View Single Post
Old 03-07-2016, 07:04 AM   #17
Joan M
Senior Member
 
Joan M's Avatar
 
Join Date: Oct 2007
Posts: 1,851
Re: discovering why some Stage IVs are exceptional responders to herceptin/lapatinib(

Thanks for posting this information. I guess I would be considered to be a long-term survivor since I've been NED since Oct. 2008, after having two lung recurrences and one brain met. I'm still on Herceptin.

I think I'm a long-term responder, but most oncologists probably wouldn't think so, since I reached NED through a combination of systemic treatment (Herceptin) and local interventions--surgery and RFA.

That's the dilemma.

I have oligometastatic breast cancer: see University of Chicago, Ludwig Center for Metastasis Research: Oligometastasis, a curable subset of metastatic disease (can't get link to work here in this post). And several of you who have been on this site for a long time know that I've mentioned this many times before.

Oligometastatic breast cancer is consider to be confined to 1 or 2 organs, with 5 or fewer mets in each organ.

I read about this in 2007 and firmly believed in it--especially in the age of targeted drug therapies (of which we HER2 survivors didn't have much back then). We are now so lucky to have several drugs in our toolbox! And think how many more of us could be long-term survivors if perhaps we used local interventions along with anti-HER2 therapies.

But, no. Most oncologists wouldn't dream of it, unless it's a last ditch effort (we've thrown the book at you and now your down to the end, so we'll ablate some of those liver tumors, because we have no other options).

Think of how frustrated we all get because we're excluded from clinical trials due to having had too many lines of therapy. That's right: the scientists want met survivors who perhaps haven't had any lines of therapy in the metastatic setting. But those same survivors probably have limited disease and would be able to use local interventions.

Then there's the snobby patients: those of us who would never dream of using a local intervention and who are most likely treated at a big fancy institution (that's ok. I fired Sloan-Kettering after a medical oncologist there tried to stop the RFA of my lung in 2008. The RFA has probably contributed to saving my life--at least up to this point, because I never consider myself cured. Sloan-Kettering couldn't care less about local interventions, unless of course you're at the end of your rope).

The best time to do it is from the get-go (like I did) or when you're stable, because eventually, the cancer is going to work it's way around the drugs that you're taking.

So, you can imagine how many more of us could be long-term survivors if you look at the stats in the article that Lani posted.

Clinical trials using radiation for only breast cancer mets. According to the first trial listed below:

"This randomized phase II/III trial studies how well standard of care therapy with stereotactic radiosurgery and/or surgery works and compares it to standard of care therapy alone in treating patients with breast cancer that has spread to one or two locations in the body (limited metastatic) that are previously untreated."

https://clinicaltrials.gov/ct2/show/...2364557&rank=1

https://clinicaltrials.gov/ct2/show/...1706432&rank=1

It seems as if U of Chicago radiation has been able to get through to the breast service there. Otherwise, they wouldn't be able to recruit enrollees.

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 03-07-2016 at 07:29 AM..
Joan M is offline   Reply With Quote