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I am Now Officially a Lab Rat

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

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%20study_FINAL%205.28.2014.pdf

Lab Rat

Lab Rat 1

jason.2835
Posts: 337
Joined: Nov 2014

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.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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       

 

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

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

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I hope it gets even better. Good luck mate!

Terri065's picture
Terri065
Posts: 81
Joined: Dec 2014

God bless you and May the force be with you. 

Theresa

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

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

 

I am alive
Posts: 316
Joined: Jul 2012

Ok. Onward and upward. The good news? It's just one. Are we having fun yet?

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Wow. Scary stuff. How did your appointment go?

Hugs

Jojo

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 

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

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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

APny's picture
APny
Posts: 1946
Joined: Mar 2014

Best of luck to you and yes, have them blast that thing into oblivion!

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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! Laughing  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.  

Gamma Knife Waiting on Gamma Knife

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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.   

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Thats quite a story you've got there. I like the direction the plot is taking too. Great news

donna_lee's picture
donna_lee
Posts: 900
Joined: Feb 2009

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

jrzgrl66
Posts: 21
Joined: May 2015

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! 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

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

 

BDS's picture
BDS
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On Nov 1st 2015 marked 3 ½ years since my initial diagnosis.  The reason I bring this up is because given my poor prognosis at diagnosis 3 ½ years was given as my maximum life expectancy. So like an old carton of milk I am now “past due”  Laughing   

CT/ MRI scans on Oct 24, 2015.

Well let’s start with the good news. Two tumors from my CT/MRI scans showed significant reduction of disease.  The Right Paratacheal lymph node which was starting to become concerning decreased to half its previous size (Prevoiusly 20 mm X 26 mm now 10mm X 11mm) The Para Aortic lymph in my MRI decreased by one third.  The rest remained stable. The conclusion of the report reads - Interval decrease in mediastinal lymph nodes as described and measured above. No new evidence of disease.  Since my previous scans showed slight progression of disease I, my wife and my Doctor our one bunch of happy campers!

MRI of Brain on 11/11/2015

So for two and half weeks I was a very happy camper, full of optimism. Then the results of the MRI of my brain where posted. First the good news, the remnant of my brain tumor which was Gamma-Knifed in May continues to decrease in size. Now the bad news, a new 4mm nodule/tumor has been found on the right side of gyrus rectus region of my brain. I will have my Gamma-Knife consult on Nov 30th. Due to the tumor small size the doctors have to decide either to treat the tumor or take a wait and see approach. As you can imagine, this new occurrence is very upsetting. At least for me, Keytruda and INCB24360 do not seem to cross the blood brain barrier. If they do treat the tumor it will be my second Gamma Knife procedure within six months. I have to wonder how many times can they spot weld my brain before they cannot do it anymore?

So as of now, I am still in the clinical trial and receiving my infusions. Due to the small size of this new brain tumor there will be no break in treatment. So this Thanksgiving I just have to be thankful for that. 

One final thought. The other day I was in a training class for work. During break some of my fellow co-workers started revealing their health issues. One complained about serve back pain, another had painful bunions that made walking extremely difficult and painful. She would soon require surgery. Yet another complained of neck and wrist pain. I might add that currently my neighbor is recovery from back surgery and not doing well. He will remain in hospital rehab throughout the Thanksgiving holiday and is very depressed about it. I also have a friend who is suffering from a degenerative nerve disorder and now walks with a cane.  

During training I did not say anything about my condition. I just could not help but think - I feel great today, I feel healthy as a horse, I am going to my spinning/cycling class at LA Fitness after training today. I have stage 4 cancer. I am more screwed than all of them! Go figure! - BDS      

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Live on brother! I also think it is kind of funny when I hear people complain about generally insignificant health issues. I had debated about going to my high school class reunion in october because most people have known that I was sick. But then I realized that no one else would still weigh what they did in high school, and since I have recovered so well this year, I figured I looked better than most of them. I was right. Those that didn't know that I was sick were amazed at how well I've kept myself. LOL! those that expected to see a dead man walking were all so confused.

Like you, some days I feel great. I laugh when I think about how good I can feel while being so sick. Keep on trucking BDS.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Wow BDS, you are rocking the stage IV!! Way to go. You have been through a lot, but it does sound like it is going very well. Keep it up and please keep us posted!

It sounds like you and Foxy have the same great attitude in all of this. Just keep have a great day and enjoy your life!

Big hugs

Jojo

marosa's picture
marosa
Posts: 332
Joined: Feb 2015

BDS I just want to second Jojo's comment, you really rock!

One of life's greatest gift is a positive attitude.  It generates health, welbeing and it is inmensely contagious!!!  Everyone around you gets the benefit and so, we are lucky to have you with us!

I wish you well and a positive outcome in your treatment.  I have read your earlier posts and had been noticing your absence. Hope to read  you soon again with even better news!

 

 

cakelady's picture
cakelady
Posts: 63
Joined: Nov 2015

I'm so encouraged to read about people having successful treatments.  By successful, I mean they are living good, productive lives, keeping positive attitudes, and moving forward with living with something that will never go away.

I'm new to this, so I'm looking for positivity and hope, as well as information, to share with my husband.  Sometimes I think he's taking it well, but other times I can see it weighing so heavily on him and I can see how much heavier it will get as we go on.

This is what we signed on for when we got married, one way or the other, so we're in it to win it.

Much luck and good thoughts to you on your progress. Keep on keeping on!

 

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

It's funny when you mention everyone talking about their health problems.  It's almost sounds like a competition.  You should've piped up and said I have cancer,  I win!  I always love reading your posts.  Even when you are delivering not so good news, you always make it sounds so positive.  Like you don't have a care in the world.  You are just reporting the news about the cancer in facts, you seem emotionally removed from it.  I admire that.  I look to you and Fox and everyone else here as my inspiration like me and hubby can get through this!  Thanks for posting.  I'm praying for you!

BDS's picture
BDS
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Well were should I start….

 On Dec 15th I received my second Gamma Knife treatment for my second brain tumor. The one disturbing fact was in the thirty days since its discovery my latest brain tumor had doubled in size; from 4mm to 1 cm. Since I was not prescribed steroids after treatment I returned to work the next day.

 I was scanned on Dec 31st and Jan 4th. The CAT scan of my chest showed that the right paratracheal lymph node continued to reduce in size and is now 5mm x 5mm. It originally measured 2.4 X 1.8 cm when I started the trial a year ago.  Two other lymph nodes in my chest reduced in size by 2-3mm the rest remained stable. The two tumors in my abdomen that I like to refer to as “Sid Vicious” and “Johnny Rotten” have remained stable.  The radiologist report ruled the overall scans as stable disease.

Jan 8th marks my one year anniversary of my first infusion in the trial. Even though I do not have an exact numbers from my doctor most of my lymph nodes/tumors have decreased in size by 35-50 percent, a few have remained stable. That is the good news; the bad news is that I now have to accept the fact that my cancer has found new fertile ground in my brain, where these drugs have no effect. My next brain scan will be in February and every two months afterward for the rest of my life.    

The enzyme, usually only seen in the brain, could become a target for cancer therapy

https://www.foxchase.org/news/2014-04-06-AACR-Renal-Cancer-Cells-Thrive-in-the-Right-Environment 

INCB24360 now has a name……. it’s now called Epacadostat! They will be soon starting phase 3 trials but to my great disappointment Phase 3 will only include melanoma not renal cell. 

http://www.businesswire.com/news/home/20151103005629/en/Epacadostat-Combination-Pembrolizumab-Demonstrates-Promising-Clinical-Activity

Note – if you page down the businesswire article I am one of the two lab rats in the PR (partial response) column for RCC Laughing 

Dr. Tara Gangadhar on Epacadostat/ Pembrolizumab Combination

https://www.youtube.com/watch?v=AotpfnLbe1U

 

As I have mention many times I have suffered no visible side effect from this trial, other than that I am just plodding along enjoying life. Well that’s all that I have to report this time - wishing everyone a belated happy and healthy 2016.Take Care - BDS            

mrou50
Posts: 389
Joined: Mar 2013

I just started reading your posts from start to finish, I admire your strength, courage, and fortitude.   I am truly impressed with you, I have only been at this for a year and a half (stage IV) and I am already tired of all of the drugs, scans, Needles, NEEDLES, NEEDLES, oh and did I mention needles.  Thank you for taking bullets for the team and keep on living brother.

 

Mark

 

,

Pandabear1011
Posts: 123
Joined: Jun 2014

Very interesting and informative article! Thanks for posting! And, congrats on being stable. Stable is good...:).....Panda

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 Latest Scan results

Well let’s start with the good news.

Brain scans in Feb and April show that my second brain tumor treated on Dec 15th  has decreased in size and now according to the latest scan is now longer visible.  My first brain tumor (discovered in April of 2015) remains a 6 x 5 mm and is most likely dead. Looking at the MRI images it quite literally looks like I have a hole in my head. The MRI report also states that I have a sinus infection which is probably why I have felt so lousy the past week. No new enhancing lesions –Yeah!!!!

 

CT scan of my chest    

Mediastinal Lymph nodes appear stable – No Change from December 2015 scan

 

MRI of Abdomen and Pelvis 

Four lymph nodes never mention in previous scans reports have increased in size.  

2.1 x 1.8 cm previously .8 cm 

1.6 x 1.4 cm previously .6 cm 

1.5 x 1.0 cm previously 1.3 x 0.8 cm 

1.9 x 3.1 cm previously 1.7 x 1.3 cm 

The first three exhibit central  necrosis the last one exhibits heterogeneous enhancement. 

Impression : Interval increase in the size of the retropitoneal lymph node and portacaval lymphadenopathy , worrisome for recurrent metastatic tumor. 

So there you have it. As of now, I am still in the clinical trial pending the results of my next scan. This is the first scan from the neck down that there has been actual real progression. My doctor is being optimistic that the central  necrosis mentioned in the report is my immune system going after the cancer. However, she also mentioned that if there was continued progression in my next scan  I would be removed from the clinical trial and we would start seeking my next treatment options.   So you can see that while there was not much progression; I am very concerned. 

On a brighter note, I did speak to my research nurse; she informed me that with the good results they are getting from this clinical trial Incyte pharmaceutical was now defiantly planning a future clinical trial for renal cell. The details she did not say. It’s just something you should keep your options open for. At the very least, for a year and half this trial has given me positive outcome and a completely free of side effects   quality of life. - BDS      

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Incyte sounds interesting

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

BDS - wishing you all the best results possible with these meds.

Thank you for keeping us posted!

Hugs

Jojo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

lab rat! Sometimes there is no fun having rcc. We do are best.

mrou50
Posts: 389
Joined: Mar 2013

Sometimes there is no fun having RCC? I am still waiting for fun part, aside from the occasional procedure that involves being heavily sedated I have yet to see the fun part.  That being said from some of the drugs pumped into me, I must have missed alot being born in the 60's and not being a college student then.  

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Being visited by beautiful naked actresses whilst heavily sedated after surgery was rather fun. Although being kidnapped by Irish horse theives whilst both sedated and being short of air due to pneumonia was a little disturbing. Though they did sing very good folk songs.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Living as a teen in the late '60's and '70's was the perfect time. Or is this just another flashback?

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

That depends on exactly how you spent the 60's and 70's

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

All good things come to an end. My scans in June showed progression along with new tumors in my abdomen. Sadly my doctors and I made the decision that I should be removed from the clinical involving Keytruda and Epacadostat (INCB24360). On the bright side, Keytruda and INCB24360 gave me a year and half of good responses with virtually no side effects along a great quality of life. I should also mention that the latest scan show no new brain tumors.  Am I sad and depressed about being removed from this very promising clinical trial – Yes.

 To Add Insult to Injury:

 Back in December my wife used FLMA time while I underwent Gamma Knife treatment for my second brain tumor. Due to the rude comments of a co-worker who had to pick up the slack during her shift a series of events took place which culminated with my wife being forced to quit her job and sign a non-disclosure agreement.

 After working for eight years on the job and always receiving above average performance reviews all of a sudden nothing my wife did was satisfactory. Management placed my wife on a work “Action Plan”. During this period my wife’s manager set a trap and my wife walk right into it. My wife was given little choice but to resign her position for fear of losing her license.  You cannot imagine the bitterness and guilt I feel towards my wife’s former employer along with the role my cancer has played in ruining my wife’s career. Moral of the story: The FLMA law is not worth the paper it’s written on. If you use FLMA time and your employer is not happy about it – your employer can and will find a way around the law to get rid of you.  Oh, by the way, my wife worked in healthcare for a major hospital.

 If the above description seems vague it’s due to the non-disclosure agreement. And, yes my wife and I have spoken to a lawyer. The hospital’s management knew exactly what they were doing.

 

Onward:

 As of Thursday August 11th I am now enrolled in a new clinical trial at HUP it involves a new drug Glutaminase inhibitor CB-839 in combination with Everolimus (Clinical trial NCT02071862).  I been informed that I am the first person at HUP to be enrolled in this trial; boy to I feel like a lab rat. Wish me luck I am going to need it. I will keep you posted. - BDS

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

For your bad news. I think the story about your wife is disgusting and we should be thankful most ( I hope) management dont treat people like that.

Good luck with the new trial

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

BDS, I am so sorry to hear about all the challenges that have been thrown your way all at once! I am hoping that your new clinical trial goes well for you and that you will be soon posting on how well you are doing on it!

As far as your wife's dilemma.....shame on her employer!!! Signing of a non-disclosure agreement speaks volumes. And it is a HEALTHCARE facility! Double shame. That is tough to go through. But don't feel guilty....I am a firm believer that things happen for a reason. Hoping a perfect employment opportunity presents itself!

Take care BDS - stay strong!

Hugs

Jojo

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

All the best to you and your wife as you begin the new chapters of your journeys. May you both be blessed and be a blessing.

Jerzy

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I wish you only the best with your new trial, keep us posted.

As far as your wife goes, I too worked in healthcare and was "forced out" after many years of dedication, high performance appraisals, etc.  My situation was a bit different in that I didn't qualify for FMLA because my terminally ill family member was an uncle.  I dropped my status to part-time for over a year with absolutely no problems.  Then suddenly my manager said I could no longer have a set schedule of tuesdays & thursdays which allowed me to take my uncle for his weekly infusions.  I basically begged her to work with me, he literally had weeks left.  The response was quite heartless and forced me to take a Leave of Absence.....but they could not gaurantee my job would be mine when I was to return.  They quickly replaced me within 2 weeks.  My uncle passed 8 weeks after my Leave began.  Eleven days after his passing I turned 62 and decided to take an early retirement.   Although it's been a year now, I am still left with bitterness over the unbelievable heartlessness of it all.  Just thinking about it brings me to tears.  People would literally say to me, he's your uncle......as if it didn't matter.  He was always like a 2nd father to me, and I was the only one here to care for him, I'd never turn my back on him.  I can only hope a big dose of KARMA is headed their way at that hospital.  And if that's not bad enough, I feel guilty for thinking like that.  Cry  So, you and your wife are not alone and I suspect it's a trend.  Sad.

Donna~

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

The Principal of my school did everything she could to help me keep my job. Employing a sub full time even when I was officially working part-time. She knew that there would be days, due to weakness or side effects, when I wouldnt be able to make it in. Eventually we decided that it was best for me, and best for my students, that I take earlier retirement. Donna, I can only hope that a big dose of karma goes their way. Especially when I discovered that middle management, for whom I was just an inefficient number on the payroll, wanted me fired pretty much on day 1.

There are good people out there.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

.....I have learned since that I'm not the only one this has happened to.  Apparently there is a move afoot to eliminate those long-term employees for those with less experience due to costs.  Genius!  I'm guessing they hadn't considered there are also risks involved in that kind of move?  I hear patient care is suffering now and that breaks my heart.  (I worked with kids, pretty exclusively)

Donna~

Stu's picture
Stu
Posts: 8
Joined: Oct 2016

I have just been told I will be in the stage three Keytruda Epacadostat/Plecibo trial... Feeling lucky

 

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Congrats!

Best of luck, and keep us updated.

Feeling lucky for you too.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

 Glad you were selected to be included in the trial. All the best - !

Jerzy

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