Off MPDL3280A trial - 1261703

judys
Posts:74

After two infusions of the trial drug, the PT/CT scans showed growth in my many lung nodules/lymph nodes. Since I felt lousy, was still losing weight (down over 20 lbs), needing pain meds for hip/back pain and had SOB, the trial doctor and I decided it was time to stop. I restarted Tarceva the next day. This was about 2 weeks ago. I feel somewhat better.

The trial doctor suggested looking into the Clovis trial but right now I don't feel interested in traveling or going through another biopsy etc etc. I'm leaning more toward returning to chemo - the taxanes have been good to me over the years.

I'm also in discussions with my radiation oncologist about radiating the T12 area. It could provide relief from some symptoms I'm having. However the radiation field would most likely have a little overlap of an area radiated in 2011. We'll continue talking.

It'll be seven years at the end of this month that I've been living with LC. This is the first time I've felt so lousy. I don't like it!!
But I will continue to hang in and make the best decisions I can about how to go forward.

I think of you all even though I rarely post.

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Reply # - January 23, 2014, 05:50 PM

JimC
Posts: 2753

Hi Judy,

It's good to hear from you, although I wish your news was better. I hope that a return to chemo and possible T12 radiation will make you more comfortable and achieve stability.

You may not post often, but your friends here remember you and wish you well.

JimC
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Reply # - January 23, 2014, 07:14 PM

Dr West
Posts: 4735

Judy,

I'm so sorry to hear about your progression. Of course, radiation to treat the symptomatic T12 lesion is very reasonable. Beyond that, I'll admit that I'm encouraged by the Clovis data, which I'll write up into a post here in the next few days.

I look forward to hearing more from you soon.

Good luck!

-Dr. West

Reply # - January 25, 2014, 04:14 PM

double trouble
Posts: 573

Judy, I don't think we need to worry much about you having a support network, since many here at GRACE, and many at Inspire have benefitted from your kindness, and will take the opportunity to give a little back. I am so sorry you're feeling lousy, and hopefully it will pass soon. I hope you can get your spinal pain under control, as I know what that feels like and it ain't good. Know that many minds are joining together to send love and encouragement, and a prayer or two as well.

Much love,
Debra

Reply # - January 25, 2014, 07:05 PM

judys
Posts: 74

Thanks for the encouragement everyone. Today I did lots (for me) of walking which always pleases me (though I did need to nap when I got home!).

Debra, I'm not the Judy that posts on Inspire. There were lots of us around whenI was in elementary school! I check out Inspire but only posted once - that was enough. Things are different over there...... You're right about me having a good support system, none more important to me than my local LC support group. It took some years to get one established but it's a great group.

Reply # - January 29, 2014, 01:44 PM

laya d.
Posts: 714

Judy - -

So bummed this trial didn't work out for you, but I am hopeful that you and your docs will come up with a great next step - - be it chemo or chemo/radiation or whatever. Let's just get you feeling better and up and around ASAP! And please know that I think of you very very very often. . .

xoxoxo...much love,
Laya

Reply # - March 29, 2014, 12:06 PM

judys
Posts: 74

Hi -it's past time for an update so here goes. After leaving the MPDL3280A trial, I immediately restated Tarceva. I was able to almost stop all pain meds. I developed diarrhea which had never been a problem before but we decided to stop Tarceva to see if that was the culprit. Nope- c diff! After two weeks of antibiotics that seems to have cleared up and I've resumed Tarceva.

March 4 I had a CT of chest and abdomen. Basically all was stable cancer wise which was quite surprising. I couldn't get too happy because my weight is down even more, and I'm very weak. I'm trying dexa now; have had marinol pills for a while too. They can make me too loopy feeling which I don't like but perhaps should just live with in order to get the appetite help I need.

I'm at a pretty interesting spot right now with some interesting choices to be made soon. The first six years of this journey were relatively easy. This last one was more difficult and now year 8 has been mostly awful!
Not unexpected----

Reply # - March 29, 2014, 01:50 PM

shy one
Posts: 49

Judy: I'm so glad you posted an update, and I'm very glad your cancer is stable. If marinol helps with your appetite, perhaps as you get used to it the loopiness will diminish. I haven't posted to you before, but I certainly have read your posts, and been concerned about how awful year 8 has been for you. I am concluding year 5, and it hasn't been a piece of cake, but I have been able to travel (just returned from Singapore Wednesday) and that has helped my mood and enthusiasm. Even a day visiting my kids and grandchildren is helpful, and the monthly neighborhood block dinners put a lift in my spirits. I wish you luck with your upcoming choices. Think of you often, and wish you the best.
Nan

Reply # - March 29, 2014, 05:59 PM

Dr West
Posts: 4735

Thank you for the update.

I hope you can continue to hold on and, ideally, to maintain or gain weight and some strength.

This is a year in which we're seeing more promise with novel agents for acquired resistance to EGFR inhibitors in patients with an EGFR mutation. I hope you can get the opportunity (I don't recall if you have been officially found to do so well, but after a 3.5 year-long response to an EGFR TKI in a never-smoker with an adenocarcinoma, it's a fair assumption).

Good luck. Thinking of you.

-Dr. West

Reply # - April 23, 2014, 05:55 PM

laya d.
Posts: 714

Sorry you are feeling so crummy, Judy. Hopefully the marinol loopiness will diminish and your appetite will increase.

I'm keeping you real close,
Laya

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