Topic: Tomorrow Dr. Appt.

Hello Everyone,

I don't post too often, but do visit the site frequently and get a lot of good information from you all.

Tuesday my dad sees the oncologist, and I believe she's going to suggest stopping all treatment. To recap briefly, he was diagnosed in Dec. 2007, unresectable, one Therasphere treatment, two courses of Xeloda. He is in pain and nauseous nearly all the time, and we believe getting depressed. My brother talked to the doctor the other day, and she told him if an infection didn't get him first, he probably only has a couple of months left. His wife wants to get another opinion (he's had 3) and she believes in vitamins, nutrition, etc., but he is too weak to go anywhere else, and is the stubborn sort who had made his decision on doctors/hospital/treatment, and is by-god going to stick by that.

My brother and I will be at the appointment on Tuesday. Please keep us in your thoughts and prayers as we deal with the aftermath, and figure out next steps for our family.

Thanks,

Barbara Ann

Re: Tomorrow Dr. Appt.

Hi Barbara Ann:

First, I am sorry that you and your family are going through this.

You haven't given a ton of detail (like me, you probably get tired of telling the story over and over) and we know that CC takes a different course in different people.

Having said that though, I am not sure I would be as certain that your dad is as "endstage" as the doctor is indicatin, and if he is, he should be able to feel better than he is feeling.  Is he being given adequate pain medication? Does he have stents to relieve bile problems or is that not an issue for him?

Depression, I am sure, is a problem for a lot of people here, and it seems to go hand in hand with the hopelessness around this disease.

You probably dont need more opinions to confirm what he has, but it may be helpful for your mom to seek other options in terms of treatment and in trying to get him into a better quality of life (most notably pain relief) for what time he does have.

I hope I am not offering information that is just simplistic -- I do think he can certainly be made more comfortable, even if his time left is limited now.

Thinking of you,
Irene

Re: Tomorrow Dr. Appt.

Thanks, Irene. Yes, he has adequate pain relief. Stent was put in place in June. Everything just seems to have accelerated so quickly. His wife (not my mother; she died of multiple myeloma 16 years ago) is 81, and he won't permit her to send records elsewhere (isn't that something???) As I mentioned in my original post, they did have 3 opinions, two in Chicago and one at Mayo. The update today was that he was vomiting again, and now she can't get any liquids down him. In some ways I think the best thing would be to get him in the hospital to stabilize and get him comfortable.

Best,

BA

Re: Tomorrow Dr. Appt.

I dont know where you live, but some places operate a service where you can phone a nurse and they can advise you on what to do.

Sorry your family is in this situation.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

5 (edited by JeffG Mon, 18 Aug 2008 08:27:01)

Re: Tomorrow Dr. Appt.

BarbaraAnn--- I certainly understand your frustation,anger,and sadness all wrapped together.  I wish there was something I could say to ease the tension.  I agree he could most probally be made more confortable.  As far as seeking out another opinion and trying something different is something we always push for. Howerver, if your Dad is is paramount with his decsion then I would respect his wishes.  In my opinion, if he has had several evaluations and they are all concurring, then listen to Dad and just try to do what willl make him more comfortable.  Sometimes I think caregivers/loved ones get caught up in the "I can make a difference syndrome"  The fact is you can and should but when you stop and look at the current situation, Dad's condition and the results of his scans, and the lack of effectiveness of the conventional medication ; which can surely make matters even worse.  I guess what I'm saying hope and advocation is number one in my book, but there is a turning point when comfort and love and listening to what the patient wants takes prescedence.  Maybe, focusing on no further treatments and allow time for the body to calm down and have some sense of normal functioning, will make his frame of mind more positive.  Although trying to remain positive in what usually , not all cases, is a no win situation.  I'm so sorry you and your brother are going through this rigorus and saddening time.  I guess hope sometimes clouds over the facts that this is a systemic disease.  weigh and decide, no right or wrong, but patient rights and desires, no matter how much we love them, is top priority. What last remaining control and say they have over this relentless disease and life, should certainly be listened too.  I sincerely wish your Dad and family, God's strenght with the immediate tough choices to make and/or follow and accept.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Tomorrow Dr. Appt.

Dear BarbaraAnn,

I can only repeat the good wishes and prayers everyone has already responded.  I have learned that I'm not going to listen to any of my doctors' prognosis viewpoints for me.   I hope so much you get some good news, and your father is having some better days.

My prayers for you and your family,
Sophie

Re: Tomorrow Dr. Appt.

Barbara Ann....so sorry to hear about your Dad's condition.  I so much agree with Jeff as it is difficult for us to hear what our loved one's are saying when our intentions are to the best and we so much want to make everything o.k.  Listening is one of the greatest gift we can give to those who need to be heard.  Also, keeping Dad comfortable is in my mind the most important thing you can do for him.  Vomiting can be relelentless while the cancer is progressing.  If you are able to do so it might help to read through some of the threads discussing this problem.  Under "search" enter "vomiting" and you will be able to read up on others discussing this situation. 
Sending tons of hugs your way.

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Re: Tomorrow Dr. Appt.

Barbara Ann, so sorry for you and your family. My sister is also deteriorating and nausea and vomitting are her constant symptoms. Has your dad been on regular anti nausea drugs like zoufran? For my sister, the only relief she has had was with cesamet (marijuana based drug) and even that was only partial. The nausea and vomitting is very had to deal with and although it doesn't seem like classical pain, it is very debilitating. Best of luck to you all, Belle

Re: Tomorrow Dr. Appt.

Thanks so much to all of you. Yes, we decided that listening to what Dad wants is what we are going to do. He wants to continue fighting, but in HIS way, not anyone else's! So all treatment is stopped for now, as Xeloda was not effective against new tumors. He's now taking Reglan to help him eat more/control nausea. Kidney function was not good, so he needs to push fluids also. He absolutely refuses to discuss hospice care (even though the doctor thinks it's time to call them), so we go with his wishes and wait until he is ready. Hoping all of this will calm his symptoms, give him some physical peace, and strength for what comes next.
You are all so wonderful and caring. Many many thanks!
Barbara Ann