My father (he is a 70 year old Indian citizen in India) was been diagnosed with NSCLC Stage IV (Adenocarcinoma) in January 2009. At that point of time, He took 6 cycles of chemo with Carboplatin, Paclitaxel
and Zolendronic Acid.
Later he was put on Gefitinib (pill) once every day. He took that for about 5-6 months. After that Dr. changed the pill to Erlotinib which he took for another 5-6 months. After that when his condition deteriorated further, Dr. gave him 1 cycle of chemo with the medicines: Oxaliplatin and Irinotecan. After this chemo, my fell severely sick (for once we all thought he would not survive) and was hospitalized for almost 15 days. It impacted his kidneys really bad. After further research, I learnt that these
medicines are not at all meant for lung cancer.
A new Dr. re-started dad's chemo with 3 cycles of Pemetrexed and Carboplatin. These cycles of chemo resulted in dad's blood count and protein levels come down. So he was given almost 7 units of blood and 2 units of albumin. Since his reaction was creating more issues for dad, after these 3 cycles, he recommended that dad continue to take chemo of only Pemetrexed for another at least 12 months which he did. Recently, he underwent CT scan and blood work in India. It seems his cancer has spread to his liver also.
Based on these reports, Dr. has advised that we should try the Pemetrexed and Carboplatin combination once again as it gave good response earlier. Dad has undergone 3 cycles of this 2nd round of
Pemetrexed and Carboplatin. He has told me that next 6 months are going to be difficult and he is not sure what response dad will have to these medicines this time around. He has also told that there are not many medicines left after this. I wanted to see if there is away I can buy XALKORI here in United States and ship them to him in India? Are there any other options that we can try? Please advise.
Reply # - September 3, 2012, 08:29 AM
Reply To: Availability of XALKORI
Dear Vishal, I'm very sorry to hear the difficult time your father has had. Thank you for you question and I'm sorry we've not responded to your thread sooner.
I will ask a doctor to respond to your thread as soon as we are able. It is a holiday in the U.S. so it may be a few hours from now.
Could you let us know if your father has had any genetic testing. Xalkori has only been found to have efficacy in those with the ALK rearrangement.
Janine
forum moderator
Reply # - September 3, 2012, 08:56 AM
Reply To: Availability of XALKORI
Dear Janine,
Thanks for your response. At the time of first diagnosis in January 2009, a biopsy was performed on his right knee where it has metastasized and which was first observable symptom in his case. Recently (in August 2012), we requested ALK test performed on that tissue. We got the test report last week that, because of the quantity and quality of the biopsy tissue, there is no conclusive diagnosis whether his tumor is ALK positive or not.
Also, his current cycle of Pemetrexed and Carboplatin seems to be providing some positive result, but my father feels very weak and is quite depressed with all the different injections that he has to take either for chemo or for other conditions like low RBC count, low protein count, blood transfusion, etc. I was hoping to try Xalkori as his profile matches with the demographics that seem to derive most benefit of Crizotinib. He has been a non-smoker throughout his life with metastasized NSCLC adenocarcinoma, almost all other drugs have been used except Gemcitabine (about which I came to know only yesterday). I visited a CVS pharmacy in US yesterday and they informed me that a month's supply of Crizotinib will cost me $11,000.00, which is way too expensive for me.
Look forward to hearing from you and the doctor about all possible options at this point in time for my father with all the different drugs already used.
Reply # - September 3, 2012, 09:09 AM
Reply To: Availability of XALKORI
i wonder why there is a continuation of the platinum drug especially since your dad is having such a difficult time with it.
Dr. West stated in another thread, "Yes. First, it is very customary to stop the platinum-based combination after 4-6 cycles, and there is no established benefit to continuing a two drug chemo combination beyond that point for advanced NSCLC. As the nurses said, such a reaction to carboplatin is common, particularly after more and more treatments, so continuing it beyond that point is problematic, and there are other treatment options to pursue." 2 other oncs also note the problems of more than 6 cycles of treatment with the platinum drug on this thread. http://cancergrace.org/lung/topic/carboplatin-hypersensitivity-reaction/
Perhaps after a couple of years people become desensitized?
Reply # - September 3, 2012, 11:42 AM
Reply To: Availability of XALKORI
As you learned, XALKORI (crizotinib) is in the range of $10,000 or more per month, so not very feasible without insurance coverage, and of no established benefit in someone in whom we don't know of their ALK mutation status. If it is possible to get ALK rearrangement testing, that'd be valuable, since it's far more common in never-smokers, and if it were detected, it could provide a much stronger case for getting XALKORI.
Here's a link that discusses the treatment options we generally think of for patients who have already received and progressed on prior chemotherapy:
http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
He hasn't received Taxotere (docetaxel), which can sometimes be effective in previously treated patients, and otherwise the options like gemcitabine are a consideration, could possibly be helpful, but have no established benefit. At the same time, there is a very real danger that overtreatment -- treating with more therapy than is helpful and that he can tolerate well -- becomes a very real risk for actually making him both miserable and perhaps even shortening his survival. If a person can't maintain their weight and activity level reasonably well during treatment, it's very possible that the treatment itself is causing more actual harm than good. If a person is really declining, it's wrong to presume that it does them a service to receive treatment after treatment after treatment.
Good luck.
-Dr. West
Reply # - September 3, 2012, 02:27 PM
Reply To: Availability of XALKORI
Dr. West:
Thanks for taking time and responding to my father's case. I completely agree with your point that certain point in fight against this disease, we have to decide whether the treatment will do more bad than good to the patient. The only reason why I am trying to explore other options are because as weak as my father feels today, he is still able to walk around and for most part able to do his own work without much help. I have been in constant touch with his oncologist in India and he also feels that the latest 3 cycles of pemetrexed and carboplatin do show some signs of improvement in his condition, but he wants my dad to undergo CT about 10 days from today to understand whether there is really any shrinkage in the tumor or not. We are hoping that it will bring some positive news for us.
I do wanted to know if you suggest we do another biopsy to check for ALK rearrangement or not. Please advise.
I will consult with my Dad's oncologist to let him know about your suggestions. Thanks once again. I will continue to post what I learn. Hopefully with your suggestion and my father's oncologist, we will be able to bring some improvements in my father's condition.
Reply # - September 3, 2012, 07:55 PM
Reply To: Availability of XALKORI
I can't really make recommendations for someone who isn't my patient. What I would say is that if there is anyone who has a fair chance of testing positive for an ALK rearrangement, it's a never-smoker with an adenocarcinoma and neither an EGFR mutation nor KRAS mutation. These are patients in whom I am inclined to seek additional tissue to rule out an ALK rearrangement, since XALKORI can be so beneficial and it's essentially infeasible to obtain without having a documented ALK rearrangement.
Good luck with the upcoming scan. I'm glad his oncologist is encouraged.
-Dr. West