Immunotheraphy Blog

Jillian9
Jillian9 Member Posts: 3
in Kidney Cancer #1

I am a 34 year old that just had a 10cm tumour, my kidney, and adrenal gland removed on December 20. I have recently started a clinical trail for immunotheraphy in hopes to stop any cancer from coming back. I have decided to start a blog to document the process in hopes to help anyone going through the same thing. My blog can be found at https://immunotheraphy.blogspot.ca. If you ever have any questions about surgery, symptoms, or immotheraphy, please feel free to contact me. 

Comments

  • Supersum
    Supersum Member Posts: 109 Member
    #2
    Hi Jillian it is such an

    Hi Jillian it is such an awful experience to be shocked with the news when we have cancer and it must be so much more difficult for those of us with young families to care for.

    I read your blog and you mentioned that you are not sure if you are getting a placebo or the trial drug and I can tell from that you are most likely on an adjuvant trial where the cancer hasn't spread because if the cancer has spread the trials usually test a new drug against an existing drug. Is that right?

    I am on a adjuvant trial myself you can click on my screen name and see I have written the name of the trial in my profile. Is that the trial you are on? Maybe not, there are many different ones running right now.

    Do you want to tell us what trial you are on? You might find a name or number or code on all the documentation you have been given. If you don't want to, then it is not important.

    The good things about connecting online with people in a similar situation to us is we can learn from others along with getting support and advice if we need it.

    You have been very generous offering to share what you know and what you have experienced so you can help others. When you connect online you can also learn about things which might be important to your treatment such as experiences of other people on your trial, and what immunological and other treatments people in Canada are receiving and how they are responding to them. You might also connect with some other young ladies who might even have a young family who would have a better understanding of what you are going through than me and so you would be in a better position to offer each other support.

    Anyway if you want to tell us what trial you are on that would be great. Or if you don't want to make it public then you can contact / message me through the link when you click my name if you prefer.

    Otherwise stay strong, I will check with your blog every so often and see how it matches with my own experience.

    By the way, I didn't have any side effects on my trial so I thought I was getting the placebo but then I had a rash after about 4 months so my oncologists thinks I might be getting the drug. That doesn't mean it will work for me though, we just have to wait and see.

    Robert (Supersum)

  • Manufred
    Manufred Member Posts: 241 Member
    edited March 2018 #3
    Open Label Stage 3 Trail

    Jilian,

    I have a brief history of my own experience on my profile page here.  Briefly, I had a kidney out in August 2012, and they discovered metastasis in April 2015. 

    My trial (Checkmate 214) was open label, and I know I was getting the Ipi/Nivo combination.  Minimal side effects and optimum result so far - no sign of tumours in the CT scans for the last 12 months.  The trial results have been published (ESMO September 2017) and show much improved outcomes against the comparable angio-suppression treatment.

    Of course I have learned that radiology is somewhat inexact so I am not celebrating, but so far I have had 3 good years that I would not have been able to enjoy without the immunotherapy.

    Hope all goes well for you and keep on blogging.

    Fred

     

  • Jillian9
    Jillian9 Member Posts: 3
    #4
    Supersum said:

    Hi Jillian it is such an

    Hi Jillian it is such an awful experience to be shocked with the news when we have cancer and it must be so much more difficult for those of us with young families to care for.

    I read your blog and you mentioned that you are not sure if you are getting a placebo or the trial drug and I can tell from that you are most likely on an adjuvant trial where the cancer hasn't spread because if the cancer has spread the trials usually test a new drug against an existing drug. Is that right?

    I am on a adjuvant trial myself you can click on my screen name and see I have written the name of the trial in my profile. Is that the trial you are on? Maybe not, there are many different ones running right now.

    Do you want to tell us what trial you are on? You might find a name or number or code on all the documentation you have been given. If you don't want to, then it is not important.

    The good things about connecting online with people in a similar situation to us is we can learn from others along with getting support and advice if we need it.

    You have been very generous offering to share what you know and what you have experienced so you can help others. When you connect online you can also learn about things which might be important to your treatment such as experiences of other people on your trial, and what immunological and other treatments people in Canada are receiving and how they are responding to them. You might also connect with some other young ladies who might even have a young family who would have a better understanding of what you are going through than me and so you would be in a better position to offer each other support.

    Anyway if you want to tell us what trial you are on that would be great. Or if you don't want to make it public then you can contact / message me through the link when you click my name if you prefer.

    Otherwise stay strong, I will check with your blog every so often and see how it matches with my own experience.

    By the way, I didn't have any side effects on my trial so I thought I was getting the placebo but then I had a rash after about 4 months so my oncologists thinks I might be getting the drug. That doesn't mean it will work for me though, we just have to wait and see.

    Robert (Supersum)

    Hi Robert, thank you for

    Hi Robert, thank you for responding and for your words of encouragement. I am also on a trail for Atezolizuma. I have sent you a DM. 

  • Jillian9
    Jillian9 Member Posts: 3
    edited March 2018 #5
    Manufred said:

    Open Label Stage 3 Trail

    Jilian,

    I have a brief history of my own experience on my profile page here.  Briefly, I had a kidney out in August 2012, and they discovered metastasis in April 2015. 

    My trial (Checkmate 214) was open label, and I know I was getting the Ipi/Nivo combination.  Minimal side effects and optimum result so far - no sign of tumours in the CT scans for the last 12 months.  The trial results have been published (ESMO September 2017) and show much improved outcomes against the comparable angio-suppression treatment.

    Of course I have learned that radiology is somewhat inexact so I am not celebrating, but so far I have had 3 good years that I would not have been able to enjoy without the immunotherapy.

    Hope all goes well for you and keep on blogging.

    Fred

     

    Hi Fred, thank you for

    Hi Fred, thank you for responding. Thats discouraging to hear that Radiology is unreliable, seeing as we rely on them so much!  But glad to hear that you have been cleared for the last 12 months. Fingers crossed it will be for much, much longer.  Have they given your the results of the trail you had done? Was it approved? 

  • Manufred
    Manufred Member Posts: 241 Member
    #6
    Trial being published

    Jillian,

    I had a 3-monthly scan last week - no evidence of any tumours so all good.  The trial co-ordinator has told me that the trial (Checkmate 214) is currently being written up and will be published in full shortly.  The results have already been used to gain approval for the Pharmaceutical Benefit Scheme that operates where I live, so here it is generally available to people with metastatic renal cell carcinoma.

    Radiology is by its very hature subjective and a little imprecise, but they are getting better.  However what is really needed is an accurate and reliable blood test for cancer, or something similar.  They are now finding (and killing) micromets of prostate cancer with liganded radioactive isotopes that bind to the cancer cells, so perhaps that is something that will work for other cancers also.

    All of this to me highlights the need to keep a high level of funding up to basic oncological research.

    I hope you are progressing well with your trial.  I'll check in on your blog from time to time.

    Regards and good luck,

    Fred

  • jimbo2016
    jimbo2016 Member Posts: 2
    #7
    clear cell rcc

    i was diagnosed with rcc in Mar 2016, had my right kidney removed, and three short months later, it was back and had spread even more.  Not wanting to take chemo, I opted for HD Il-2 as my only chance for possible "C".  It is a brutal course of therapy and extremely hard on mind and body, but after 2 rounds of interleukin-2, my CT scans cannot pick up the cancer and the elapsed time has been over 18 months. Doctors don't use the "C" word, but I feel optimistic and look only forward to enjoy this precious thing called life.

     

  • Manufred
    Manufred Member Posts: 241 Member
    edited March 2018 #8
    Take it however it comes

    Jimbo,

    Thanks for that, I did not even know about Interleukin until I researched your posting.   Seems it has been around for a couple of decades already.  Immunotherapy oncology research does seem to have a history of ups and downs. 

    I am really happy for you having gotten the results you describe.  I also hope that the Ipi/Nivo pathway which worked for me provides a perhaps less brutal alternative for others.  But in the end, all that matters is its gone and life beckons.

    Congratulations.

  • Supersum
    Supersum Member Posts: 109 Member
    #9
    Manufred said:

    Take it however it comes

    Jimbo,

    Thanks for that, I did not even know about Interleukin until I researched your posting.   Seems it has been around for a couple of decades already.  Immunotherapy oncology research does seem to have a history of ups and downs. 

    I am really happy for you having gotten the results you describe.  I also hope that the Ipi/Nivo pathway which worked for me provides a perhaps less brutal alternative for others.  But in the end, all that matters is its gone and life beckons.

    Congratulations.

    Hello Fred

    Hello Fred

    You mention ipilimumab and the Pharmaceutical Benefit Scheme which is something we have in Australia. Would you mind letting me know if you are in Australia I can't work out if you are talking about the Australian scheme.

    Thanks

  • saintmont
    saintmont Member Posts: 63
    #10
    Immunotheraphy

    Hi all, I have just had my 60th infusion of Nivolumab over 2 1/2 years. I have only got 1 met left in my neck which hopefully will operated on within the next 6 weeks. Nivolumab cleared the mets in the lungs. Without Nivolumab I would of being in a bad place. I still work, play golf , do weighs and walk. I have RCC for 6 1/2 year stage 4.

    Regards saintmont

  • Manufred
    Manufred Member Posts: 241 Member
    #11
    Supersum said:

    Hello Fred

    Hello Fred

    You mention ipilimumab and the Pharmaceutical Benefit Scheme which is something we have in Australia. Would you mind letting me know if you are in Australia I can't work out if you are talking about the Australian scheme.

    Thanks

    Sydney

    Supermum,

    Yes, I am talking about Australia's PBS.  I receive my treatment under the Checkmate 214 trial at Westmead.

    Fred

  • Manufred
    Manufred Member Posts: 241 Member
    #12
    saintmont said:

    Immunotheraphy

    Hi all, I have just had my 60th infusion of Nivolumab over 2 1/2 years. I have only got 1 met left in my neck which hopefully will operated on within the next 6 weeks. Nivolumab cleared the mets in the lungs. Without Nivolumab I would of being in a bad place. I still work, play golf , do weighs and walk. I have RCC for 6 1/2 year stage 4.

    Regards saintmont

    CHeckmate 214

    I started my Nivo treatment in July 2015, and just had dose 63 - must have started about the same time as you.  I was (and still am) part of the Checkmate 214 trail, which was publsihed in the New England Journal of Medicine last month - go to 

    http://www.nejm.org/doi/full/10.1056/NEJMoa1712126

    Are you receiving treatment under a trial or under supervision of a specialist oncologist?  And how are your SE's?

    Best of luck with the operation.

    Fred

     

  • jimbo2016
    jimbo2016 Member Posts: 2
    #13
    Manufred said:

    Take it however it comes

    Jimbo,

    Thanks for that, I did not even know about Interleukin until I researched your posting.   Seems it has been around for a couple of decades already.  Immunotherapy oncology research does seem to have a history of ups and downs. 

    I am really happy for you having gotten the results you describe.  I also hope that the Ipi/Nivo pathway which worked for me provides a perhaps less brutal alternative for others.  But in the end, all that matters is its gone and life beckons.

    Congratulations.

    keep up your good results

    Mahalo (thanks) for your support, and you're doing fine yourself.  My diagnosis was also found purely by chance, and to this day, I don't know why I went to see my primary physician, but we argued on the cause of my single

    symptom I was experiencing and he suggested an US because he thought my gallbladder was the problem.  I was totally asymtomatic on my rcc, and in fact when it was found, it was already in my right atrium via the

    inferior vena cava.  That was so scary and depressed me a whole lot, thinking I was going to die way too young.  I can't say enough about the interleukin-2 I received and the oncology team that supported me.  They told me

    that I had only a 7 percent chance of getting positive results from Il-2, but i saw it as my last option for that possible "C".  Take care of yourself, compadre.

  • saintmont
    saintmont Member Posts: 63
    #14
    nivo

    I am on a trial.

    Regards saintmont

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