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Poor prognosis

Erica2016's picture
Erica2016
Posts: 17
Joined: Oct 2016

Hi everyone, I need a few words today. I received a call from my oncologist and he gave me a bleak prognosis, stated that I am not a candidate for surgery and I will be on maintanance chemo for what forseable future I have. I have been with my oncologist for four years, and this is the first time I feel the need to ask for a second and third opinion. I will also have to start looking into clinical trials. If there is anyone out there that can suggest trials or recommend an oncologist in Southern California , I just need some guidance. This is my second recurrance, first in my liver than 3 mets in different lobs of my right lung, my mutuation is Kras (TP53I). I am 35, and receiving the news that I am not a candidate for surgery , with a poor prognosis really took me a back. Anywords or guidance you can offer, thank you . 

abita's picture
abita
Posts: 830
Joined: Dec 2017

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's picture
Erica2016
Posts: 17
Joined: Oct 2016

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. 

abita's picture
abita
Posts: 830
Joined: Dec 2017

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. 

abita's picture
abita
Posts: 830
Joined: Dec 2017

Did your oncologist say poor prognosis or are you saying that because lifetim chemo?

Erica2016's picture
Erica2016
Posts: 17
Joined: Oct 2016

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

abita's picture
abita
Posts: 830
Joined: Dec 2017

That isn't cool. Mine have never said that to me. They always want me to be positive and have hope. 

myAZmountain's picture
myAZmountain
Posts: 344
Joined: Apr 2018

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.

abita's picture
abita
Posts: 830
Joined: Dec 2017

I have probably asked a few times, but my scans are the same, stable and nothing new. Curious to know what protocol you are on to keep at stable and nothing new. Soooooooooo frustrating that lung mets don't seem to shrink, although I am over the moon happy when I hear stable and nothing new! :) 

Real Tar Heel
Posts: 113
Joined: Nov 2019

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/

DeeFL
Posts: 1
Joined: Oct 2020

I've heard of a trial for a newer drug, MRTX849, maybe you could ask your MD about it? All the best to you!  

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

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.

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Oncs aren't qualified to give surgical advice/suggestions.  Maybe seek 2nd/3rd consults with oncs as AZmountain suggests and also consult with 2-3 highly reconized surgeons and ask them what will it take to get to a surgical point with bloodwork and scans.  I have found you don't get all your answers in one place!

NewHere's picture
NewHere
Posts: 1205
Joined: Feb 2015

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 Laughing)

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."  Laughing

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.  

Annabelle41415's picture
Annabelle41415
Posts: 6549
Joined: Feb 2009

I'm so sorry to hear this news.  The only advice that others have shared is get another opinion.  You might love your doctor, but it doesn't hurt to get another opinion.

Kim

Real Tar Heel
Posts: 113
Joined: Nov 2019

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.

SnapDragon2's picture
SnapDragon2
Posts: 321
Joined: Nov 2019

Thats great you didn't haven't trouble, Real Tar Heel.  I started out high dose and phosophrous jumped so had to back off it.  I am back on it but just not at such a high dose.  I was disappointed for sure that my body did that to me.

Can I ask what dose you atarted at?

Real Tar Heel
Posts: 113
Joined: Nov 2019

3 x 10,000 IU/d for a week, then 1x/d. Just had a blood test a few days ago, all normal (even my CEA! for now).

I've read that exposure to the sun for an hour, is the equivalent of 15,000 IU (that probably presumes being out in shorts and a t-shirt, lol). I certainly have not been spending much time outside in the last year except for the periods in between surgery and chemo.

The most recent successful study involved chemotherapy patients. So then, is the benefit that they weren't getting enough D3 naturally, since we are less likely to spend time outdoors? I don't know that the study answered that question.

feckcancer
Posts: 123
Joined: Jun 2018

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

 

Canadian Sandy's picture
Canadian Sandy
Posts: 654
Joined: Jul 2016

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.

Tom M.
Posts: 158
Joined: May 2019

Erica, We all here know how your heart aches right now. I can only tell you to stay positive and up beat. It goes a very long way in your struggles. I've read all these post and everything everyone is saying to you is right on. I know it all seems like so much now but if you take a day at a time you will make your way through this maze. You are in my prayers and I hope  the best out come for you.  Tom

impactzone's picture
impactzone
Posts: 541
Joined: Aug 2006

Stage 4 guy here and I have had 4 thorcic surgeries over the last 14 years. These were all done at Stanford. Perhaps making an appointment with a thoaric surgeon and/or onc. 

All my best

Chip 

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