Update on Mary - 1245557

markg
Posts:12

Hi All,
After a year on Tarceva, Mary's June 18,2012 CT/PET showed one small bone met in her hip. She was experiencing pain in the area. The remainder of the scan was great. Her Onc wanted to change from Tarceva to Alimta. Not a bad strategy but we decided to get a second opinion at Sloan Kettering. They recommended radiation to the hip (b/c of the small nature of the progression) and continued Tarceva use. Mary decided to go with Sloan. She is now undergoing 10 radiation treatments, during which time her new Onc and radiologist have had her discontinue the Tarceva. After the treatment she will go back on Tarceva. She has already had six treatments and she still has the hip pain. We have been told it can take a couple of weeks to get relief. As an aside, the docs at Sloan told us they regularly recommend this therapy for Tarceva patients with slight progression. We were kind of surprised by that. This treatment reminds me of Dr.Weiss' April 2012 expert Forum discussion involving the two trials he is conducting utilizing radiation after TKI resistance. Anyway, sure hope this works.
Best to Everyone
Mark

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Reply # - July 20, 2012, 08:04 AM

catdander
Posts:

I hope the radiation does the trick on Mary's hip. Yes there seems to be quite a bit of buzz about the rethinking of radiation in lung cancer. My husband, like Mary may be a candidate for its use not because of tarceva though. His cancer seems indolent so if his returned with just a spot or so I'd clamor for radiation too.

Hurray for more options! and Keep us posted.
Janine

Reply # - July 20, 2012, 09:42 AM

certain spring
Posts: 762

Mark, really glad to hear that Mary is getting some thoughtful medical input, and hope the radiation works well for her. Very best.

Reply # - July 25, 2012, 07:00 PM

markg
Posts: 12

Hi everyone.
Today, Mary finished 10 days of radiation on her hip. She seems to have tolerated it fairly well. The pain in her hip has definitely diminished. She will go back on Tarvceva in 2 days. Actually, she was so afraid to be off the Tarceva that she took it during the weekend gap in her treatments. She is scheduled for a CT scan on August 1st. Hope this concept of Tarceva with spot radiation for minor progression works. Anybody else out there undergoing similar therapy? Any news on Dr. Weiss' trials with this therapy?
Regards to All,
Mark

Reply # - July 26, 2012, 11:04 AM

catdander
Posts:

Hi Mark, I hope the scans are good and this approach is just what will work. I understand the unwillingness to be off treatment. My husband is on his first break in 3 years and is just now wrapping his head around it even though he's ned.
I'll ask Dr. Weiss to comment though it really hasn't been very long. But I'd probably ask him if I were in your position.

Good good luck on the therapy,
Janine
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Reply # - July 26, 2012, 12:02 PM

dr. weiss
Posts: 206

I wrote about this recently on GRACE at http://cancergrace.org/lung/2012/04/03/radiation-to-address-cells-with-… Since that post, there is some new data that is informative. Part of my rationale for doing the trial is that I've tried this strategy with some success. Apparently, I'm not the only one! Investigators at U Colorado and MSKCC both looked back on the experiences with this kind of strategy and both were favorable. The Colorado cohort was mixed egfr (tarceva) and alk (crizotinib); their mPFS after ablation was 6.2 months. The MSKCC cohort was all EGFR and their mPFS was 10 months. Of note, there was a fantastic discussion of these abstracts by our own Jack West! Regarding my trial, it is now up and running at UNC. We've screened 2 patients, but both had >5 sites of progression and so we favored other choices for them.

Reply # - August 9, 2012, 09:42 PM

markg
Posts: 12

Hi All,
Several days ago we got the results of Mary's August 1st CT scan All is stable. No progression. Hooray!!!! The 10 day radiation therapy to the lesion in her hip did the trick and she is no longer in pain. She continues on Tarceva.
For those who are trying this therapy (i.e. utilizing radiation after slight progression and then continuing on Tarceva) I did get the sense from her Onc at Sloan that she feels Mary will show progression sooner rather than later. Yet our feeling is: let's try and get as much time out of Tarceva before switching therapies.
Best to All,
Mark

Reply # - August 9, 2012, 11:48 PM

laya d.
Posts: 714

Thanks for the update, Mark. . .and continued best of luck to Mary. . .

Laya

Reply # - August 10, 2012, 12:14 PM

JimC
Posts: 2753

Mark,

Great to hear the excellent scan results! In addition to the concept of continuing with Tarceva after radiating one spot of progression, there is also the possibility of not stopping Tarceva if there is new, slow progression but instead adding another agent to it. In my wife's case, we added Alimta to the Tarceva at the time of slight progression. The thinking was that much of the cancer may still have been sensitive to Tarceva but that the resistant cells would be killed by the chemo. In order to prevent a possible antagonism between the two drugs, my wife took a few days off Tarceva around the time of the Alimta infusion, a concept called pharmacodynamic separation, which you can read about here: http://cancergrace.org/lung/tag/pharmacodynamic-separation/

In the meantime, hoping for many more stable scans!

JimC
Forum moderator

Reply # - August 10, 2012, 12:46 PM

marisa93
Posts: 215

Hi Mark,

Great news on the results and good to hear that Mary got relief with the radiation! My best wishes to both of you:)

Lisa

Reply # - August 10, 2012, 06:18 PM

Dr West
Posts: 4735

Mark,

Glad to hear she's feeling better and had an encouraging scan result. Good luck.

-Dr. West

Reply # - August 11, 2012, 10:33 AM

graceabchen
Posts: 52

Mark: Very glad that radiation has improved Mary’s condition. Thanks for keeping us updated. AB

Reply # - November 21, 2012, 05:14 PM

markg
Posts: 12

Hi All,
Got a quick question. Mary is struggling again with hip pain in the same location which was previously radiated. The pain is sometimes intense and she is taking pain meds as needed. We are seeing her doctor at MSKCC next week. The somewhat surprising factor is that the pain increases dramatically when she lies down. Anybody know about this?
Best to All,
Mark

Reply # - November 21, 2012, 05:50 PM

Dr West
Posts: 4735

I don't. Hard to say what that might represent -- worth bringing up, and I'd be interested to learn what work-up is pursued and what you learn about what's going on.

Good luck.

-Dr. West

Reply # - November 21, 2012, 09:13 PM

laya d.
Posts: 714

Hi Mark. . .

So sorry to hear that Mary's hip pain is back. . .but wanted to wish her well and hope that her docs figure it out quickly.

All my best,
Laya

Reply # - August 28, 2013, 05:21 PM

markg
Posts: 12

Hi All,
Haven't posted for quite a while. I don't mean to be a downer but I backed off b/c I found it too hard to follow the threads of people I came to admire greatly only to be saddened by their passing. I was especially troubled when Jing died. After my wife, Mary, was first diagnosed and I found Grace, Jing was so kind and helpful to me that I will never, ever forget her. In my mind, that's immortality.
Anyway, it has now been almost two and a half years since Mary was diagnosed w/ stage IV. She is a on her fifth or sixth line. She is currently on Gemzar. She is struggling. I have two questions:
1- We have been told by our onc at MSKCC that b/c Mary now has some brain mets, she will not be eligible for any immunotherapy trials b/c those drugs tend to attack the cancer causing the cancer to grow/expand and they can't risk that in the brain. True?
2- Does anyone know about dacomitinib? I can't seem to find that much info on the internet. Is this an option after Tarceva resistance.
Best to All
Mark

Reply # - August 28, 2013, 09:03 PM

Dr West
Posts: 4735

The rules on immunotherapy trials are just made up by the people who sponsor them. Many of the trials allow patients who have treated, asymptomatic brain metastases to enroll if they are otherwise eligible.

I have a trial of dacomitinib (in EGFR TKI-naive patients), but its mechanism of action is extremely similar to that of afatinib. I don't know of any evidence on it being used in acquired resistance, but my suspicion is that it will largely mirror the results obtained with afatinib in this setting, which I'd say haven't been especially impressive, I'm sorry to say.

-Dr. West

Reply # - August 29, 2013, 05:24 AM

JimC
Posts: 2753

Mark,

I am so sorry to hear about Mary's brain mets. I hope that an appropriate trial or other treatment will be found for her. My thoughts will be with you, as they have been since you posted in Lisa's thread almost two years ago.

JimC
Forum moderator

Reply # - August 29, 2013, 06:21 AM

marisa93
Posts: 215

Mark,

I am also very sorry to hear that Mary is struggling. I will be keeping you both in my thoughts and hoping you find an appropriate treatment for her.

Lisa

Reply # - August 29, 2013, 01:54 PM

Jazz
Posts: 279

Mark,

Very sorry to hear of Mary's difficulties. Have you sought other treatment options at MSK? I don't know what's available but I would think there would be a number of trials available to her, even as 7th line (I've stopped counting how many lines I've had).

I was on Tarceva+Alimta for 2 years and continued Tarceva +/- other agents until I enrolled in the Afatinib+cetuximab trial (same one Jing was on - she was something, wasn't she?). If that trial is still recruiting, I believe it is open to those with treated brain mets.

The Phase 2 trial for Genentech's PDL-1 trial has cohorts 1 and 2 for brain mets, and cohort 3 for treated asymptomatic brain mets, but I don't know any other particulars. I'm trying to get into this trial (no known brain mets as of now though). It's NCT01846416.

I hope Mary can get some relief and you can find a new path soon.

Best,
Jazz

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