I am Now Officially a Lab Rat
I know I have not posted much lately but this is “what has come down the pike” for me. I have been accepted into a PD-1 Clinical Trail at the Hospital at the University of Pennsylvania (HUP) (ClinicialTrials.Gov – NCT02178722). The trial involves infusions of Keytruda (Pembrolizumab - MK-3475) every three weeks along with taking a new and unapproved drug INCB24360-202 by Incyte (http://www.incyte.com) twice a day. The trial is the first time that the combination of these two drugs has been tested humans - thus I am truly a Lab Rat J. The trial also allows for selection of multiple tumor types.
This has been my fourth serious attempt to get into a PD-1 Clinical trial. So for me, the fourth time was finally the charm. Yesterday, was my first infusion along with a long battery of bloodwork (Arrived at 7am did not leave until 5:30pm). I was originally supposed to start this trial back in September put I unfortunately came down with a case of walking pneumonia so I was moved into the next cohort of the trial. To gain entry into the trial you have to pass three hurdles.
1. Pass the medical selection criteria
2. Have a biopsy performed of one of your tumors. The trial requires/wants the genetics of your tumor. For me this almost caused my exclusion from the trial. Unfortunately for me, most my tumors are located in deep and dangerous places within my body. First it was supposed to be an ultra sound guided biopsy then a CT guided biopsy and finally HUP determined that a bronchoscope would work. It was my last option!
3. Constant blood work they are mainly looking for how your liver handles the combination of the two drugs. If my liver enzymes go through the roof I am out of the trial. Since I was on Votrient for almost 2 ½ years and never had a problem with my liver enzymes, hopefully this will not be a problem for me.
Caution / Results so far.
So far I feel great; however, I also did not start experiencing side effects from Votrient until after a month.
I was told yesterday that of the eight people currently enrolled in this Clinical Trail the only side effect reported was a sever rash in one of the patients. This required a dose reduction of dose of drug INCB24360-202. Of the people who were enrolled before me in September all have had their first scans - all have reported significant reduced tumor burden. I caution this is preliminary results but it is good new none the less.
On the Downside
Currently only this phase of the Clinical Trial will accept RCC patients the next phase will not. There are 17 patients currently waiting to be enrolled into the next cohort of the trial at HUP. The cohort that I was enrolled in only had two open slots.
On December 5th I had my most recent scans - on the bright side no new tumors have been detected on the downside I had progression. This was my third scan where I have had slight to moderate progression of disease. I feel truly blessed that this trial opened up for me but my time on Votrient was probably coming to an end.
Final Thoughts
Well guys wish me luck I will need it! As the Trial progresses for me I will post my results. Hopefully it will be only good news.
Fox, I may not post much on CSN but when I do I have something to say! Life is Good – BDS
http://www.incyte.com/sites/default/files/ASCO2014_Gibney_INCB024360-201 study_FINAL 5.28.2014.pdf
Comments
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SUPER lab rat
Ha! I love you attitude about this... Of course now you must keep everyone updated as to the progress because it sounds like you are one of the few blazing a trail into the future! Good luck, my friend.
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Go get 'em, BDS - Super Lab Rat!!jason.2835 said:SUPER lab rat
Ha! I love you attitude about this... Of course now you must keep everyone updated as to the progress because it sounds like you are one of the few blazing a trail into the future! Good luck, my friend.
This is quite the trial you got into. You must feel like you won the lottery. I am so happy for you, and wish you the best of luck with the results.
Your posts are always so informative, and well written. I look forward to reading your posts on your progress.
Take care!!
Hugs
Jojo
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Update 01/30/2015
On January 26th I received my second infusion of Keytruda (Pembrolizumab - MK-3475) at HUP. So far the only side effect has been a rash at the injection site after the first infusion on January 8th. Out of caution, I was temporarily taken off the investigational medication INCB24360 but resumed after a few days. As of today the rash has not recurred. Besides that I feel great! I have not felt this good in years!
Even through my body tolerated Votrient quite well you do not realize how much that medication wears on you until you are off of it. I no longer suffer from the bathroom issues and fatigue associated with Votrient. My hair color is now changing back so I recently got a military style buzz-cut. I was starting to look a little two toned skunky! I did not have any grey hair when I was diagnosed back in May of 2012. After what I have been through, I am sure that I have some now! How much grey - I will just have to wait and see. Otherwise, I am now back to a full workout schedule at the gym. I recently even dusted off my old beat up elliptical machine in my basement and started that using it again. In fact, I have been feeling so good lately that my wife put me back on cat litter duty. J
My next infusion is on February 16th. Of course feeling good now is no guarantee that this combination of drugs is doing me any benefit. Or that I will not suffer from some unforeseen side effect in the future. But, I was informed by my doctor that there is a woman in this trial who has RCC. She just got the result of her first scan and had a 30 % reduction in overall tumor burden - positive and encouraging news indeed. My first scan will be sometime in March – Hoping for the best wish me luck - BDS
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Thank you to our Lab Rat!BDS said:Update 01/30/2015
On January 26th I received my second infusion of Keytruda (Pembrolizumab - MK-3475) at HUP. So far the only side effect has been a rash at the injection site after the first infusion on January 8th. Out of caution, I was temporarily taken off the investigational medication INCB24360 but resumed after a few days. As of today the rash has not recurred. Besides that I feel great! I have not felt this good in years!
Even through my body tolerated Votrient quite well you do not realize how much that medication wears on you until you are off of it. I no longer suffer from the bathroom issues and fatigue associated with Votrient. My hair color is now changing back so I recently got a military style buzz-cut. I was starting to look a little two toned skunky! I did not have any grey hair when I was diagnosed back in May of 2012. After what I have been through, I am sure that I have some now! How much grey - I will just have to wait and see. Otherwise, I am now back to a full workout schedule at the gym. I recently even dusted off my old beat up elliptical machine in my basement and started that using it again. In fact, I have been feeling so good lately that my wife put me back on cat litter duty. J
My next infusion is on February 16th. Of course feeling good now is no guarantee that this combination of drugs is doing me any benefit. Or that I will not suffer from some unforeseen side effect in the future. But, I was informed by my doctor that there is a woman in this trial who has RCC. She just got the result of her first scan and had a 30 % reduction in overall tumor burden - positive and encouraging news indeed. My first scan will be sometime in March – Hoping for the best wish me luck - BDS
BDS,
Sounds like everything is going really great so far! I am super happy about how you are feeling, sorry about cat litter duty, but it sounds wonderful to me! Keep up the good karma, and keep posting!
Prayers for good health!
Brenda
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Sounds goodBDS said:Update 01/30/2015
On January 26th I received my second infusion of Keytruda (Pembrolizumab - MK-3475) at HUP. So far the only side effect has been a rash at the injection site after the first infusion on January 8th. Out of caution, I was temporarily taken off the investigational medication INCB24360 but resumed after a few days. As of today the rash has not recurred. Besides that I feel great! I have not felt this good in years!
Even through my body tolerated Votrient quite well you do not realize how much that medication wears on you until you are off of it. I no longer suffer from the bathroom issues and fatigue associated with Votrient. My hair color is now changing back so I recently got a military style buzz-cut. I was starting to look a little two toned skunky! I did not have any grey hair when I was diagnosed back in May of 2012. After what I have been through, I am sure that I have some now! How much grey - I will just have to wait and see. Otherwise, I am now back to a full workout schedule at the gym. I recently even dusted off my old beat up elliptical machine in my basement and started that using it again. In fact, I have been feeling so good lately that my wife put me back on cat litter duty. J
My next infusion is on February 16th. Of course feeling good now is no guarantee that this combination of drugs is doing me any benefit. Or that I will not suffer from some unforeseen side effect in the future. But, I was informed by my doctor that there is a woman in this trial who has RCC. She just got the result of her first scan and had a 30 % reduction in overall tumor burden - positive and encouraging news indeed. My first scan will be sometime in March – Hoping for the best wish me luck - BDS
I hope it gets even better. Good luck mate!
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February Scans
I am doing OK and I feel great. I was scanned on February 23rd after only 46 days of treatments. I really think I should have been scanned sometime after April 3rd with the standard completion of 12 weeks of treatment. What HUP scientifically was hoping to find in that short of time I do not know. But I am a Lab Rat and when they tell the Lab Rat to jump I have to say - how high! The scans revealed slight growth in some tumors and slight shrinkage in others. We are talking 2-4 millimeters here in either direction and that is nothing! So the radiologist CT/MRI report ruled it as a mixed response/mild progression. The really good news is that no new tumors showed up and I have not suffered from any noticeable side effects. I met with the doctors at HUP on Monday, March 9th and they ruled it as stable disease. Stable is good! I will take stable. So I am still in the clinical trial but it is still too early to determine if these drugs are truly benefitting for me. Hoping for the best. - BDS
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Hey BDS,BDS said:February Scans
I am doing OK and I feel great. I was scanned on February 23rd after only 46 days of treatments. I really think I should have been scanned sometime after April 3rd with the standard completion of 12 weeks of treatment. What HUP scientifically was hoping to find in that short of time I do not know. But I am a Lab Rat and when they tell the Lab Rat to jump I have to say - how high! The scans revealed slight growth in some tumors and slight shrinkage in others. We are talking 2-4 millimeters here in either direction and that is nothing! So the radiologist CT/MRI report ruled it as a mixed response/mild progression. The really good news is that no new tumors showed up and I have not suffered from any noticeable side effects. I met with the doctors at HUP on Monday, March 9th and they ruled it as stable disease. Stable is good! I will take stable. So I am still in the clinical trial but it is still too early to determine if these drugs are truly benefitting for me. Hoping for the best. - BDS
Stable is good,Hey BDS,
Stable is good, indeed!! And considering they did the scans a bit on the early side....the results hopefully will continue to be good!
Thanks for keeping us posted!
Be well.
Hugs
Jojo
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The Lab Rat has a Brain Tumor
The following text was sent to my doctor and nurse case manager on Monday April 27, 2015
Kristin, sorry to bother you especially on Monday because I know you are busy but there are a few things you should know On April 23rd Aetna contacted me and informed me that the authorizations for my scans were denied. The reasons for the denial were forwarded to HUP. As of Saturday evening I have stopped taking INCB02436. On Saturday, I had a funeral to attend it took me over 40 minutes to get dressed in a suit that I had laid out the night before. I then could not drive my car out of my own neighborhood! I physically was unable to perform the hand over hand motion required to steer my car On Sunday, I called HUP and spoke to the on-call oncologist and explained the situation. Please let me know what my next course of action will be. Thanks
Response: GO TO THE ER NOW!
Well what I thought was a persisted sinus/upper respiratory infection has turnout to be a 3 cm brain tumor. The only good news I can report is that as of now until the rest of my scans can be completed I am still in the clinical trial. I can also resume taking INCB02436. Tomorrow I meet with the radiation oncologist at HUP and discuss treatment options most likely Gamma knife. Wish the lab rat luck. Also, if anybody has experience with brain Mets or Gamma knife please feel free to chime in - Thanks BDS
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JeeezBDS said:The Lab Rat has a Brain Tumor
The following text was sent to my doctor and nurse case manager on Monday April 27, 2015
Kristin, sorry to bother you especially on Monday because I know you are busy but there are a few things you should know On April 23rd Aetna contacted me and informed me that the authorizations for my scans were denied. The reasons for the denial were forwarded to HUP. As of Saturday evening I have stopped taking INCB02436. On Saturday, I had a funeral to attend it took me over 40 minutes to get dressed in a suit that I had laid out the night before. I then could not drive my car out of my own neighborhood! I physically was unable to perform the hand over hand motion required to steer my car On Sunday, I called HUP and spoke to the on-call oncologist and explained the situation. Please let me know what my next course of action will be. Thanks
Response: GO TO THE ER NOW!
Well what I thought was a persisted sinus/upper respiratory infection has turnout to be a 3 cm brain tumor. The only good news I can report is that as of now until the rest of my scans can be completed I am still in the clinical trial. I can also resume taking INCB02436. Tomorrow I meet with the radiation oncologist at HUP and discuss treatment options most likely Gamma knife. Wish the lab rat luck. Also, if anybody has experience with brain Mets or Gamma knife please feel free to chime in - Thanks BDS
Ok. Onward and upward. The good news? It's just one. Are we having fun yet?
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Wow. Scary stuff. How didI am alive said:Jeeez
Ok. Onward and upward. The good news? It's just one. Are we having fun yet?
Wow. Scary stuff. How did your appointment go?
Hugs
Jojo
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Gamma Knife it is
Well, I met with the doctors at HUP today it's going to be Gamma knife on May 7th. The tumor is deep within my brain and It is incredible that they can even get to it. surgery is not even an option The other incredible thing is that the doctors believe that my 2-3cm tumor is only a month or two old! (My last MRI of my head was less than a year ago) It's not even the size of the tumor that causing me problems it's the swelling around the tumor. The good news is that it's just only one tumor and that the doctors believe that they nuke this puppy into oblivion. Wish me luck- BDS
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Well that is good that it isBDS said:Gamma Knife it is
Well, I met with the doctors at HUP today it's going to be Gamma knife on May 7th. The tumor is deep within my brain and It is incredible that they can even get to it. surgery is not even an option The other incredible thing is that the doctors believe that my 2-3cm tumor is only a month or two old! (My last MRI of my head was less than a year ago) It's not even the size of the tumor that causing me problems it's the swelling around the tumor. The good news is that it's just only one tumor and that the doctors believe that they nuke this puppy into oblivion. Wish me luck- BDS
Well that is good that it is only one tumor. Is Gamma knife the same as Cyber knife? May 7th isn't too far away. Nuke away!
I will be sending good thoughts and prayers your way!
Hugs
Jojo
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Best of luck to you and yes,Jojo61 said:Well that is good that it is
Well that is good that it is only one tumor. Is Gamma knife the same as Cyber knife? May 7th isn't too far away. Nuke away!
I will be sending good thoughts and prayers your way!
Hugs
Jojo
Best of luck to you and yes, have them blast that thing into oblivion!
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Now for the really good news!
May 19,2015
Now for the really good news! Obviously, having a brain tumor was not a positive indicator that things were going well for me in this clinical trial. I had my CT/MRI scans on May 11th and 12th I must have had the worst case of scan anxiety I have ever had and being on steroids really does not help! Scan results- There has been a significant reduction in tumor burden. I am still the trial! If there are no other issues caused by my now vaporized brain met I will be resuming treatment on June 1st .Life is really good right now! This is the best news I had in over a year and a half- BDS
Details – CT Chest - Most tumors shrank 2-4 mm one tumor is now 6 mm compared to 20 mm in previous study. Smaller tumors mentioned in previous report are not mentioned. Waiting on HUP radiologist to reread the CDS and issue final report.
Impression: Stable right paratracheal lymph node. Otherwise decrease in Mediastinal lymphadenopathy. No evidence of disease progression in chest.
MRI – Abdomen/Pelvis – Left para-aortic mass has significantly decreased in size since prior exam measuring roughly 1.7 x 1.5 x1.9 cm previously measuring 3.8 x3.3 x 4.8 cm
Impression – Significant interval improvement in left para-aortic retroperitoneal adenopathy. No new lymph nodes observed.
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Gamma Knife
May 15, 2015
God, where do I start? If it was not for the fact that I was the test subject of Gamma Knife it really pretty cool! The actual procedure itself was nothing. Afterwards the doctors informed me that they were able to get the entire tumor. My Brain tumor had not increased in size since my initial MRI. Best of all there the Doctors did not find any other brain metastases. Given my tumor size and location I have truly dodge a bullet. Great news Yeah!!!!
Now waiting – The only reason my tumor was detected was due to swelling in my brain. To decrease the swelling in my brain around the now vaporize tumor sight I am taking the steroid (DEX). I will be taking this drug until the end of May and cannot resume any clinical trial treatment until then. These steroids are absolutely terrible! I cannot drive and act like I am a total space cadet at times. Sometimes, I am perfectly fine other times I am completely over the top! These Roids really changes your personality. My wife says we may need couples therapy after this is over!
But life is good. I am back at work - my son drives. It’s now payback time for all those soccer games, archery and Karate classes. 
Waiting on Gamma Knife0 -
Wow!BDS said:Now for the really good news!
May 19,2015
Now for the really good news! Obviously, having a brain tumor was not a positive indicator that things were going well for me in this clinical trial. I had my CT/MRI scans on May 11th and 12th I must have had the worst case of scan anxiety I have ever had and being on steroids really does not help! Scan results- There has been a significant reduction in tumor burden. I am still the trial! If there are no other issues caused by my now vaporized brain met I will be resuming treatment on June 1st .Life is really good right now! This is the best news I had in over a year and a half- BDS
Details – CT Chest - Most tumors shrank 2-4 mm one tumor is now 6 mm compared to 20 mm in previous study. Smaller tumors mentioned in previous report are not mentioned. Waiting on HUP radiologist to reread the CDS and issue final report.
Impression: Stable right paratracheal lymph node. Otherwise decrease in Mediastinal lymphadenopathy. No evidence of disease progression in chest.
MRI – Abdomen/Pelvis – Left para-aortic mass has significantly decreased in size since prior exam measuring roughly 1.7 x 1.5 x1.9 cm previously measuring 3.8 x3.3 x 4.8 cm
Impression – Significant interval improvement in left para-aortic retroperitoneal adenopathy. No new lymph nodes observed.
Thats quite a story you've got there. I like the direction the plot is taking too. Great news
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Hi BDSFootstomper said:Wow!
Thats quite a story you've got there. I like the direction the plot is taking too. Great news
All I can add is a big Thank YOU! What you are going thru is hard on you and the family, but let's hope your serving a an SLR (Super Lab Rat) will have good results for many others in the future.
Again, thanks and best wishes.
Donna
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Thank you for all the infoBDS said:Now for the really good news!
May 19,2015
Now for the really good news! Obviously, having a brain tumor was not a positive indicator that things were going well for me in this clinical trial. I had my CT/MRI scans on May 11th and 12th I must have had the worst case of scan anxiety I have ever had and being on steroids really does not help! Scan results- There has been a significant reduction in tumor burden. I am still the trial! If there are no other issues caused by my now vaporized brain met I will be resuming treatment on June 1st .Life is really good right now! This is the best news I had in over a year and a half- BDS
Details – CT Chest - Most tumors shrank 2-4 mm one tumor is now 6 mm compared to 20 mm in previous study. Smaller tumors mentioned in previous report are not mentioned. Waiting on HUP radiologist to reread the CDS and issue final report.
Impression: Stable right paratracheal lymph node. Otherwise decrease in Mediastinal lymphadenopathy. No evidence of disease progression in chest.
MRI – Abdomen/Pelvis – Left para-aortic mass has significantly decreased in size since prior exam measuring roughly 1.7 x 1.5 x1.9 cm previously measuring 3.8 x3.3 x 4.8 cm
Impression – Significant interval improvement in left para-aortic retroperitoneal adenopathy. No new lymph nodes observed.
Thank you for all the info and updates. I work for a primary care doctor and we actually conduct clinical trials in our office. They are in no way to the extent your going through. They are extremely helpful in getting new drugs on the market and I must say "THANK YOU" for all your efforts. If it wasn't for people like you, new medicine wouldn't be available to us.
Good luck!
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I am in Lymph Node/Tumor Limbo
Well I finished my recent set of scans and blood work on August 12th. Let’s start with the good news.
My blood work is almost damn near perfect.
The MRI of my brain on July 17th shown significant decrease in size of my brain tumor, with decrease in edema. No new brain metastases were found. – Gamma knife worked! Great news so far so good
CT/MRI of Chest and Abdomen – First the good news.
· No new tumors or nodules found
Now for the concerning news.
Several lymph nodes are now slightly enlarged from my prior study; size increases range anywhere between 3 to 5 mm. One example being, the right paratracheal lymph node measures 20 X26mm previously 18 X22mm. However, some did remain unchanged. The scan results were reviewed by the clinical trial and rated as stable disease/mixed response. I received my latest infusion of Keytruda on Aug 24th .
I find the latest results of my scans of my chest and abdomen somewhat concerning, since my previous scan showed significant shrinkage of all nodes and tumors. I do not know if my current slight increase in tumor burden is because I was off all medication for the month of May while recovery from Gamma Knife. Or is this just part of process of being treated with a PD-1 immunotherapy drug? So, I have a question for anyone who has ever been in a PD-1 immunotherapy trial. Have you ever experience Yo-Yo results between scans. Or, is it, once the immunotherapy drugs start working it continues to reduce tumor burden until either the tumor has completely disappeared or hits a stable plateau.
Your responses would be greatly appreciated. – Thank You - BDS
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