The Colon Club

Hello everyone. I have been reading this forum for about a year now. I have found the articles on this forum to be very informative and the most kindest and caring people I have come across. I find my heart and my mind in a tug of war over my situation. I was diagnosed Nov 2015 with stage 3 cc. Dec 2015 had surgery to remove lemon size tumor in my sigmoid and had 18in removed No ostomy.. Caught staph infection from surgery and during a x-ray they discovered 11 nodules between both lungs. Started Folfox w/oxi. Dropped oxi and added Avastin. Everything stayed stable until about 2 months ago. Had to take a break from 5 fu Due to horrible mouth sores. During this one month break I had a scan. Now comes the Dilemma my scan showed it had spread to the right side of my liver and to my ovaries as well as my chest wall, peritoneum and trachea oh and let me not forget my hemorrhoidal nerve. I asked my Oncologist who gets cancer on their hemorrhoid. That's the only laugh I had that day. I am now on Irinotecan/Avastain. Now with 40ish chemo rounds my mind tells me I will never reach
NED and therefore stop the treatments. But my heart tells me for the sake of my children to keep going. I know that by God's grace would be the only way I would be cured. Am I wrong for thinking this way because everyone here is fighting for their life.

I’m so sorry to hear about your current situation.

I think I depends on life quality, how affected are you by the chemotherapy? Dose it knock you out completely or can you live a “normal” life. If the chemo don’t ruin your life quality I would keep on going, what can it hurt really, the medical world is moving so fast that nothing is ever sure, there may be a new trial or new medicin just around the corner.

If you on the other hand feel like chemo is draining everything good out of your body, then I understand why you would want to enjoy the last time the best way as possible.

I have linked to a Ted Talk, that I think you should view, it’s very positive and full of love.

https://www.ted.com/talks/lucy_kalanith ... xt#t-21134

I hope you find peace at whatever choice you make, remember it’s your life, YOU decide.

So much love, hugs and kisses from me.

Your situation is quite difficult and I understand the part about spending so much time in treatment that it leaves little time to enjoy life. I understand that you want to be there for your family as long as you can but they likely would want you to enjoy life if it's clear that there aren't any solutions on the horizon. I have a friend that's on the chemo for life program and he's on short-term disability and asks "why me?". His medication will keep him alive until hopefully a cure or procedure can be found. He has some side-effects but no spread so his position is tenable for him. You are seeing spread so things are harder for you. It's definitely one of the things that all of us with Stage 3 worry about at one time or another or maybe all the time.

The answer to your question is intensely personal. I think that I know what I'd do in your case but that's me.

I would absolutely star looking for clinical trials. This is where the future of research is. Ask your oncologist and check:

https://clinicaltrials.gov

That is a hard question to answer. Only you know what is best for you. I would suggest speaking with someone about it, be it your oncologist, a chaplain or an oncology counselor if one is available.

Janis:
Is there a Palliative Care program associated with the medical center or cancer center where you receive your care? Palliative Care focuses on providing medical and psychological services that allow one to life one’s best life despite a life-threatening illness.

I do not have cancer but do have life-limiting endocrine failure and multi-organ compromise due to 20 years on corticosteroids. I have been receiving Palliative Care for the past 5 years and credit its model of care for keeping me afloat and finding a means of living a life that continues to have meaning and purpose. Pain management has been a critical aspect for me, and I appreciate that I am relatively comfortable.

Palliative Care provides me with home based visits by my clinical team members.

My Palliative Care team includes a physician with Palliative Care speciality, nurse/RN, wound care/ostomy care, physical therapist, psychologist, and chaplain. The Palliative Care physician serves as a liaison with my other specialists to coordinate care and to offer opinion. My Palliative Care physician is my true advocate and gives voice to the choices that I would make for myself when I am more acutely ill and unable. Within my Palliative Care team I am understood. I do not need to explain myself or the nuisances of living with chronic ill health. The members of my Palliative Care team intuitively “get it,” they intuitively understand the reality of living with frail health. It is immensely freeing to be able to be my authentic me when I am in the company of the team members.

The most salient aspect of the program, to me, is its inclusion of family members. The psychologist works with my family as a unit to cope and adapt to my illness. The psychologist also works with each member of my family individually as each of their respective needs dictate. Any serious illness affects not only the person diagnosed but also affects the entire family. My family is healthier for the presence of Palliative Care.

I oft hear that people with serious, ongoing health issues are hesitant to explore Palliative Care, thinking that it implies doom and gloom.

Palliative Care is not inherently depressing nor does it imply the closing of one’s life. Rather, Palliative Care is whole person care that focuses on providing physical and emotional support to help a person life his/her best life within the constraints of a life-threatening illness/condition. I am a happerier person with Palliative Care.

OK . . . I did not mean for this to narrate like an advertisement. Just know that I have benefitted from Palliative Care and I imagine that others on this forum would benefit as well. Do not be shy from inquiring about Palliative Care.

Nameste,
Karen

Hello, Janis.
I am so sorry to hear that. My mum is also a current stage 4 patients with multiple lung Mets. Her chemo treatment is Folfox with Avastin.
It is rely disappointing to hear bad news during treatments. I do see there are still other choices for those failed in chemo like clinical trials and keytruda. There are hopes for stage4 patients. But the point is what do u rely want. I know this disease sometimes make one feel like you can fight and win it but sometimes very desperate. Do you rely want to continue the fight? Though I hope you will keep on fighting, the decision is yours.

Hi Janis. Sorry to hear about your situation. It may sound cliche but there is always hope. Other people with similar situations have reached NED status again. It is true that you may have to face the possiblity of having treatments indefinitely but even this is not a certainty. Just worry about the problem at hand which is controlling the disease. Look at trials. Have your tumor tested for MSI status. Good luck Janis.

Thank you so much sweeties for your kindness and insight regarding my situation. Thank you Pemba for the link I will definitely read it. I guess I just feel so overwhelmed and depressed with the amount of metastasis hitting me at one time. I live in Houston and go to MD Anderson so I do have palliative care. I guess I would just feel more comfortable talking with someone who truly knows how I feel. I am so so sorry guys if this sounds like a "Whoa is me" kind of thingy because that's not my intentions. I'm just so frigging scared right now and I feel like my brain has not yet gotten the "memo" that this is really happening. So once again thank y'all so much for listening to me. So moving on to a lighter note could someone please please tell me how how to add a signature on this.

plastikos wrote:Hi Janis. Sorry to hear about your situation. It may sound cliche but there is always hope. Other people with similar situations have reached NED status again. It is true that you may have to face the possiblity of having treatments indefinitely but even this is not a certainty. Just worry about the problem at hand which is controlling the disease. Look at trials. Have your tumor tested for MSI status. Good luck Janis.

If you are in Houston and your insurance will allow it or you can pay for it, get to MD Anderson and get your tumor tested for MSI status. If you are MSI high, your insurance may pay for new immunotherapy medications like opdivo or keytruda. These help some people when conventional therapies no longer do so.

I will post a link I hope is ok with mods for you to look at and consider. I am sorry you are in this situation.


http://theconversation.com/cancer-immun ... o-go-81320

Janis wrote:Hello everyone. I have been reading this forum for about a year now. I have found the articles on this forum to be very informative and the most kindest and caring people I have come across. I find my heart and my mind in a tug of war over my situation. I was diagnosed Nov 2015 with stage 3 cc. Dec 2015 had surgery to remove lemon size tumor in my sigmoid and had 18in removed No ostomy.. Caught staph infection from surgery and during a x-ray they discovered 11 nodules between both lungs. Started Folfox w/oxi. Dropped oxi and added Avastin. Everything stayed stable until about 2 months ago. Had to take a break from 5 fu Due to horrible mouth sores. During this one month break I had a scan. Now comes the Dilemma my scan showed it had spread to the right side of my liver and to my ovaries as well as my chest wall, peritoneum and trachea oh and let me not forget my hemorrhoidal nerve. I asked my Oncologist who gets cancer on their hemorrhoid. That's the only laugh I had that day. I am now on Irinotecan/Avastain. Now with 40ish chemo rounds my mind tells me I will never reach
NED and therefore stop the treatments. But my heart tells me for the sake of my children to keep going. I know that by God's grace would be the only way I would be cured. Am I wrong for thinking this way because everyone here is fighting for their life.

Hello
I know it is not easy but keep on fighting on. You never know when things turn around.
This January 2017 I was told I was on palliative care and treatment as my folfox had failed . My CEA levels were around 4000 ( and went upto 25000+ later ) . I was suffering horribly due to chemo side effects . None of chemo protocols were working.
I was preparing for worst with will preparation and goodbyes.
Then oncologist put me on Nivolumab as a sort of resort in May 2017.
Disease and body seems to have responded. cEA levels are dropping drastically.
also try meditation and exercise to best of your ability.
and please do not give up .You never know when things turn around.
(ps. I am msi--h and lynch+ve)

I'm so sorry you're going through this!*hugs*

"get to MD Anderson and get your tumor tested for MSI status"

I would imagine that that was already done. Janis is a patient at MD Anderson. Wouldn't such a big cancer center test MSI as a matter of course?

Janis -- sending positive thoughts your way.

mpbser wrote:"get to MD Anderson and get your tumor tested for MSI status"

I would imagine that that was already done. Janis is a patient at MD Anderson. Wouldn't such a big cancer center test MSI as a matter of course?

Janis -- sending positive thoughts your way.

I am also going to MD Anderson in NJ.....their protocol is to test every stage 2 and 3 for MSI before starting chemo. Being a stage 2, I was tested before they started chemo because 5/FU can cause more harm than good.

mpbser wrote:"get to MD Anderson and get your tumor tested for MSI status"

I would imagine that that was already done. Janis is a patient at MD Anderson. Wouldn't such a big cancer center test MSI as a matter of course?

Janis -- sending positive thoughts your way.

My local hospital is nowhere near top-ranked and they tested MSI status using the cheaper IHC testing. I would guess that MD Anderson would do a full NextGen Genomic Tumor analysis to get the mutation and variant so they would know exactly what they are dealing with.