin Wilki,

I am beyond sorry that your treatment did not pan out as you had expected. I send my prayers and my posse of angels to you so you can get the RIGHT tools from the RIGHT toolbox to get the job done right, once and for all.

Take Care, Resurrect your faith and carry on, DFK

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  • 2 weeks later...

Pet scan results posted.  Very disturbing to me --  I probably shouldn`t read them!  A lot of progression in left lung and lymph nodes.  That's why they put me on chemo cocktail now.

I did some research on my suggested "possible" target drug for my HER 2 amplified gene.  It's NOT Herceptin -  it's ado-trastuzumab (Kadcyla).   I only saw PA at my chemo tox review, so I don't know if that;s the option when chemo fails, but it seems to be.  So, going to just stay the course and start my chemo, and God willing, it will get me some shrinkage and we'll see what's next.   Uncharted territory for sure.  The low percentage of people with this particular cancer driver is the reason it hasn't been researched a lot.  They are now seeing it in more lung cancers, so hopefully there will be a clinical trial at some point.

So I will just keep on keeping on --  new grandchild (#11) on the way within days.  Another reason to keep pushing.

 

Happy Holidays everyone.

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Reading test results is like getting kicked in the gut twice, it takes away the slim denial we live in and makes the situation real.  I hope you can put those words out of your mind and think about the chemo cocktail as a carpet bomb to clean out those misbehaving cells.  
With another grand baby on the way, it’s worth the fight.  Hang on tight and we’ll be with you every step of the way in these uncharted waters.  
 

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You got a Christmas Grandbaby on the way and obviously a huge family full of love and blessings. Relish in their support and love and go forward with your chemo cocktail.....Hang tight, and as you said, Keep Pushing as you enter the joy of the Holidays with your family.

You brought back memories as last Christmas I was newly diagnosed, on your chemo cocktail with radiation and temporarily living in a different city for treatments. I was too shell shocked to know the complete gravity of what was transpiring but there was something about the Spirit of Christmas that kept me positive, that kept me grateful and allowed me to finish my treatments in what could have been perceived as the worst Christmas ever. It wasn't....I felt embraced with hope. And here I am a year later still plugging along in treatments, still pushing and still feeling grateful.....You can do this, You are doing this.

Take Care, DFK

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