Esther update (yet again)

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3/17/2013 2:53pm
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Replies: 6

Hi Friends,

Onward with the story, my story, our story.  I made an appointment with Dr. Falchook at MD Anderson for a consultation since I was in Houston anyway for the meeting.  He had labs done before I saw him.  He walked into the room and started by saying "We're not going to talk about cancer, we're going to talk about hospitalizing you--right now!"  My calcium level was critically high.  It took them nine days in the hospital to lower it enough for me to go home.

The same thing (hypercalcemia) happened to me a year ago about 2 months after my last ipi infusion.  Turns out that now is about 2 months after my last reinduction of ipi.  So, with this little evidence, we are concluding that ipi causes hypercalcemia in me.

Hypercalcemia causes lots of symptoms, among them mental confusion.  So, when I attended the conference I knew my mind was muddled, but attributed it to effects of aging.  Looking back on it, I am embarrassed by how truly confused I was.  I apologize to any of you out there whom I may not have recognized right off, or with whom I may have had ditzy conversations.  I'm getting back to what passes for "normal" for me in the brain department.

To remind you, the last treatment I had was a reinduction of ipi, last infusion mid-January.  Two weeks after that scans showed progression, no shrinkage.  I'm in the process of looking for what to do now.  I feel OK, and am grateful for that.

To those of you I met at the Houston conference, I thoroughly enjoyed seeing old friends, and making new ones, even though I was in a mind-muddle.

My thoughts are with all of you, along with my best wishes (sounds so trite, but true) in your, our, struggle.

Esther

Tina D - (3/18/2013 - 7:51am)

I hadn't ever heard of that side-effect as a posibility. SO glad you had an appt while down there! I hate the mental cloudiness that sometimes comes as a result of some of the treatments, and I am sure you are relieved to be feeling better in that regard. It seems like two weeks after your ipi was quick to determine a non-response... are there more scans scheduled? 

Tina

So glad you are feeling better Esther.

Sending you a big hug.

Anne Marie

Sue33CT - (3/18/2013 - 8:37pm)

Thank you for sharing your update - you are a real inspiration to many of us who are too new to have met you yet!

Anonymous - (3/19/2013 - 4:08am)

i m glad you are feeling well again. I too wonder about why it was decided to class you as a non responder so early. I suppose it could be of benefit is there anything you could ablate or irradiate to get a response?

Hi Esther,

   So sorry to hear about the hypercalcemia, but glad they discovered it and you're doing well. It was nice to see you in Houston. When do you scan again? Hopefully you will see positive results then.

    I also had re-induction of Ipi and the lesions in my liver, abdomen have been relatively stable. Dr. Sato's recommendation was continuation with imaging and not to do any treatment at this time.(don't rock the boat) I saw Dr. Patel for a consultation when I was in Houston and I was surprised as she recommended surgery, if possible, to remove liver lesions and while in to get the larger lesion by my stomach (which had been cyberknifed AND IS SHRINKING). I thought if you had more than one lesion in the liver and extrahepatic disease surgery wasn't recommended. Her reason was since I'd had the disease as long as I have (Oct., 2001) and that I've stayed ahead of it and have taken just about every medication they're talking about, plus Ipi twice, there is not much else other than off-label and Phase I trials.

  Let us know what you decide.

Hugs,

Nan

edamaser - (3/19/2013 - 3:33pm)

Thank you all so much for your kind thoughts and wishes.

The reason I was deemed a non-responder so soon after my last ipi infusion is that it was my second go-round with ipi, and I showed no shrinkage at all, only slow progression. 

I'm now trying to get my calcium and creatinine under control before I launch into another treatment.

I very much appreciate everyone's overlooking my poor state at the conference.  It felt really good to me to be among my OM family.

Esther