Abunai said:

Potential Lab Rat

I have the opportunity to be a part of a clinical trial of Calithera (CB-839) combined with Opdivo.

Are you still handling the CB-839 well?

Thanks!

Abunai best of luck getting into the (CB-839) with Opdivo trial. It is a VERY promising clinical trial. 

I have been in the trial since Aug 8th 2016 the results so far have been mainly stable disease. CB-839 is not designed to reduce your tumor burden but to hold everything in place by starving the tumors of a key nutrient they need to grow and multiply. I have had few side effect and continue to work full time which is why I hardly post now. You see my boss retired in November and guess who they gave her responsibilities to – You guessed it – Me! Stage 4 cancer and I get a promotion would you believe? But I digress. The side effects I have had are minor but they are as follows:

 Bloody Nose

 Brittle nails 

Fatigue – I take naps now 

Sensitivity to cold – We had a mainly mild winter here in the northeast but on some of the cold days I have this overwhelming compulsion to crawl into bed with all the covers and not come out.

I still work, exercise on a regular bases and enjoy life. However, I should mention my last scan in January showed a new 5 mm nodule in my lower left lung and a lesion by my ninth rib that grew slightly. My scans were ruled as stable next scans are in March and I am obviously concerned. You are only as good as your last scan. - BDS       

See link – I am one of the 15 lab rats mentioned in the story     

http://www.renalandurologynews.com/kidney-cancer/cb-839-drug-promising-for-clear-cell-papillary-renal-cell-cancer/article/575998/

First some background information - Due to insurance reasons and convenience I get scan at hospital “A” were I will be given CD’S of my scans which will be re-read at HUP as part of the CB-839 clinical trial.   

On Jan 23th - Only the results of my CAT scan and not the results of my MRI of the abdomen and pelvis were posted on the hospital “A” web portal. That morning I read the report and my jaw hit the floor. “Neoplasm is not suspected. There are no pulmonary nodules in the lungs. The lungs are otherwise clear”. In short, there was no detectable cancer in my lungs. This would be the first time since being diagnosed that my lungs have been clear of cancer. I was jumping for joy, could I possible be NED? I thought to myself, it sometimes just happens that way. I skip going to work and head out the door like a bat out of hell to Hospital “A” to pick up the printed paper report of my MRI. Thoughts racing though my head - could this nightmare finally be over? Could CB-839 really have done the trick? I raced to radiology file room to up my MRI report. I sit down in the waiting room to slowly read it. Well, I wasn’t NED the two tumors in my abdomen that I like to refer to Sid Vicious and Johnny Rotten were stable from prior scan. Ok not too bad, I will take stable. Then I read the last line of the report. “There is a metastatic lesion on the right posterior chest wall with enhancement eroding the right posterior ninth rib. No other bone lesions are seen”   In short progression.

Well to make a long story short, HUP reviewed the scans and found that this “lesion” and due to its location was just not reported and has been there in prior studies. So I remained in the clinical trial.

March 15 Scans. Friday March 17^th . Cat scan now reveals “several new scattered pulmonary nodules measuring up to 4mm which are new from prior studies. They could represent developing metastatic disease or infection/ inflammation as a second consideration”.  MRI of abdomen and pelvis report that Sid Vicious and Johnny Rotten are stable But…. There is new enhancing liver lesion in the right posterior segment of the dome which measures 2 X 1.6 cm. Progression of disease. OK, this is serious. I cut out of work, texted my nurse at HUP and made arrangements to personally deliver the CD’s of my scans that day for HUP for review. We met in the 4^th floor waiting room, I told her that “It looks like I am going to be an unemployed Lab rat”; she said we will figure something out by our next meeting on Thursday.

Meeting at HUP on March 23^rd. As expected with the discovery of a new liver metastases and possible new metastases in my lungs have caused my removal from the clinical trial of investigational Drug CB-839 W/Everolimus. On the bright side CB-839 did give me eight months of stability with minimal side effect. On the downside, CB-839 did not provide me with the kind of long term stability I was hoping for. I am currently in a three week wash out period when they will determine my next treatment. During our meeting and due to the fact that my cancer has now spread to my liver I even mention the possibility that maybe I should retire and enjoy whatever time I may left.  My doctor STRONGLY advise against retirement! This was due to my overall health and low tumor burden.

So for now it’s the closing of one chapter and the beginning of another. Unfortunately, I do not believe I will be eligible for any more really promising clinical trials due to my prior Keytruda PD-1 experience. See what the future holds - BDS