Hi All,
First of all this is a great site and I have been reading so many informative posts on this site.
I am 41 yrs old, diagnosed with Stage 4 Adenocarcinoma with ALK in Feb 2013; Main tumors were in the lungs, and Lymph Nodes. Both sides of my family have long life experiences and there is no ancestry of cancer in my family. Dad passed away from a stroke in 2007 when he was 75+ yrs and my mom is still alive and well at 72+.
I am getting treated at Sloan Kettering in NYC since March 2013 - started off with Xalkori (Ciroztnib) and was part of the STA-9090 trial. The first 2 scans post the treatment began showed terrific results with nearly 70% reduction in the Lung Tumors and about 60% reduction in the tumors in the Lymph Node. The 3rd scan was stable, but starting from the 4th scan we started seeing deterioration - I started having severe back pain and a baseline MRI indicated significant growth in the T12 and L5 vertebrae, for which we underwent radiation. The doctor said that the radiation was a big success since they were able to radiate 99.9%of the tumor. The back pain has also reduced significantly. However, the scan in Jul 2013 indicated 3 new new hepatic lesions, a 0.4 cm low-density lesion at the hepatic dome, 0.9 cm lesion in the lateral segment of the left hepatic lobe and 0.8 cm lesion in the right hepatic lobe. There also developed a significant clot & severe pain in the right leg. My Onc expedited the latest CT scan based on the clot and sure enough, we have discovered 2 new spots in the Liver in addition to growth in the 3 older ones. The Lung spots are stable, as well as the lymph nodes - only 1 spot grew by 0.1 mm.
Today, my Onc has stopped STA-9090 and is putting me on Alimta+Cisplatin+Avastin Combo.
I had also requested them to see if we could do a RF Abalation before we start the new CHemo routine but was told that the systemic chemo was the preferred choice since I am battling the multiple tumors.
Any suggestions or advice for me pls?
Reply # - September 20, 2013, 06:48 PM
Reply To: First Level – Crizotnib+ Sta-9090 Failed
Hi rajp,
In the face of metastatic lung cancer, the faculty here does not express enthusiasm for RF ablation:
Dr West writes:
“…this is an idea that doesn’t have a sensible rationale for the vast majority of people with metastatic NSCLC. It has a very limited track record and can only treat an individual area, which is rarely helpful when someone has metastatic, multifocal disease.”
Dr Weiss adds:
“For someone with stage IV lung cancer, I strongly agree with Dr. West that RFA simply doesn’t have a role to play.” - http://cancergrace.org/forums/index.php?topic=11045.0
It certainly makes sense to switch to an established first line regimen after developing resistance to Crizotinib. Another option after that would be a clinical trial of an agent which seeks to overcome that resistance: http://cancergrace.org/lung/2013/09/03/asco-2013-2nd-generation-alk-inh…
JimC
Forum moderator
Reply # - September 20, 2013, 07:27 PM
Reply To: First Level – Crizotnib+ Sta-9090 Failed
I agree with my earlier self (and Dr. Weiss) that RFA or any other local therapy have no biological rationale when progression is occurring in many locations. Not only do these approaches have no evidence to show they help, it's very hard to imagine how they would.
Chemotherapy, such as the platinum doublet you noted, is a very sensible approach for multifocal progression over the past few months. Avastin (bevacizumab), however, has been associated with increased risk of both bleeding and clotting, so many oncologists would not favor adding this if someone has a new significant clot and is just starting on blood thinners. I would consider the risk from addition of Avastin here to exceed the rather questionable benefit conferred from it, especially since several trials with it in lung cancer have failed to demonstrate a survival benefit when it was added, even if one particular trial has done so. I think most lung cancer experts would consider Avastin to be an option to consider, definitely not a mandate for most or all people, and many would be cautious about giving it in the setting of a new large and symptomatic blood clot.
Another option to consider is a second generation ALK inhibitor or some other trial for ALK-positive patients who have progressed on prior crizotinib (I have a trial of a heat shock protein inhibitor from Daiichi-Sankyo known currently as DS-2248, though I'm pretty sure someone who received a prior heat shock protein inhibitor like STA-9090 wouldn't be eligible). In my mind, the recommendation of whether to recommend another ALK-based therapy vs. a change in focus to a new angle like chemo depends on the depth and duration of response to prior ALK inhibitor therapy and the pace of progression on it more recently. Given that the benefit of prior crizotinib-based therapy in your case is essentially just a few months and there's now several areas of new disease popping up, I think a new direction such as chemo is very sensible.
-Dr. West
Reply # - September 21, 2013, 05:42 PM
Reply To: First Level – Crizotnib+ Sta-9090 Failed
JimC/ Dr West - Thanks for providing a very logical explanation. This validates the direction of my Onc and also seconds what we were thinking. It is definitely disappointing that my ALK inhibitor therapy lasted so less; was definitely hoping for a longer, more prolonged stable cycle. That being said, there were some initial positive responses; so we are hoping that I respond better to the Avastin/Alimta/Cisplatin trifecta.
Dr West, one quick clarification, I have been on blood thinners (Arixtra) since March, 2013 without a break. Did take a break for 3-4 days as part of the radiation therapy, and that immediately seems to have caused this new clot in the right leg.
My Onc also clarified that I cant get onto the LDG or Chugai ALK trials unless I am already on Chemo, and she hopes to get me on one of them after the trifecta is administered. I am assuming that this will be 4 or 6 doses that I get administered.
For the other forum members - is there a link or any advice that I can follow when preparing for the Chemo cycle to begin? I am going to start this from Thu (Sep 26), so while I am preparing to stay hydrated as much as I can, any thing else that I can do that will help me? Any advice is appreciated, especially around Platelets count and dealing with post chemo experiences.
Much appreciated in advance....
Raj
Reply # - September 22, 2013, 09:20 AM
Reply To: First Level – Crizotnib+ Sta-9090 Failed
Thanks for the clarification. To me, your history indicates that you have a significant proclivity for blood clots that would make me more wary about giving an agent like Avastin that can lead to thromboembolic or bleeding complications. Still a debatable question, though, of whether Avastin should be included, and I suspect any panel of experts would have people on either side of the argument.
-Dr. West
Reply # - September 22, 2013, 09:39 AM
Reply To: First Level – Crizotnib+ Sta-9090 Failed
Raj,
There is a booklet from the National Cancer Institute that might be helpful, called "Chemotherapy and You". You can find it here: http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you
A number of web pages give advice on various aspects of preparing for chemo. Here are some examples:
http://www.cancer.med.umich.edu/cancertreat/treatment/chemotherapy/prep…
http://www.webmd.com/ovarian-cancer/features/15-nutrition-tips-chemo
You can find more by searching the web for "preparing for chemotherapy".
Also, your cancer center may have some printed material that they will give you at the time of your first infusion. If you ask, you can probably get a copy prior to that date.
JimC
Forum moderator