clinical tries or flofirinox

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clinical tries or flofirinox

by kangmeisheng on Wed Jan 02, 2013 08:56 PM

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I have stage IV pancreatic cancer spread to lungs which I found out 2 weeks ago. My oncologist gave 3 options:flofirinox, clinical trial of Gemcitabine with M402( a blood thinner) ,and clinical trial of Gemcitabine with. I don't know what to choose. I tend to go with what is know to what is unknown. Any advice? 

RE: clinical tries or flofirinox

by maxxschiken on Thu Jan 03, 2013 01:42 PM

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Folfirinoxwas the perfect chemo for my wife who was diagnosed with inoperable stage 4 pc with mets to her liver in July 2011 at the age of 57. Her consulting oncologist at UCSF provided clinical trials as well as Folfirinox but he strongly recommended Folfirinox because she was under 71, no prior heart conditions and had been physically fit having worked out at the gym doing cardiovascular, strength endurance and weight training for the passed four years prior to diagnosis.  Because of the severity of the diagnosis and how quickly this type of cancer spreads, we did not want to risk a clinical trial for fear of getting maybe some kind of placebo or drugs which have not been fully tested with any success rates.  At the time, folfirinox seemed to be the best choice for my wife so we went for it full speed!

She ended up tolerating 10 months/19 sessions/9.5 cycles of Folfirinox from August 2011 to June 2012 with very minimal side effects and surprisingly enough, no changes to her WBC's which baffled her oncologists. Nausea and vomitting were non-existent after the first cycle.  She was given EMEND (aprepitant) and ATROPINE during the first four hour infusion at the treatment center which kept her from those nasty side-effects.  She experienced a little bit of fatigue during chemo week and a sensitivity to anything cold. Taste buds were impaired making many of her favorite foods taste bitter and she just complained a lot about how funny her tongue felt slimy and thick. Other than that, she looked forward to treatment embracing each and every one of them.

The sharp pains in her middle back disappeared after the first couple cycles making the experience tolerable. Her initial pain was so bad at the time of diagnosis her oncologist prescribed the Fentanyl patch and Norco.  Seriously, she ended up throwing all those pain meds and never needed them again. 

Aside from all this, the results were nothing short of amazing.Folfir inoxalone without any radiation or anyother drugs with the exception of her medication to treat type II diabetes restored her liver to a healthy organ. The two spots measuring 1cm each on her liver vanished, 5cm tumor on the body of the pancreas reduced in size to 4mm and tumor markers dropped to 17 from 21,000+ after 6 months of treatments. After an additional 4 months of treatments, the tumor became a scar tissue with no metabolic activity, the liver remained free and clear and cancer antigen 19-9 tumor markers remained stable.  She lost somewhere around a pound a month for a total of about 25 pounds during the course of her treatment and by last June weighed only 90 pounds when she got her first scan detailing No Evidence of Disease and took a two month vacation to the Philippines.  She gained 12 pounds there and has maintained that weight until now. 

CTscans in June, September and December revealed no progressive metastatic disease, no tumor recurrence and a healthy liver.  Incidently, she has also been taking METFORMIN for the passed 6 years since diagnosed in 2006 with type 2 diabetes.  Recent clinical research and studies are now providing information and data recording the drugs ability to kill cancerous stem cells not targeted by chemotherapy as well as killing tumors and preventing them from recurring.  More info on this can be found on the internet at the American Association of Cancer Research and other publications as well.

Just last Christmas Eve she left for another 5 week vacation in the Philippines and on the following day completed a 10K marathon. She arrives back home here in the San Francisco Bay Area on February 1 and our plan Lord willing is to get her back to the gym for more cardiovascular, strength endurance and weight lift training.

Best of luck to you with whatever option you choose. 

 

RE: clinical tries or flofirinox

by Lostwife on Thu Jan 03, 2013 02:58 PM

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First, let me say that I am sorry for your diagnosis. Please stay strong and focused on fighting this disease. You have asked some very good questions and you should consider all of your options well before making any decisions. You should ask your doctor for all of the pros and cons of each of these options before making your decision. Unfortunately, you are the only one that can really make that decision once you have received all of the information on each option.

While I am neither a doctor nor a medical professional, I happened to learn more than I ever wanted to know about this disease when my wife was diagnosed in September, 2011 at 49 years old. Please understand that I am glad to share my perspective on your issue but please do not accept my views or observations in any way as to how you should decide to treat. Every person is different.

Contrary to the last respondent, my wife could not tolerate the folfirinox and had substantial side effects that really could not be managed well. During the course of her 6 cycles, she went from about 140 pounds to about 104 pounds. Eating and drinking and keeping food down was a monumental task. She slept a lot, had no energy and felt miserable. Many complications arose during her treatment such that the doctor determined that the folfirinox was essentially helping to kill her. He took her off the folfirinox and introduced gemzar and 5-FUwhich actually gave her 6 weeks where she felt relatively good. She was able to rejoin life, see friends, go out for lunch and dinner and there were no side effects. Unfortunately, the gemzar and 5-FU stopped working and she passed away in April, 2012 after a very courageous battle.

Like the previous respondent, I felt the same way and had the same concerns over whether or not to enter a clinical trial. I did not want to play Russian roulette with my wife’s life understanding that we really only had one shot at beating this disease. In hindsight, after seeing the disease progress and her not being helped by the folfirinox, I may have encouraged her enter a clinical trial when she was still strong and relatively healthy. It becomes more difficult to enter clinical trials as the disease progresses as there are certain thresholds that need to be met to be accepted into clinical trials. I would strongly encourage you to reach out to the Pancreatic Action Network. They are an incredible resource and can also point you to other clinical trials that may be available.

I’m sorry to just make the issue more confusing for you having received a message with wonderful results. From what I know, folfirinox is now the front line treatment for stage 4 pancreatic cancer. What I learned is that every patient reacts differently to different chemo therapies. You may be one that responds real well to the folfirinox if you choose that route but you will not know until you try. If you respond well, the folfirinox will help to keep you in the game as new advances are being made. Alternatively, understanding that this is a tough disease to fight, a clinical trial, especially one that is in phase 2 or phase 3 study may be worth considering as new medical advances are being made all of the time.

I wish you all of the luck in the world and please keep us posted on your decision and progress.  

RE: clinical tries or flofirinox

by sheann on Thu Jan 03, 2013 07:31 PM

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On Jan 03, 2013 2:58 PM Lostwife wrote:

First, let me say that I am sorry for your diagnosis. Please stay strong and focused on fighting this disease. You have asked some very good questions and you should consider all of your options well before making any decisions. You should ask your doctor for all of the pros and cons of each of these options before making your decision. Unfortunately, you are the only one that can really make that decision once you have received all of the information on each option.

While I am neither a doctor nor a medical professional, I happened to learn more than I ever wanted to know about this disease when my wife was diagnosed in September, 2011 at 49 years old. Please understand that I am glad to share my perspective on your issue but please do not accept my views or observations in any way as to how you should decide to treat. Every person is different.

Contrary to the last respondent, my wife could not tolerate the folfirinox and had substantial side effects that really could not be managed well. During the course of her 6 cycles, she went from about 140 pounds to about 104 pounds. Eating and drinking and keeping food down was a monumental task. She slept a lot, had no energy and felt miserable. Many complications arose during her treatment such that the doctor determined that the folfirinox was essentially helping to kill her. He took her off the folfirinox and introduced gemzar and 5-FUwhich actually gave her 6 weeks where she felt relatively good. She was able to rejoin life, see friends, go out for lunch and dinner and there were no side effects. Unfortunately, the gemzar and 5-FU stopped working and she passed away in April, 2012 after a very courageous battle.

Like the previous respondent, I felt the same way and had the same concerns over whether or not to enter a clinical trial. I did not want to play Russian roulette with my wife’s life understanding that we really only had one shot at beating this disease. In hindsight, after seeing the disease progress and her not being helped by the folfirinox, I may have encouraged her enter a clinical trial when she was still strong and relatively healthy. It becomes more difficult to enter clinical trials as the disease progresses as there are certain thresholds that need to be met to be accepted into clinical trials. I would strongly encourage you to reach out to the Pancreatic Action Network. They are an incredible resource and can also point you to other clinical trials that may be available.

I’m sorry to just make the issue more confusing for you having received a message with wonderful results. From what I know, folfirinox is now the front line treatment for stage 4 pancreatic cancer. What I learned is that every patient reacts differently to different chemo therapies. You may be one that responds real well to the folfirinox if you choose that route but you will not know until you try. If you respond well, the folfirinox will help to keep you in the game as new advances are being made. Alternatively, understanding that this is a tough disease to fight, a clinical trial, especially one that is in phase 2 or phase 3 study may be worth considering as new medical advances are being made all of the time.

I wish you all of the luck in the world and please keep us posted on your decision and progress.  

Diagnosed September 2011 - mets to the liver & nodes, 16 sessions of folfirinox, I did have bad side effects for the first few months but was able to tolerate, shrinkage 0f 30%, no treatment since June, scans every 3 months results show stable, due for another scan next week. Feeling good, occasional day very tired, aqua-fitness 3 times a week, gained back 20 pounds I lost.

Good Luck with which ever treatment you decide on, I truly hope it works.

Blessings Sheann

RE: clinical tries or flofirinox

by kangmeisheng on Thu Jan 03, 2013 09:20 PM

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Thank you for the response. I can't believe anyone will take time to respond to my message. I can't believe anyone will send me such a detailed and touching response. I read it twice and feel comforted by your genuine warmth and concern. I will go for Folfirinox. If it doesn't work I will switch to Gemcitabine combination. The 2 clinical trials are all on phase 1 with no known side effect or results. I will try it when I have no other choice. It might be too late but I am ready to accept. Thank you again for your response.

RE: clinical tries or flofirinox

by Lostwife on Thu Jan 03, 2013 09:50 PM

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Best of luck to you.  I guess all that I would ad is to monitor yourself closely as to how you are responding to the folfirinox.  As you have seen, some people tolerate it really well and that can be great.  If you do not tolerate it well, have fluid discussions with your doctor as to other options.  I really hope that the folfirinox works well for you!!  Now that you've made your decision, go forward with a 100% positive attitude that you can and will be successful in your fight.  Stay nurished as best you can.  Get supplements like Ensure and other protein bars to add protein to your diet.  Make sure to stay hydrated as well.  I have read so many heartwarming stories of people beating this thing and I really hope and pray that you do as well!!  Please keep us posted as we are all routing for you.

RE: clinical tries or flofirinox

by sheann on Thu Jan 03, 2013 11:15 PM

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On Jan 03, 2013 9:20 PM kangmeisheng wrote:

Thank you for the response. I can't believe anyone will take time to respond to my message. I can't believe anyone will send me such a detailed and touching response. I read it twice and feel comforted by your genuine warmth and concern. I will go for Folfirinox. If it doesn't work I will switch to Gemcitabine combination. The 2 clinical trials are all on phase 1 with no known side effect or results. I will try it when I have no other choice. It might be too late but I am ready to accept. Thank you again for your response.

Good Luck, as some one else mentioned, lots of fluids, most certainly ensure, I drank lots of milk which I didn't have a problem with, I found pasta easy to eat, egg custard which helped with the wight loss, my Oncology Doctor also reduced the treatment by 15% which helped a lot with the side effects, being a small frame 5ft height.  Any info I can give you please don't hesitate to ask, stay strong, be as positive as possible and prayers helped me a lot and still do which I will pray for you.

Sheann

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