Dad’s Fork in the Road…

Let me start by saying that I’ve been reading your posts for the last couple of weeks and you are all amazing.  In spite of everything that you’re going through, you are kind, sympathetic and are there to offer help and support.

As you will see below, my Dad has come to a fork in the road and has chosen to take the road less traveled.  I’ve seen some of the debate about chemo vs no chemo and I understand why many of you are very passionate…this is a battle of life and death.

My goal is to continue to provide updates on my Dad's progress so that everyone can benefit from the information, whether it is good or bad.

My Dad will be 77 next month and he was diagnosed with Stage IIIb colon cancer in December 2017 during polyp removal surgery. This discovery was by chance and started with a pulmonary embolism that almost killed him and required the use of blood thinners to make sure no future clotting would occur. About 2 months after being on the blood thinners, he noticed some blood in his stool and so the doctor ordered a colonoscopy (first one he's ever had) where 3 polyps were found and one removed during the procedure. The other two needed to be removed by a surgeon and it was at that time the discovery was made. One polyp was benign and the other malignant. The surgeon removed 10 lymph nodes that looked suspicious and 5 were involved. A total of 16 inches of his colon was removed and he currently has an ileostomy bag.

The oncologist has recommended 6 months of 5FU but first wanted to do a PET scan to confirm whether or not the cancer had spread. The PET scan came out clean and his first CEA on Jan 10 was 1.43 so the Dr. has declared he is cancer free.As of Jan 15, 2018 my Dad is declining the chemo and is moving forward with the ileostomy reversal in the next couple of weeks. He will do follow up visits every 3 months to check his CEA.

I actually have hope, based on some of your results, that my Dad can survive this.

Good luck and God Bless you all,
Mark

Comments

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Best wishes for your Dad

    Welcome to the forum. So sorry to hear about your Dad's rough road the past few months. We all know just how difficult treatment decisions are. I totally respect his choice to not go with the chemotherapy. It's tough when you know lymph nodes were involved, but there are a lot of things he can do outside chemo to help.

    So glad to read you'll continue to work with physicians to monitor his progress. I am currently using alternative therapies, along with lifestyle changes. My Oncologist is on board and we are all very hopeful. 

    Looking forward to reading your updates. He is in my prayers.

    Sincerely,  Beth

  • airborne72
    airborne72 Member Posts: 286 Member
    Tough decision, for sure...

    Mark:

    My situation is similar to your father's, but my rectal cancer is stage 2, not 3.  Statistically, that means things are different but what is not different is the fact that each case of cancer is unique.  Decisions must be made and the person who should make the decisions is the patient, as long as that person is mentally capable to do so.  I say this for a few reasons.  The patient is in the best position to know what impact the disease and its treatment is having on one's health and the patient is the person who must live with the consequences of those decisions, therefore he must be empowered to make the decisions.

    I was diagnosed in May 2017 with rectal cancer.  After a few months of testing I underwent neoadjuvant chemo/radiation treatment for five weeks.  Immediately prior to my resection surgery in October I had a CT scan which indicated that my tumor was gone - it had responded 100% to the chemo/radiation treatment.  The best possible outcome.  Regardless, my surgeon removed that portion of my rectum where the tumor "had" been.  He also collected four lymph nodes for examination.

    The surgical path report indicated no evidence of disease (NED) which was wonderful.  However, my surgeon thought it wise to temporarily divert my intestines with an ileostomy to allow my rectal resection to better heal.  I am now living with an ileostomy and it has disrupted my life (sleep pattern altered significantly; weight loss; social isolation; depression).

    Following a brief recovery period after my surgery, my oncologist recommended 12 weeks of adjuvant chemo (mop-up chemo) therapy.  I negotiated for only 6 sessions of FOLFOX6.  After three sessions I could not take anymore.  I stopped the treatment.  My weight plummeted to 128 (I started this cancer journey weighing 150).  My energy level and stamina were low and seriously impacted my ability to do virtually anything without having to rest (a fatigue that is so deep and pervasive that it is hard to describe).  My blood chemistry was so suppressed that I was either going to have to have blood transfusions, IV therapy or hospitalization to improve my ability to withstand further chemo therapy.

    That is when I said no more for me.  I made that decision after deliberation, prayerful thought, and much research.  The greatest issue for me has been and will continue to be quality of life.  My treatment had reached a point where my quality of life was significantly degraded by the chemo.  I will soon be 67.  The average life span for a male in the U.S. is between 76 and 84, depending upon which government database you select.  The likelihood of adjuvant chemo extending my lifespan is measured in a small percentage but at the same time I was experiencing the degradation of my quality of life.  I said no more.

    This was my decision, as it should be.  I have taken into account medical advice, my feelings and desires, and the impact my decision has had and will forever have on my family.  None of us live in a vacuum but at the same time my body is only occupied by me.  I am the captain of my ship, the master of my soul.  I borrowed that sentence from the poem Invictus by Willaim Ernest Henley, quoted fully below.

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find me, unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.

    Mr. Henley wrote those words after enduring leg amputation and facing the recommendation to amputate his other leg.  But instead he chose an alternate procedure which was successful.  Thus the emotion and true expression contained in his verbage. 

    I identify with Mr. Henley's situation and decision.  Your father may as well.

    Jim

  • Vette04
    Vette04 Member Posts: 7

    Tough decision, for sure...

    Mark:

    My situation is similar to your father's, but my rectal cancer is stage 2, not 3.  Statistically, that means things are different but what is not different is the fact that each case of cancer is unique.  Decisions must be made and the person who should make the decisions is the patient, as long as that person is mentally capable to do so.  I say this for a few reasons.  The patient is in the best position to know what impact the disease and its treatment is having on one's health and the patient is the person who must live with the consequences of those decisions, therefore he must be empowered to make the decisions.

    I was diagnosed in May 2017 with rectal cancer.  After a few months of testing I underwent neoadjuvant chemo/radiation treatment for five weeks.  Immediately prior to my resection surgery in October I had a CT scan which indicated that my tumor was gone - it had responded 100% to the chemo/radiation treatment.  The best possible outcome.  Regardless, my surgeon removed that portion of my rectum where the tumor "had" been.  He also collected four lymph nodes for examination.

    The surgical path report indicated no evidence of disease (NED) which was wonderful.  However, my surgeon thought it wise to temporarily divert my intestines with an ileostomy to allow my rectal resection to better heal.  I am now living with an ileostomy and it has disrupted my life (sleep pattern altered significantly; weight loss; social isolation; depression).

    Following a brief recovery period after my surgery, my oncologist recommended 12 weeks of adjuvant chemo (mop-up chemo) therapy.  I negotiated for only 6 sessions of FOLFOX6.  After three sessions I could not take anymore.  I stopped the treatment.  My weight plummeted to 128 (I started this cancer journey weighing 150).  My energy level and stamina were low and seriously impacted my ability to do virtually anything without having to rest (a fatigue that is so deep and pervasive that it is hard to describe).  My blood chemistry was so suppressed that I was either going to have to have blood transfusions, IV therapy or hospitalization to improve my ability to withstand further chemo therapy.

    That is when I said no more for me.  I made that decision after deliberation, prayerful thought, and much research.  The greatest issue for me has been and will continue to be quality of life.  My treatment had reached a point where my quality of life was significantly degraded by the chemo.  I will soon be 67.  The average life span for a male in the U.S. is between 76 and 84, depending upon which government database you select.  The likelihood of adjuvant chemo extending my lifespan is measured in a small percentage but at the same time I was experiencing the degradation of my quality of life.  I said no more.

    This was my decision, as it should be.  I have taken into account medical advice, my feelings and desires, and the impact my decision has had and will forever have on my family.  None of us live in a vacuum but at the same time my body is only occupied by me.  I am the captain of my ship, the master of my soul.  I borrowed that sentence from the poem Invictus by Willaim Ernest Henley, quoted fully below.

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find me, unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.

    Mr. Henley wrote those words after enduring leg amputation and facing the recommendation to amputate his other leg.  But instead he chose an alternate procedure which was successful.  Thus the emotion and true expression contained in his verbage. 

    I identify with Mr. Henley's situation and decision.  Your father may as well.

    Jim

    Thank You

    Jim, thank you for sharing.  I think what you have experienced with the chemo is exactly what he is afraid of.  I'm going to pass this along to him.

    Take Care,

    Mark

  • JanJan63
    JanJan63 Member Posts: 2,478
    edited January 2018 #5
    Hi Mark and welcome! Did they

    Hi Mark and welcome! Did they say your dad was cancer free based on his CEA level? Or in combination with the PET scan? My CEA level was always low even when I had a huge tumour, always below 2. So that kind of scared me for your dad. They'll keep checking on things, I assume.

    I hope for the best for your dad! Please do keep everyone informed about his journey, it is very helpful.

    Jan

  • Vette04
    Vette04 Member Posts: 7
    JanJan63 said:

    Hi Mark and welcome! Did they

    Hi Mark and welcome! Did they say your dad was cancer free based on his CEA level? Or in combination with the PET scan? My CEA level was always low even when I had a huge tumour, always below 2. So that kind of scared me for your dad. They'll keep checking on things, I assume.

    I hope for the best for your dad! Please do keep everyone informed about his journey, it is very helpful.

    Jan

    Actually she made that

    Actually she made that declaration after the results of the PET came in and then I think the CEA just reinforced (in her mind) what she had said.  Yes they will keep checking on things.  She wants to see him every 3 months.  I do like his onc, she is no nonsense and straightforward.

    I appreciate you responding Jan...I have read some of your posts and know you are going through a lot yourself.

    I will keep you in my prayers,

    Mark

  • Vette04
    Vette04 Member Posts: 7
    edited January 2018 #7

    Best wishes for your Dad

    Welcome to the forum. So sorry to hear about your Dad's rough road the past few months. We all know just how difficult treatment decisions are. I totally respect his choice to not go with the chemotherapy. It's tough when you know lymph nodes were involved, but there are a lot of things he can do outside chemo to help.

    So glad to read you'll continue to work with physicians to monitor his progress. I am currently using alternative therapies, along with lifestyle changes. My Oncologist is on board and we are all very hopeful. 

    Looking forward to reading your updates. He is in my prayers.

    Sincerely,  Beth

    Alternatives

    Beth, can you elaborate on the alternative therapies and/or lifestyle changes that you referred to or point me in the right direction to look them up?

    Thanks so much,

    Mark

  • Woodytele
    Woodytele Member Posts: 163
    Sounds pretty good

    all those numbers sound pretty good, I wish you and your dad the best!

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    Folfox didn't prevent

    Folfox didn't prevent reccurance in me and the overall percentage given as the positive outcome chemo offers is suprisingly low, so given your pop's age and the initial good indicators, plus the ongoing monitering they'll be doing anyway, I'd say it's a good call. The best of luck to him...........................Dave

  • Vette04
    Vette04 Member Posts: 7

    Folfox didn't prevent

    Folfox didn't prevent reccurance in me and the overall percentage given as the positive outcome chemo offers is suprisingly low, so given your pop's age and the initial good indicators, plus the ongoing monitering they'll be doing anyway, I'd say it's a good call. The best of luck to him...........................Dave

    Thanks Dave

    Thanks, I appreciate the feedback.  Is Beaumont where you live?

    Mark

     

  • beaumontdave
    beaumontdave Member Posts: 1,206 Member
    Vette04 said:

    Thanks Dave

    Thanks, I appreciate the feedback.  Is Beaumont where you live?

    Mark

     

    In beautiful SoCal, though my

    In beautiful SoCal, though my little hometown is turning into the edge of LA's mega-burb. Still an easy ride to the mountains, the desert, or points beyond. Only the beach and LAX have gotten harder to time and will my way to...................................................Dave

  • BRHMichigan
    BRHMichigan Member Posts: 368
    Vette04 said:

    Alternatives

    Beth, can you elaborate on the alternative therapies and/or lifestyle changes that you referred to or point me in the right direction to look them up?

    Thanks so much,

    Mark

    Alternative therapies

    I can share what I'm doing right now. I found an Integrative Oncologist at University of Michigan. He was able to prescribe Iscador injections for me. I am only on my 5th shot since the new year. I take an I. V. of 100g of vitamin C once a week, takes 3 hours. I have had ozone saunas, acupuncture, and I take quite a few supplements. This Dr recommended a Mediterranean diet with no bread, and 10 servings of vegetables a day, strong green tea, smoothies and juicing mainly vegetables. You need to mend relationships, find peace, grow or maintain your spirituality. I also try to exercise more. Avoid stress. 

    Some patients prefer TCM or traditional Chinese medicine. I have heard of many at Stage 4 live long lives under TCM treatments. One physician told me he has seen cancer controlled and eradicated with diet alone. 

    It's so important to believe in whatever you choose. I researched for months before ultimately choosing path that led me here. Still hopefully have a long way to go. 

    Also important is finding good physicians you trust. I work with the doc I mentioned above as my primary caregiver. I also see another MD at the I. V.  clinic, a traditional Oncologist, a chiropractor, and a naturopath. I certainly don't have frequent appointments with all of them! But the resources are all there when I need them. 

    There is a ton of information out there. When I first told my Chiro about my diagnosis, he said my chances for survival would grow exponentially if I left the country. 

  • BRHMichigan
    BRHMichigan Member Posts: 368
    edited January 2018 #13

    Tough decision, for sure...

    Mark:

    My situation is similar to your father's, but my rectal cancer is stage 2, not 3.  Statistically, that means things are different but what is not different is the fact that each case of cancer is unique.  Decisions must be made and the person who should make the decisions is the patient, as long as that person is mentally capable to do so.  I say this for a few reasons.  The patient is in the best position to know what impact the disease and its treatment is having on one's health and the patient is the person who must live with the consequences of those decisions, therefore he must be empowered to make the decisions.

    I was diagnosed in May 2017 with rectal cancer.  After a few months of testing I underwent neoadjuvant chemo/radiation treatment for five weeks.  Immediately prior to my resection surgery in October I had a CT scan which indicated that my tumor was gone - it had responded 100% to the chemo/radiation treatment.  The best possible outcome.  Regardless, my surgeon removed that portion of my rectum where the tumor "had" been.  He also collected four lymph nodes for examination.

    The surgical path report indicated no evidence of disease (NED) which was wonderful.  However, my surgeon thought it wise to temporarily divert my intestines with an ileostomy to allow my rectal resection to better heal.  I am now living with an ileostomy and it has disrupted my life (sleep pattern altered significantly; weight loss; social isolation; depression).

    Following a brief recovery period after my surgery, my oncologist recommended 12 weeks of adjuvant chemo (mop-up chemo) therapy.  I negotiated for only 6 sessions of FOLFOX6.  After three sessions I could not take anymore.  I stopped the treatment.  My weight plummeted to 128 (I started this cancer journey weighing 150).  My energy level and stamina were low and seriously impacted my ability to do virtually anything without having to rest (a fatigue that is so deep and pervasive that it is hard to describe).  My blood chemistry was so suppressed that I was either going to have to have blood transfusions, IV therapy or hospitalization to improve my ability to withstand further chemo therapy.

    That is when I said no more for me.  I made that decision after deliberation, prayerful thought, and much research.  The greatest issue for me has been and will continue to be quality of life.  My treatment had reached a point where my quality of life was significantly degraded by the chemo.  I will soon be 67.  The average life span for a male in the U.S. is between 76 and 84, depending upon which government database you select.  The likelihood of adjuvant chemo extending my lifespan is measured in a small percentage but at the same time I was experiencing the degradation of my quality of life.  I said no more.

    This was my decision, as it should be.  I have taken into account medical advice, my feelings and desires, and the impact my decision has had and will forever have on my family.  None of us live in a vacuum but at the same time my body is only occupied by me.  I am the captain of my ship, the master of my soul.  I borrowed that sentence from the poem Invictus by Willaim Ernest Henley, quoted fully below.

    Out of the night that covers me,
    Black as the pit from pole to pole,
    I thank whatever gods may be
    For my unconquerable soul.

    In the fell clutch of circumstance
    I have not winced nor cried aloud.
    Under the bludgeonings of chance
    My head is bloody, but unbowed.

    Beyond this place of wrath and tears
    Looms but the Horror of the shade,
    And yet the menace of the years
    Finds, and shall find me, unafraid.

    It matters not how strait the gate,
    How charged with punishments the scroll,
    I am the master of my fate:
    I am the captain of my soul.

    Mr. Henley wrote those words after enduring leg amputation and facing the recommendation to amputate his other leg.  But instead he chose an alternate procedure which was successful.  Thus the emotion and true expression contained in his verbage. 

    I identify with Mr. Henley's situation and decision.  Your father may as well.

    Jim

    Thanks, Jim

    ...for continuing to share your story, and especially for sharing that poem. What an incredible back story. 

    Hope you're enjoying that grandbaby and regaining your strength! 

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    edited January 2018 #14
    Decisions

    This journey is not easy.  Every one of us has to come up with plans and decisions.  Major decisions.  Whatever your dad chooses, I know he has thought about it a lot.  Quality of life should be an important consideration.  There are a lot of factors that need to be weighed in.  I found myself being confronted with having to make tough decisions.  I know your dad knows what's best for him.  The doctors may know a treatment protocol but at the end of the day we, the patients, are the ones who should make the decision.  

  • Vette04
    Vette04 Member Posts: 7
    edited January 2018 #15

    Alternative therapies

    I can share what I'm doing right now. I found an Integrative Oncologist at University of Michigan. He was able to prescribe Iscador injections for me. I am only on my 5th shot since the new year. I take an I. V. of 100g of vitamin C once a week, takes 3 hours. I have had ozone saunas, acupuncture, and I take quite a few supplements. This Dr recommended a Mediterranean diet with no bread, and 10 servings of vegetables a day, strong green tea, smoothies and juicing mainly vegetables. You need to mend relationships, find peace, grow or maintain your spirituality. I also try to exercise more. Avoid stress. 

    Some patients prefer TCM or traditional Chinese medicine. I have heard of many at Stage 4 live long lives under TCM treatments. One physician told me he has seen cancer controlled and eradicated with diet alone. 

    It's so important to believe in whatever you choose. I researched for months before ultimately choosing path that led me here. Still hopefully have a long way to go. 

    Also important is finding good physicians you trust. I work with the doc I mentioned above as my primary caregiver. I also see another MD at the I. V.  clinic, a traditional Oncologist, a chiropractor, and a naturopath. I certainly don't have frequent appointments with all of them! But the resources are all there when I need them. 

    There is a ton of information out there. When I first told my Chiro about my diagnosis, he said my chances for survival would grow exponentially if I left the country. 

    Thanks so much

    Beth, thanks so much for the info. 

    Mark

     

  • JanJan63
    JanJan63 Member Posts: 2,478
    Vette04 said:

    Actually she made that

    Actually she made that declaration after the results of the PET came in and then I think the CEA just reinforced (in her mind) what she had said.  Yes they will keep checking on things.  She wants to see him every 3 months.  I do like his onc, she is no nonsense and straightforward.

    I appreciate you responding Jan...I have read some of your posts and know you are going through a lot yourself.

    I will keep you in my prayers,

    Mark

    Aw, you're sweet. Thanks Mark

    Aw, you're sweet. Thanks Mark! Yes, I'm having issues but I'm further along in my cancer stuff and so I'm more settled mentally than most people are at the beginning. And I have great respect for the caregivers. It's a very tough row to hoe, possibly harder than being the one with cancer.

    Take care,

    Jan