Long term remission only for those who undergone IL-2

vccortes713
vccortes713 Member Posts: 51
in Kidney Cancer #1

As a new member here I notice that only those people like Foxhd and Ron who are lucky to have undergone Il-2 are the ones who had a long term remission? How about people who only relies on Sutent? Does anybody have long term remission on Sutent alone? and for how long it has been? I've been on Sutent for 11 months now. Thanks and hoping for your replies as I'm loosing hope because I'm having very hard time tolerating the side effect of Sutent....I feel extreme fatigue, I feel likr I'm dying every seconds of the day........

Comments

  • alice124
    alice124 Member Posts: 896 Member
    #2
    My husband, John (one putt)

    My husband, John (one putt) has never been on Sutent; so I can't comment on his experience. I know there are several here who have been and will speak up. 

    I do recall,however, that when John was first diagnosed, Dr. Hammers reviewed with him several possible courses of action--Sutent, IL2, etc. At that time, he did talk of one patient who had been on Sutent for 12(?) years and counting with no progression.  John ended up taking the IL-2 option which didn't work for him.

    Unfortunately, as far as the fatigue, I think that's true to some degrees for most taking chemo drugs. I hope the fatigue improves.

     

     

     

  • foxhd
    foxhd Member Posts: 3,181 Member
    #3
    find another way to ask this

    Because I've had the Il-2 but I have only been stable since Oct'13. Not long term remission. And Ron did not have Il-2. But we do have people who have had the other drugs and have done well. So many of them have just movd on with their lives. It must really suck to feel that way. I'll bet the most common advice will be to change doctors or facilities that you get your care from. Let them re-evaluate you. Sometimes just taking a break from the drug helps a lot.

    Check firedudes latest post under the update thread.

  • vccortes713
    vccortes713 Member Posts: 51
    #4
    foxhd said:

    find another way to ask this

    Because I've had the Il-2 but I have only been stable since Oct'13. Not long term remission. And Ron did not have Il-2. But we do have people who have had the other drugs and have done well. So many of them have just movd on with their lives. It must really suck to feel that way. I'll bet the most common advice will be to change doctors or facilities that you get your care from. Let them re-evaluate you. Sometimes just taking a break from the drug helps a lot.

    Check firedudes latest post under the update thread.

    Thanks Fox and Alice. I feel

    Thanks Fox and Alice. I feel so much relief to know that there is still a little hope to live a little longer.....And I know it will be a big relief to other people to know too.....Anybody else? Please.....

  • KeepCalmAnd
    KeepCalmAnd Member Posts: 8
    #5
    First Line Treatment of Sutent

    Sutent was my first line treatment - I was on Sutent for about a year and was stable (June 2013 to June 2014).  I started on the 4 weeks on, 2 weeks off treatment regime, but switched after 2 months to a 2 week on 1 week off regime.  The reason for this was that on my 2nd two week break, i ended up in the hospital with a Plural Effusion & Pneumonia.  Bottom line is that the 2 weeks on, 1 week off regime was much more tolerable in regards to side effects.

  • Billy's Wife
    Billy's Wife Member Posts: 52
    #6
    Fox gave you very good

    Fox gave you very good advice.  I agree that you should explore other options, another doctor, a whole new evaluation, if you are feeling so badly. My husband described how he felt on sutent exactly as you did, he felt like he was dying.  Please don't wait look for help elsewhere if your doctor won't help you.  Good luck and lots of prayers going your way.

    Arleen

  • vccortes713
    vccortes713 Member Posts: 51
    #7
    Billy's Wife said:

    Fox gave you very good

    Fox gave you very good advice.  I agree that you should explore other options, another doctor, a whole new evaluation, if you are feeling so badly. My husband described how he felt on sutent exactly as you did, he felt like he was dying.  Please don't wait look for help elsewhere if your doctor won't help you.  Good luck and lots of prayers going your way.

    Arleen

    second opinion
    As much as I wanted to get a second opinion, I don't know how? Over here in Winnipeg I get my treatment, hospitalization, medicine and professional fee for free. The government pays for everything.....and it seems that there is only one centralized advanced health care facility here the  Cancer Care Manitoba....I don't have the money to go somewhere else, the disability benefits I'm receiving and my wife's meager income is just barely enough for us to sustain us with our everyday needs........My oncologist and nurse are very kind to me and I am hesitant and shy to tell them that I wanted a second opinion as I feel I may hurt their feelings and afraid I might indirectly insult their capabilities as my oncologist is one of the best here based on my own research......

     

    On the first day that they told me that there is no cure right then I wanted a second opinion. A second opinion that will tell me it's not cancer, and that it's not stage 4 - that it's only an infection - that there is a cure and I'm not dying........but then I felt that I should be thankful enough for the good health care system I am receiving....thankful that I was diagnosed with this disease here  and not while I'm still in the Philippines where by this time I'm sure I'm dead by now........I also feel that I am now a burden to society and don't have the right to ask for second opinion as I am receiving everything for free and that I may not find that second opinion here or nearby........Is there an organization out there who will be kind enough to give somebody like me the second opinion and the treatment and the associated cost for free? 

     

    If getting that second opinion means we have to sell our small house then I might not be wanting it because I can't sacrifice the only possession that I will be leaving behind to my love ones......

     

    I'm confused......
  • Darron
    Darron Member Posts: 310 Member
    #8
    Dosing?

    The two on one off program helps many people. Have you considered dropping the dose by12.5 mg?

    I started in 50 mg and dropped to 37.5 mg and it helped tremendously. I am coming up on two years this Feb. 

    I do know I a patient at our office working on 7 years. He will occasionally break his cycles for a special event. He'll take two or three weeks if for an anniversary or holiday time.

    Keep fighting and tweaking with it.

  • cubsfan9
    cubsfan9 Member Posts: 69 Member
    #9
    Sutent thoughts

    Good Morning!

    My husband has been on Sutent for 22 months.  He has had good results and is currently "stable".  Two thoughts...first, I do  not know what dosage you are on, but perhaps adjusting the dosge and/or schedule (4/2 vs 2/1) might be helpful.  It took some tinkering at first to see what my husband could tolerate.  Second, have you had your thyroid checked?  That is one of the 'warnings' from Pfizer.  Many Sutent patients find that their thyroid is "fried" and need to take synthetic hormones, which improves how they feel considerably.   Good luck to you!!

  • todd121
    todd121 Member Posts: 1,448 Member
    #10
    Sutent
    I can only say I know another patient of my oncologist who has been on this drug for many years. He might have recently switch to votrient, but I'm not sure. What I can say for sure, is he's been taking these types of drugs for many (8-10 years I think) years. I don't think it was remission, but I think the progression was arrested.

    IL-2 is a tough treatment. It kills almost as many patients as it helps. My oncologist won't give it for this reason. If you're pretty healthy otherwise, it might be worth a try. Less risk if you're otherwise healthy.

    Todd
  • Darron
    Darron Member Posts: 310 Member
    #11
    cubsfan9 said:

    Sutent thoughts

    Good Morning!

    My husband has been on Sutent for 22 months.  He has had good results and is currently "stable".  Two thoughts...first, I do  not know what dosage you are on, but perhaps adjusting the dosge and/or schedule (4/2 vs 2/1) might be helpful.  It took some tinkering at first to see what my husband could tolerate.  Second, have you had your thyroid checked?  That is one of the 'warnings' from Pfizer.  Many Sutent patients find that their thyroid is "fried" and need to take synthetic hormones, which improves how they feel considerably.   Good luck to you!!

    Forgot that

    It is true with me, not fried cometely but I started taking cynthroid for low thyroid

  • NanoSecond
    NanoSecond Member Posts: 653
    #12
    todd121 said:

    Sutent
    I can only say I know another patient of my oncologist who has been on this drug for many years. He might have recently switch to votrient, but I'm not sure. What I can say for sure, is he's been taking these types of drugs for many (8-10 years I think) years. I don't think it was remission, but I think the progression was arrested.

    IL-2 is a tough treatment. It kills almost as many patients as it helps. My oncologist won't give it for this reason. If you're pretty healthy otherwise, it might be worth a try. Less risk if you're otherwise healthy.

    Todd

    Your oncologist is mistaken

    Todd.  20+ years ago, when HD-IL2 was first introduced and was little understood there was indeed a small fatality rate.  But that is no longer the case (unless you or your oncologist can cite some recent study that contradicts this). 

    One way the fatality rate was eliminated was by screening all potential candidates for certain health parameters.  This is definitely not a therapy for those who already are frail or subject to heart issues, for example.  Another way was to make sure that the therapy was only administered in an intensive-care environment.

    Also, it is now understood that it really does not work on non-clear cell histologies.  But for clear-cell the CR (complete response) rate is only about 7%.

  • todd121
    todd121 Member Posts: 1,448 Member
    #13
    NanoSecond said:

    Your oncologist is mistaken

    Todd.  20+ years ago, when HD-IL2 was first introduced and was little understood there was indeed a small fatality rate.  But that is no longer the case (unless you or your oncologist can cite some recent study that contradicts this). 

    One way the fatality rate was eliminated was by screening all potential candidates for certain health parameters.  This is definitely not a therapy for those who already are frail or subject to heart issues, for example.  Another way was to make sure that the therapy was only administered in an intensive-care environment.

    Also, it is now understood that it really does not work on non-clear cell histologies.  But for clear-cell the CR (complete response) rate is only about 7%.

    Fatality Rate

    Hi Neil.

    He's very anti-IL2 and he may be purposely quoting those old fatality rates to support his case. It's a great question. I'll ask him the next time I see him if those rates he quotes are recent data.

    He very well may be pulling up that old data to support his decision. If I needed that drug, I'd go somewhere else for another opinion for sure. His opinion is very clear that the low response rate does not warrant the risk of how toxic the drug is (probabaly a reasonable decision if you're the one taking the risk to administer the drug). On the other hand, he's not the one suffering the alternative when no other approach is working.

    I'm sure he knows the stats. He's brilliant.

    It could also be that his facility doesn't offer this treatment (for whatever reason) and he's justifying that. I really doubt he'd admit that to me.

    Do you know what the fatality rate is right now? I've seen a presentation he's presented where he claimed the fatality rate was in the 3-5% range (almost the same as the cure rate).

    Todd

     

  • NanoSecond
    NanoSecond Member Posts: 653
    #14
    todd121 said:

    Fatality Rate

    Hi Neil.

    He's very anti-IL2 and he may be purposely quoting those old fatality rates to support his case. It's a great question. I'll ask him the next time I see him if those rates he quotes are recent data.

    He very well may be pulling up that old data to support his decision. If I needed that drug, I'd go somewhere else for another opinion for sure. His opinion is very clear that the low response rate does not warrant the risk of how toxic the drug is (probabaly a reasonable decision if you're the one taking the risk to administer the drug). On the other hand, he's not the one suffering the alternative when no other approach is working.

    I'm sure he knows the stats. He's brilliant.

    It could also be that his facility doesn't offer this treatment (for whatever reason) and he's justifying that. I really doubt he'd admit that to me.

    Do you know what the fatality rate is right now? I've seen a presentation he's presented where he claimed the fatality rate was in the 3-5% range (almost the same as the cure rate).

    Todd

     

    No fatalities

    My impression is that there have not been any fatalities for many years now.  That is why I am curious to see the actual data (published research) that your oncologist might be referring to.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    NanoSecond said:

    No fatalities

    My impression is that there have not been any fatalities for many years now.  That is why I am curious to see the actual data (published research) that your oncologist might be referring to.

    risk/reward

    Todd you may very well be right that your doctors facilities don't offer Il-2 so they promote what they do provide. I felt that way when I was going through oncologists in my beginning. Neil, I think you are right also about no fatalities. The screening process is improved for one thing. I think my doctor and I talked about risks and that I remember.

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