Update after Chucks 4 week scans(HD IL2 treatment)

AprilandChuck
AprilandChuck Member Posts: 110
in Kidney Cancer #1

Recap... Chuck has Stage 4 Renal Cell Carcinoma with Rhabdoid features(They removed his right Kidney in July).. that matastisized to his Liver and Lungs.. the lungs were just assumed to be cancer no Biopsy was done on them...In November they scanned him and found the Liver Tumor and did a biopsy... In Jan he started HD IL2 treatments and his second round happened at the Beginning of Feb..March 5th he was rescanned and we were given the results

The Liver Tumor responded to IL2 and it appears to have been killed.. there is a spot there that is dead cells they say his body will absorb those...and the liver should heal in the affected area... the spots in his lungs continued to grow..so they call that a mixed result.. not NEW spots developed during treatment which was positive news.. but they do not want to continue with IL2 because they are not sure why the spots in his lungs were still active with the drug... so now we are looking into getting involved in a Phase One trial of a new combo of drugs.. we will find out next Thursday if he qualifies for the trial...they think he will..our other options are drugs to try and supress the growth..the trial does not prohibit him from receieving drugs like Sunitinib(Sutent) after it is over..It took a few days for us to rap our head around the news... we really felt the IL2 was working and we were paritally right.. we were not sure how to take such mixed news.. Since HD IL2 is one of the only known things to put Kidney Cancer into remission we are scared...But after some rest and talking we are Hopeful :D and he still has a good positive attitude... it was a little supressed for a few days but bounced back full force today!! Optimism gets tough sometimes but we are optimistic people.. and like he tells people... we burried a Daughter(she died in a car accident) we had no control over that(it was devastating) and could not fight it.. but this we can fight!! And I always tell people its like Dori in Finding Nemo says.."Just Keep Swimming" that's all any of us can do!

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    HD IL2 results

    There seems to be steadily accumulating evidence that even when those administering IL2 think it has had little or no effect, it can have enduring benefit for a long while afterwards and, probably for that reason, it seems to increase the response to subsequent agents.

    So, if Chuck is taken off IL2 and goes on a trial, or another drug, he has every chance of good response.  Please let us know what drugs are involved in the envisaged trial and whether he qualifies on Thursday.  Meanwhile keep right on 'swimming'!

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #3
    Texas_wedge said:

    HD IL2 results

    There seems to be steadily accumulating evidence that even when those administering IL2 think it has had little or no effect, it can have enduring benefit for a long while afterwards and, probably for that reason, it seems to increase the response to subsequent agents.

    So, if Chuck is taken off IL2 and goes on a trial, or another drug, he has every chance of good response.  Please let us know what drugs are involved in the envisaged trial and whether he qualifies on Thursday.  Meanwhile keep right on 'swimming'!

    Drugs Involved..

    Our Doctors give detailed explanations in writing usually him writing as he talks to show us.. and me taking notes.. but this last appointment was rough so I have his notes for me.. but mine are not as complete as usual.. the other options he gave were ones I had already researched in prep for the appointment even though we felt the IL2 was working.. I like to cover our bases...his handwriting is well a doctors :D What I can make out and sounds right is Anti PDI+IPI.. the Other Anti PDI combination options are not on the table for him since he already had the HD IL2... I had read that HD IL2 seems to continue to be effective even after it had been stopped...so was very relieved when one of the first things he said was a growing body of evidence is that IL2 continues to work after its stopped...and in a patient who recieved HD IL2 as a first line the other Drugs effectivness "seems" to be boosted..nothing conclusive there yet.. but I like our doctors cautious in what they say.. I also checked our Doctors out at Cancer.Gov (I called them) and encourage anyone who is diagnosed with esp Kidney Cancer(because there is so little really out there about it) to do the same..I did not give our Doctors name.. she asked me because of the area we live in if we were seeing Dr. Amin.. when I replied yes he is one of them.. the woman on the phone was very praising of him and his work.... prior to that call we heard he was one of the best.. so it was just reassurance...One thing we have learned and can be somewhat confusing.. is that Stage 4 Kidney Cancer(Metastatic Kidney Disease) is treated a lot like Advanced Melanoma...Plus our Doctors encourage second opinions some do not.. we have not decided on that yet.. but they are willing to make sure we have anything we need if we go that route.... We are very comfortable that they seem to be giving all our options to us+some...This site has been a God send for me.. even if I am not posting I am usually lurking :D but I am going to try and get better about the posting.. we all need all the support we can get!!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    AprilandChuck said:

    Drugs Involved..

    Our Doctors give detailed explanations in writing usually him writing as he talks to show us.. and me taking notes.. but this last appointment was rough so I have his notes for me.. but mine are not as complete as usual.. the other options he gave were ones I had already researched in prep for the appointment even though we felt the IL2 was working.. I like to cover our bases...his handwriting is well a doctors :D What I can make out and sounds right is Anti PDI+IPI.. the Other Anti PDI combination options are not on the table for him since he already had the HD IL2... I had read that HD IL2 seems to continue to be effective even after it had been stopped...so was very relieved when one of the first things he said was a growing body of evidence is that IL2 continues to work after its stopped...and in a patient who recieved HD IL2 as a first line the other Drugs effectivness "seems" to be boosted..nothing conclusive there yet.. but I like our doctors cautious in what they say.. I also checked our Doctors out at Cancer.Gov (I called them) and encourage anyone who is diagnosed with esp Kidney Cancer(because there is so little really out there about it) to do the same..I did not give our Doctors name.. she asked me because of the area we live in if we were seeing Dr. Amin.. when I replied yes he is one of them.. the woman on the phone was very praising of him and his work.... prior to that call we heard he was one of the best.. so it was just reassurance...One thing we have learned and can be somewhat confusing.. is that Stage 4 Kidney Cancer(Metastatic Kidney Disease) is treated a lot like Advanced Melanoma...Plus our Doctors encourage second opinions some do not.. we have not decided on that yet.. but they are willing to make sure we have anything we need if we go that route.... We are very comfortable that they seem to be giving all our options to us+some...This site has been a God send for me.. even if I am not posting I am usually lurking :D but I am going to try and get better about the posting.. we all need all the support we can get!!

    Drugs involved in prospective trial

    An anti-PD1 trial of any kind sounds like an excellent follow-up to the HD IL2 Chuck has had. I'm glad to see that your doc's views endorse what I said about persisting benefits from IL2.

    There has long been found to be a relationship of some closeness between malignant melanoma and RCC and some cross-overs in appropriate treatment.  This can currently be seen in the trials of nivolumab (the highly successful anti-PD1 that Chuck may be on soon) for melanoma, after its much heralded promise with RCC and the corollary - the trials of ipilimumab for RCC following its great promise in treating metastatic melanoma.

    In this regard, we gain from the pioneering work in the bigger cancers and they can gain from the wealth of innovation elicited by the trickiness of RCC, generating approaches that may have a much wider application than in the relatively uncommon RCC.

    You may have more to share with us and more questions to ask soon, so please do come out from lurking and pitch in with more postings.

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