New member/caregiver

Welcome to the board where we wish there was never any need for new members, but remain grateful for this place.

If in fact your father's liver is "full of cancer" as reported by the surgeon, that will limit the options available for treatment.  Most success comes from surgery but one cannot remove the entire liver.  The other area of the body most often impacted at stage 4 are the lungs.  Some patients also have metastisis to the bones and some to the peritoneum and very few to the brain.

It is likely that the onc will offer chemo to prolong life, but not offer a cure.  It is difficult to know how your father might react to the chemo given the other meds he is on.  Chemo can be very difficult for even those is relatively good health.  The immunosuppressive drugs might be a serious complication to treatment.  Also some chemo treatments can cause heart issues.

You also asked about how much time.  Many doctors will not even offer a time frame, until it gets close to the end.  In part because, one can never know.Also they don't want to dash hope that the patient may have.  If one cannot be cured or put into remission, the time frame is always less than we would want for a loved one.

If I were the patient, I would be most concerned about liver failure if chemo could not be given or if it did not do something to reduce the cancer burden there.

Given your father's overall health, I would suggest that you ask for his doctors to have a consult to discuss options and risks.  What might be done for another patient might not work well for him given his other conditions and medications.

At the very least make a list of all his meds and conditions and take them along with all your questions to a visit with the onc.  Hopefully then you will get the answers you seek.Your father is not the first, and unfortunately will not be the last, whose doctors did not persue the symptoms until it was stage 4. 

You asked about what plans need to be made.  I was 62 when I was diagnosed.  I updated my will.  I made an advanced directive, stating what things I did and did not want done if I was unable to make decisions.  I made a financial power of attorney.  I made a medical power of attorney.  I made sure my children knew about my financial affairs and where to find documents.  I am divorced, so there was no spouse to default to.

If your father's doctors give him 6 months or less, Hospice care may be recommended.  This might be in-home care where they visit and make sure he had meds he needs, durable medical equipment and help with things like personal care, but not 24 hr. care.  If there is no one in his home who can provide the additional care he will need, then in patient Hospice care may be recommended.  The patient goes to their facility and receieves 24 hr. care.  Experiences with Hospice can vary, because while each is a regulated care facility, they are not all run by the same people.  I was very fortunate to have access to excellent care for my sister who died from stage 4 uterine cancer.

I wish I could be more encouraging about your father's condition.  I am not a doctor, so there is always hope that a real doctor will have a more positive outlook for his condition.

Please return and let us know what you find out.  If chemo is offered, I feel certain that someone here can let you know the types of side effects might be seen.

Being prepared for the worst and hoping for the best is about all any of us can do until a cure is found.

Hugs to you and your father,

Marie who loves kitties

ReadyOrNot2016 said:

Thank you for the replies, by

Thank you for the replies, by the way. I'm his daughter. I have 3 siblings. One cannot/will not deal with this and hasn't come to the hospital despite being 5 minutes away. The other two are definitely in this with me, but we all have different approaches. My mom cannot handle this. I will be moving out of my place and into my parents' within a month. My dad seems peaceful, but I am sure he will go through many emotions and difficulties and fear.

Damn, your pop has been through a lot of stuff, predictions from here on out are just guesses, but I had a friend who got CC a year before me, refused any treatment, and lived 5 years before having a heart attack, but that's just one story. Make your dad as comfortable as possible, ask what things he might like to do, or see. I took my dad on a trip to LA and Glendale to see where he lived after his time in Korea, and that seem to give him a lot of peace. My pop went through a lot at the end, I think we all must, but you being there, and what family you can coax to come as well, all helps the transition. Its a hard road, I hope you find peace and know you did your best for your dad, I hope he has some time, and you can find peace with the process.....................................Dave

Sorry you have to be on the forum... I'm also a fellow caretaker/child of a Stage IV colon cancer patient. He was diagnosed 2.5 years ago, still doing decent considering. He also has medullary thyroid cancer which is the focus right now - that can "kill him faster" as they say. My dad was 65 when initially diagnosed. 

All I can say is, you never know what's going to happen. It's really a day by day thing - some days they do great, others you aren't sure what the hell is going on. If he is positive, then it'll definitely help, and I know that its hard, but staying positive and giving "good vibes" can help a lot. 

sammer4u said:

Some info

I was in the same situation as your father, went to the doctor in 2009 for complaints of cramping and blood in my stool, told me it was hemroids, went again in April 2011 to a different doctor same complaints, said it was IBS.  November 2011 I was taken to the ER as I could not drink, eat, move, was very weak.  Next day they take an "orange" sized tumor out and 12" of my colon out of me.  In two weeks I found out I was Stage IV colon cancer with multiple tumors in the liver.  I was 41 at the time.  Yes a bit younger than your father.  I was asking the same questions, however I moved forward and did 12 rounds of chemo, surgery and a year later they told me enjoy life.  To this day I have been cancer free, looking towards my 4th year cancer free.  I am not saying your father will have the same luck, but for me I had no answers.  I did not know what questions to ask, just listened to my oncologist, his staff, and the surgeons.  I moved forward with little time off of work.  Went back to work full time about 4 weeks after I was diagnoised.  Continued on with my life as best I could.  I had a liver resection, and they removed 70% of my liver after the first half of chemo made a reduction in the tumors.  That was a huge battle back, but one I made.  All I can say is that I have been through what I feel is the biggest fight of my life.  Never knew what stage IV cancer was, or how serious it was.  After I had my last sugery, one of the nurses told me I was lucky to be there, and after asking why she said stage IV is never priomising.  Well, as I told her I was not one to follow the rules unless absolutely necessary.  I did not follow the stage IV rules of cancer, however I did follow the rules of my oncologist and his staff.  Yes it was a battle, but what did I have to lose?  I lost about a year of activities but I have gained life again.  Granted I may have taken a few years off my longevity, but hell...  i did not want to live to 90 anyhow!  Definately look at all options!  Chemo was not fun, but you can work through it.  I never got sick while on chemo.  The worse I had was neropathy, senstivity to cold things.  It sucked having to drink warm beer or fluids of any kind.  But, I did and have been told all is good today!  Just giving you a bit of insight and a spark of hope for you and your dad.  There are worse things out there, but as I have told anyone who asked about my journey..... it was a cake walk!  Just do not think about it, or if you do...  do not overthink it!!!!  Good luck!

Your post, sammer4u, makes me very happy. 

Sue - Trubrit

Hi readyornot,

Sorry to hear about your dad, but he sounds like he is a fighter though.  You have come to the right place, and I am sorta new here, but these folks are very knowledgable and supportive.  You have some excellent responses, and so I just have a couple things to add.  I am rectal cancer, and my dad was colon cancer stage four, like yours, and my dad had had kidney cancer about 30 years prior.  My dad lived 4 years after diagnosis, and he had cardio issues and diabetic also.  They removed his softball sized tumor, and he had a short course of chemo.  But, he too, was a fighter.  Some folks just go through "living with cancer" and can do that for a while. 

First, I would suggest you take advantage of the cancer center, if there is one, at the hospital. Most major hospitals have that, and they can advise you of various support services.  It is curious that immunosuppressive drugs are used as chemo sometimes.  I had read that, and hope the doctors are putting all the pieces of your dad's health together, and then deciding on potential treatment.  If you are in a cancer center, there should be a lot of information available, and support services.

your dad probably has a "team," of doctors: mine include oncologist, radiologist, and surgeon.  Ask about various treatments.  Radiation can be pretty successful in "shrinking" tumors, but again, that would depend on all the other pieces of his health.  I would ask about radiation, as there should be an answer as to why not.

Also, adenocarcinoma is the typical cancer tumor.  There are generally grades, depending on how different the cells are from normal cells, on how aggressive the tumor is, mine is in the middle as "moderately differentiated.   The liver metastasis may be their biggest concern.  But, again, I would just get your questions ready and ask.  Hopefully there are resources in the hospital where you can have things such as :

family support groups, patient education and support groups; pallative care (they deal with more than just pain, and focus on patient care, physical, emotional, and mental.  I have this myself.

And, you sound like a very caring daughter!  I have a daughter myself, and so since my father and me both had colorectal cancer, I was given genetic testing.  And, not to worry you, as some of these cancers grow slowly.  I was told that it can take 10 years for a polyp to become a cancer.  I am living proof that that is not always true: I had a colonoscopy three years before the one that found my tumor.  So, and this would probably make your dad feel better, but I would see if they offer genetic testing.  Mine was negative for any of the 16? genes, but irregardless, colonoscopies save lives, so it would be good to think about having any first degree relatives to get tested.  I am what they call a "polyp builder" and had to have them every three years.  I only had two, and the second one probably saved my life.  That said, I will be pressing my daughter to have one as she is coming up on that time.

i wish you the best, and pray for you and your family.  I hope you find some good supportive care for yourself along the way also.  The cancer center at my hospital is excellent, and they have helped me greatly with the emotional and physical aspects of this disease. Some days I am filled with hope and positive, others I am shattered.  So, I hope you have some support in your journey.  You deserve to be comforted and cared for as the caretaker also.  sharron

MS2014 said:

Great to know about your story

It give us such great inspiration on how we must fight

were always...  WHO CARES...  I have to move forward!  I never let anything get me down, move me backwards.  If it did, no big deal.  That is what I try to tell anyone who asks about what I went through and how I got through it.   Just trying to pass on my success, and pumping people up with do NOT let it get to you!  Nothing you can do about it but FIGHT it!  Move forward!!!

ReadyOrNot2016 said:

I just wanted to come back

I just wanted to come back and update. My dad got out of the hospital 2/22. He was healing well and getting back to himself. On 2/28, severe pain sent him back to the ER. They found no issues other than the cancer and sent him home with pain management and the doc their as well as my dad's primary urged my parents to get set up with hospice. They weren't ready.

I had been staying with them throughout this. From that day to 3/1, he grew rapidly weaker. The pain was not controlled by dilaudid. He began refusing food. I ran around picking up a walker, a wheelchair, a lift chair, and a raised toilet seat because he needed them and asked for them. He begged us not to make him go to the doctor to have his surgical staples removed. We got him into the car and went anyway. It was a nightmare. I had been bringing up hospice since the pain management incident in the ER, but they just weren't ready.

My dad began refusing his pain meds. He slowly stopped talking. He just groaned and moaned and withdrew. That night after the staple removal, some relatives showed up and got my mom to call hospice. They wouldn't come until the following day, and even then, my mother only wanted info. We knew but we didn't know. It was happening too fast.

Finally, after my dad became a groaning, non-responsive mess, a hospice nurse showed up. She told us what we knew - he was dying. A crisis team came in the afternoon and transported him to the hospice house.

They informed us there that he had terminal restlessness and tried to soothe him and get him comfortable. I stayed with him the whole time, all the way to the end. He passed 6 hours after reaching the hospice house.

In a way, he was spared many things, but the truth is that his last few days were agonizing. So short but so awful. We had no time. He was dying for days, and I watched the whole thing helplessly. My best guess is that his liver gave out. I just don't understand the speed.

Oh no, I'm so very sorry. My heart breaks for you and you mom. I will pray for you both tonight that you will be able to find peace and comfort. My condolences.

Jan 

ReadyOrNot2016 said:

I just wanted to come back

I just wanted to come back and update. My dad got out of the hospital 2/22. He was healing well and getting back to himself. On 2/28, severe pain sent him back to the ER. They found no issues other than the cancer and sent him home with pain management and the doc their as well as my dad's primary urged my parents to get set up with hospice. They weren't ready.

I had been staying with them throughout this. From that day to 3/1, he grew rapidly weaker. The pain was not controlled by dilaudid. He began refusing food. I ran around picking up a walker, a wheelchair, a lift chair, and a raised toilet seat because he needed them and asked for them. He begged us not to make him go to the doctor to have his surgical staples removed. We got him into the car and went anyway. It was a nightmare. I had been bringing up hospice since the pain management incident in the ER, but they just weren't ready.

My dad began refusing his pain meds. He slowly stopped talking. He just groaned and moaned and withdrew. That night after the staple removal, some relatives showed up and got my mom to call hospice. They wouldn't come until the following day, and even then, my mother only wanted info. We knew but we didn't know. It was happening too fast.

Finally, after my dad became a groaning, non-responsive mess, a hospice nurse showed up. She told us what we knew - he was dying. A crisis team came in the afternoon and transported him to the hospice house.

They informed us there that he had terminal restlessness and tried to soothe him and get him comfortable. I stayed with him the whole time, all the way to the end. He passed 6 hours after reaching the hospice house.

In a way, he was spared many things, but the truth is that his last few days were agonizing. So short but so awful. We had no time. He was dying for days, and I watched the whole thing helplessly. My best guess is that his liver gave out. I just don't understand the speed.

There's not much to offer, except sympathy from afar...

Stay well,

John

ReadyOrNot2016 said:

I just wanted to come back

I just wanted to come back and update. My dad got out of the hospital 2/22. He was healing well and getting back to himself. On 2/28, severe pain sent him back to the ER. They found no issues other than the cancer and sent him home with pain management and the doc their as well as my dad's primary urged my parents to get set up with hospice. They weren't ready.

I had been staying with them throughout this. From that day to 3/1, he grew rapidly weaker. The pain was not controlled by dilaudid. He began refusing food. I ran around picking up a walker, a wheelchair, a lift chair, and a raised toilet seat because he needed them and asked for them. He begged us not to make him go to the doctor to have his surgical staples removed. We got him into the car and went anyway. It was a nightmare. I had been bringing up hospice since the pain management incident in the ER, but they just weren't ready.

My dad began refusing his pain meds. He slowly stopped talking. He just groaned and moaned and withdrew. That night after the staple removal, some relatives showed up and got my mom to call hospice. They wouldn't come until the following day, and even then, my mother only wanted info. We knew but we didn't know. It was happening too fast.

Finally, after my dad became a groaning, non-responsive mess, a hospice nurse showed up. She told us what we knew - he was dying. A crisis team came in the afternoon and transported him to the hospice house.

They informed us there that he had terminal restlessness and tried to soothe him and get him comfortable. I stayed with him the whole time, all the way to the end. He passed 6 hours after reaching the hospice house.

In a way, he was spared many things, but the truth is that his last few days were agonizing. So short but so awful. We had no time. He was dying for days, and I watched the whole thing helplessly. My best guess is that his liver gave out. I just don't understand the speed.

I'm glad he didn't have to go through years of pain. I know it must be hard for you, but you did all you could.

You're in my thoughts and prayers.

Lin