everolimus - any experience?

cdjr
cdjr Member Posts: 10
in Kidney Cancer #1

Hi

 

I am writing from the UK - my older brother was diagnosed with kidney cancer in September 2010 aged 55. He was told it was contained and that no treatment should be necessary once his kidney was removed. On that basis his surgery was delayed twice and he was not operated on until January 2011. We will never know if that delay was significant and there is no point in looking back, only forward, but by the time his kidney was removed it was obvious it had not been contained albeit scans immediately after showed no signs of the cancer having spread. His surgeon was clearly so concerned at the size and aggression of the tumour that she referred him to a specialist consultant in one of the best hospitals in London. He was put on a clinical trial for sutent (we think he had the placebo as when they scanned him in October 2011 several nodules had appeared on both lungs, it was not looking good at that stage).

As my brother was on a clinical trial he was then automatically switched over to the sutent in November 2011, at the three month scan all of the nodules had reduced significantly, these reductions continued at each scan. He was on a very high dose and suffered quite severe side effects in weeks three and four of the cycle. However, he still did all the normal things and continued going to the gym (every morning!) and to work. He remained very positive and led life to the full. However, his consultant decided that after a year of being on the high dose, the side effects were quite extreme and that the dosage should be reduced. At his scan earlier this year the nodules had changed and enlarged, the consultant said the changes were "miniscule" and a non expert might not even have noticed the changes. He put him back up on the higher dosage of sutent and scanned him again after one month, he was told today that there had been more changes to the nodules, very small again but nevertheless the consultant believed the sutent had now stopped being effective.

His consultant is going to now start him on Everolimus and I just wondered if anyone had any experience of how effective it is, the side effects and the average time it is likely to keep things under control before he is likely to need to move on to the next drug, which we understand is likely to be Axintinib. The consultant seems very positive about things, even with this set back. Scans show that it is still confined to the nodules in the lungs and there has been no further spread. He is still going to the gym every day, working and generally living life to the full - you would never know he is living with cancer, he is just so positive, although his hair and eybrows did turn white!

This is the first time I have ever used a forum like this, so I do hope I have posted it in the right placen having randomly posted it somewhere else first?!

thanks

CJ

Comments

  • I am alive
    I am alive Member Posts: 315
    #2
    On everolimus & bevacizumab

    Cj,

      I have been taking a 10mg everolimus pill daily since last July, but I also get an infusion of bevacizumab  every other week, so I can't speak to the everolimus-only situation. But I can report that side effects for me have been minimal. They come in waves, then disappear. I live my live much as I always have.  Unfortunately I can't speak to how long everolimus generally works. I applaud your brother's positive attitude. That alone makes him my hero. And he's blessed to have such a caring sibling as you. All the best.

  • cdjr
    cdjr Member Posts: 10
    #3
    I am alive said:

    On everolimus & bevacizumab

    Cj,

      I have been taking a 10mg everolimus pill daily since last July, but I also get an infusion of bevacizumab  every other week, so I can't speak to the everolimus-only situation. But I can report that side effects for me have been minimal. They come in waves, then disappear. I live my live much as I always have.  Unfortunately I can't speak to how long everolimus generally works. I applaud your brother's positive attitude. That alone makes him my hero. And he's blessed to have such a caring sibling as you. All the best.

    enverolimus and bevacizumB

    Hi,

     

    Thank you for your reply that is really helpful, I will tell him about the infusion and he can discuss that with his consultant.  I do think his attitude is half the battle, in November 2011 he was told by a junior doctor there was nothing more they could do and to expect to have 12-18 months.  It was only by looking on these chat sites that I discovered the treatments available and I went along with him and his wife to the next consultation, having insisted that we see the most senior consultant (which we did).  He apologised for the junior doctor and reassurred us that whilst there are no guarantees with anything,  his hope was he would be treating my brother for many years to come.

    In the UK our equivalent of the FDA has refused to approve Evorlimus or Axintinib for second line treatment for kidney cancer, thus a junior doctor or a non specialist would not be aware of them.  We are very fortunate, he has private medical insurance which means he can have access to these drugs now.

    Additionally, my father is on week five of radiotherapy and combined chemotherapy for bladder cancer, so I am becoming quite an expert on different tumours,  grading, types and therapies.  one thing I have learnt is that worrying about what will be is fruitless, but taking time to understand options and choices is vital.

    My brother's approach has been "if I spend today worrying about what tomorrow will bring, today will become yesterday and I will have wasted the opportunity to enjoy it!"

    All the best, very glad the treatment is working for you.

     

    CJ

  • todd121
    todd121 Member Posts: 1,448 Member
    #4
    cdjr said:

    enverolimus and bevacizumB

    Hi,

     

    Thank you for your reply that is really helpful, I will tell him about the infusion and he can discuss that with his consultant.  I do think his attitude is half the battle, in November 2011 he was told by a junior doctor there was nothing more they could do and to expect to have 12-18 months.  It was only by looking on these chat sites that I discovered the treatments available and I went along with him and his wife to the next consultation, having insisted that we see the most senior consultant (which we did).  He apologised for the junior doctor and reassurred us that whilst there are no guarantees with anything,  his hope was he would be treating my brother for many years to come.

    In the UK our equivalent of the FDA has refused to approve Evorlimus or Axintinib for second line treatment for kidney cancer, thus a junior doctor or a non specialist would not be aware of them.  We are very fortunate, he has private medical insurance which means he can have access to these drugs now.

    Additionally, my father is on week five of radiotherapy and combined chemotherapy for bladder cancer, so I am becoming quite an expert on different tumours,  grading, types and therapies.  one thing I have learnt is that worrying about what will be is fruitless, but taking time to understand options and choices is vital.

    My brother's approach has been "if I spend today worrying about what tomorrow will bring, today will become yesterday and I will have wasted the opportunity to enjoy it!"

    All the best, very glad the treatment is working for you.

     

    CJ

    Everolimus

    First, I was wondering if they unblinded the study and found for sure he was on the placebo before while on the trial? I'm assuming they did, or they wouldn't have put him on the sutent to start with.

    I'm on a drug trial for everolimus. Unfortunately you have to consider that I might be taking a placebo. I don't believe I am. The major side effects I've experienced have been fatigue, which seems to have improved over time, but I still have it. Nausea, but it's mild and has not affected my appetite (although I get quite naseous when eating red meat, or over-eating fatty or fried foods, which is probably a good thing). I had just a few tender spots in my mouth after first starting it, but they went away. I had some persistent sinusitis and post-nasal drip when I first started it that lasted longer than normal for me (I have allergies that cause me to have this anyway), but it got better over time also. Realy, it hasn't been too bad. I had one bout of severe nausea after over-eating red meat when I was in the first few weeks of taking it and was re-thinking whether I would continue, but I pushed on and I'm glad I did. Once in awhile I have to take a zofran for my nausea, but rarely have to do that. I think my blood pressure has crept up a bit, but it was ok to start with and still isn't high. All my blood work at 6 weeks was "normal" for me. I'm having my 12 weeks blood work this week, so we'll find out if there've been other changes.

    Hope it works. It appeared to work pretty well in the studies I looked at. Unfortunately, most of the patients that have taken it have had a pretty heavy tumor load by the time they get it, so it's hard to compare the results against the drugs given in the beginning when the tumor load is lighter.

    There seem to be some trials around that are combining this drug with a different TKI drug. You might look around for studies like that.

    I hope and pray things improve.

    Todd

  • cdjr
    cdjr Member Posts: 10
    #5
    todd121 said:

    Everolimus

    First, I was wondering if they unblinded the study and found for sure he was on the placebo before while on the trial? I'm assuming they did, or they wouldn't have put him on the sutent to start with.

    I'm on a drug trial for everolimus. Unfortunately you have to consider that I might be taking a placebo. I don't believe I am. The major side effects I've experienced have been fatigue, which seems to have improved over time, but I still have it. Nausea, but it's mild and has not affected my appetite (although I get quite naseous when eating red meat, or over-eating fatty or fried foods, which is probably a good thing). I had just a few tender spots in my mouth after first starting it, but they went away. I had some persistent sinusitis and post-nasal drip when I first started it that lasted longer than normal for me (I have allergies that cause me to have this anyway), but it got better over time also. Realy, it hasn't been too bad. I had one bout of severe nausea after over-eating red meat when I was in the first few weeks of taking it and was re-thinking whether I would continue, but I pushed on and I'm glad I did. Once in awhile I have to take a zofran for my nausea, but rarely have to do that. I think my blood pressure has crept up a bit, but it was ok to start with and still isn't high. All my blood work at 6 weeks was "normal" for me. I'm having my 12 weeks blood work this week, so we'll find out if there've been other changes.

    Hope it works. It appeared to work pretty well in the studies I looked at. Unfortunately, most of the patients that have taken it have had a pretty heavy tumor load by the time they get it, so it's hard to compare the results against the drugs given in the beginning when the tumor load is lighter.

    There seem to be some trials around that are combining this drug with a different TKI drug. You might look around for studies like that.

    I hope and pray things improve.

    Todd

    Everolimus

    Hi Todd,

    Thanks for that, it is really helpful to know.  I dont think they did "unblind" the trial, as soon as the nodules appeared on the lungs all paperwork was handed back by the hospital.  However, I think the trial was for a different drug not actually sutent.  I recall the consultant saying he would not put him on the drug he was on for the trial for but would put him on sutent.  We realised afterwards this was probably because if he had not been recieving the placebo but was on the trial drug, the consultant had realised that it had not worked for him.

    I am going back to the consultant with him next Wednesday morning when the treatment options will be discussed further, but we are sure the consultant thinks everolimus is the next step.  The one thing his wife is really worried about is the stated side effect of "severe" infections, but I guess the benefits outweigh the risks.

    Thanks again for the response - good luck on the trial (sounds like you are on the real thing to me as well!).  I will look out for the combined drug studies you mention.

    best wishes

    CJ

  • todd121
    todd121 Member Posts: 1,448 Member
    #6
    cdjr said:

    Everolimus

    Hi Todd,

    Thanks for that, it is really helpful to know.  I dont think they did "unblind" the trial, as soon as the nodules appeared on the lungs all paperwork was handed back by the hospital.  However, I think the trial was for a different drug not actually sutent.  I recall the consultant saying he would not put him on the drug he was on for the trial for but would put him on sutent.  We realised afterwards this was probably because if he had not been recieving the placebo but was on the trial drug, the consultant had realised that it had not worked for him.

    I am going back to the consultant with him next Wednesday morning when the treatment options will be discussed further, but we are sure the consultant thinks everolimus is the next step.  The one thing his wife is really worried about is the stated side effect of "severe" infections, but I guess the benefits outweigh the risks.

    Thanks again for the response - good luck on the trial (sounds like you are on the real thing to me as well!).  I will look out for the combined drug studies you mention.

    best wishes

    CJ

    Severe Infections Side Effect

    I was also very concerned about that. However, they will monitor the blood tests and that will give you an indication of the risk. For me, my blood tests have been normal so far and my doctor said that means my risk has not been increased. Decreased white counts, platelet counts, etc., would show up on the blood tests if it was an issue. So the good news is you might know how careful you need to be based on the blood work. My doctor indicated that the risks of that on this chemo drug are much less even in the worst case than other chemo drugs for other cancers.

    They should have unblinded the study to find out what had no effect, in order to make informed decisions about what drug to give next. My doctor told me that you have to apply to the trial board and sometimes they approve the request and sometimes they don't. Still I would want to know what I was on if possible. Doesn't hurt to ask.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    #7
    cdjr said:

    Everolimus

    Hi Todd,

    Thanks for that, it is really helpful to know.  I dont think they did "unblind" the trial, as soon as the nodules appeared on the lungs all paperwork was handed back by the hospital.  However, I think the trial was for a different drug not actually sutent.  I recall the consultant saying he would not put him on the drug he was on for the trial for but would put him on sutent.  We realised afterwards this was probably because if he had not been recieving the placebo but was on the trial drug, the consultant had realised that it had not worked for him.

    I am going back to the consultant with him next Wednesday morning when the treatment options will be discussed further, but we are sure the consultant thinks everolimus is the next step.  The one thing his wife is really worried about is the stated side effect of "severe" infections, but I guess the benefits outweigh the risks.

    Thanks again for the response - good luck on the trial (sounds like you are on the real thing to me as well!).  I will look out for the combined drug studies you mention.

    best wishes

    CJ

    Severe Infections Side Effect

    I was also very concerned about that. However, they will monitor the blood tests and that will give you an indication of the risk. For me, my blood tests have been normal so far and my doctor said that means my risk has not been increased. Decreased white counts, platelet counts, etc., would show up on the blood tests if it was an issue. So the good news is you might know how careful you need to be based on the blood work. My doctor indicated that the risks of that on this chemo drug are much less even in the worst case than other chemo drugs for other cancers.

    They should have unblinded the study to find out what had no effect, in order to make informed decisions about what drug to give next. My doctor told me that you have to apply to the trial board and sometimes they approve the request and sometimes they don't. Still I would want to know what I was on if possible. Doesn't hurt to ask.

    Todd

  • cdjr
    cdjr Member Posts: 10
    #8
    todd121 said:

    Severe Infections Side Effect

    I was also very concerned about that. However, they will monitor the blood tests and that will give you an indication of the risk. For me, my blood tests have been normal so far and my doctor said that means my risk has not been increased. Decreased white counts, platelet counts, etc., would show up on the blood tests if it was an issue. So the good news is you might know how careful you need to be based on the blood work. My doctor indicated that the risks of that on this chemo drug are much less even in the worst case than other chemo drugs for other cancers.

    They should have unblinded the study to find out what had no effect, in order to make informed decisions about what drug to give next. My doctor told me that you have to apply to the trial board and sometimes they approve the request and sometimes they don't. Still I would want to know what I was on if possible. Doesn't hurt to ask.

    Todd

    severe infections side effects

    Hi Todd,

     

    Thank you so much for that update, it helps to understand that they will monitor things with blood tests, this site is so great for getting understanding of what to ask and what to expect, so thank you.  I will ask these questions at my appointment with my brother on Wednesday.

    Here in the UK I dont think we can ask them to "unblind" a study but I will certainly check.

    best wishes

     

    CJ

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #9
    cdjr said:

    severe infections side effects

    Hi Todd,

     

    Thank you so much for that update, it helps to understand that they will monitor things with blood tests, this site is so great for getting understanding of what to ask and what to expect, so thank you.  I will ask these questions at my appointment with my brother on Wednesday.

    Here in the UK I dont think we can ask them to "unblind" a study but I will certainly check.

    best wishes

     

    CJ

     

    Blood tests...
    For me, they do a full blood work up every 6 weeks. Everolimus can affect kidney function, platelets and the immune system and I seem to remember it can affect red blood count as well, so I'm pretty sure it will need to be monitored regularly. I think this would be done even if I wasn't in the study, but check with your doctor. I would monitor blood pressure regularly too at home. The VEFG/TKI drugs can cause high blood pressure (I don't remember if everolimus can do that), but it would be a good idea to keep an eye on it.

    Todd
  • cdjr
    cdjr Member Posts: 10
    #10
    todd121 said:

    Blood tests...
    For me, they do a full blood work up every 6 weeks. Everolimus can affect kidney function, platelets and the immune system and I seem to remember it can affect red blood count as well, so I'm pretty sure it will need to be monitored regularly. I think this would be done even if I wasn't in the study, but check with your doctor. I would monitor blood pressure regularly too at home. The VEFG/TKI drugs can cause high blood pressure (I don't remember if everolimus can do that), but it would be a good idea to keep an eye on it.

    Todd

    Everolimus

     

    Hi Todd

    Yes from my reading of the treatment it is the effect on the white blood count which causes risk of infections and the effect on the red blood count which can cause high blood pressure, so a real balancing act!

    It is great that there now seems to be real options for treatment and a very positive prognosis for a cancer that was traditionally one of the hardest treat.  The dilema is choosing what to go for, because it is all so new.  With other cancers, the road is fairly clear on treatment options. I just look at my 6 foot 2 rugby playing brother, who still goes to the gym every day and appears to be fully fit, and wonder how we decide which of these experimental treatments are the right ones to choose.

    Our consultant is very respected world wide, so lets just hope we are on the right path.

    best wishes

     

    CJ

     

     

  • todd121
    todd121 Member Posts: 1,448 Member
    #11
    cdjr said:

    Everolimus

     

    Hi Todd

    Yes from my reading of the treatment it is the effect on the white blood count which causes risk of infections and the effect on the red blood count which can cause high blood pressure, so a real balancing act!

    It is great that there now seems to be real options for treatment and a very positive prognosis for a cancer that was traditionally one of the hardest treat.  The dilema is choosing what to go for, because it is all so new.  With other cancers, the road is fairly clear on treatment options. I just look at my 6 foot 2 rugby playing brother, who still goes to the gym every day and appears to be fully fit, and wonder how we decide which of these experimental treatments are the right ones to choose.

    Our consultant is very respected world wide, so lets just hope we are on the right path.

    best wishes

     

    CJ

     

     

    Great news

    Sounds as if you're in good hands. Keep us posted.

    Best to both of you. Tell him I said he's lucky to have such a caring sister. (If you want, you can save that until you're having an argument...)

    Todd

    P.S. Just read back through the posts and realized I'm not so clear you're his sister or brother, but either way he has a caring sibling...

  • cdjr
    cdjr Member Posts: 10
    #12
    todd121 said:

    Great news

    Sounds as if you're in good hands. Keep us posted.

    Best to both of you. Tell him I said he's lucky to have such a caring sister. (If you want, you can save that until you're having an argument...)

    Todd

    P.S. Just read back through the posts and realized I'm not so clear you're his sister or brother, but either way he has a caring sibling...

    keeping positive

    Thanks Todd,

     

    I am his younger (emphasise younger) sister.  We are a very close family and are there for each other every step of the way.  My brother accepts everything he is told, which is why his operation to remove the tumour and his kidney was delayed twice.  I challenge everything, which until his illness he hated.  However, he now wants me at every appointment and in between I research as much as possible.  His wife is an amazing and lovely lady and between us we try to support, nag and push things forward.

    This site is very inspirational and informative and I am very grateful to have found it.

    It is nearly 1:00am here in the UK so I am signing out now and off to bed.

    will update how we get on.

     

    Best wishes

     

    CJ

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