Poor prognosis

Are you a candidate for immunotherapy? Or a targeted drug? I too have had mets in my liver, and now have 3 mets in my right lung. I am on erbutix with irinotecan. You should definitely get a second opinion. I understand cutting it out is better, but there are some of us who only have continuous chemo a an option who live happy lives. And you never know what might be discovered. I am hanging on knowing my cure will be discovered. 

Erica2016 said:

are you a candidate for

Hi Abita, my doctor said that Immunotherapy does not work for my cell mutation and did not suggest any other targeted drug. I will be going back on Folfori, 5FU , Avastin, irinotecan and Oxaliplatin as it worked well for my liver met- This cocktail for 12 sessions and 5FU with avastin for maintanene. I am hanging on too Abita, what a ride. 

wow, that is a lot. So yeah, guessing lots of side effects will make it rough. Avastin is a targeted drug. I am not sure what side effects that has, so can't know if what I am about to say helps, BUT, hopefully, once you get to mainetenance, it will be a lot easier. I think you should ask about how bad side effects are for most on only 5FU and Avastin. Not gonna lie, i am super duper fatigued a lot of the time, but my current protocol is so much easier than when I was on fofox. I was allergic to oxaliplatin, so was taking it on a desentization plan, and whew. 

Erica2016 said:

He said poor prognosis Abita,

He said poor prognosis Abita, definetly did not provide some hope this time. 

I had a young arrogant oncologist from Mayo in Phoenix over 2 years ago tell me the same thing--, and I am 61 not 35, so your chances are much better --he said do not plan more than a year out and that was over 2 years ago. I just had a 6 month scan and my lung nodules (mets)are stable and nothing new an nothing grew, almost 3 years from diagnosis, surgery and chemo.  Read "how to starve cancer" by Jan Mclelland and do not give up.

There was some recent research that showed high doses of Vitamin D slows the growth of tumors. Whether or not it works there's nothing to harm by trying it, not particularly dangerous and relatively inexpensive. Here is a link for one trial finder. Wish you well. http://trialfinder.fightcrc.org/

Be careful with the high dose vitD.  It can be done but  you need to graduate up to a high dose.  Starting off high in the beginning can imbalance calcium and phosophorus resulting in renal trouble.

Sorry to hear about this.  I also have KRAS mutation and MSS.  Immunotherapy was definate no back in 2017, but studies were being done and continue to be done.  Though there is not a trial for my combination, others are being looked into where there were once "No." 

My profile has more details about me - Stage IV, tumors in lungs, spine.  FOLFOX 2015  Part of lung removed 2016.  Inoperable recurrance 2017.  FOLFORI and Avastin Fall 2018 to December 2019, FOLFORI stopped working.  Covid stopped trials.  Started Lonsurf to try to hold things down until trials opened. Not once have I been told I have a bad prognosis.  Always being told to look at options. 

I am at MSK and they told me to check out Yale and Dana for trials there. Thought MSK runs tests on about 430 genes/markers (https://www.mskcc.org/news-releases/msk-impact-first-tumor-profiling-multiplex-panel-authorized-fda-setting-new-pathway-market-future-oncopanels ) Yale ran their tests and picked up on some other things.  So if/when Lonsurf stops working, I move into a trial.  If that does not work, they already know I have a BRAF mutation where certain drugs have a high success rate.  Check out trials at NIH site.  

https://www.cancer.gov/about-cancer/treatment/clinical-trials/search

It is completely understandable that what your oncologist told you would throw you for a loop (it happens to all of us with this), the key is try to not let it get you too far down or throw you too far off.  Take a breathe, collect your thoughts and start looking. Check out the trials.  Find out what tests have been done.  The one thing to consider is not getting too focused on just Southern California.  Expand your search to see what is out there, and if you find something you can plan accordingly.  (Not that it is easy if geography is not optimal, but looking at the big picture first is the way I would go.) 

As to what I have been doing - I have been exercising a lot since the recurrance. I have close to 80 tumors in my lungs, and biked 10-15 miles on a trainer 3 out of the last 4 days. I should be on the couch on oxygen a long time ago.  But I am probably healthier than most.  Well with one little medical issue )

I was always a pretty good eater, I love fruits, vegtables, grains and do not eat much red meat, but I double check before having something I know is "bad".  Do I really want it?  So I still will have something now and again, like dessert or a drink, but will take a pass.  I think ""how many miles do I have to run to burn off those calories?  Pass."  

I also semi fast 16:8.  There is a lot of discussion on sugars and cancer.  But there are many days where I am not hungry in general, so I will extend not eating.  Does it help?  Don't know. But it is low risk/high reward it seems. If I am hungry I will eat.  But often find I go 12-16 hours not eating (including sleep time) and do not miss it.  I'll have a cup or two of coffee or tea.  I do not do it the two weeks I am on chemo.  The Lonsurf requires some food with the pills morning and evening.   

As to supplements and other things, check with the doctors.  Some things can be contraindicated.  I have a good integrative doctor at MSK as part of my group of doctors.  I clear with her before using items.  For instance, I got a medical marijuana card though I never used it. Didn't need it.  But while I was on FOLFORI I was told to use THC rich items and avoid CBD  which may increase adverse effects of irinotecan.  

We are all here to help and support you.  You are young.  Try to stay positive.  And looking forward to you posting some good news soon.  

In the Vitamin D3 study, the patients started high for two weeks and then reduced the dosage to continue taking it over a long period. The dosage when reduced was much higher than the amount you are likely to find in your multivitamin. Most of us here are regularly monitored by physicians, especially organ function markers.

I've been taking high doses since my last surgery, kidney function is normal.

This drug & company are starting human trials this year and the lead up trials are apparently showing promise. combination Australian/USA . Here is the link to the website but to search for more  infomation google CF33 and Imugene (company name) . I hope this is helpful for you

https://www.imugene.com/oncolytic-virus

Best of luck to you Erica. I also have an arrogant oncologist who told me my cancer was in my lymph nodes and surgery was not an option. Here I am 4 1/2 years later. Never give up and be positive as that really does help. My prayers are being sent and know your in my thoughts. Keep us posted.