NEED ADVICE..DAD IN LOTS OF PAIN

Jade48

Hi guys.....

 

Ive posted before about my dad. Stage 4 ...metastisized (sp)? to stomach, liver, and lungs. His only form of treatment right now is herceptin only. And he was also taking Rick Simpson oil. He hasnt had a whole lot of improvement on the cat scans....He has been experiencing major pain in his back that radiates to his stomach and it goes back and fourth. The left side. He was just taken to the hospital for it about 2 weeks ago. They dumped every kind of pain med they could think of in his port and nothing touched it. It was a looong night, we stayed up all night with him. He was in pain all night...pacing...could not sit still. I think he slept all of an hour. His dr examined him in the morning and said lets try an antibiotic and some muscle relaxers. That did the trick. After they started the muscle relaxer IV he said he felt relief. He was able to come home that night and felt great.

Fast forward to last night...pain is back....hes still on a muscle relaxer and oxycodone...and he is also taking a liquid morphine. The pain is being held at bay just enough for him to not be rushed to the ER but hes hurting still. The pain actually came back a few days ago but he said it wasnt as bad, and it was not radiating from back to front. It was either just in the back, or just in the abdomen. Now he says its starting to amp up a little in spite of efforts to control it. He desperatly wants to stay out of the hospital, and I dont blame him. He sat in the ER for hours upon hours writihing in pain while they kept us waiting and guessing at some kind of treatment. I asked his dr if we could do a nerve block. I read its soemtimes used to control pain for people who have pancreatic cancer. He said he would have to consult an anesthesiologist, tomorrow. I was hoping if he had to go to the ER tonight we could try that, but no such luck. My mom said hes not eaten all day....he has slept some..so thats good. Shes going to try and give him some soup. Does anyone have any suggestions as to what this could be, and ideas on how to handle it? Im at a loss. It seems weve tried everything. He doesnt want to stop treatment yet...so they have a hospice nurse coming tomorrow to see about pallative care. Our hope is that they can help him  more with his pain...

LorettaMarshall

Jade~Personal observations from where I "sit" as a Stage IV also

Dear Jade:

You ask for advice.  I can only share my own personal feelings.  I am saddened to read your letters knowing that Dad’s cancer has metastasized to his Stomach, his Liver and his Lungs in addition to his Esophagus.  Herceptin is good but not that good with cancer raging this many places. 

Your questions are ones that everyone wrestles with when “nothing is working” and resources have seemingly been exhausted.  Speaking of his intense pain, you ask, “Does anyone have any suggestions as to what this could be?”   Jade, there is no gentle way to say, “It seems like the cancer is winning.”  Ideas on how to handle it is another matter that your Dad will have to decide.  Believe me, I know you’re “at a loss.”  From reading your previous posts, I do believe you’ve tried everything. 

You’ve said some “familiar words” that leads me to believe that your Dad is either in a bit of denial as to the extent of his metastasis or he doesn’t want you to know his true feelings.  You say, “He doesn’t want to stop treatment YET!”  But in reality, with Stage IV cancer patients like myself, there will come a time that the “progression-free survival” time will become less and less.  Absent a pure miracle from God, there will be a time when Dad’s body will say, “Enough is enough even if he wants to go on with treatments!”  At a time like this, emotions are understandably raw and everyone’s nerves are frazzled.  You are certainly at your wits end.

And now entering the 5^th year of my survival, that PFS factor is diminishing gradually.  I’ve just finished up my 3^rd series of chemo treatments and have had one targeted radiation series for tumors on the Caudate lobe of my Liver.  The cancer isn’t choosey about whose body it invades.  So I as a Stage IV Ovarian Cancer patient with multiples tumors in the Peritoneal cavity of my body will one day have to say, “Enough is enough.”

Major surgery and chemo treatments have given me an extended period of survival but absent a true miracle, my time here on earth will end.  Each series of treatments has taken a gradual toll on my body.  With each regimen, my body is weaker than before I began the series.  I liken my cancer to those California wild fires.  Just like those planes fly over and dump gallons of water on the fire, it only serves to lessen the flame for a bit in a small spot. 

Likewise, all the radiation and chemo that I have pumped into my body on 4 different occasions has not eradicated the “flame called Ovarian Cancer, Stage IV, and Peritoneal Carcinomatosis.”  Oh yes, it has “dampened it for a bit” but it has not eradicated it.  Some things improve while others crop up anew.  Jade I tell you all this because from what you write, truly cancer must be aflame in your Dad’s body.   May I ask if anyone has had a frank discussion with Dad’s oncologist?  Who accompanies Dad to the doctor?  Does Dad and the doctor speak openly?  Do any members of the family ask questions as to what the doctor expects relative to Dad’s prognosis?  It seems that while doctors are not God, they do know when a patient is no longer responding to treatments.  With their training, they have a good idea of what is going to happen to a particular patient, but if that patient doesn’t ask directly, the doctor is usually reluctant to “go there”!

 The way you describe Dad’s pain, I don’t even know how he sleeps.  And even though he may want to attempt to have more treatments, it sounds like his doctor isn’t prescribing any aggressive treatments for good reason.  It’s apparent that Dad is in no physical condition to withstand the rigors of more treatments and Herceptin alone is apparently not proving to be helpful.  This produces a dilemma for everyone involved. 

The only suggestion that I have is one that you’ve mentioned.  You say a hospice nurse is coming tomorrow.  I would welcome him/her with open arms.  Hospice is known to give good “palliative care”.   When traditional treatments have run their course, keeping a patient’s pain level as low as possible seems to be their main goal.  Sad to say, with all your family’s efforts to help Dad get better, it is obvious that he is worse.  A patient can stand only so much pain.  One thing about Hospice services, you will have a nurse there that will do everything possible to help your dad rest.  You won’t have to go down to that crowded Emergency room filled with patients where you’re given a number and told to wait in line.  When I’ve had to go, I’ve often thought, “Man I wish I had stayed home now.  I think there are some people in here hacking and coughing and throwing up in a plastic bag—that’s all I need—going home with more than I came with.”  I dread the ER, and the only way to get at the front of the line is to be hauled in on a stretcher.  So I’m serious, when next Dad gets in another fix with uncontrollable pain, why not call the local rescue squad?  They will take him to the hospital, and he won’t have to be given a number and put at the back of the line.  He will be treated before all those in the “waiting room.” 

And Jade, as for eating—as much as Mom would like to see your Dad eat some soup or anything else, his pain may be so intense that he cannot eat.  Maybe he’s nauseated and feels like throwing up at the thought and smell of food.  It does get to that point you know.

Honestly, there appears no good answers to your dad’s dilemma.  My husband and I have conversed and made friends with many an Esophageal Cancer patient, and when their attempts to continue chemo treatments made them sicker than they were before they started, more than one said, “This is it.  Enough is Enough.”  And to be totally honest, we have had to say “Goodbye” to many of them. 

And the day of my departure is ever a question on the back burner of my mind.  One day my God will say to me, “Loretta—enough is enough.  It’s time to come HOME!”  The good news is that I’m ready to meet HIM.  The sad news is that I never want to leave my family.  Could it be that your dad is in the same boat with me, but won’t express his true feelings?  You’re in a place no one wants to be and believe me, so is he.

There are a couple of good articles written that I will share with you.  I will list them below my name.  These articles should be read by every family member when one in the family has cancer.  One is by the Mayo Clinic about when to stop treatments.  I will reference a link for this one that I’ve shared on this site before about “STOPPING TREATMENT…WHEN ENOUGH IS ENOUGH.”  I have kept this article since it was written in 2006.  Their article today is not nearly as insightful as the first one.  Fortunately, I saved the older version in my WORD file. 

The other one is from the American Cancer Society.  Since both are so lengthy, I will post the links below my name.  I’ve found this ACS article to be very comprehensive as well, and there is a portion referencing Hospice that I will put in print here, but more can be read at the Hospice link itself. 

My dear Jade.  I’m old enough to be your grandmother.  I’ve had to say goodbye to many dear loved ones in my immediate family, as well as relatives whom I love dearly.  It’s never easy.  My best advice would be not to be in denial relative to Dad’s cancer and his future prognosis.  Continue to give your dad lots of hugs and kisses and tell him how much you love him and thank him for all the sacrifices he has made so that he could give you things that he never had.  At least that’s the way it is for most parents that grew up in my generation.  As for me, I never knew how to truly appreciate all the sacrifices my parents made for me, especially my mom, until I became a mom myself.  And while she is no longer here, the things she has done and said have become seared in my memory.  I thank God that I still have the capacity to remember.  There are so many things I am thankful for.  But as for my mom, she still lives in my memories and they become even fonder as the years go by.  “Memories are made of this.”

May God bless you Jade.

Love & prayers,

Loretta

Ovarian Cancer, Stage IV/Peritoneal Carcinomatosis-Diagnosed November 2012

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1.  http://csn.cancer.org/node/307530

(My note:  Mayo article begins below.  I’m sorry Mayo Clinic no longer has this article on their site.    Perhaps it would be a good idea to print out more than one copy of this and give a copy to each family member who may be “torn” over this decision.  It’s not easy, but the decision must rest with the cancer patient themselves.  They are the ones in pain suffering the most.)

 “STOPPING CANCER TREATMENT: DECIDING WHEN THE TIME IS RIGHT

Explore what it means to stop your cancer treatment — from what to consider when deciding, to what to expect once cancer treatment ends…”

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2.       https://www.cancer.org/treatment/survivorship-during-and-after-treatment/when-cancer-doesnt-go-away.html

“…How long can treatment go on?

This is a very good question to ask, but one that’s very hard to answer. There’s no way to give an exact time limit. The answer depends entirely on your situation and many factors, such as:

• The type of cancer you have.....The treatment schedule or plan.....The length of time between cancer recurrences

• The aggressiveness of the cancer cell type.....Your age.....Your overall health.....How well you tolerate treatment

• How well the cancer responds to treatment.....The types of treatment you get

• Because there are no guarantees that you can hold on to, it can be hard to cope with chronic cancer. Talk to your doctor and the rest of your cancer care team about any questions or concerns you have. They know your situation best and may be able to give you some idea of what to expect.

  How do I know if I should keep getting treatment?

  How much is treatment helping?

  For some people, getting cancer treatment helps them feel better and stronger. It also helps control the cancer so they can live longer. But for others, being in treatment works the opposite way – they may reach a point where it only makes them feel worse. Side effects might keep you from enjoying the life you have left. Only you can decide how you want to live your life. Of course, you’ll want to know how your family feels about it, too. Their feelings are important since they are living through the cancer with you. But keep in mind, the final decision is yours.

  Do the benefits outweigh the side effects?

  When a person has had many different treatments that didn’t help stop the cancer, it may mean that it’s become resistant to all treatment. At this time you might want to weigh the possible limited benefit of a new treatment against the possible downsides, including the stress of getting treatment and the side effects that go with it. Everyone has a different way of looking at this. Talk to your cancer care team about what you can expect from treatment. They can help you make the best decision for yourself and your family.

  What is palliative care?

  Palliative care focuses on relief of physical and emotional symptoms related to illness– it’s not expected to treat the cancer or other disease. The goal of palliative care is to make your life the best it can be at any time- before treatment, during treatment or after treatment.

  This means that symptoms like nausea, pain, tiredness, or shortness of breath are treated and controlled. Palliative care also helps with emotional symptoms such as stress and depression. Sometimes medicines are used, but other types of treatment such as physical therapy and counseling may also be used.

  Your cancer care team may include providers who are specially trained in palliative care. If you need help finding good palliative care options, call us.

  What is hospice care?

If at some point treatment can no longer control the cancer or the benefits no longer outweigh the side effects, you may feel better with hospice care. The hospice philosophy accepts death as the final stage of life and does not try to stop it or speed it up. The goal of hospice is to help patients live as alertly and comfortably as possible during their last days. Most of the time, hospice care is given at home. It can also be given in hospitals, nursing homes, and hospice houses. Your cancer may cause symptoms or problems that need attention, and hospice focuses on your comfort. If you’d like to learn more about this, see Hospice Care…”

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3.  https://www.cancer.org/treatment/finding-and-paying-for-treatment/choosing-your-treatment-team/hospice-care.html

“Hospice Care

Here we describe hospice care, which provides humane and compassionate care for people in the last phases of an incurable disease so that they may live as fully and comfortably as possible…”

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Deathorglory

Sounds Awful

Hello Michelle,

It sounds awful what your dad is going through.  I think you're on the right track with the hospice folks. that's exactly what they do for a living.  My own experience with extreme pain comes from dealing with chronic pancreatitis.  I've had about 100 episodes of it since age four and it comes with intense pain that radiates from the back to the abdomen (that's why the nerve blocking is used for pancreatic cancer as well as chronic pancreatitis probably; that radiating pain seems to be a pancreas thing).  The most effective pain medication I've had has been dilaudid.  It knocks me out and I'm hopefully in less pain when I wake back up, if not then I ask for more.  

Hopefully the hospice folks can get his pain to a manageable state.  I go to a major cancer center and they have doctors who specialize in pallative care.  As in that's all they do.  Hopefully, your center has folks like that as well.

Sorry to hear your news, but wishing the best,

Ed

Jade48

Loretta, 

Loretta, 

Thank you so much for your response. I have 4 brothers, and my mom and dad are still together. We all knew this time would come. My dad , in the beginning. Seemed more at peace with things, I think because he didnt feel as sick. But, now, lately. Hes been very scared. Anxious...dont want my mom to leave his side.  This is very unsettling.  I think hes mostly worried about leaving my mom. Shes relied on him alot over the years....but...she has all of us, and she still has decent health and gets around fine. My dad is not only protective of her, but, hes also sort of reverted back to a little boy. Scared, worried...that's why he doesnt want to give up on treatment.  Ive been to a few of his appointments at his oncologists office. The dr usually does a full blood work up and if things look ok, and dad says he feels up to it,  he lets him go ahead with treatment.  His Cat scans havent shown that the cancer is spreading like wildfire, but, small spots get a tiny bit bigger. His oncologist was going to add taxotere to his herceptin regimin...he actially has an appt on April 14th for a treatment. So...I dont know. This pain thing has been new...just in the last few weeks. Other than that, hes usually ok. Just tired and feels kinda crappy...like run down. But hes still been doing his oil paintings and going to the store with mom...hes not been bed ridden. So, weve just not been sure what to do. But, the pain issue has pushed us to seek out advice from hospice. They have a nurse coming to the house today to discuss options. We will see what happens with that. Its been a rollercoaster ride of emotions for sure. 

I appreciate you getting back to me and I will read the articles you sent. 

Ill keep u posted on what we find out later. 

Thank u again. 

Xoxo

 

 

 

Jade48

Jade48 said:

Loretta, 

Loretta, 

Thank you so much for your response. I have 4 brothers, and my mom and dad are still together. We all knew this time would come. My dad , in the beginning. Seemed more at peace with things, I think because he didnt feel as sick. But, now, lately. Hes been very scared. Anxious...dont want my mom to leave his side.  This is very unsettling.  I think hes mostly worried about leaving my mom. Shes relied on him alot over the years....but...she has all of us, and she still has decent health and gets around fine. My dad is not only protective of her, but, hes also sort of reverted back to a little boy. Scared, worried...that's why he doesnt want to give up on treatment.  Ive been to a few of his appointments at his oncologists office. The dr usually does a full blood work up and if things look ok, and dad says he feels up to it,  he lets him go ahead with treatment.  His Cat scans havent shown that the cancer is spreading like wildfire, but, small spots get a tiny bit bigger. His oncologist was going to add taxotere to his herceptin regimin...he actially has an appt on April 14th for a treatment. So...I dont know. This pain thing has been new...just in the last few weeks. Other than that, hes usually ok. Just tired and feels kinda crappy...like run down. But hes still been doing his oil paintings and going to the store with mom...hes not been bed ridden. So, weve just not been sure what to do. But, the pain issue has pushed us to seek out advice from hospice. They have a nurse coming to the house today to discuss options. We will see what happens with that. Its been a rollercoaster ride of emotions for sure. 

I appreciate you getting back to me and I will read the articles you sent. 

Ill keep u posted on what we find out later. 

Thank u again. 

Xoxo

 

 

 

I will add that last night he

I will add that last night he improved. My sister in law stopped by there and said he was alert, working on an oil painting, and had eaten a good dinner. So we were all able to rest for a moment.