Topic: Inquisitive son.....

Greetings!

My name is Rob and have just joined the discussion board in hopes of finding relivant conversation in regards to my fathers situation.

In September of 2008, my father was diagnosed with "Stage IV" Intrahepatic Cholangiocarcinoma; to which a 9 x22 centimeter cancerous mass was discovered in his liver and 3 smaller masses in other regions in his 9th rib, spleen, and sternum.

We, as a family, are very pleased with the quality of care he is receiving at the James Wilmont Cancer Center in Rochester, New York and have been in a "quality of life" treatment program prescribed by Supria Gupta Mohile for approximately 3 months now.

I must admit that I am reminded daily of "personally" cancer affects the lives of the patients and their families.....the hope is through each of our situations that some resemblence of a "quality of life" can be achieved and strongly recommend Dr. Supria Mohile for just such in the care of the elderly.

There hasn't been a day gone by since our first introduction to her and her staff that the proper attention has been placed in the welfare and care of our father.  A 79-year old gentleman who is simply "dealing" with the 'days' remaining of a good life.....they, at Wilmont, are simply making his last 'days' the best they can be.

He is about to begin his fifth series of treatment of Gemcitibine (Gemzar), to which he is fortunately not faced with any of the potential side-effects we were warned about and urged to keep them abreast of.  However, he is beginning to show signs of the "toll" each series is bringing upon him as it now takes him a good 4 days to recover and feel like getting out of bed. 

It's been a gradual build-up through each series of treatment and lately, we have addressed 'blood-clotting' issues.

On the positive side, again, he has not had any major side-effects.....yet I am beginning to wonder about his remaining days in regards to the "quality of life."

We meet with the doctors again on Monday to review his recent CAT-scan.....the last of such reveiled that the 9 x22 centimeter mass in the liver had been reduced to 8 x 16 centimeters, but all other sites were still prevelant and he will remain in "Stage-4".

My question:  "If the prognosis isn't going to change that he had 4-6 months beginning in October of 2008 and we are concerned about his quality of life.....the treatments have 'maintained' him through the holidays, but are gradually taking away any enjoyability between treatments; then do we reduce the Chemo-treatment to give him a few days a week of anything but being in bed"???

Is that even possible??!!!


Of course I will ask the doctors on Monday, but maybe one or some of you have been through this in a similar or comparable situation.

I'm open to suggestion!


Thank you for any response or interest and look forward to chatting with any of you soon.....

Have "faith".....

Re: Inquisitive son.....

Hi Rob and welcome to the best little club in the world that no one wishes to join. The question you ask is the one we all ask. Unfortunately there is no set answer. Its a patient and family decision. We were told that chemo will not help my husband's CC but he did have radiation and cyber knife and it worked. We have discussed the chemo versus quality (should any doctor want to try it) and we have opted never to do chemo because it will not help his type of CC, but that is our decision, he is 76. For us, we prefer quality time. Oddly a few of our doctors related the same thing to us after we decided to do it this way. That they would accept quality instead. Again its a private decision. Maybe that question would create an interesting thread here. Those who have gone through chemo versus those who opted not to. It would be interesting to hear from patients and caretakers. 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: Inquisitive son.....

Lainy.....thank you for replying and appreciate what you and your family have been through.

There never seems to be a "great" decision to make, yet in what you've briefly described in regards to your husbands situation and type of CC.....you chose what you felt was best.

I think my father has a different type (of sorts) of CC because the "Gemzar" prescribed for him was specific in "maintenance" in giving him a "quality of life" vs. no chemo at all, being that radiation and surgery were not an option in his "Stage-4" evaluations.

You are right.....it's a valuable 'topic' and hope one of you has or is facing a similiar situation to which the chemo is beginning to take "good" days away and if a 'reduction' of Gemzar is possible.

Thank you again for your response and god bless.

Have "faith".....

4 (edited by Darla Fri, 16 Jan 2009 18:33:27)

Re: Inquisitive son.....

Rob,

I also would like to welcome you to this site & to reassure you that you have found the right place to be when dealing with CC. All the people here are so helpful & supportive. I don't have any answers for you as the situation we dealt with was so unlike your Dad's, however, I am sure you will be getting more replies shortly. My personal opnion is that quality of life is more important than quantity, but as Lainy said, it is a personal decision that has to be made by the patient & family after getting all the infomation you possibly can. I wish all of you the best. Keep in touch.  We are all here for you.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Inquisitive son.....

Thank you Darla!

Have "faith".....

Re: Inquisitive son.....

Ron...I would like to follow everyone else in welcoming you to the site.  You are facing the question so many of us have had to deal with.  You are a great advocate for your Dad by gathering as much information as possible.  Has your Dad given you any indication as to how he would like move forward?
Best of all wishes coming your way,
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: Inquisitive son.....

Rob

Welcome.  I can agree with everything that has been written, particularly Marion's point about what your father's wishes are.  I can speak from the viewpoint of a patient, having a very similar condition to your father and also receiving gemcitabine.  I find that the side effects are a feeling of nausea that lasts for a couple of days.  It is quite manageable as long as I am near the toilet.  I  don't feel tired and once the nausea passes  I basically feel like I was a year or so ago.  As the chemo day gets closer I start to dread it but that is a mental thing.  On odd occasions when I am feeling really bad, I do wonder if this is worth it.  Then it would be easy to decide to stop the treatment.  But once I am back to normal then that decision would be very difficult to make.  Life is precious and given the choice of ending it today or extending it until tomorrow it takes a big man to say "pull the plug now".  In my opinion, the only way someone else can make this decision for me will be if I am comatose.

Going back to your original question..............as I understand it, there is no reason why your father should not be able to take a break from the chemo.  I assume he already has a week off after so many treatments.  If so, does his general health improve during that week?  I know I look forward to my off week as if I am going on holiday.  Another thing to look into is can the size of the dosage be reduced?

All the best.

Ron

Re: Inquisitive son.....

Rob Mullen... I agree with Marion and Ron.  Evaluate which direction your Dad would like to take.  There is no rason why he can't take a break or reduce dosage like Ron stated.  It choice after choice.  Gemcitibine on me worked initially then stopped reducing.  I've tried many other regimens with some temporary stabilization.  But during this whole time the little ole microscopic cancer cells were off and hunting for new breeding grounds.  Although I entered at hope hospice, I continue to take Tarceva with little to no side effects.  I have mets to liver, sternum, ribs, soft tissue adjacent my esohogus and another pressing on the spine, also completely throughout both lungs.  I personally feel I still doing well with proper pain management.  It is continually said these drugs work differently on everyone and that is true from my own trial and error and comparison with others on the site.  Next week I get Scan and see my oncologist.  It will be one of those stop everything or if it is helping to slow or stablize carry on taking this tarceva for as long as allowed.  Like I said I'm on hospice at home and taking advantage of oxygen therapy with the Tarceva , nothing to loose plenty to gain. Your Dad has 25 years over me.  If your Dad has other health problems that comprimise his immune system It's going to be a tough call.  When it mets to the ribs it can be quite painful if not properly managed.  Rob, see what Dad would like to do, take a break, cut back ,try something else or say Hey quality of life enough is enough.  I'm so sorry your Dad had to be inflicted with this relentless disease,especialy at his age when he should be enjoying his pension years.  I wish you the best and I guest I'm a person who believes in hope and last minute reprieves. 
God Bless,
Jeff G.

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

Re: Inquisitive son.....

Rob,

Welcome, the only advice I have is that there is a treatment, photodynamic therapy (PDT),  that is considered palliative and has minimal side effects compared to chemo. I have no idea what considerations there are for receiving PDT and, while it is standard treatment in Europe, it isn't here in the U.S. You can use the search function on this board to find out more, here is one post that talks about it:

http://www.cholangiocarcinoma.org/punbb … hp?id=1658

Patty

Re: Inquisitive son.....

Rob,
The question you ask is one we asked ourselves everyday while my dad was receiving treatment.  He made all the decisions and we supported him.  It was too hard for us to give up...always holding on for hope. 

Now that dad has passed, I would say that I am satisfied with the decisions we made.  I believe we had him longer with us because of all the treatment.  Remember you can control when and how much he gets.  That was something we had to grasp.  You don't always have to follow the Dr's protocol exactly.  You have the final call.

My heart goes out to you and your family.  It's wonderful that you have caring and good healthcare.

Re: Inquisitive son.....

To all who have responded:

Thank you all for writing and sincerely appreciate your responses.....each have brought a bit of perspective and hope! 

It's what I was looking for and pray that each of you, in your own unique circumstances, are able to cope and obtain some form of "quality of life"!

I'm not always online and will occasionally follow-up on responses to this thread but if you wish to contact me directly.....please do so at the attached email address.

Again.....thank you all for your kind words and interest in our situation!

God Bless

Have "faith".....

Re: Inquisitive son.....

Just to note after reading the discussion(s) regarding PDT.....I happened to notice one responder quoting that their family member was receiving a combination of Gemcitabine and the product "Tarceva".

As I am sure a physician would be quick to inform those that inquire.....it wasn't long before I learned that the drug Tarceva is particularly prescribed to target "lung" and "pancreatic" cancer, with specific side effect notations from the drug manufacturer in regards to effects directly upon the liver.

Certainly appeared to be a "Red-Flag" in relation to CC.....

I intend to discuss all the alternatives available to my father today, with our physician and her assistants.  So for those of you interested in the results of that discussion, I will post in 'reply' again later tonight or tomorrow.

The PDT alternative has my curiousity peaked and btw.....I did a bit of "brushing-up" on knowing how doctors prefer to be in discussion from a book titled "How Doctors Think", by Jerome Goopman, MD.

Helps to not offend them, especially when we have been extremely satisfied with The Wilmont Center, as a whole.....through both my brothers and fathers situations!

None the less.....I'm hoping for a more 'pallitive' approach, going forward.

Have "faith".....

Re: Inquisitive son.....

For those that wrote and are curious as to our fathers situation, going forward.....it's good news.

The CT showed that the cancer cells/ sites have not grown or spread further.....yet, the largest mass remains identical in size @ 8 x 16 cm.

This is good news because the Gemzar is working and obviously giving us more time with our father.

His blood work came back good on many levels and even the "clotting" issue appears to also be under control for the time being.


We're pleased but also realize what's coming.....even though this is probably the best we could hope for in "quality of life" and know his situation could be worse, we're thankful.

The "itching" was determined to be a reaction to the CT contrast and will decide whether to 'pre-medicate' him prior to the next CT.

Of course, this all hinges on how he tolerates the continued Gemzar treatments and this being his fifth series of "3 weeks on and 1 week off".

He tolerated the first treatment of the fifth series well the first day after; however, he's feeling it this morning and is stronger than before.  We're associating this to a "build-up", as it's been the course all along.....just will have to see how the rest of the week goes.

One option in suggestion is a greater dosage of Gemzar twice a month.....in essence, he is receiving a 175ml/ 1568mg dosage now (80% strength) 3x's a month.  They feel he could tolerate a heavier dosage of 100% strength just two weeks a month giving him two weeks "off"!!! 

We like that idea and was what I was looking for, as noted above.....

In addition, when PDT was brought into the conversation, the doctors acknowledged this is available and ideally for my father in controlling the pain once the cancer regains momentum and resists the Gemzar.

We are told his CC is known to eventually resist the Gemzar.....so the PDT timing would be a form of "maintenance" w/o stints, at the end of the Gemzar treatments.


It all clears alot of "unknowns" for us and is gradually eliminating the "what-ifs".....at least we know he is receiving quality care and hope to enjoy our remaining days with him, without him suffering.


In regards to the "Tarceva".....our doctors did confirm that it can be effectively utilized with Gemzar (as I read it could be from the above responses), but essentially that patient would have to have sufficient liver function in order to be able to receive such a medication, because of the side effects.


One final note.....I just sincerely want to thank all of you who replied and pray for the best in your situations.  Please feel free to contact me individually, as some of you have.

God bless

Have "faith".....

Re: Inquisitive son.....

That is a "good news" day! We love to hear good news. Perhaps the best part is you are controlling the situation instead of it controlling you. A very difficult task with CC. Continued good news 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: Inquisitive son.....

Rob,

This is good news. I agree with Lainy. You are doing a good job by not letting the cancer control you. Keep up the good work. You are a great advocate for your Father. As you already know CC is so unpredictable, but you seem to be strong enough and knowledgable enough to deal with things as the come at you and when you need help & support, we are all here for you & your family.  Do keep us posted. My best wishes to you and yours.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

16 (edited by Rob Mullen Wed, 21 Jan 2009 07:18:33)

Re: Inquisitive son.....

Thank you.....I appeciate the support and sincereness of your responses, more than you might realize!

Have "faith".....

Re: Inquisitive son.....

Hi Rob,
So far I'm responding to the Gemzar, and was told the same thing in regards to PDT.  We'll try it if the tumor starts to grow again.

Re: Inquisitive son.....

Hi Rob,  Just to let you know I have been on tarceva for 3 months now and had CT Scan today.  Will discuss with doctor tomorrow to determine if any good is happing from using ;if not will probally discontinue or try adding something to it.  I have had no side effect to date other that slipting finger tips and slight rash to hands and face.
JeffG.

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

Re: Inquisitive son.....

Hi Rob,

Welcome to the site. I can't comment on any of the chemo drugs or treatments as my Dad has not undergone any of them. I am my Dad's carer, he was diagnosed last year with inoperable CC so no surgery was possible. The first course of treatment he was offered was PDT therapy which he underwent late last summer. He also had a metal stent inserted and still does have that.  If there is anything at all that I can help you with regarding this treatmemnt and how it went for my Dad then please just ask me.

I wish you all the very best.

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: Inquisitive son.....

Thanks again for the replies.....I read them all and it makes for good relevancy to understand others situations, in comparison to my fathers, even though I typically remind myself that each cancer patient has an individual set of parameters of their situation.

It's just good to know and hope that each of ours is the best it can be at any given time!

Have "faith".....