The Continuing Adventures of a Lab Rat.

BDS
BDS Member Posts: 172
edited October 2016 in Kidney Cancer #1

 Clinical Trial - Calithera’s glutaminase inhibitor, CB-839 in combination with Everolimus (Afinitor) at Penn Medicine in Philadelphia.

 

I was previously enrolled in a clinical trial with Keytruda (Pembrolizumab) and Incyte’s INCB24360 for the past year and a half. Unfortunately, in June I started to show progression and it was time to move on to my next treatment option, which for me was Calithera’s glutaminase inhibitor CB-839.

 

Yesterday, I met with my oncologist to review the first scans under this new clinical trial. Result …. (Drum roll please …… stable disease with slight decrease in some lymph nodes and others showing central necrosis due to treatment. No new tumors Yea!

 

So, with that, I am still in the trial and I will take stable disease. It’s about the best that I could realistically have hope for given my situation. I now view my life as how can I best live with cancer; always wondering how far medical science can kick this can down the road.

 

As far as side effects go, I have only experienced some light headedness, dry mouth, some mild stomach cramping after I take the medicine. Besides that I have handled it very well with little to complain about.  

 

In two weeks, I will have my regularly scheduled MRI of my brain. Hopefully they will find NOTHING in my brain. Take care - BDS                  

 

Comments

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #2
    WOW!

    So glad for good results.  Glad to hear something is working for you.

    I've got you meds reactions, but from my BP meds and vertigo problems.

    Hope your brain is just brain, and nothing else.

    Donna

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #3
    I'm with Donna

    Wow. Some seriously good news there!

  • Allochka
    Allochka Member Posts: 1,072 Member
    #4
    It is amazing how far modern

    It is amazing how far modern medicine has gone and what it can do! Very glad you have stable results, it gives so much hope for everyone!

  • pamstayner
    pamstayner Member Posts: 111 Member
    edited October 2016 #5
    Good news is always welcome here

    So good to hear it.  You really are a lab rat.. quite the trials you get to join... I think the future is moving upon us fast, and thanks to those like you, the drugs are being approved quicker, and better than before.  Horray for you.... and thanks..

    Pam

     

  • mrou50
    mrou50 Member Posts: 389 Member
    #6
    Good News

    Stable is good in this case keep up the great work. 

  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    BDS

    you always keep things exciting. That's wonderful!

  • Abunai
    Abunai Member Posts: 173 Member
    edited February 2017 #8
    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!

  • BDS
    BDS Member Posts: 172
    #9
    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!

    I am still here!

     

    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/

     

  • todd121
    todd121 Member Posts: 1,448 Member
    edited March 2017 #10
    BDS said:

    I am still here!

     

    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/

     

    Study?

    In the article it sounded like your treatment is actually combined CB-839 with Everolimus. Is that correct?

    Glad this is working for you!

    Todd

  • BDS
    BDS Member Posts: 172
    #11
    I am now an unemployed Lab Rat

     

    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 17th . 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 4th 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 23rd. 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           

     

  • pamstayner
    pamstayner Member Posts: 111 Member
    edited March 2017 #12
    I share the experience

    with you.  I washed out of the clinical trial of Nivolumab and Iburnitib here at UC Davis, Sacramento.  I did not last as long as you in a trial, I lasted 56 days, and was done right after the first scans were delivered.  Nivolumab worked for 10 months, and showed a small progression and the trial added Ibrunitib the last two months.  Progression was pretty fastly apparent with a big fat liver met.  I find I am not eligible for a lot of the newer trials ... the combo trials, because now I have been treated with a prior PD-1 . So it's back to square one, what do we do next.  I have to make a decision in a couple of weeks.  

    Bummer.... but as you know, choices will be made, and you will try again.  Best wishes.

    Pam

     

  • Abunai
    Abunai Member Posts: 173 Member
    #13
    Sorry

    Sorry to hear of your setbacks, Pam and BDS.

    I've been in my study for just under a month. I found last week, from an MRI ordered by my neurosurgeon, not the study docs, that a couple of Mets in my spine have grown a bit since early Feb.

    I'll find out tomorrow what that means for my clinical trial. Hopefully, I'm too early in the trial for this to be considered progression.

    I feel good about the nivolumab/ cb-839 combo and want to continue.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #14
    pamstayner said:

    I share the experience

    with you.  I washed out of the clinical trial of Nivolumab and Iburnitib here at UC Davis, Sacramento.  I did not last as long as you in a trial, I lasted 56 days, and was done right after the first scans were delivered.  Nivolumab worked for 10 months, and showed a small progression and the trial added Ibrunitib the last two months.  Progression was pretty fastly apparent with a big fat liver met.  I find I am not eligible for a lot of the newer trials ... the combo trials, because now I have been treated with a prior PD-1 . So it's back to square one, what do we do next.  I have to make a decision in a couple of weeks.  

    Bummer.... but as you know, choices will be made, and you will try again.  Best wishes.

    Pam

     

    Sorry for your struggle and

    Sorry for your struggle and for not supporting you sooner. But have you heard of Y-90 therapy? Not sure if its only for liver cancer tumors or any. It treats the tumor by going into it with this implanted radiation and killling it that way. Now that is MY layperson's view of how it works, so read up on it to get the more exact process.

    Anyway. I am here for you on your journey through this maze

    I am sending you thoughts of hope and healing!!

    Warmly, Jan

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #15
    Aww BDS, so sorry hon! What a

    Aww BDS, so sorry hon! What a bummer, after all that "good" news. What a journey you've been on a wild ride of ups and downs.

    Here for you ALL the way, the good and the not so...well.. you know.

    Sending you kind and loving thoughts of love and healing=mind, body, soul..

    Why? Cuz I care about you!!

    Hugs, Jan

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