Topic: What next?

In August of this year, after presenting symptoms of fatigue, shoulder pain, and loss of appetite (no jaundice however), my 81 year old father went to see his doctor. After being referred from his GP to a gastroenterologist, his liver panel showed elevated ALP levels and a subsequent CT scan showed he had a 7mm tumor on the left lobe of his liver. After consulting with a surgeon who specializes in biliary cancers, he felt he was a viable candidate for resection of the entire lobe.

The day of the surgery, we knew we were in trouble when, one hour after the operation began, a nurse called us into a private conference room so that the surgeon could speak with us. He informed us that he had discovered the primary tumor had fused itself to the stomach. In addition, there were two very small tumors on his right lobe. The pathology done during surgery indicated this to be colangiocarcinoma. (Intrahepatic.) Because of what he saw, he opted to abort the surgery.

Since that time, he has been extremely slow to recover from surgery. His overall physical health has declined precipitously, he has lost much of his mobility (which he is valiantly trying to regain despite weakness and pain), has no appetite (likely from the tumor pressed against his stomach), and is now experiencing serious bladder complications. (Due to age, as well as the toll surgery and the cancer has taken on his body.) My dad is willing to fight this and is one of the strongest willed people I have ever known, but has begun to feel the cards are stacked against him.

I understand that at this point, there is no cure for the cancer and that all treatment now is palliative. Understanding this, I have used the analogy that, as with chess, as long as you still have a move left you have not lost the game. So never surrender until checkmate.

The next stage is scheduled to be chemo. (Likely gemcitabine I believe.) The oncologist wants to start chemo as soon as he "recovers from surgery" but emphasized that it really needs to begin in the next couple of weeks. However, his one physician, who has known him for over a dozen years, quietly confided that, based on what he is witnessing with my dad's physical decline, the chemo might do him in since "his reserves are gone".

My dad turns to me for guidance with a lot of this. While I am not a physician, like many of you, I have sadly made learning as much as I can about CC as quickly as I can a key part of my life's work. So at least I have been able to question doctors and keep my dad somewhat informed of what is going on.

My question to those who have been through this is, when and how do we know when it's time to say "enough"? I know to my dad, quality far outweighs quantity with whatever time he has left. I do not want to see my dad's health compromised further by undergoing chemo if it won't improve his well-being, even short term. On the other side, if it will help alleviate any of his symptoms, I believe he's be willing to give it a shot.

So I am not asking for answers per se, just insight from those who have been down this path already.

Re: What next?

Dearest Bkat, welcome to our wonderful family where you will find the most courageous and caring pepople from all over the world. I am so very sorry about your Dad. My husband fought 5 years and then at the age of 78 we got the 'final' diagnosis of about 6 months. Even though our Board here does not listen to time frames somehow you just know. The doctor advised he could try Palliative chemo so we asked, "how much time will it buy him"? The ONC said maybe a month or 2. That was that as Teddy chose quality time, we never looked back and just knew we made the right  decision. While your father is alert and knows what is happening, it really should be his decision. To chemo or not to chemo is always such a huge decision but personally at 81 and just undergoing a major surgery, I have to say my vote is no. I know others will chime in soon and I wish we could all take this decision away from you. I am not a doctor but I have not heard many on our site who were made more  comfortable by having palliative chemo. IF you decide no more chemo you may want to talk to the ONC about when to call in Palliative care for your dad. The reason is they become the go between from Dad to ONC. They are terriffic and will see to it that he is kept comfortable. Comfort is the bottom line. Take care, be strong and please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What next?

Hello Bkat and welcome to our site. Your Dad has chosen the right person to advocate on his behalf.  Your expressed thoughts of concern for his well being shines through loud and clear.
Gemcitabine (Trade Name: Gemzar) generally is tolerated well however, we have had a few exceptions on this site.
The topic of treating the elderly with chemotherapy has been presented at numerous medical conferences I have attended.  The overall consensus is for the overall health of the patient to be the deciding factor rather, then the chronological age of the patient.
My husband

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

4 (edited by PCL1029 Tue, 18 Oct 2011 20:07:13)

Re: What next?

Hi,
I will listen to  the advice that "the one physician who have known your dad for over a dozen years" gives to your father. His Key word is "his reserve may be gone."
Even if your father will like to try the chemo,he needs to wait for at least a  couple months after surgery to let the surgical wound to heal  and regain his strength.
I am 61 ,have intrahepatic CC  for 30 months and  was on Gemzar for 14 months and was no fun at all even I did not have any serious side effects from the chemo.
I STRONGLY agree with Lainy about choosing  quality over quantity for her husband and they got five years of quality time.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What next?

First, let me say how sorry I am that your dad has this cancer.  My dad lost his battle almost a year ago at the age of 75.  We were called in physicians' room and were told the surgery had been aborted too. The cancer had spread to my dad's pancreas.  I'll never forget having to tell my dad the news when he awoke.  His recovery was very slow from the operation.   He walked with a rolling scooter chair and was able to rebuild some strength.  After a month or so he had a port put in for chemo.  He tried two treatments of gemzar and it was brutal on him.  The oncologist told him she thought it was time for hospice.  He lived a few more months and some days were better for him than
others.   We poured on the love and took exceptional care of him.  It was so sad for us all.  I know what you are going through.  It is a very tough decision and
you are a good son for stepping up and helping your dad.  My thoughts and prayers are with you all.

Re: What next?

Hi,

I am sorry to hear of your dad's condition.  My husband was on gemzar/cisplatin/avastin and also has intrahepatic CC.  He had a resection a little over 3 years ago.  The chemo makes him very tired and he is only 58 and otherwise in good health.  If your dad is slow at recovering from his aborted surgery, and his primary physician sees his decline in health, the chemo may be too much for him.  I agree with Lainy that quality of life far outweighs quantity.  I lost my dad almost a year ago to a very aggressive melanoma.  He was in his 80's and chose not to do chemo as he had witnessed what my oldest sister went through 12 years ago when she died from metastatic breast cancer.  My dad lived for 3 years without treatment; he was very strong-willed and my mom had altzheimers, so I think he wanted to stick around to make sure she was taken care of.  Mom died last June and dad passed away in November.  I know this is a hard choice for you to make so if your dad is up to discussing the options, I feel the choice should be his.  My prayers are with you and your family,  PeggyP

Re: What next?

Thank you all for offering both perspective and comfort with this. Having strangers who have been through or are going through this come forth to share their stories does help in making an informed choice. He has an appointment soon to meet with the oncologist who would be administering the chemo so this will give me the opportunity to present some of the questions that will help him decide what is best for his life.

Like Peggyp's father, my dad's raison d'etre has been to make sure my mom is taken care of, as she has health issues of her own. She's not doing too well with any of this and I believe one of his main goals is to get them moved into a retirement community quickly so there will be support and care for her when the time comes that he is no longer there. We are trying to keep the ball moving forward on this while simultaneously addressing the medical issues.

Pam, I empathize with what you went through. When my father first awoke from surgery he looked me in the eye and asked what the prognosis was. It was a tough moment.

PCL1029, can you elaborate on what you experienced with the chemo? I know the oncologist told my dad drugs take care of the nausea and the worst will be is that he will be "a little tired." I don't blame the doctor for trying to be encouraging and underplaying the chemo to some extent, but hearing from those who have been through the chemo, even if they did not have "side effects" is helpful. Like Marions addresses, the fact my dad is 81 years old comes into play but that it's the patient's overall health and not his numeric age that is the real determining factor. So much now depends on to what degree his health has been compromised.

And Lainy, thank you for you insight. Directly asking the oncologist just how much time chemo will buy might help determine when it is time to focus on steps beyond chemo.

I will update everyone after his next oncologist appointment.

Thank you all again.

Re: What next?

Bkat,
Sorry about ur Dad as I went thru the same thing with my Dad in July. His surgeon also came to us after just an hour too but Dad knew when he found out what time it was when he woke up.
My Dad just turned 78 in August and he bounced back after surgery we couldnt believe it. He has undergone 5 weeks of both chemo and radiation- 5 days a week and now they want to start him on the Gemzar.
I too would like to hear from the people that have gone thru this treatment and how they felt. I keep hearing horror stories about people having to have transfusions as their blood counts go dangerously low and I dont want Dad in and out of the hospital for the limited time we have with him.

9 (edited by PCL1029 Wed, 19 Oct 2011 17:32:03)

Re: What next?

Hi,
Yes, the oncologist will give zofran and/or dexamethasone IVPB as pre-med for helping the nausea/vomiting. But I did have headache because of the high dose of Zofran; they cut the dose down but  I just did not feel right  in my head anyway, I felt my head was swollen;but that is how the Zofran works to control the nausea/vomiting .I did vomit after I drove home from the hospital of the later part of my 14 months Gemzar treatment. I did not have the vomiting  problem when I started the Gemzar ;but I did have the headache (minor) and the swollen head feeling  starting at the second or third dose.
And I did feel a little tired and that is why I always go to bed right away after my chemo treatment.(that is ,I took Benadryl 50mg and Ibuprofen 600mg right after I went home after Gemzar;if I vomited it out I will take another duplicated dose so I could go to sleep ,usually within 30-60min, and woke up 3-4hr after;then I felt much better; the whole thing last for a day or two and I would be back to normal again.)
But please remember  I was 59 years old  at that time and had diagnosis of  intrahepatic CC stage II and started the Gemzar as the only treatment just 2 months  after liver resection.
Please read the side effects forum about" suggestions for medication for nausea/vomiting."to gain insights about the medications.
Again, you should also know that Gemzar chemo treatment is not for CURE;
It may work or it may not.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What next?

Met with the oncologist today and she told my dad the pros & cons with chemo. She was very straight-forward and informative, which was good. So he is proceeding with gemcitabine to see how he handles it. If he does OK then she'll add cisplatin, I believe. He wants to fight this as long as he is able, so we have a plan.

Re: What next?

Bkat, a plan is great news. Somehow when a plan is in place the fright turns to fight and everyone gets a little stronger. Hoping for your Dad to have smooth sailing with the chemo along with a good outcome!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What next?

Bkat....Loosing control is one of the major issues we struggle with when diagnosed with a disease.  Your Dad is trying to regain that control by wanting to fight this cancer with chemotherapy. Although, we don't always agree with the choices made the true gift lays in the support we offer to our loved ones. 
I am wishing for the most positive response to the treatment.
All my best,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What next?

Thanks for the support. He seemed a lot stronger yesterday so I think he's making the right decision. My mom is having a tough time with his disease and what lies ahead for both of them, but my dad is determined to fight since it beats the other option. So his attitude is good. He says he's accepted what may be down the road but in the meantime he's going to try and keep this cancer at bay.

Re: What next?

Bkat....I am glad to hear that your Dad is feeling better. His attitude of wanting to fight the disease reminds me of our Kris when she noted:  that she will continue to fight because, she did not like the alternative.  Cancer unfortunately touches not only touches the patient; it touches everyone involved. I so much understand your Mom and her anxiety.  This is a difficult disease and she also needs some support.
Every so often we need to read this important message for caregivers:

Bill of Right Support for caregivers


I have the right to take care of myself.  This is not an act of selfishness.  It will give me the ability to take better care of my loved one.

I have the right to seek help from others even though my loved one may object.  I know the limits of my endurance and strength.

I have the right to maintain parts of my own life that do not include the person I care for just as he/she was healthy.  I know that I do everything that I reasonably can do for this person.  I have he right to do some things for myself.

I have the right to reject any attempt by my loved one to make me do things out of guilt or anger.  (It doesn

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What next?

Bkat,

How wonderful it is to have a strong dad. Let him know that we are all pulling for him. My prayers are with you and your family. Sounds like Mom needs lots of extra care and support as well.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: What next?

Thanks again to all. I think he's surprised to hear he has a cheering section in all of you!

Well, my dad has his first round of chemo (Gemzar) yesterday. Twenty-eight hours later, he hasn't felt any side effects, ate a normal dinner, and slept most of the night, so I guess that's a good start. His blood work is a bit off (elevated WBC, low RBC, slight anemia, and very low iron). Should I assume this to be normal with CC? I tried questioning the RN & lab tech on this and was given a vague answer about how this is just a baseline by which future tests will be compared and you really can't tell anything by it. Which isn't telling me a whole lot.

The one question my dad keeps asking is, if chemo works as it's supposed to, will he get some of his strength back? Aside from the obvious concerns with this disease, I think it's driving him nuts that he has very little stamina.

Re: What next?

Bkat....is your Dad receiving steroids also?  If so then he should have a bit more energy.  I would address with the physician the slight anemia and the low iron, all which could contribute to your Dad's lack of stamina. With neutropenia a white blood cell booster can be administered.  Again, this is something only the physician can determine.   Your Dad also is still recovering from surgery and needs to regain some strenghts.  We supplemented my husband's diet with Boost and other, high protein foods and Lainy speaks highly of Carnation Instant Breakfast.   Tell your Dad that we are rooting for him.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: What next?

BKAT, Glad to hear your Dad is doing so well with the chemo. I would say something to the ONC about the low iron. Teddy had radiation bot not chemo and hebecame very tired so the ONC put him on Vitamin B12 shots once a month. When he didn't feel like eating much I gave him a Carnation Breakfast Shake. It was recommended by Hospice. The Shake has enough of everything in it to replace a meal. Teddy loved the Vanilla and I would blend in a banana. Teddy was a very vital man and I think he used to get a little frustrated as well by the lack of strength. One Doc did suggest a minor walking regime. Like first just walk down the driveway and increase by the yard as he is able. GO DAD GO! One of the hardest things is to mentally feel like you CAN but physically you can't.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What next?

Hi Bkat,

Thanks for letting us know how your dad got on with his first round of chemo and it sounds like it went well and that he is doing well with it also. That is great that he is feeling no side effects right now and that he is eating, a good start as you say. My dad never had chemo or surgery, but he did take some of the supplements that Marion and Lainy talk of. He used to take an Ensure drink as well as eating to help keep his weight up, and his cancer nurse also recommended that he take some excercise when he could. Nothing too strenuous, but just going for a walk. Plus going for a walk got him out of the house for some fresh air which did him a lot of good.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: What next?

It's six days later and a question has come up. How does one know if symptoms are side-effects of the chemo or if they are a result of the CC?

Basically, he didn't feel any different in the day or two following the chemo. Now, in the last 36 hours, he feels measurably worse. He can barely walk due to weakness, says he hurts, general malaise, doesn't feel like eating, sleeps most of the time, etc. I know mentally this has to take a toll, but seeing him today he looked unhealthy.

Round two of chemo is scheduled for tomorrow afternoon. I think he is wondering whether it's worth the effort. (He told my sister he feels he's declining no matter how hard he tries not to.) Thanks to your suggestions, I plan on asking the doctor about vitamin D or other options to see if that might help. He's not on steroids, so that is another question I will pose.

Sidebar question. The doctors have him on Norco for the pain. Could this be contributing to his lack of energy? I would never want to deny him anything that makes him more comfortable. But I'm cautious about doctors making assumptions and possibly keeping him drugged simply because he's older and his cancer is non-resectible.

Thanks again. You are a wonderful group.

Re: What next?

Bkat...well...it's hard to say why he is feeling that way. Guessing, I would say the Chemo, BUT, you should contact the doctor right away and tell him what is going on, he will know best. I believe a Scan is the only way to really know anything. Vitamin B 12 is the one for tiredness. His signs may all be from the chemo. He also could be tired from the pain meds. There are other pain meds he can try. With CC or any cancer in fact you NEVER want to withdraw the pain meds if the patient is in pain as the pain will be harder to get under control. This is a tough call because of age and I would have the ONC make the decision about continuing and perhaps trying a different pain med. Please let us know.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: What next?

Lainy,
Will do. Seems there are a lot of questions for the oncologist tomorrow.
Thanks.

Re: What next?

Hi,
Besides telling the oncologist tomorrow about your dad's symptoms;The  lab work they will perform on your dad (CBC,BMP) will also tell the doctors about the current condition of your dad.
Most likely ,the lack of appetite may be related to the tumor fused with stomachas you mentioned before.
The tiredness is more related to the pain pill (NORCO) than the Gemzar . In general, patient in good health will feel better in the later part of the chemo  treatment time frame(ie: feeling worse for the first couple days and much better toward the 6th or 7th day in the one week cycle.I am talking about Gemzar only; not with the molecularly targeted agents like Avastin or Tacevar the like.)
I do think your dad's reserve,as mentioned by his personal physician who knew your dad for a long  time is gone and tomorrow's lab will tell you a better picture whether the chemo is affecting his current state of health.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What next?

Hi Bkat,

Sorry to hear your dad is not feeling well.  My husband always seems to feel bad about the 3rd day after his treatment.  Also, if his counts drop too low, that also contributes to his weakness and fatigue.  Hopefully, you will get some answers tomorrow.  Tell your dad that well wishes are coming his way and to keep on fighting and try to stay positive.  Will keep him in my prayers,  PeggyP

Re: What next?

Hi Bkat,

Sorry to hear that your dad is not feeling so good right now, how is he feeling today? Not really much I can add to what the others have said you and I hope that you will get some answers tomorrow from your dads oncologist. Please remember that we are all here for you and please let us know what your dads onc says.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.