My Brother is a patient at Mass General. He has a gene mutation called RET Translocation, only about 1% of lung cancer patients have this and they're typically patients like myself. Young, healthy, with a short or never smoking history.
Initial diagnosis was Stage 3B after a brain MRI showed no cancer in my head. I went through 4 rounds of chemo and 38 radiation treatments in the summer of 2013. In April of 2014, my tumor was declared dead or dying and things looked great. In July of 2014 two brain tumors were found and removed. It was also determined at this time that the tumor in my lung was alive and growing again. After brain surgery I then had 3 targeted radiation treatments done to each tumor site as "clean up".went through 4 rounds of chemo and 38 radiation treatments in the summer of 2013. In April of 2014, my tumor was declared dead or dying and things looked great. In July of 2014 two brain tumors were found and removed. It was also determined at this time that the tumor in my lung was alive and growing again. After brain surgery I then had 3 targeted radiation treatments done to each tumor site as "clean up".
He's on ponatinib clinical trial now which is shrinking the lung tumor but the brain tumors recently came back with a vengeance. 5 new tumors in less than 6 weeks so he's now scheduled for whole brain radiation (15 treatments over 3 weeks)
My question is this: Are there other treatments or trials available inside or outside the US we should be considering?
Reply # - January 5, 2015, 10:32 PM
There was a report from
There was a report from Memorial Sloan-Kettering 2 of 3 patients with a RET translocation responding to an agent called cabozantinib, which is approved for thyroid cancer but not for lung cancer right now. As rare as RET translocations/fusions may be, there may be a trial of cabozantinib for such patients that the folks at Mass General could tap into or at least help direct him to. I'm pretty sure that Memorial Sloan-Kettering in NYC is continuing this work, and one of the very next places such a trial would be likely to be offered is Boston, given the many great cancer centers there.
http://www.mskcc.org/cancer-care/trial/12-097
http://cancerdiscovery.aacrjournals.org/content/early/2013/03/23/2159-8…
Good luck.
-Dr. West
Reply # - January 6, 2015, 05:39 AM
Thank you for the prompt
Thank you for the prompt reply, Dr. West. Is Cabozantinib similar to Ponatinib? Given that the Ponatinib trial he's been on for 9 weeks seems to be effective on the growth in his lung (24% shrinkage in 9 weeks), I think we have the lung area under control for the moment. The bigger concern is the new and fast growing growth in his brain and my understanding is that neither Cabo nor Ponatinib would cross the blood/brain barrier. Is that correct? Are you aware of any new treatments being used outside of the US that may be worth us researching?
Thanks.
Reply # - January 6, 2015, 08:04 AM
Hi Ileff,
Hi Ileff,
Most drugs cross the blood brain barrier to a certain extent, but often not to a great enough concentration to effectively treat brain metastases. Under the current circumstances, whole brain radiation (WBR) is the treatment of choice. It is usually quite effective, and for many patients the chief side effect is fatigue, which may last weeks or sometimes several months.
Since you seem to have the disease in the lung under control, that would be a strong argument for staying with the current treatment, although your brother's oncologist would best be able to make a recommendation.
Good luck with your brother's WBR treatments.
JimC
Forum moderator
Reply # - January 6, 2015, 08:43 PM
I'm sorry, but these drugs
I'm sorry, but these drugs are outside of my expertise, and I can't speak to their ability to penetrate into the brain. Usually, these "small molecule" receptor inhibitors are not especially effective at controlling disease in the brain, or at least we cannot expect that much of them.
I don't know of any treatments outside of the US that would be more promising. I strongly doubt that there is any intervention only available elsewhere that has any meaningful probability of being more effective than a US-based treatment. Mass General is known for its breadth of treatment options. If something isn't available there, it's not likely the options are much better elsewhere.
Good luck.
-Dr. West
Reply # - January 7, 2015, 06:15 AM
Again, thanks for the input.
Again, thanks for the input. Any experience with SonoPhoto Dynamic Therapy (SPDT)? I realize we're exploring non-traditional paths here, but knowledge = power. Traditional meds/procedures are helping, but the cancer is progressing at a rate which will have us exhausting typical options soon. We're really just trying to understand all options... even the wacky ones.
Any comments are appreciated.
Reply # - January 7, 2015, 06:52 AM
Hi Ileff,
Hi Ileff,
This therapy has been discussed previously on GRACE, but it is a local therapy not appropriate for metastatic cancer: http://cancergrace.org/forums/index.php?topic=6828.0
JimC
Forum moderator
Reply # - January 7, 2015, 06:08 PM
As Jim noted, this is an
As Jim noted, this is an approach that has no evidence of being superior to other far better studied approaches. I don't see how that would be a compelling treatment consideration in this setting.
-Dr. West