New and a bit lost

patricia1213

I am 51 and was diagnosed last week with Stage 4 colon cancer that has progressed to my liver and potentially adrenals. From what I understand I have over 30 lesions in my liver and some are very large. My initial consult with the oncologist left me feeling hopeless-no clinical trial options or even a sliver of hope for remission. This might be the right answer but I will be seeking a second opinion on treatment options. I start chemo next week with a hope to shrink the tumors since my liver is not operable. I am not sure what this all means for my prognosis in the near term. I am generally stubborn and want to exhaust every option. However, I have 2 daughters, 10 and 14, and want to make the most of the time I have with them and my husband. I don’t want to regret spending the time now in I intensive treatment when I am relatively mobile and pain free to extend my life if that extension comes with a poorer quality than today. I am trying to find that balance and appreciate any and all advice.

Trubrit

The choice between going the chemo route, and letting nature takes it course, is probably the hardest choice you will ever have to make.

I cannot advise you one way or the other, but I am happy to hear that you are going for a second opinion. That will give you some peace of mind, I think.

For some, chemo is not as hard as for others, but you wouldn't know which side you would fall on, until you get into treatment. I wish you the best, next week and beyond.

If I were faced with your decision, I think I would at least give chemo a shot.

Also, if I were to do it all again - Pray that I won't - I would push myself just that bit harder through chemo. While I didn't sit on my behind, I still feel I could have done just that bit more, and maybe, just maybe, some of the side effects wouldn't have been so traumatic.

I am so sorry you and your young family have to face this trial; and I wish you nothing but the best as you go forward.

Eat healthy. Sleep well. EXERCISE as much as you can, without killing yourself. I took up meditation during chemo, and it helped me no end. It still helps me.

Stick with us here, and we will stick with you.

Tru

abita

https://csn.cancer.org/discussion/325263/new-and-a-bit-lost

Everyone reacts differently, so I can't say how the side effects will affect you. I can say, that I was able to make it to the office and work and maintain my home on chemo. Yes, I am more fatigued and my world is different now. But I am here and still on chemo. Your quality of life may not be as good as before cancer. But it might not be as bad as you fear.

I think one very important thing to remember is that if you choose chemo, you can always stop if you change your mind.

Oncologists care about your quality of life, and there are many options to alleviate some of the side effects. My oncologists have even been willing to adjust my schedule so I can take a vacation.

I have been fighting a while now. You are right now at that "sucker punch" stage as I call it. Any time a chemo stopped working, and growth or whatever was the news, it feels like a gut punch. But, once you get a plan, the brain switches to fight mode, and that initial shock is on the back burner.

And decide if that feeling of hopelessness is from the initial shock or from the oncologist. Most insurance allows a second opinion and it is important that you have an oncologist who helps you feel you are in the fight. Don't worry that there are no clinical trials. All the ones I looked at anyway require the patient had treatment before anyway. There are always new trials. Did your tumor get analyzed yet? The first line drugs I believe are tried for all, but when you get to targeted drugs and immunotherapy and trials, it depends on whether you have mutations or not, and then, what the mutation is.

Don't google. And if you say, want to google a certain drug, before you read the article, make sure it is a reputable site.

and we are all here to support you if you need to ask questions or even if you just need to vent to those who get it.

patricia1213

Thank you Tru and Abita—heating others experiences really helps. I am starting oxaliplatin and 5-FU next Tuesday. Because of the size and instruction of my colon tumor they want to hold off on Avastin. I’ll keep this thread posted on how things go next week. I have a list of questions for my oncologist specific to treatments for the liver and hopefully that will give me something to aim towards vs. “Standard chemo” to get 2-4 more years which is how I am feeling right now.

NewHere

https://csn.cancer.org/discussion/325263/new-and-a-bit-lost

Sorry you are here Patricia. Tru and Abita covered a lot of things and nailed them in my opinion. Definitely get a second opinion. Usually I write more, but just updated my story just now, then took some medicine - recovering from a recent surgery so just took some pain killers to make sure I stay ahead of the pain (which really isn’t bad) - so entering a bit more chillax mode.😁

I am Stage IV, 7-1/2 years into this. If you get a chance, please take a look at my profile from the link below. It is a short read. But it is what I have gone through and would do it all again. I would not be here today without chemo and surgeries. I have had more than enough good days which have outweighed the bad days. So as of now, still continuing on with treatments and all the rest. When things were really bad, I can see there being a point where it may be time to no longer have chemo etc.

One thing I would mention - get a handle on what to expect from FOLFOX, usually I would do my whole FOLFOX thing here, but a little tired right now :) Hang here and ask any question you have or yell or whatever. We are all here for you to share tips, experiences or just be the ear you need to listen.

https://csn.cancer.org/profile/discussions/NewHere

Tueffel

Hello,

I am sorry for your diagnosis.

It is good that you consider a second opinion.

What I would suggest is genome testing. Which mutation does your cancer have? RAS? BRAF? MSI? How is your TMB? If your oncologist has not test it yet, it is time. Based on TMB and MSI new treatment options might be available for you.

Try to look what you can do to have a better effect for chemo or less side effects? Many people here know about supplements, additional drugs. Here in Germany there are people using methadon because it can increase effectiveness. The trial is in process.

I lost my dad to this disease 6 months ago. Whatever happens, shower your children with love. Do what your love, smile. This will be a tough journey for all of you, you as a family are going this path. The path is different for you, your husband, your children, but all of you will fight and support each other.

One more thing: you were 51 when diagnosed, your children will have their first screening for colon cancer at 41. If you have more cancers in the family, talk about genetic testing.

I wish you good luck!

janh_in_ontario

I did the Folfox 5FU - 5 rounds - very little side effects. I have no advice - I am stage IV as well, waiting on liver biopsy to determine if colon cancer has metastasized to liver - I then have same decision as you.

God bless you - enjoy your day every day and do what feels best for you and your family.

vivgrl

Hi,

I am also very sorry to hear your diagnosis. I think all the advice you have been given here is excellent. I just want to chime in and say fight. Grab hold of every day. Your family needs you and you will have full capacity to love them even if you are sick on chemo.

I was diagnosed stage IV at age 55 two years ago, mets to the liver and lungs, all 100% inoperable, no chance of remission. I have had chemo and radiation - very tough for me but some people seem not to have serious side effects. I have also learned that mets to the liver can sometimes be treated with methods other than surgical removal (i.e. ablation). There are "first line" chemo drugs for colon cancer (Oxaliplatin, Irinotecan, 5FU) and, if/when those fail, there may be additional treatments available based on the genetic profile of your tumor. So you may have more treatment options than are apparent right now. And, as another poster stated, you can choose to end treatment whenever you want.

I have found that treatment has changed my life but has not diminished my quality of life as I define it.

I wish you the very best and peace.

Soundings

My wife, 49, is stage 4 and we live in Baltimore with Hopkins in our backyard. They have been aggressive and have gotten her to liver (Jan) and colon (May) resections this year with large liver tumor and distant lymph nodes. Now that she has a recurrence, I trust Hopkins, but I’m also getting 2nd opinions to make sure we have all of our options.

Sending you positive vibes 💙💙