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Thread: My dad isn't coping well

  1. #1
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    My dad isn't coping well

    My dad has prostate cancer. He started treatment early, but failed to monitor the situation after a Lupron shot and radiation treatment nursed his psa to healthy numbers. About four months ago he went for a follow up and found out his cancer had already metastasized. Over the course of the past four months he has taken a bigger and bigger hit to his confidence. If he is not working himself to death, trying to solve all our family's problems in a single night, he is downloading and watching old movies from when he was a kid. This is hard to watch, but even harder to deal with. Recently he has started losing muscle strength, and ended up straining his back three weeks ago. He still has not recovered fully from the strain. My mom and I are trying to aggravate him to exercise and take in more protein in the hopes that if he feels stronger, then he will be more confident about his situation. He has stopped taking his daily vitamins though, and refuses to exercise or drink protein shakes or add protein powder to his diet. He says it is not the case but from my perspective it looks as though he has completely given up on his health. Is there anything I can do to motivate him?

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi mishaparem, and sorry for your Dad's situation and the anxiety you are feeling about it. It is certainly understandable. Have you thought of involving anyone outside the family in trying to change your Dad's attitude such as a minister, his doctor, a close friend, etc? That may prove more effective since the advice has not come from a family member.

    Good luck with this and we are here to help.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
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    He has never invited any of his coworkers over. I have tried to persuade him to consult his doctor, but he keeps telling me the "I already have an appointment with him in three months", that's when he has his checkup after the most recent Lupron shot. I'm sure that three months won't make that huge of a difference in the grand scheme of things, it is just very difficult to watch. If I try to bring him to church he will get furious, he just hates the institution called church, no matter the religion. He likes conversing with our dentist, but that does not happen often. I am not sure if I can even be the one to bring anyone anyone else into the issue seeing as he tries to mask his situation from me all the time. The only information I have about his progress is from my mom, because the only thing I get from dad is the, "I'm fine".

    I've tried every form of persuasion I can think of from sympathy to patience to all but scolding, and I've only ended up distancing our relationship. I'm getting rather desperate now to bring him back to caring about his health. He used to like swimming, but now it has gotten to the point where he doesn't even want to swim. I'm considering spiking his drinks with protein powder, if he doesn't care about his health, that doesn't mean I can just sit by and watch without doing anything.

  4. #4
    Administrator Top User Kermica's Avatar
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    Jul 2009
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    6,585
    How very tough for you, mishaparem. The hardest thing is that, at the end of the day, your father's choices are his to make. This is true for everyone, of course, but even more so for cancer patients for many reasons. For loved ones, the hardest thing is sometimes learning how to respect those decisions.

    None of that means that you should stop trying or stop being creative in how you try. Another thing you could do is get in touch with the American Cancer Society or other organization who deal with cancer every day in every way to find out what insights they may have for you. I don't have answers but am here to listen and to throw out things you may not have tried. I expect that others will chime in with thoughts that I haven't had so hang in here and we will do our best to help.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  5. #5
    Top User pbj11's Avatar
    Join Date
    May 2007
    Posts
    6,595
    Have your Mom get in contact with the doctor and relay his behavior to the doc. He's depressed. Who wouldn't be? Hopefully the doctor can arrange an earlier visit and he can suggest an anti-depressant for your Dad.

    Other than that, Kermica is correct. This is your Dad's call -- whether it's the right one or not. I'd just like to see him "balanced" before making this call, if you understand.

    I'm so sorry that this situation escalated to this degree. I'm sure it's heartbreaking for your family to watch and know where this is leading. Just keep loving him and giving him support. Don't let this ruin the time you have left with him. Miracles happen and maybe the lupron will push the cancer back again.

    God bless and we're here to support you.

    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  6. #6
    Administrator Top User ChemoMan's Avatar
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    Hi mishaparem

    I to think your Father is very depressed. This is natural as cancer is a very depressing disease, but depression is going to reduce his chances of fighting this and surviving. I urge you to try and talk dad into seeing someone.

    The other thing you need to do is go down to the prostate cancer forum and post there. We have a very good bunch of supportive guys down there and they will walk with you through this. They can also give you a much better understanding of this disease than I can. I will move this thread down there for you but the orginal posting will remain here.

    Good luck

  7. #7
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    Interesting advice everyone, I will try what pbj11 suggested - seeing if the doctor can prescribe an antidepressant, unfortunately it is not a matter of the doctor having time, my dad simply does not want to go to the doctor earlier than that appointment.

  8. #8
    hi mishaparem,
    My husband is stage 4 prostate cancer and it is in his bones (hip rib and large part of his spine) I sooo understand your frustration and the helplessness u maybe feeling in helping your dad I go through it every day . U have to remember your dad is also a man and men can be very difficult when it comes to illnesses 9sorry fellas this might be hard to read for some of u its meant with the best intentions) what I have learned with mine is ego and pride play a big part don't push things at him try to make it his idea men tend to be more accepting to things that r their idea ... My husband went through a phases also not wanting to take his pills vitamins or prescribed he was angry didnt wanna talk didnt wanna see anyone but he continued to go to work and still does The one thing no matter what is you have to understand that no matter how much u dislike their decision their treatment or non treatment is their s and theirs alone to make. I hate it to but I have accepted that it is his choice.. Cancer is a horrible thing to have and to have prostate cancer is one of the worst kind for a man it changes his view of his self and his ability's as a man even though they r still the men we love and our view of them hasn't changed , my view of my husband has become more honored to know the man he is and the fight he has been fighting I admire him for going to work every day still even when he don't feel to good ..... I love him for staying here with me and fighting taking treatments he didn't wanna take when he could have gave up .. I hope this helps u some what,, at least lets u know u r not alone in this fight
    best of luck to u and your dad
    Chrissy
    stage 4 prostate cancer in bone
    Hip, ribs, and spine from t to L
    diagnosed in sept 08 psa 1400 gleason 9
    03/11 psa11.
    04/11 psa14.
    05/11 psa 22.
    06/11 psa 23.
    07/11 psa 34.10
    08/11 psa 36.48
    2010/2011Ketaconazall, taxoter/predisone jevetana all failed
    has also had casodex ,elizard, and lupron there r others but don't have the names yet

  9. #9
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    I thought I would post an update. Kaiser Permanente pretty much put a cross on my dad about the time of my last post, and said there's nothing they could do, best to keep him comfortable for the month or two he had left. All the doctors stopped visiting his room, the nurses didn't even bother turning him over in his bed so he got those nasty bruises from lying in bed almost a month straight without moving. My mom got furious and demanded nearly five doctors one after the other, one of the receptionist people tried to set the security on her because she threatened to, "destroy Kaisers Permanente by all legal means" so instead, the receptionist got escorted out because my mom actually used the phrase, "legal means". Anyhow, my mom kept her word and hired an attorney, next thing you know my dad is in a private room the size of an apartment, doctors visiting 2-3 times a day trying new things, looking for new solutions. My mom really knows how to keep a grudge though, so we made ea smooth transition from Kaiser to Stanford Hospital in Palo Alto where he is now. Funny story #2 - my dad's current oncologist used to supervise the oncologist at Kaiser, and all he could say about her was, "oh yeah, I remember her". Anyhow my dad just finished his treatment of Oberturon, some kind of new brand new FDA approved drug that does not stop the spread of cancer cells, nor the production of some kind of hormones that the cancer cells produce, but stops the effects of hormones on blood cell counts. He began chemo, but had to go in for immediate surgery last week to remove tumors on two back bones that were putting pressure on his spinal chord. Close call to permanent paralysis, but he was able to keep full motor and sensory ability. They are stabilizing his blood levels again, and will do a radiation treatment on a couple bones in his neck to remove dangerously large tumors there before continuing with chemo. My dad's neighbor in the room is a prostate cancer survivor, he has had all his cancer removed, and they are flushing the chemo out of his system now, so that is a good bit of morale booster. My dad has completely wasted away physically though, he has absolutely no muscle left just literally skin and bone, and no one in my family is able to do anything about it. My sister doesn't help with that silly diet she came up with that has absolutely no source of protein, further more she has read that protein helps cancer cells reproduce (duh) so she has made protein her #1 enemy Apparently she's the smartest in the family, and if the doctors don't say what she wants to hear she calls them a bad doctor the only good news on that front is she is only here four-ish times a year and lives in NYC the rest of the time. At this point the cancer has spread all the way up my dad's back and neck, not sure about hips, but at least there is a light at the end of the tunnel. So long as my dad doesn't die of atrophy or anorexia.

 

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