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stage 4 to terminal

nicktacoma's picture
nicktacoma
Posts: 11
Joined: May 2019

What a whirlwind my life has become was diagnosed with colon cancer in March of this year had surgery in April to remove gallbladder and apendix colectomy to remove a large tumor and 36 lymph nodes 16 of which were positive for cancer so they said stage 2 then about to start chemo had port placed in May CEA at that time was 33.6 so my onc ordered another PET scan it showed that it had spread to my lungs upgraded to stage 4 at that time started chemo in June have done 2 treatments 3rd coming tuesday first 2 were folfox6 with the 5FU pump now they are adding Herceptin also known as Trastuzumab it targets the HER2/neuro receptor in ceritn tumors it dosen't cure it only slows it down they have told me I'm concidered treminal and they aren't treating me to cure me just to prolong my life my cancer is very aggressive and radiation at this time is not an option because of the Herceptin can have serious side effects to the heart muscle when used in combination with lung radiation treatments because of poximity of the heart. I can't quite wrap my mind around all this info coming so F@#$ing fast I have 2 young daughters oldest 19 just graduated with her AAT assosiates degree in nutrition and cullinary arts so I have a live in chef to help me with my diet. My youngest daughter is 17 she has many medical issues steming from epilepsy she has had numerous seizures and suffered brain injuries from 2 major seizures at the age of 4 we will need to care for her for the rest of our lives. My wife and oldest are being very brave and helping me in anyway they can. I still have my Aflac for another 3 months but after that it is going to get interesting. Anyway I just had to unload this S#!+ didn't mean to whine but thanks for listening.

So Far So Good

Nicktacoma

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

That's a lot. I'm so sorry this has happened to you. We are all here to listen and commiserate. Are you being treated at a cancer center or hospital? Have you gotten a second opinion? 

I'm stage 4 but I am currently NED. I had it in colon and lungs. Surgery got it out, chemo to ensure it does not come back. But I never heard the word, terminal. That's awful.  Sending love and strength to you and your family.

K

Butt's picture
Butt
Posts: 299
Joined: May 2018

It looks to me they can t do much with lung mets in this particular case. I always thought that terminal is when they don t have any options left  in regard of treatments. I would say you are not curative at least it is what they think for now. Butt.

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

I hate the word 'Terminal'.  It sinks into the spirit and does not help one be positive. 

So, forget the terminal, and just look forward.  Forward to what? Don't even ask that, just look forward. Tell yourself you can beat it, and then, you either do or you don't. 

I know that being positive isn't the be-all-and-end-all. Treatment, diet, exercise, prayers, fresh air, work at all of it, and be positive.

You have my prayers and positive thoughts.

Tru 

nicktacoma's picture
nicktacoma
Posts: 11
Joined: May 2019

I have actually got 2nd 3rd and 4th opinion from radiologist, cardiologist, oncolgist and the surgeon that performed the colectomy they all agree that the current course is the best option. I am the one who used the term terminal as it is the best way I can discribe it to myself. they give me 20% chance of 5 years and their words are: we are treating your cancer to slow the spread it is a very aggresive form and at this time we feel that radiation is not an option and surgey to remove the right lung 1 tumor and 3 nodules is not an option because of a recent heart attack and subsiquent stent placement. I'm hoping to be accepted in a trial in UW medical center in Seattle WA. 

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

Colon operation 2015, half of lymph nodes taken had cancer.  Portion of lung removed in 2016 for a met.  (I was in and out in 36 hours and ran 3 miles a week later - it was easy.)  Came back third time in three years and inoperable (spread to lymph nodes, multiple lung mets) in Fall 2017.  Immunotherpy trial did not work for me, and a major cancer bloom in summer 2018 - including into spine, fast growth and spread in lungs (at least 60 tumors, maybe more, they stopped counting them), made it time to go back on chemo.  Doctors were really clear that they are not curing me, just holding serve as long as possible until next breakthrough or moving onto next treatment.  But at no point saying "terminal." 

So try to stay positive.  Also your 2nd, 3rd, 4th opinions may not be the way to go with what you went for.  If you want a second on surgery, find a surgeon.  Chemo, another chemo doc, etc.  Preferably from a place not where you are going/being treated.  You can even get a second opinion on-line from some mahor places, including Mass General, Dana etc.  Memorial Sloan Kettering (where I go), MD Anderson, and other places may be worthwhile contacting for a second opinion.  Based on you medical condition, your docs may be right in all of this.  But it does not hurt to maybe get a second.  

myAZmountain
Posts: 256
Joined: Apr 2018

Have  been told "chemo for life" and to not plan anytihng more than a year out--by a Mayo oncologist. My other oncologists and lung surgeon aren't as dire but they do say it is akin to fighting "weeds" in a garden, and that there will be a need for chemo when the mets start growing. Did they do extensive genetic study of your tumor cells to determine the use of Herceptin?  If you think about it, who isn't terminal? Just words.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I'm not sure terminal is the right word in your situation and it sounds really self defeating. I will never have my stage four cancer go away. I do chemo to keep it at bay. Mine is not very aggressive so that helps but I've never thought of myself as terminal. Yes, this will likely get me in the end but until then I deal with it. It's not fun and my quality of life is pretty poor but I'm still here. 

We're all terminal, ultimately. Everyone, not just us cancer people. You're allowed to rage, you're allowed to be sad and frustrated, but you're not allowed to use a word that will put you in a dark place. Please don't do that to yourself. My onc told me to think of it like having high blood pressure or diabetes. They can't get rid of it, I'll always have it, but they have meds to allow me to live with it.

Hugs to you, never let this bugger get you down if you can help it. I'm currently really angry with my cancer right now due to some issues. I was crying earlier because I could barely ride my horse. By the time I got home I was in 'f this $hit' mode and tomorrow I'm going to a ,ocal gym where they have programs for people like me and they're free. I've always been a fighter and I still have a life, I won't let it get me down if I can help it.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6181
Joined: Feb 2009

I'm sorry to hear that all of this has come down so fast, but don't think of it with no hope.  They are still giving you treatment to help you.  I'm just not sure what other options you can do since you have gotten a 3rd and 4th opinion.  I'm glad that you have the support of your family.  We are here to also give you support.

Kim

SandiaBuddy's picture
SandiaBuddy
Posts: 878
Joined: Apr 2017

Goodness.  I do not know what to say.  If it were me, I guess I would fight like hell and live every day to its fullest.  So sorry about your circumstance.

Joan M's picture
Joan M
Posts: 374
Joined: Oct 2016

You have a lot to live for so keep on fighting!  Hard to hear when they say you have an aggressive cancer.  I've been told mine is a slow growing type, but always worried it could mutate.  

I was diagnosed in February of 2016, and told I had 6 to 18 months to live by my first oncologist.  I went to Mayo and the oncologist there told me I would probably live for "many years".  I'm going with the second doctors opinion - Axel Grothey, one of the top colon cancer oncologists and researchers in the world.  

They are coming up with new medicines and treatments all the time.  

Good luck to you and your family!

Joan   

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