Poor prognosis

Erica2016
Erica2016 Member Posts: 47 Member
in Colorectal Cancer #1

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 . 

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Comments

  • abita
    abita Member Posts: 1,152 Member
    #2
    Are you a candidate for

    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. 

  • abita
    abita Member Posts: 1,152 Member
    edited October 2020 #3
    Did your oncologist say poor

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

  • Erica2016
    Erica2016 Member Posts: 47 Member
    edited October 2020 #4
    abita said:

    Are you a candidate for

    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. 

    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. 

  • Erica2016
    Erica2016 Member Posts: 47 Member
    edited October 2020 #5
    abita said:

    Did your oncologist say poor

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

    He said poor prognosis Abita,

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

  • abita
    abita Member Posts: 1,152 Member
    edited October 2020 #6
    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,

    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
    abita Member Posts: 1,152 Member
    edited October 2020 #7
    Erica2016 said:

    He said poor prognosis Abita,

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

    That isn't cool. Mine have

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

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    edited October 2020 #8
    Erica2016 said:

    He said poor prognosis Abita,

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

    Get a second or third opinion STAT

    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
    abita Member Posts: 1,152 Member
    edited October 2020 #9
    myAZmountain said:

    Get a second or third opinion STAT

    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.

    I have probably asked a few

    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
    Real Tar Heel Member Posts: 307 Member
    edited October 2020 #10
    There was some recent

    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
    DeeFL Member Posts: 1
    edited October 2020 #11
    Trial

    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
    SnapDragon2 Member Posts: 720 Member
    edited October 2020 #12
    Be careful with the high dose

    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
    SnapDragon2 Member Posts: 720 Member
    edited October 2020 #13
    Onc aren't qualified to give

    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
    NewHere Member Posts: 1,428 Member
    edited October 2020 #14
    Prognosis

    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
    Annabelle41415 Member Posts: 6,742 Member
    edited October 2020 #15
    I'm so sorry

    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
    Real Tar Heel Member Posts: 307 Member
    edited October 2020 #16
    In the Vitamin D3 study, the

    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
    SnapDragon2 Member Posts: 720 Member
    edited October 2020 #17
    Thats great you didn't haven

    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?

  • feckcancer
    feckcancer Member Posts: 189 Member
    edited October 2020 #18
    CF33

    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

     

  • Real Tar Heel
    Real Tar Heel Member Posts: 307 Member
    edited October 2020 #19
    SnapDragon2 said:

    Thats great you didn't haven

    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?

    3 x 10,000 IU/d for a week,

    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.

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited October 2020 #20
    Best of luck to you Erica. I

    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.
    Tom M. Member Posts: 223 Member
    edited November 2020 #21
    Stay positive

    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

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