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Neverstopfighting

When Progression Isn't Progression

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Hey All,

I had my first scan since starting on my first line treatment of Tagrisso/Vizimpro clinical trial on May 10th.  The scans, which occurred on June 26, were for both a PET/CT and a CT with Contrast.  Usually, they do not do a PET after the initial scan b/c all kinds of things light up on the PET once you start treatment.  However, I had major hip pain on June 16th, and a CT of the hip showed potential bone progression throughout the sacrum and pelvis.  So they decided to do a PET.  

The PET lit up in about 13 different spots versus the original scan, back on 5/2.  It was very "hot" in a lot of places including a 22 SUV in my sacrum and a 17 SUV in my pelvis, all new.  After reading the report and seeing the scans, I was convinced this was progression.  However, when I met with my Onc, he said that maybe this isn't progression.  

Here are his reasons:

  1. My primary tumor shrank more than 50% after 48 days on the Tag/Viz cocktail.
  2. The T4, which lit up in the first scan, is sclerotic and now healing.
  3. There has been no progression anywhere else, including the liver or brain.  
  4. The CT did not show corollary data in the same spots.  
  5. It seems reasonable to think something else (para-neoplastic syndrome) may be showing up on the PET.  

I had a biopsy on that hot sacrum on Wednesday and I'm awaiting results (anxiously).  It could one of a few things:

  1. The biopsy still shows an EGFR mutation and my bodies response to Tag/Viz is heterogeneous (meaning it doesn't response the same way to treatment in different parts of the body).  
  2. A new mutation has popped up since starting treatment (MET Amp).  
  3. A new primary cancer has appeared, like bone cancer.
  4. It is not cancer but some other disease and we will manage it the best we can.  (Best result).

If it is 1, 2 or 3, I'm out of the trial and will start on a temporary course of the Carbo/Pem/Bev cocktail that is so popular with the mixologists in the Lower East Side.  If its lucky door number 4, I continue with the trial and address the new bone disease.  Hurray.  

I was wondering if anyone has had any experience with a potential false flag like my PET.  

Let me know if you have.  Otherwise, I wanted to share my journey so if others may find themselves in the same boat and they can could reach to me as a resource.  

I will keep all abreast of the latest news once I get that phone call.  

 

Fighting in NYC,

Joe

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Update:

 I had my appointment with the my clinical trial NP and my Onc yesterday. As I mentioned before, it was one of three results from my sacral biopsy: Not Cancer, Lung Cancer or a new Primary.

Well, it is not a new Primary. So that is really good news. Lightning striking twice would be a tough pill to swallow.

However, it is not Para-Neoplastic Syndrome as I had hoped. It is, again, lung cancer. It is either EGFR+, which they will know soon and I'm having a heterogeneous response to it, or another mutation. I am hoping for another mutation, preferably MET amplification they did not catch in the first genetic test. (I never got my IMPACT testing back from pathology, it had to be reordered). It is unlikely a mutation developed so quickly from 48 days of treatment. This is all speculation until I get the EGFR results next week, then the NGS IMPACT testing in 6-8 weeks on my sacral biopsy.

My next course in treatment is twofold. 1) I formally come off of the clinical trial. I've already stopped taking the Daco/Vizimpro but will formally come off. 2) I start a triple cocktail of Carbo/Pem/Bev while I continue to take tagrisso, 80 mg. I was told that this is becoming more and more common: TKI+Chemo. I will be undergoing two cycles, three weeks apart.

Obviously, the news can be better. I was hoping I would be on Tag/Viz for 24-30 months. (If not longer). But I was only on it for 6 weeks. I guess my timeline just moved up two years. Still, I have a lot of hope. I know some of you had Tagrisso not work at all, went on chemo and now are at or almost at NEDs. Tag worked for me in many areas, including my primary tumor (reduced 69%), some lymph nodes, smaller nodules and healed my T4. It is not working at all on other areas. I'm hoping chemo will address this until they get more NGS data.

The time for self-pity ended yesterday. Today, I start my new fight. I'm still working (although I am on facebook at 9:48am) and my cough has subsided a lot. They did give me 7 days of 60 mg of Prednisone for the lower lobe inflammation. They also gave me a broad spectrum antibiotic (I feel like I'm in House, MD: "Its not Lupus") Levofloxacin 500 mg tablets. So far, I've had no GI issues, so that's a blessing. More good news, I do not have any mets in my brain, adrenal glands, liver or other organ, just my spine and pelvis.

I also have a large group of IRL and online friends that love and support me so much. I also live literally a 12 minutes electric scooter ride from my hospital so I can scoot down for a scan or test, come home and work, then scoot back for treatment. Easy, breezy (beautiful, covergirl). I'm so blessed and/or lucky (I'm a strong believer of freedom of religion and freedom from religion).

All in all, it has been a rough week. But in the end, we have a next step. And if that doesn't work, there is another clinical trial starting in August that I will be qualified to participate.

Thanks for reading.   I just wanted to share with the same, strong people who are experiencing similar events in their life. The strongest people in the world.

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Hey Joe-

I’m very sorry you had a rough week, we’ve all been there. Of course you were hoping for a longer TKI ride, that’s what we all want.  It sounds like you’ve got your battle rattle back and are focused on the what’s next. Ten years ago there was no option for the mutants. Now we have options!  This is really like a puzzle, trying to piece it all together.  The waiting game is just the worst part. A big hug to you my friend.  Have faith in yourself and let us carry some of your worry.  Like the Beatles said- with a little help from your friends.  

Hang in there.  

Your Mutant Sister Michelle 

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I'm actually feeling really great.  It may be temporary but man, I had a great day.  Got a ton of work done.  Took a nice nap.  And I went to a Yankee game and picked up a Mariano Rivera Captain America Bobble head.  Amazing.  

Plus, the roids and antibiotics are giving me such a needed reprieve from coughing.  I was also getting fevers, daily for about 3 to 4 weeks. They last about 1 to 2 hours around the same time.  Sometimes twice a day.  Today was the first day I didn't have the body aches, lower back aches, then fever and lying, fetal position in bed, not able to move.  It was a daily 2 hour flu.  Temp got up to 101.6.  Nurse said it was ok.  Most likely tumor fevers (para neoplastic immune reaction to having a malignant tumor in my body). 

I also had some 5/6 pain level lower back pain.  Picked up an Rx level Aleve and voila, pain gone.  So much to be thankful for.  So much to be grateful.  And most important, "All you need is love."  

Thank you all for such amazing support.  

Joe

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