My husband diag 6/2014 stage 4 nsclc adenocarcinoma. Tarceva 7/2014. Mixed results 8/2014. 9/2014 began Tarceva/Alimpta combo. Handled well with mixed results through 4/2015 then "early progression" noted. 5/2015 Carboplatinum. Progresssion. Taxel and Abraxane 7/2015. Progression. Opdivo started 10/20/15. Brain mets first appeared on scan 10/28/15. 10x Whole Brain Radiation 11/2015. Stopped Opdivo (5 treatments) 1/2016 as brain scan of 1/4/2016 showed more brain mets. Started Irinotecan chemo (to break blood brain barrier) 1/14/16. 1/19/16 - 1/21/16 hospital pneumonia. No treatment since. So here we are. Treatment hasn't stopped, but his counts are low and will check him in 2 weeks. Also has severe cachexia. He is up most of day, although only on a recliner, needs wheelchair outside of house. Averages 2300 calories daily (shakes), no desire for solid food. His mind is sharp and he's still entertained by family, friends, movies, politics, games, and LIFE. We know it's close to the end, but he's still so full of life and wants to keep fighting.
There has been discussion about Tagrisso, but told he can't have biopsy (too weak), and blood sample not allowed, but I've heard a blood sample is allowed so not sure what to do. My main questions/requests: 1) any help on Tagrisso info please, can he be tested with blood sample; and 2) where can we go...is it worth looking at other options, different centers? We are at Arizona Cancer Center Tucson right now. They've provided great care, but there seem to be some delays all of a sudden, and only seeing NP now, not oncologist. Are they done with us?
Any help appreciated!
Reply # - January 30, 2016, 02:56 PM
Hi ginam, I'm very sorry your
Hi ginam, I'm very sorry your husband is in this position. We can't say what your husband's doctors are thinking though it's always good to ask them directly. It would be important for an oncologist to discuss options with his/her patients, whether anti cancer treatment options or comfort care only options.
You've brought up 3 issues from what I gather. The first, is it possible to be prescribe tagrisso with positive blood test. The problem is the blood tests are new and not yet as accurate as tissue testing. However both have accurate positive results and both have some false negative results. I will ask a faculty to comment on whether or not some specialists are using blood testing. It will make life sooo much better when it is used in more situations where tissue testing is now standard.
2. It's never a bad idea to get a second opinion from a lung specialist at a major cancer center. This is an important blog post by Dr. Weiss on 2nd opinions, http://cancergrace.org/cancer-101/2011/11/13/an-insiders-guide-to-the-s…
3. You didn't specifically ask about stopping treatment but did bring it up and it's an important option that will happen. It's important to understand that stopping treatment and employing hospice care isn't "giving up". It's finding the place at which anti cancer treatment is more harmful than helpful. Comfort care, which is what hospice does works with patient and family to live life as well as possible. Even if at some point the person wants to stop hospice and move back into anti cancer treatment. One more thing I want to say about this is studies show people live "longer" and "more healthy" lives when they work with palliative care along with anti cancer treatment team and work together to move into comfort only care. It's NOT giving up a fight. It's living better.
I hope you get the answers you need to make a best decisions.
Janine
Reply # - January 30, 2016, 04:22 PM
I don't think anyone online
I don't think anyone online can address what is happening at the cancer center -- perhaps you can ask them directly.
Serum testing for T790M from a blood sample is definitely possible, and I've seen a positive result for T790M lead to Tagrisso, but it's not the standard of care at this time, and I wouldn't bank on an insurer covering testing of blood. There are MANY vendors doing testing, ranging from Guardant Health to Biocept to Foundation Medicine and others. Because the real issue here is really primarily whether he has a T790M mutation or not, it might make the most sense to look at a lab that will do just that for a few hundred (I think Biocept does individual tests as a cost-effective option, for instance, but there are others) rather than doing a long list of tests for thousands of dollars.
Good luck.
-Dr. West
Reply # - February 9, 2016, 09:29 PM
Thank you so much...I'm
Thank you so much...I'm learning a lot here at GRACE. I should have mentioned my husband's cancer is in his bones, liver, adrenal, in addition to lung and brain mets as I mentioned.
I truly appreciate the comments on hospice as we just started hospice a few weeks ago...my insurance allows palliative care along with continued anti-cancer treatment. I only thought of hospice as end-of-life care, thus was hesitant, but it has truly been a blessing as they've helped with equipment, medicine, and twice weekly visits give us a bit of a measurement of how my husband is doing. They have been extremely helpful.
I meant to ask...does Opdivo and/or Tagrisso penetrate the blood brain barrier? I've heard yes and no. My husband had just started Opdivo (only 5 treatments) and they switched to Irinotecan chemo because of the brain mets. After the first chemo, he ended up in the hospital with pneumonia.
Thank you again!
Gina
Reply # - February 10, 2016, 07:00 AM
Hi Gina,
Hi Gina,
There is encouraging evidence that Tagrisso does cross the blood brain barrier fairly well, although it's mostly anecdotal evidence. So it's not surprising that your husband's doctor switched him to irinotecan, which has a more establised track record for CNS disease. I'm sorry that he had trouble tolerating it.
JimC
Forum moderator
Reply # - March 19, 2016, 01:38 PM
I'd like to know about the
I'd like to know about the timing in taking Tagrisso. The information sheet that came with the drug said it could be taken either with or without food. However, patients in the clinical trials said that they were instructed to take it on an empty stomach, so I am confused. Also, I am taking medical cannabis (legal where I live), and wonder if there is any data on whether this could interfere with the effectiveness of the Tagrisso.
Reply # - March 19, 2016, 02:06 PM
Hi Grand,
Hi Grand,
All trials have there own set of rules and for whatever reason the one or ones you've looked into have that rule, maybe to make sure everyone is getting the same dose absorbed in for equal testing results. Unless you're on the trial it doesn't matter. People often develop nausea due to taking these type medications on an empty stomach but can take them with food and still have excellent efficacy.
Although there hasn't been terribly extensive testing on cannabis and probably none with tagrisso there is no suggestion that it would have harmful effects with tagrisso.
I hope you do very well for a long time with tagrisso.
All best,
Janine