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Trials and choices....1 year after diagnosis

MattInVa
Posts: 50
Joined: Sep 2015

After a dissapointing last 6 mos of std therapies I am moving on to clinical trials. Today is my 1 year anniversary since my diagnosis.

Opdivo showed mixed results in my Pulminary nodules and shrinkage in my liver, but my lymphnodes exploded in the last 3 months, with most gowing 3-4cm in 2 mos.

 

Initally I showed good results on votrient, but after 4 months it stabilized and by 6 months I have progression.

As an intersting not I had a lot of feedback from doctors at the molecular tumor board. Upon questioning about my side effects the question of my severe diariah became a talking point. He theorized that due to the Votrient being a fat soluable absorbtion and my inability to digest and absorb properly that it wasn't that votrient failed in its chemical ability, but rather it wasn't being absorbed and thus not getting to where in needed to be.

This is not a proven fact just a theroy that was propsed to me, but even before this converstation I had began to think that if everything went through me how could my digestive absorbtion be working, I had also lost weight and been losing appetite.  You can see where my thinking is going..... I was so sick on Votrient for the last several months on it.

The trial I am looking at is another TKI , this time a combination of Ibrutinib and Everolimus in pretty agressive doses. This is a phase I/II trial basically testing the dosing tolerance. Initially I had good results on a TKI so I am leaning that way rather than another immuno like IL-15.

 

I had a biopsy friday on a lympnode next to my thyroid. This will be analized and compared to my original Kidney tumor to see if there is a mutation directly effecting my lymph nodes which is where 95% of my growth is occuring. So I will be at the tumor board again in the next few weeks for those results.

I have meetings regarding this in the next couple of weeks, I have stayed on opdivo for another cycle because it wasnt't all bad results and the side effects where non existant.

 

Wish me luck, I haven't had a lot lately in treatment, 2016 has been very rough for me.

 

 

 

 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I hope things start looking better for the rest of 2016.

I'll keep you in my prayers,

Donna~

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

Matt, I'm happy that you decided to go ahead with the trial.  I know it was a tough decision for you.  Good luck and I'll be praying for you.

Stub

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Sending you another hug my dear!

We're here for you!

Warmly, Jan

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Its got to end on a flourish. Good luck Matt, we're all rooting for you. 

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Prayers going up.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

matt, I have similar thoughts. I also think that something simple like mega doses of Vit B with infusions will open anti cancer doors big and wide.

Don't be too discouraged. Like me, we have several more options both to try and to be available soon. The key is to be here to try them. So dig in those heels a little deeper. We've got a lot of fighters backing us up.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Hows the Cabo treating you?

MattInVa
Posts: 50
Joined: Sep 2015

Fox,

I saw your thread on Cabo. It was approved in April 16, even later than Opdivo. I am considering trying it next rather than trials.  According to NCCN it is favored over Afinitor due to results fom Phase III trials. I hope you get a good run out of it. I really want to try something else before I need trials.

 

Matt

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I see no trials that I'm interested in right now. I'm too advanced. But that could change in a heart beat. If the cabo gets as hard as the votrient was to tolerate, then it's off to something else.

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