Correlation between side effects and effectiveness
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Correlation between side effects and effectiveness

› Forums › Cutaneous Melanoma Community › Correlation between side effects and effectiveness

  • Post
    • August 13, 2015 at 7:08 pm
    Polymath
    Participant

    I don't recall this topic coming up and have always had my suspicions.  Like Artie, I had every side-effect possible in the extreme when on my first drug therapy Zelboraf.  It was a horrendous experience but my goodness, was it effective.  My tumors, several subcutaneous seemed to melt away in what was days, not weeks.  But after progressing in just three months, Taf/mek combo, then Yervoy, then Keytruda all were easy to tolerate, and (lucky me) had few if any side-effects at all.  But all these were completely ineffective (unlucky me), and now I'm in a clinical trial having exhausted all FDA approved (insurance covered) treatments.

    Has anyone else noticed a correlation between side effects, and the effectiveness of treatment or is my case seem unique?

Viewing 8 reply threads
  • Replies
      • August 13, 2015 at 8:06 pm
      Bubbles
      Participant

      Who responds to what treatment is something researchers have been looking at a lot over the past year.

      Here is link to a post about an article published in July linking itching and vitiligo to PFS with Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

      I posted this in June from a report about lab values that may predict a response to ipi/yervoy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/lab-values-that-may-predict-response-to.html

      This was out of ASCO this year in which it was noted that increased eosinophils may be a predictor of success in anti-PD1, both Nivo/opdivo and Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-eosinophilia-with-nivo-and.html

      And finally, ironically, I put this post out today…A report looking at factors leading to OS and PFS with BRAFi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/being-female-with-low-ldh-no-ulceration.html

      I think researchers are just beginning to figure all this out.  But, as more folks take these meds we will learn even more.  Looking forward to the day when a few simple tests can determine rapidly and clearly what treatment will be effective for which melanoma patient!!

      Best, Celeste

        • August 13, 2015 at 10:02 pm
        Jubes
        Participant

        Hi celeste, that's very interesting re AEC counts. The fact that AEC counts are also high in ppl with rheumatoid arthritis makes me feel better about sticking out the pain for a few more months on keytruda! 

        • August 13, 2015 at 10:02 pm
        Jubes
        Participant

        Hi celeste, that's very interesting re AEC counts. The fact that AEC counts are also high in ppl with rheumatoid arthritis makes me feel better about sticking out the pain for a few more months on keytruda! 

        • August 13, 2015 at 10:02 pm
        Jubes
        Participant

        Hi celeste, that's very interesting re AEC counts. The fact that AEC counts are also high in ppl with rheumatoid arthritis makes me feel better about sticking out the pain for a few more months on keytruda! 

        • August 13, 2015 at 11:17 pm
        Polymath
        Participant

        As always, Thanks Celeste for providing info for us all to glean.  In the end though, it still seems that some people respond, and others don't.  For me they could pump this stuff in me and afterwards I'd jump out of the chair, drive home and eat lunch.  I mean it was like nothing ever happened.  My blood work always remained mostly normal, and doc says the few minor exceptions were most likey caused by the drugs themselves.  Its been so frustrating to be a non-responder.  Not sure if it matter but my tumors tend to be very large.  I have several well over 10cm in size.  They are really quite stubborn. It still remains that everyone is different and you need to keep your head up, and continue trying everything until you find something that tames the beast.

        • August 14, 2015 at 12:42 pm
        Bubbles
        Participant

        You are right.  Not everyone responds and that drives me crazy!!!  If your tumors are all that large.  Are any accessible cutaneously?  Could you utilized any of the intralesional therapies?  There are quite a few of them now…. 

        This out of ASCO this year:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

        This re: Rose Bengal/PV10:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html

        Wishing you my best.  c

        • August 14, 2015 at 12:42 pm
        Bubbles
        Participant

        You are right.  Not everyone responds and that drives me crazy!!!  If your tumors are all that large.  Are any accessible cutaneously?  Could you utilized any of the intralesional therapies?  There are quite a few of them now…. 

        This out of ASCO this year:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

        This re: Rose Bengal/PV10:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html

        Wishing you my best.  c

        • August 14, 2015 at 5:28 pm
        Polymath
        Participant

        Yes, the trial I am participating in is utilizing this therapy technique.

        Aloha, Gary

        • August 14, 2015 at 5:28 pm
        Polymath
        Participant

        Yes, the trial I am participating in is utilizing this therapy technique.

        Aloha, Gary

        • August 14, 2015 at 5:28 pm
        Polymath
        Participant

        Yes, the trial I am participating in is utilizing this therapy technique.

        Aloha, Gary

        • August 14, 2015 at 12:42 pm
        Bubbles
        Participant

        You are right.  Not everyone responds and that drives me crazy!!!  If your tumors are all that large.  Are any accessible cutaneously?  Could you utilized any of the intralesional therapies?  There are quite a few of them now…. 

        This out of ASCO this year:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/05/asco-2015-intralesional-therapy-for.html

        This re: Rose Bengal/PV10:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/05/more-info-from-ascopv10rose-bengal-for.html

        Wishing you my best.  c

        • August 14, 2015 at 9:20 pm
        Jubes
        Participant

        Hi gary

        I had one big lung met (8 cm) and a few small in chest nodes, but keytruda has been effective in getting rid of small and significantly reducing the large. So not sure if size matters…

        anne-Louise 

        • August 14, 2015 at 9:20 pm
        Jubes
        Participant

        Hi gary

        I had one big lung met (8 cm) and a few small in chest nodes, but keytruda has been effective in getting rid of small and significantly reducing the large. So not sure if size matters…

        anne-Louise 

        • August 14, 2015 at 9:20 pm
        Jubes
        Participant

        Hi gary

        I had one big lung met (8 cm) and a few small in chest nodes, but keytruda has been effective in getting rid of small and significantly reducing the large. So not sure if size matters…

        anne-Louise 

        • August 13, 2015 at 11:17 pm
        Polymath
        Participant

        As always, Thanks Celeste for providing info for us all to glean.  In the end though, it still seems that some people respond, and others don't.  For me they could pump this stuff in me and afterwards I'd jump out of the chair, drive home and eat lunch.  I mean it was like nothing ever happened.  My blood work always remained mostly normal, and doc says the few minor exceptions were most likey caused by the drugs themselves.  Its been so frustrating to be a non-responder.  Not sure if it matter but my tumors tend to be very large.  I have several well over 10cm in size.  They are really quite stubborn. It still remains that everyone is different and you need to keep your head up, and continue trying everything until you find something that tames the beast.

        • August 13, 2015 at 11:17 pm
        Polymath
        Participant

        As always, Thanks Celeste for providing info for us all to glean.  In the end though, it still seems that some people respond, and others don't.  For me they could pump this stuff in me and afterwards I'd jump out of the chair, drive home and eat lunch.  I mean it was like nothing ever happened.  My blood work always remained mostly normal, and doc says the few minor exceptions were most likey caused by the drugs themselves.  Its been so frustrating to be a non-responder.  Not sure if it matter but my tumors tend to be very large.  I have several well over 10cm in size.  They are really quite stubborn. It still remains that everyone is different and you need to keep your head up, and continue trying everything until you find something that tames the beast.

      • August 13, 2015 at 8:06 pm
      Bubbles
      Participant

      Who responds to what treatment is something researchers have been looking at a lot over the past year.

      Here is link to a post about an article published in July linking itching and vitiligo to PFS with Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

      I posted this in June from a report about lab values that may predict a response to ipi/yervoy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/lab-values-that-may-predict-response-to.html

      This was out of ASCO this year in which it was noted that increased eosinophils may be a predictor of success in anti-PD1, both Nivo/opdivo and Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-eosinophilia-with-nivo-and.html

      And finally, ironically, I put this post out today…A report looking at factors leading to OS and PFS with BRAFi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/being-female-with-low-ldh-no-ulceration.html

      I think researchers are just beginning to figure all this out.  But, as more folks take these meds we will learn even more.  Looking forward to the day when a few simple tests can determine rapidly and clearly what treatment will be effective for which melanoma patient!!

      Best, Celeste

      • August 13, 2015 at 8:06 pm
      Bubbles
      Participant

      Who responds to what treatment is something researchers have been looking at a lot over the past year.

      Here is link to a post about an article published in July linking itching and vitiligo to PFS with Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/itching-and-vitiligo-associated-with.html

      I posted this in June from a report about lab values that may predict a response to ipi/yervoy:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/lab-values-that-may-predict-response-to.html

      This was out of ASCO this year in which it was noted that increased eosinophils may be a predictor of success in anti-PD1, both Nivo/opdivo and Pembro/Keytruda:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/asco-2015-eosinophilia-with-nivo-and.html

      And finally, ironically, I put this post out today…A report looking at factors leading to OS and PFS with BRAFi:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/08/being-female-with-low-ldh-no-ulceration.html

      I think researchers are just beginning to figure all this out.  But, as more folks take these meds we will learn even more.  Looking forward to the day when a few simple tests can determine rapidly and clearly what treatment will be effective for which melanoma patient!!

      Best, Celeste

      • August 13, 2015 at 8:08 pm
      arthurjedi007
      Participant

      Yes on zelboraf I had lots of rough side affects but unlike you it was not effective. Around 24 effects when I added them up one time. Including the Squamish skin cancer because I had a little skin of my neck showing for 30 seconds going to the car. Fortunatly none of the effects were permanent. The sun would actually hurt even through the hospital windows even with my sun cloths. That lasted about 2 months after stopping the med. The solid rash from neck to ankles. very crazy stuff but everything just kept growing.

      ipi was mild effects but some stuff grew like crazy. Yes that was the doc words. Everything else kept growing and new stuff.

      The taf Mek was somewhat mild but more than ipi. The worse was the 103 fevers pretty much twice every day. At least with that most things stayed the same but the stuff that grew crazy kept growing plus new stuff near there showed up.

      keytruda other than the first 10 days was almost nothing. Occasional minor fever. It was the most effective too. First scan had 18 of 30 that shrank. The rest either stayed same or grew. Took the 11 month scan to see the first new tumor while on It. Then I think of Eva who was a complete responder and if I remember right she had pretty much no side affects.

      So I dunno. I do know my NIH doc said when we have the flu it isn't the flu that makes us feel bad. It's our immune system giving off the tcells to fight the flu that makes us feel bad. I never knew that before last week.

      Artie

        • August 14, 2015 at 5:30 pm
        Polymath
        Participant

        Thanks Artie, we are all rooting for you as you inspire everyone on this board to keep up the good fight.

        I had suspected that there was a "no pain, no gain" aspect but like everything, I guess its not that simple.

        Aloha, Gary

        • August 14, 2015 at 5:30 pm
        Polymath
        Participant

        Thanks Artie, we are all rooting for you as you inspire everyone on this board to keep up the good fight.

        I had suspected that there was a "no pain, no gain" aspect but like everything, I guess its not that simple.

        Aloha, Gary

        • August 14, 2015 at 5:30 pm
        Polymath
        Participant

        Thanks Artie, we are all rooting for you as you inspire everyone on this board to keep up the good fight.

        I had suspected that there was a "no pain, no gain" aspect but like everything, I guess its not that simple.

        Aloha, Gary

      • August 13, 2015 at 8:08 pm
      arthurjedi007
      Participant

      Yes on zelboraf I had lots of rough side affects but unlike you it was not effective. Around 24 effects when I added them up one time. Including the Squamish skin cancer because I had a little skin of my neck showing for 30 seconds going to the car. Fortunatly none of the effects were permanent. The sun would actually hurt even through the hospital windows even with my sun cloths. That lasted about 2 months after stopping the med. The solid rash from neck to ankles. very crazy stuff but everything just kept growing.

      ipi was mild effects but some stuff grew like crazy. Yes that was the doc words. Everything else kept growing and new stuff.

      The taf Mek was somewhat mild but more than ipi. The worse was the 103 fevers pretty much twice every day. At least with that most things stayed the same but the stuff that grew crazy kept growing plus new stuff near there showed up.

      keytruda other than the first 10 days was almost nothing. Occasional minor fever. It was the most effective too. First scan had 18 of 30 that shrank. The rest either stayed same or grew. Took the 11 month scan to see the first new tumor while on It. Then I think of Eva who was a complete responder and if I remember right she had pretty much no side affects.

      So I dunno. I do know my NIH doc said when we have the flu it isn't the flu that makes us feel bad. It's our immune system giving off the tcells to fight the flu that makes us feel bad. I never knew that before last week.

      Artie

      • August 13, 2015 at 8:08 pm
      arthurjedi007
      Participant

      Yes on zelboraf I had lots of rough side affects but unlike you it was not effective. Around 24 effects when I added them up one time. Including the Squamish skin cancer because I had a little skin of my neck showing for 30 seconds going to the car. Fortunatly none of the effects were permanent. The sun would actually hurt even through the hospital windows even with my sun cloths. That lasted about 2 months after stopping the med. The solid rash from neck to ankles. very crazy stuff but everything just kept growing.

      ipi was mild effects but some stuff grew like crazy. Yes that was the doc words. Everything else kept growing and new stuff.

      The taf Mek was somewhat mild but more than ipi. The worse was the 103 fevers pretty much twice every day. At least with that most things stayed the same but the stuff that grew crazy kept growing plus new stuff near there showed up.

      keytruda other than the first 10 days was almost nothing. Occasional minor fever. It was the most effective too. First scan had 18 of 30 that shrank. The rest either stayed same or grew. Took the 11 month scan to see the first new tumor while on It. Then I think of Eva who was a complete responder and if I remember right she had pretty much no side affects.

      So I dunno. I do know my NIH doc said when we have the flu it isn't the flu that makes us feel bad. It's our immune system giving off the tcells to fight the flu that makes us feel bad. I never knew that before last week.

      Artie

      • August 15, 2015 at 8:49 pm
      dfeng
      Participant

      It is very hard to say how much the responding is related to the side effect.

      From my understanding, the immunetherpy will stimulate your immune system so that the cancer cells are attacked. The side effect shows that your immune system is kicked, but how much effectiveness do the crazy immune cells attack the cancer cell, hard to say.

      For old time chemo, which upset people a lot due to its toxicity, will always impact as side effect, but how does it response?

      • August 15, 2015 at 8:49 pm
      dfeng
      Participant

      It is very hard to say how much the responding is related to the side effect.

      From my understanding, the immunetherpy will stimulate your immune system so that the cancer cells are attacked. The side effect shows that your immune system is kicked, but how much effectiveness do the crazy immune cells attack the cancer cell, hard to say.

      For old time chemo, which upset people a lot due to its toxicity, will always impact as side effect, but how does it response?

      • August 15, 2015 at 8:49 pm
      dfeng
      Participant

      It is very hard to say how much the responding is related to the side effect.

      From my understanding, the immunetherpy will stimulate your immune system so that the cancer cells are attacked. The side effect shows that your immune system is kicked, but how much effectiveness do the crazy immune cells attack the cancer cell, hard to say.

      For old time chemo, which upset people a lot due to its toxicity, will always impact as side effect, but how does it response?

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