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Is anyone in the LY2875358 trial?

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Hey team,

So my scans from almost two weeks ago show mixed results.  Some nodules on my lungs grew just slightly, some did not change at all, and the enlarged hilar lymph node is the same.  My oncologist thinks it is time to move on, and wants me to consider the LY2875358/anti- c-met antibody trial.  I think this is the former MDX1106/BMS936558 trial.  The patient information only lists a few side effects, including nausea, diarrhea, accelerated heart rate and possibly enlarged thyroid.  I'd like to hear more about this from anyone in the trial, or from anyone who is just in the know.  Thanks!

Oh, and it turns out that the extra pain I felt in my neck and back, you know, the pain we always think is more cancer.... well I got a new memory foam pillow and guess what-- no neck and back pain.

gatorbob
Posts: 20
Joined: Oct 2013

Puppy Lady,

Did the staff at Winship offer any alterative trials or treatments ?

BC

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

No, they did not offer any other trials.  The onc mentioned Sutent and another drug that I was too deaf to hear at the time.  I think he saw me drift out of the conversation, so he said he would give me a break for a couple of weeks and we would discuss it again. 

 

I laughed aloud at Puppy Lady. Thanks for that!

gatorbob
Posts: 20
Joined: Oct 2013

Left you a note on Janna's site!!!!

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

That's just tickles me to no end! 
Janna's site-- please refresh my memory-- Where is Janna's site?

gatorbob
Posts: 20
Joined: Oct 2013

You posted here on her page several weeks ago.I left you a note there! I'm still at Winship doing the Phase one trial. I'm there every other Thursday. What is your day???? If they coinside, my wife and I would like to meet you at the snack bar for coffee and conversation! I'm sure we have a few stories to share! The nurses remember you. How is your new treatment going? How's the Pup??

See ya..........BC

 

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Okay, I will check there for your message.  I am now doing the Sutent + Gemcitabine treatment.  It is a trial, but fortunately I am doing it off-study, so I guess I won't get ejected so quickly if the results aren't immediate.  I have infusions Wednesdays, two weeks in a row, and off treatment the 3rd week.  I am off-treatment starting this Wednesday, and will return next Wednesday, March 26.  This treatment is done in that first or second infusion area as opposed to the Phase I area in the back with the nice TVs, which means I don't get to watch Gunsmoke and I don't see my fave nurses.  Bummer!

This new treatment is going well, the side effects are minimal and just vaguely uncomfortable at the most.  The SE's I am experiencing are typical of Sutent, and not Gemcitabine, consisting of mild fatigue, elevated blood pressure, dry skin, and a little soreness on the hands.  I am tired and sleepy the day after infusion, feeling un-well the day after that, and rebounding quickly the third day after infusion.   The "Gem-Beam" burns going in-- kinda like freezer burn, but the infusion is quick- it is 45 minutes only because I requested that they slow it down from 30 minutes due to the burning feeling up my arm.  I am going to take a heating pad with me for the next infusion, and I am considering a port now (ugh).

There is a metastatic lymph node on the back of my shoulder that was very easily palpable just one week ago.  Last night I had a hard time finding it.  My husband said it feels more like a mosquito bite now, than the larger bump it was last week.  I am positive that is a good sign.

Sadly, the pup lost his battle with bone cancer and I thought it best to euthanize him.  It was the most heartbreaking thing I ever had to do. 

The hubs and I would love to meet you and your wife, maybe we'll somehow coincide one day!

 

gatorbob
Posts: 20
Joined: Oct 2013

Are you still at Winship on Wednesdays???? If so I have something for you!!! My coordinator, Colleen, will deliver it to the nurses station where you are.May I have some form of ID so it may be delivered?

Thank you.......Gatorbob

 

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Hey Gatorbob,

Wow!  I'm excited!  Sorry I missed this message. I was out of town Wednesday so I had my infusion Thursday this week, and I had a CT scan today (Friday).  I will next be in for my infusion Wednesday, July 30, 2014.  I'll come up with a way to identify me-- like a unique jacket or sweater I'm sure no one else will have!

gatorbob
Posts: 20
Joined: Oct 2013

I'll be in Phase 1 on Thursday. If you're infusion nurse/coordinator will stop over at my place, your package will be on Colleens desk!ii If the pickup goes OK I'll explain it later.

See ya..........back

gatorbob
Posts: 20
Joined: Oct 2013

This is easy! Wednesday tell your infusion nurse to see Colleen in phase 1to pick up a memento for Phoenix/Puppy Lady. You pick and let me know!? How's your treatment going and what are the meds????

See ya.......BC

 

gatorbob
Posts: 20
Joined: Oct 2013

Your package is in Coleen's office and waiting to be picked up! Your chat room nicknames are on the bag.

BC

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

I will be sure to see nurse Colleen today!

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

Nurse Colleen was not in the area but Nurse Keena was, and she gave me the cutie-cutie gift! Thanks so much!  I am anxious to hear the story!

gatorbob
Posts: 20
Joined: Oct 2013

What you have is a "Care Bear". It's the third one I've had. The first was given to me just prior to the start of my treatments. Twenty-two months later my cancer remains stablized! His name was Sidney......for Kidney,of course! I passed Sid on to a friend who had undergone a bone marrow transplant at Emory. The blood cancer she was fighting was discovered to late and she hung on for six months. She wanted Sid to stay with her,so he's now resting where ever she is.The second bear was given to a friend of nurse Carie. She's the one you referred to in your posts. The one with the needle!!!!! Her friend is doing well in her battle with breast cancer.You have the third! I'm not sure wether a stuffed animal will effect the outcome of our endeavor,but you just never know. I brought him to all my infusions and gave him a place to live on my dresser.My wife,Caroline always brought him Honey treats!

Good luck P.L.,....BC

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

I will keep my Care Bear with me.  I think he'll like the graham crackers, just like me! I'll be sure to ask for extra when I have my infusions.

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