6 weeks scan results... Chuck is involved in the Anti PD1-IPI trail GOOD NEWS :D

AprilandChuck
AprilandChuck Member Posts: 110

Chucks scan result were read to me over the phone this morning...He had his 3rd infusion of the combo of drugs Tuesday and scans Thursday.. Some of the Tumors in his Lungs are completely gone or have resolved as they say... the other have had significant shrinkage...His liver Tumor has shrunk by OVER half... the lymphnodes they have been watching are stable or have returned to normal...I cried(from happiness) but am cautiously optimistic.. this journey we are on is a rollar coaster not a flat road!! But over all today is an amazing day :D Hope is such a Beautiful Word.. Have a Wonderful Day Everyone!! Hugggssss

Comments

  • garym
    garym Member Posts: 1,647
    FANTASTIC!!!

    That is wonderful news, jump on the wagon with fox and one putt, lets grind RCC into the dust.

    Very happy for you guys,

    Gary

  • MDCinSC
    MDCinSC Member Posts: 574
    That is marvelous news!

    All the best to you guys!  Celebrate (gently)!

     

    Well said Gary!  I'm with you all the way on that!

  • AprilandChuck
    AprilandChuck Member Posts: 110
    MDCinSC said:

    That is marvelous news!

    All the best to you guys!  Celebrate (gently)!

     

    Well said Gary!  I'm with you all the way on that!

    Hopeful

    Our biggest hope is that this drug is approved quickly so more people have access to the hope it can offer...it's terrible to know that something so promising is out there but the access is limited...I have been trying to learn patience my whole life.. this exp.. has made us have to get some fast....but some days.. it wanes.. we are happy it appears to be working and sad at the same time... that others have not had this chance YET....but its coming for everyone we believe that!! Have A Wonderful Day!! Hugggssss

  • alice124
    alice124 Member Posts: 896 Member
    YES YES YES YES!!!!

    Your post has me typing this response through tear filled eyes! I am so happy for both of you.  Let's keep the good news coming. . .

  • Galrim
    Galrim Member Posts: 307
    So happy to read your update :-)

    I dont have to wish a wonderfull weekend, Im sure you will have one :-)

    /G

  • foxhd
    foxhd Member Posts: 3,181
    Galrim said:

    So happy to read your update :-)

    I dont have to wish a wonderfull weekend, Im sure you will have one :-)

    /G

    A+C

    I remember when they told me of my positive response, so I think I know how you feel. AWESOME!!!!!!!!! I hope the side effects are manageable. After awhile, they become normal too. WAY TO GO!

  • Limelife50
    Limelife50 Member Posts: 476
    WOW!!!

    Great response and a big cyber hug to the both of you!!!

  • I am alive
    I am alive Member Posts: 315
    High five!

    I am thrilled for you.

  • srdowney51
    srdowney51 Member Posts: 1
    anti pd1/ipi

    Hello, 

    I saw your comment about your husband.  Very pleased for you and your husband.  My husband has rcc and has been offered a spot for clinical trial for anti pd1/ipi.  Your comment didn't mention the type cancer your husband.  But, I was hoping you could tell me a little about the drug.  How long the cycles are and the side effects.  I would appreciatie any info. 

    Thanks,

    Gwyn,

    Wishing you continue good news. 

     

  • AprilandChuck
    AprilandChuck Member Posts: 110

    anti pd1/ipi

    Hello, 

    I saw your comment about your husband.  Very pleased for you and your husband.  My husband has rcc and has been offered a spot for clinical trial for anti pd1/ipi.  Your comment didn't mention the type cancer your husband.  But, I was hoping you could tell me a little about the drug.  How long the cycles are and the side effects.  I would appreciatie any info. 

    Thanks,

    Gwyn,

    Wishing you continue good news. 

     

    He has Clear Cell with

    He has Clear Cell with Rhabdoid features.. the Center of his intial Tumor was Clear Cell.... 4 centimeters of it around the edges had Rhadoid features..his orig Tumor was 8.3 CM at it widest point.. 4.6x4.2 at its smallest margins.. his Cancer Metastasized to his lungs and liver..he underwent HD IL2 and at first had a partial response which was later changed to no sustained reponse...The Doctor should give you a booklet to go over...that will give way more detailed info than I would be able to provide here... Chuck will get a total of 4 infusions of Both Anti PD1 and IPI over 2 cycles.. he is in his second cycle now and has one more infusion of the drug combo then he will go to maintenance..Chuck recieves his infusion of the Combo every 3 weeks.. when he moves into Maintenance.. he will recieve infusions of Anti PD 1 every 2 weeks...I know there are several arms of a this Study and several other studies looking into the effects of  Combinations of drugs... one of which being Anti PD1..the other being one of several...and in this Paticular trial I know there are different dosage of the drugs for example.. I met someone via another site whose Husband is in the same trial but he recieves 1 Anti PD1 and 3 IPI Chuck recieves the reverse 3 Anti PD1 1 IPI... if Anti PD 1 is being offered to your Husband in any form or amount.. I would really really get into the trial if possible...the Side affects so far have been managable...What type of RCC does your husband have?? where is he being treated? has it metastasized? Best of Luck Hugggss 

  • Mikeyswife
    Mikeyswife Member Posts: 31
    Very Happy to Hear Good Results

    Hi April,

    Oh April I am so glad to hear the good results Chuck is having.  Hope is a beautiful word!  Mike is on his second round of Sutent and I am hoping it will work until we can get him on this trial.  Won't know until June 26th.  His tumor caused  a pulmonary embolism so he is ineligible for at least six months. 

    Hoping and praying the good results continue to get even better!

    Karen

  • mrs_blkjak
    mrs_blkjak Member Posts: 103
    I'm happy that he is

    I'm happy that he is responding well! 

  • danbren2
    danbren2 Member Posts: 311
    GREAT NEWS!

    That is terrific news! God Bless!!

  • angec
    angec Member Posts: 924

    Hopeful

    Our biggest hope is that this drug is approved quickly so more people have access to the hope it can offer...it's terrible to know that something so promising is out there but the access is limited...I have been trying to learn patience my whole life.. this exp.. has made us have to get some fast....but some days.. it wanes.. we are happy it appears to be working and sad at the same time... that others have not had this chance YET....but its coming for everyone we believe that!! Have A Wonderful Day!! Hugggssss

    Great News!

    April and Chuck!  AWESOME news! I have not read your story but have been hearing about it. I was too wrapped up in worry over mom and got to a point where i could not read anymore! However, i did offer up prayers on your behalf!  What drug is Chuck on and when will it be availble? I know you are breathing a sigh of relief!  Give each other a massive hug and take a nice vacation!  ;)  much love to you!

  • GSRon
    GSRon Member Posts: 1,303
    danbren2 said:

    GREAT NEWS!

    That is terrific news! God Bless!!

    Famdamtastic..!

    Great news.. love hearing the good results..  and in this case you are pioneers.. paving the road for many of us to follow..!

    Be Well..

    Ron

  • Darron
    Darron Member Posts: 310

    anti pd1/ipi

    Hello, 

    I saw your comment about your husband.  Very pleased for you and your husband.  My husband has rcc and has been offered a spot for clinical trial for anti pd1/ipi.  Your comment didn't mention the type cancer your husband.  But, I was hoping you could tell me a little about the drug.  How long the cycles are and the side effects.  I would appreciatie any info. 

    Thanks,

    Gwyn,

    Wishing you continue good news. 

     

    Anti PD-1 or Nivolumab

    Gwyn

    PD-1 is now called Nivolumab.

    if I am not mistaken, there are close to 10 different arms. The most recent is with ipiliumab.

    Google Nivolumab trials and you will will find a lot of info.

    i am on a trial since Feb. 2013 of Sutent and Nivolumab. I had a 3.2 cm left adrenal tumor after radical right removal.

    Nivolumab every 3 weeks-infusion

    Sutent- 50 mg for 28 days, off 14 days

    6 week scan-grew 15%

    12 week scan - shrank 30%

    18 week scan- shrank another 30%- down to 1.6 cm

    i scan again in 4 weeks.

    they said the slight delay is consistent with an immune response. From what I have read, the ililumab -Nivolumab combo works a lot faster Than Nivolumab alone or with other combinations.

    for me, sutent has had more side effects than the nivolumab.

    Praying for continued response!

     

  • Baaa-bs
    Baaa-bs Member Posts: 50
    What exciting news! I'm so

    What exciting news! I'm so happy for you both!

  • n219ct
    n219ct Member Posts: 1
    Darron said:

    Anti PD-1 or Nivolumab

    Gwyn

    PD-1 is now called Nivolumab.

    if I am not mistaken, there are close to 10 different arms. The most recent is with ipiliumab.

    Google Nivolumab trials and you will will find a lot of info.

    i am on a trial since Feb. 2013 of Sutent and Nivolumab. I had a 3.2 cm left adrenal tumor after radical right removal.

    Nivolumab every 3 weeks-infusion

    Sutent- 50 mg for 28 days, off 14 days

    6 week scan-grew 15%

    12 week scan - shrank 30%

    18 week scan- shrank another 30%- down to 1.6 cm

    i scan again in 4 weeks.

    they said the slight delay is consistent with an immune response. From what I have read, the ililumab -Nivolumab combo works a lot faster Than Nivolumab alone or with other combinations.

    for me, sutent has had more side effects than the nivolumab.

    Praying for continued response!

     

    pd1

    Darron,

     

    My name is John and I have ACC -- I had a 9cm tumor resected along with my left adrenal, left kidney, spleen, lymph nodes, etc.  The mets are in my liver and lymph nodes.  I am really interested in pd1.  Is is working for you?  How did you get into a trial?  Where is the trial?

     

    I am sorry for all of the questions....

     

    JOhn