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FOLFOX failed
Posted: Sun Dec 02, 2018 1:40 pm
by fdcfromkcmo
So my doctors are deciding the best course of action while they restage my cancer. They think its stage IV: a PET scan showed activity in my lungs & in my NECK... this Wednesday I have a neck biopsy... two words every 33 yo wants to hear weeks before Christmas.
They're advocating for radiosurgery on the lungs & we'll see what the neck biopsy yields. But because I finished treatment in May of this year, it all points to FOLFOX having failed because mopup chemo failed to eliminate any remaining cancer cells (my previous PET and CT scans showed no activity besides the main tumor.)
Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments? Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 3:51 pm
by Lee
fdcfromkcmo wrote: . . . Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.
So sorry to read about your latest scans. That is a hard pill to swallow. Yes do look into immunotherapy. Also not sure where you are, butt if you could get a 2nd opinion at a major cancer treatment center or major cancer hospital. You are young, and I would really push for aggressive treatment. Major treatment center are on the leading edge of the latest and best way to treat cancer.
Good luck,
Lee
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 5:59 pm
by CrossfitChick1980
My husband was diagnosed at 31 as well, so sorry for what you are going through. My husband was initially treated with just 5FU and a short month after finishing chemo, a spot on his liver lit up. His second line of chemo was FOLFOX and while it worked to get rid of his liver Mets completely, he had a few lymph nodes react and was switched to FOLFIRI and Avastin. That combo is what pushed him into NED. Now, he is going on FOLFIRI and Avastin again but we are going to a major hospital to discuss a clinical trial he may qualify for. Our only regret is that we didnt look into the power of supplements to help aid in this journey, but definitely looking into Vit C, milk thistle, etc.
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 6:20 pm
by cbsmith
I failed folfox back in early 2015 after 12 rounds. My stage 3 colon cancer spread to 1 paraortic lymph node and 2 lung mets. I started folfiri and did that for 2.5 years until it failed and the lung Mets grew and spread. I’m not doing any chemo right now and saw a radiation oncologist last week to see about shrinking down a little bit to get rid of a cough I have now. There isn’t much left in the way of chemo due to my genetics, but I got a good response from folfiri for a long time, although the side effects of it were getting pretty bad towards the end. We will see what the radiation oncologist says about my newest scans this week.
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 6:28 pm
by fdcfromkcmo
Thanks for the input. How does getting a second opinion at a major cancer center work when you are out of network? I'm willing to travel; I've paid for all my treatment myself and my family's offered to help with money. Really, I'm not so upset... I'm not in pain. Mostly just kinda sick to death of doctors, insurance, waiting for someone to call....
I have a pretty rigorous supplement regimen! Don't know if it's helped but started on aloe arborescens at the recommendation of a friend, so who knows? Maybe I'll get lucky
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 6:32 pm
by fdcfromkcmo
re: supplements, I don't think any of them could cure me, but many of them allowed me to tolerate chemo very well... b12, probiotics, mushroom compounds... I did great and recovered quickly from surgery! Too bad chemo was a waste of my time lol.
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 6:44 pm
by stu
Hi ,
First of all I am really sorry you are having to deal with this . I am not sure how oncologist decide something has failed as my understanding was chemo was better at shrinking solid tumours than dealing with microsatellite disease . My mum did first line chemo , had surgery but an immediate recurrence . She stayed on the same chemo regime as long as she had six months between first and second dose and achieved an incredible response the second time round which allowed surgery and led her to NED . On paper she would have been regarded as having failed treatment but in our books it shrunk the tumours again and was a roaring success which has lead to longevity!!!
Getting the best people involved early on was one of the best things my mum did .
At this point in time there is nothing to indicate that chemo can’t achieve great things for you . The most important thing at this stage is your chemo responsive.
I wish you every success with your treatment .
Take care,
Stu
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 7:41 pm
by Brearmstrong
Sorry to hear and I have similar path if you look at my signature. Folfox failed for me and folfiri only kept me stable but I was lucky to find a surgeon who took them out. I went into surgery knowing that it is likely to come back and then out of treatment options via chemo or immunotherapy options but just hoping it stays away on xeloda. Folfiri May be super successful for you!!
Re: FOLFOX failed
Posted: Sun Dec 02, 2018 8:59 pm
by rockhound
fdcfromkcmo wrote:Thanks for the input. How does getting a second opinion at a major cancer center work when you are out of network? I'm willing to travel; I've paid for all my treatment myself and my family's offered to help with money. Really, I'm not so upset... I'm not in pain. Mostly just kinda sick to death of doctors, insurance, waiting for someone to call....
I have a pretty rigorous supplement regimen! Don't know if it's helped but started on aloe arborescens at the recommendation of a friend, so who knows? Maybe I'll get lucky
Not sure were you have been treated and who you have been seeing, but (correct me if I'm wrong) KU med is good and a major NCI center - if you are from KCMO like name states...You may not have to travel very far and they could be in your network...
Re: FOLFOX failed
Posted: Mon Dec 03, 2018 12:04 am
by fdcfromkcmo
Thanks again... no one's given me anything to look forward to so nice to hear some success stories here
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!
Re: FOLFOX failed
Posted: Mon Dec 03, 2018 4:26 pm
by rockhound
fdcfromkcmo wrote:Thanks again... no one's given me anything to look forward to so nice to hear some success stories here
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!
Crap, that stinks about KU Med.. I would be trying there over Shawnee Mission, mostly cause the NCI designation.. I'm in Manhattan, KS but have had surgeries over there and all my follow-ups are with them. Good experiences overall so far.
Re: FOLFOX failed
Posted: Mon Dec 03, 2018 8:09 pm
by Cmac1275
fdcfromkcmo wrote:Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments?
I can only answer half of your question as I am in the same boat. But feeling optimistic nonetheless.
I had done 6 rounds of FOLFOX back in March through May 2018. I worked amazingly well. I was very much a distant borderline candidate for liver resection to get liver mets out. FOLFOX response made it possible. Unfortunately, I had an immediate recurrence two months later. We started FOLFOX again October 8th 2018. Did 4 rounds before restaging two weeks ago. CT scan showed two new very small spots, inflamed lymph node. Onc feels we’ve reached the end of the line with FOLFOX.
According to my oncologist, this is not atypical. One way to look at it is that FOLFOX has done everything it can to attack cancer cells that are sensitive to it. What’s left in my body is resistant to FOLFOX. So it’s time to change regimen (FOLFIRI).
It’s good you are taking supplements. They aren’t a cure, but great as a supporting adjunct treatment. Heck, I’m feeling great and back to doing my P90X workouts. I really believe the supplements help. I’m 42 and have been told by my medical team that my age and overall good health are key strengths, allowing more aggressive treatment options. Keep your head up. You have some key advantages in your favor already.
Re: FOLFOX failed
Posted: Tue Dec 04, 2018 6:52 am
by Stewsbetty
fdcfromkcmo wrote:So my doctors are deciding the best course of action while they restage my cancer. They think its stage IV: a PET scan showed activity in my lungs & in my NECK... this Wednesday I have a neck biopsy... two words every 33 yo wants to hear weeks before Christmas.
They're advocating for radiosurgery on the lungs & we'll see what the neck biopsy yields. But because I finished treatment in May of this year, it all points to FOLFOX having failed because mopup chemo failed to eliminate any remaining cancer cells (my previous PET and CT scans showed no activity besides the main tumor.)
Has anyone else experienced FOLFOX as a failed frontline treatment & can share stories of successful second line treatments? Depending on what happens with my biopsy, I'd like to talk to my doctor about immunotherapy but don't know what genetic testing revealed & if I'm eligible.
I did 12 rounds of Folfox and my follow up scans showed cancer still there. It is discouraging to go through all that to find out it didn’t work. Then I did 2 rounds of Folfiri and the Mets continued to grow and spread through chest and neck. I am MSI high so I requested Keytruda and it has worked wonders in my body. Definitely check out your tumour type to see if immunotherapy is an option!
Beth
Re: FOLFOX failed
Posted: Tue Dec 04, 2018 5:54 pm
by rockhound
rockhound wrote:fdcfromkcmo wrote:Thanks again... no one's given me anything to look forward to so nice to hear some success stories here
I am in KCMO, unfortunately KU Med and Shawnee Mission Hospital (part of MD Anderson) are out of Network, partially because of the MO/KS thing...!
Crap, that stinks about KU Med.. I would be trying there over KU Med, mostly cause the NCI designation.. I'm in Manhattan, KS but have had surgeries over there and all my follow-ups are with them. Good experiences overall so far.
Re: FOLFOX failed
Posted: Thu Dec 06, 2018 7:19 pm
by henry123
Hello
Sorry to see you here.
Capox and various other chemos failed in my case. Finally immunotherapy worked for me.
I am not from US so can't advise cancer centres to go to but definitely try to get opinion at a major centre.
Best of luck.