Is anyone in the LY2875358 trial?

Phoenix Rising said:

Lone Ranger?

Okay, so it looks like I am the only one in here in the LY2873858 trial.  Infusions are 1 every two weeks, with periodic blood tests in between. The infusion takes 2-3 hours and blood pressure and temp are taken every 15 minutes during the infusion. The infusion day lasts 8 hours. I have had 2 infusions (I think-- who's counting?!)

So far I have 1 and another possible side effect.  I have fatigue, and in the beginning it was to the point my teeth chattered, but now, on the easy end, I will catch myself knitting my eyebrows.  I also have a tendency to grind my teeth.  Overloading on water and green juicing seems to ease it. The "possible" side effect is itching.  I have little itching fits in random areas-- my forehead, my back, my thigh, my shoulder, my hairline.... if it gets too bad I will take a Benadryl tab and nap it off.  Benadryl will also relieve the fatigue but I can't work and take it, lest my boss find me with my face planted firmly on my computer keyboard. My blood tests show a slight drop in red blood cell count but that was to be expected. All other blood results are good and within range. I think I read that I can take iron to help alleviate fatigue.  I had a full prescription bottle somewhere around here and can't seem to put my hands on it.

Other than that, despite the nuisance of repeated trips to the cancer clinic and the constant who-can-find-today's-vein-hunt-and-jab games, it's a walk in the park where side effects are concerned.  I have no nausea, no dia-ree-ers (Hallelujah!), my natural complexion has returned (I was a nice shade of Votrient yellow-orange), and I can see my natural hair color at the roots.  My bp is back to normal, I have no muscle cramps, no splinter hemorrhages, and I no longer feel like I have a baby elephant riding piggy-back.

If anyone else IS here, and in the trial-- but doesn't really want to talk about it..... my advice to you is "don't drink sangria (or red wine or beer or Effen Black Cherry Vodka or any other alcohol--- not even a few SIPS) while taking this drug."  It will give you a mean headache.  That's MY immediate contribution to the trial results!   

Oh, and I almost forgot!-- There's a flat screen TV w/cable and a reclining chair in the infusion space-- and Gunsmoke is on all day. I loves Gunsmoke.

My MDX trial really had no side effects worth mentioning. Although the infusion was only an hour, it was an all day affair also. Now if Gunsmoke was offered on their cable system I wouldn't have minded either. I loves Gunsmoke too. I love how Matt Dillion always shows up 5 seconds before someone gets hung or shot. His timing is awesome!

Do well with the trial. We love trials almost as much as we love Fester.

Phoenix Rising said:

I take the heat as it comes

Okay, so you know the routine Fox.  Having my own, personal Gunsmoke marathon really does make it easier.  I actually look forward to having a day off from work to watch it. I take good TV snacks to munch on all day. 

And that Miss Kitty is one honest Madam!  I never knew a Madam could be so altruistic.

Miss Kitty...  I always had a crush on her..!!! 

Ron

I'm a little late finding the site. sorry!

I am presently on this trial. The trial location is the Winship Cancer Center,Atlanta.my results after thirteen months are as follows. No side effects, the cancers have been stabilized since the first scan(11/12). The last scan showed a reduction of 5%. If any of you have questions,I'll make Evert effort to answer.

BC

Phoenix Rising said:

Kicked out of trial!

Hi Gatorbob!  I wish we had connected sooner.  I am also at Winship. 
Just as I was settling into the study and had gotten past the initial running back and forth for blood draws and the like, I got some bad news on my last visit.

My scans from last week showed a slight increase in tumor size, enough that I am no longer allowed to participate in the study. One particular lung nodule which was not measurable at baseline, became measurable.  I had slight growth in a lymph node, but it was less than twenty percent and not cause for being ejected.  The other lung nodules and affected lymph nodes remained stable.

I was upset to the point of tears, mostly due to disappointment because I truly believed this would work for me.  I was rather enjoying this particular drug, if there is such a thing as enjoyment with this, because it was so much easier than the Votrient where side effects were concerned.  I only experienced fatigue, which went away some time after the 3rd infusion.  I also found relief in going in every other week, packing a nice lunch and some healthy snacks, taking the day off from work, watching Bonanza, chatting with the nurses, covering up with a warm blanket, and drifting into a nice nap.  I should have known something was amiss when Bonanza didn't come on that day.  Hmph!

The oncologist discussed that we would go back to the Votrient-type drug in a couple of weeks.  I didn't hear the name of the drug- I just kinda heard blah-blah-blah at that point.  He did, however, tell me that I am by far his healthiest patient with Papillary RCC.  Okay.

 I left and went to have a pedicure, then went a wellness spa for a good steam and some sauna time.

Phoenix - Wow, that really sucks. But I'm proud of you. You did what any great fighter does. You had your equipment primed. In your case, it was a pedicure readying yourself to kick in style during the next round of whatever treatment your docs prescribe.

I know you're disappointed; I am too for you. But it says something about you to walk away from bad news from your docs right into the salon. I really like that about you. That tells me you're not backing down for a minute and--those of us that support you--aren't either. We'll take it on the chin with you knowing the harder you fall, the higher you'll bounce. 

 P.S. Gator Bob - Hope the trial continues to work for you. Keep us posted as trials are always of great interest. 

Phoenix Rising said:

Thanks, Alice

Thanks, Alice.  As usual, I just move on. We are going to find something that works.

the study also after some small tumor growth. It was upsetting and I think premature. All I know now is that if immunotherapy is going to work for me, I have given it my best shot. You are right. We just move on. Right now I have no plan B.

Phoenix Rising said:

On being premature

Foxhd, Even though it was done by the standards of the study, I felt the scan was done to soon and did not give the medicine a chance to work.  It was quite upsetting. My Plan B-- If I keep doing what I've been doing, I'll keep getting what I always got...  it's time to do something else and get something else.  I just have to figure out what that is.

Puppy Lady,

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

BC

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

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 said:

Wednesday is infusion day

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!

 

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

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