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

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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's picture
MDCinSC
Posts: 574
Joined: Feb 2013

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

 

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

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

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

angec's picture
angec
Posts: 622
Joined: Mar 2012

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!

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
Galrim
Posts: 278
Joined: Apr 2013

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

/G

foxhd's picture
foxhd
Posts: 1928
Joined: Oct 2011

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's picture
Limelife50
Posts: 411
Joined: Nov 2011

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

I am alive
Posts: 222
Joined: Jul 2012

I am thrilled for you.

srdowney51
Posts: 1
Joined: Jun 2013

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's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

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 

Darron's picture
Darron
Posts: 223
Joined: Jun 2013

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!

 

n219ct
Posts: 1
Joined: Dec 2013

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

 

 

Mikeyswife
Posts: 31
Joined: Mar 2013

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's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I'm happy that he is responding well! 

danbren2's picture
danbren2
Posts: 190
Joined: May 2013

That is terrific news! God Bless!!

GSRon's picture
GSRon
Posts: 1270
Joined: Jan 2013

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

Baaa-bs's picture
Baaa-bs
Posts: 50
Joined: Jun 2013

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

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