I am Now Officially a Lab Rat

2

Comments

  • BDS
    BDS Member Posts: 172
    Another Bump in the Road

    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
    foxhd Member Posts: 3,181 Member
    BDS said:

    Another Bump in the Road

    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      

    Live on!

    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
    Jojo61 Member Posts: 1,309 Member
    foxhd said:

    Live on!

    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.

    Wow BDS, you are rocking the

    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
    marosa Member Posts: 334 Member
    Jojo61 said:

    Wow BDS, you are rocking the

    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

    You Rock!

    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
    cakelady Member Posts: 63
    BDS said:

    Another Bump in the Road

    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      

    Thank you.

    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
    cheatinlil Member Posts: 197
    BDS said:

    Another Bump in the Road

    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      

    It's funny when you mention

    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
    BDS Member Posts: 172
    Stable Mable

    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
    mrou50 Member Posts: 389 Member
    BDS said:

    Stable Mable

    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            

    BDS

    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
    Pandabear1011 Member Posts: 123 Member
    Stable is Good!!

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

  • BDS
    BDS Member Posts: 172
    Worrisome

     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
    Footstomper Member Posts: 1,237 Member
    BDS said:

    Worrisome

     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      

    Pretty good

    Incyte sounds interesting

  • Jojo61
    Jojo61 Member Posts: 1,309 Member

    Pretty good

    Incyte sounds interesting

    BDS - wishing you all the

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

    Thank you for keeping us posted!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    Jojo61 said:

    BDS - wishing you all the

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

    Thank you for keeping us posted!

    Hugs

    Jojo

    Go get'em

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

  • mrou50
    mrou50 Member Posts: 389 Member
    foxhd said:

    Go get'em

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

    Sometimes?

    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
    Footstomper Member Posts: 1,237 Member
    mrou50 said:

    Sometimes?

    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.  

    Fun

    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
    foxhd Member Posts: 3,181 Member

    Fun

    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.

    Ah, the seventies.

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

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    foxhd said:

    Ah, the seventies.

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

    I guess

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

  • BDS
    BDS Member Posts: 172
    All good things come to an end

    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

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    BDS, I am so sorry to hear

    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

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    BDS said:

    All good things come to an end

    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

    Sorry

    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