Update

Posted By
5/10/2014 1:10pm
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Replies: 8

Hi all-

well it's been 3 months since I had scan after completing trial of ipi then HD IL-2. I did ipi Oct-Dec last year and then IL2 in Jan. Scan on Feb 17...NED. Scan yesterday....NED!!!! Obviously I'm very happy but I can never lose uncertainty. First question I ask is what is prognosis in comparison to other patients who've responded like me. Is it the IL2 or ipi...or both???? It's like I almost feel guilty or it's too good to be true. Am I crazy or is this normal? 

So my oncologist gave me option of scan in mid August or push it out to beginning of Oct. she felt comfortable waiting as she said there is no disease to track. Am I crazy for doing this? The rationale is over exposure to radiation as like many of you...I've had my fair share of runs through the tube! The study I'm on requires scan in Oct-Nov as this is the 1yr time frame.

i hope everyone here is well. This site and many of the people have been a tremendous resource & support. I can only hope that treatments that have a broader scope in helping people are in the near future....c'mon PD-1!!!!

josh

Let's work for better treatments....for a cure!!!!

SABKLYN - (5/10/2014 - 1:57pm)

Great news Josh!  I don't think the 4-6 weeks would make much difference.  However, like many things we have to decide with this disease, it's all about what makes you most comfortable.  

sofistef - (5/10/2014 - 4:51pm)

Josh,

this is wonderful news! Congratulations and stay always NED! I followed your story closely, I also became stage 4 about the same time as you did, I'm not NED yet, I only have a tumor in a hilar node, that stayed the unchanged since the begining of treatment in November! I'm on Ippi/ Nivo/ippi +nivo trial and hope to see NED on my scans soon!

Dana

MattF - (5/10/2014 - 5:42pm)

Josh 

Great news....

Dana I too became stage IV last year.....

I had a Scan yesterday May 9 2012.....get results next week.

 

I'm on the BRAK combo...5th month on the Meds.

 

last scan showed.....smaller lesions on femur, humurus, rib, cage, tail bone, etc....so hoping for continued  shrinkage or stable on this one.

Stay Well.

Matt

joy_ - (5/11/2014 - 8:02pm)

So happy for you!! Thanks for sharing your good news!

Tina D - (5/12/2014 - 8:54am)

WOW! This is awesome :)

Glad you shared!!

No advice for the scans, that is always such a challenge to know. Pretty sure I glow when the lights are off.

I am just so glad you have gotten such a tremendous report!!!

Tina

kpcollins31 - (5/12/2014 - 11:28am)

Congratulations, Josh - great news to hear!

Kevin

 

JerryfromFauq - (5/12/2014 - 8:29pm)

Love it!!  I would give the combination a lot of credit.  Understand about the watching for excess radiation.  Even though I have innumerable stable tumors I only get scanned every six months.  (as long as the tumor on my neck doen't start growing again! I shrunk from a nodule to flat about 5 years ago!  Ssosmetimes the other shoe never drops!!!) 

 

 

I'm me, not a statistic. Praying to not be one for years yet.

Brendan - (5/13/2014 - 2:03pm)

Great news, Josh!  Congratulations.  Thanks for sharing.

Brendan