Re: My Husband and Cholangiocarcinoma - Part 2

Tom has another successful external biliary drain tube exchange.  I keep insisting that we should be getting frequent flier miles at that hospital.  It's pretty scary that when we walk in everyone greets us by name.  If I don't go with Tom (someone else took him today) they all tell Tom to say hello to me!

His Interventional Radiologist can now do his tube exchanges in less than 10 minutes.  He was joking today and said "Let's see if we can get this down to less than 4 minutes"!  He does spend time before Tom gets into the operating room and he modifies the tube (adding extra drain holes)

We'll be back there in 4 weeks for another one.  Since we have now gotten onto the '4' week exchange program Tom has not had ANY infections in his liver.  That is great so for now we'll keep getting those exchanges every 4 weeks.

Oh yea, Tom has GAINED 7 pounds!!!!

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Another good news day, Margret.  That makes me so happy. I think anyone who is sick would be very lucky indeed to have you as their care taker!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret....Tom is encountering the speediest tube exchange yet.  He so much deserves a competent and efficient operator.  And, he gained some of his weight back....that is fantastic.
May it continue.
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: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

That is great that Tom's tube exchange went smoothly and also that he put on 7 pounds, excellent news all round!

Best wishes to you and Tom,

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: My Husband and Cholangiocarcinoma - Part 2

Yay, - Go Tom!

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: My Husband and Cholangiocarcinoma - Part 2

You are a very strong couple!  I had never even heard of this cancer.  Pretty nieve.  My husband just died from it 2 weeks ago.  Went to the hospital March 14th with a stomach ache and shortness of breath.  Only to discover this nasty disease.  He was bleeding into his stomach.  There was nothing left to do but make him comfortable and be there for him. He passed on the 20th.  I am baffled as to how he showed no symptoms or if he did the incredible amount of strength he had to not show it.  Best of wishes and LOTAS of prayers for you and your huband.  So glad I found this site!

In memory of Abe Gurule! Wonderful husband and father!

Re: My Husband and Cholangiocarcinoma - Part 2

Kkliewer
I am so sorry to hear that your husband has passed from this terrible cancer.  The real problem with CC is that the symptoms (jaundice, itching etc) appear too late for the medical staff to put in place an effective treatment plan.

Look after yourself at this difficult time.

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret
I'm delighted that things are going soooo well for Tom.

Nice one,
.
Gerry

Re: My Husband and Cholangiocarcinoma - Part 2

We are continuing to KICK THAT cancer!  Tom has his biliary tube exchange today and his Interventional Radiologist reports that the tube is only draining part of the liver and he feels that a lot of the bile is getting into Tom's intestines because 1)  His color is so good - barely any yellow anymore!  (This is awesome) 2) The doctor can 'see' that the tumor has shrunk (And this is even better)

He will attempt to get a stent in next time he has a tube exchange.  He did not want to attempt it today because he feels its a bit too soon and does not want to damage anything (bile duct) in the liver.  He thinks that in another month he may be successful - and if the tumor continues to shrink he may have ever a more clear path to follow....YEAH!  So lets keep on with all those prayers and meanwhile....

KEEP KICKIN' THAT cancer.

Hugs to everyone!

Margaret and Tom

Re: My Husband and Cholangiocarcinoma - Part 2

Tom is our Miracle Poster Man! That is such good news! Hope its warming up for you guys. Keep the Miracles coming!

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: My Husband and Cholangiocarcinoma - Part 2

First I want to THANK all of you who added Tom to your thoughts and prayers! He just had an appointment with his oncologist who is so impressed with the outcome of his cancer.

His numbers continue to decrease from the very high levels that he was as back in December '09. His bilirubin is 3.8 (3 and under is normal).  His Alk Phosphate is 859, still high but much better than 1958 it was at a while back!

His oncologist's comment was "Who would have thought that it would turn out so well back when we started seeing you as a patient!"

He is not scheduled for a scan until July. The tumor continues to SHRINK and we're hoping that the Interventional Radiologist will be able to get a stent internally so Tom can lose the drain bag! He is not yellow at all except for a few traces of yellow in his eyes.

Both Tom and I want to thank each of you for your support, thoughts and prayers during the past and I will keep you all posted as things develop, good or bad!
Hugs,
Margaret and Tom
GO WITH GOD AND KEEP KICKIN' THAT cancer

Re: My Husband and Cholangiocarcinoma - Part 2

WOW! YIPEE !  Margaret and Tom the dynamic duo! The Miracle Team! The Mount Everest Climbers!  The winning combination. Keep it going! Love, love this kind of news!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret and Tom....I agree with Lainy.  You are the Miracle Team.  The numerous postings are a testament to the incredible Cholangiocrcinoma roller coaster ride you have endured.  And, the outcome is absolutely spectacular.  Enjoy, enjoy.
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: My Husband and Cholangiocarcinoma - Part 2

Mgt
Thanx for sharing your story. This is a pretty scarey thing and hearing how everyone is dealing with there troubles sur ehelps provide hope. My sister is being seen by a onc at st. joe's here in Ann Arbor ,Mi. He is an ok doc but i sometimes wonder about his attitude, seems to be lacking in hope. We did get a second opnion and it seems he is doing all of the things everyone else is doing so I guess he is ok. She will have no part of another doc. I check and recheck everything he says and I ask more questions than - wow. I am  a med. tech so I do understand a bit and what I don't I ask, ask ask!
Good Luck to Tom and you!!!! Prayers and blessings coming your way!
Jackie

Re: My Husband and Cholangiocarcinoma - Part 2

Had a couple of bad days, Tom's Onc called on thursday and reported that his CA19-9 (Tumor Markers) are elevated up to 169.  They had been 69.  Then of course Tom was in a funk, severely depressed and said that he knows he is going to die, every little ache/pain was the "Cancer coming out, etc".  After 2 days of listening to him....out came the wifely talking machine again!!!!

As a team we have decided to NOT FOCUS on the numbers!  But rather focus on what is important to him and us!  Spending time with each other, doing the things we like to do, camping, spending time with grandchildren, more time with Lil Tommy (2 yr old).  Although Tom said that he would not do any more chemo...after the 'talk' he has now decided to make the decision after he has his CTScan (In June) and listen to what the Onc recommends.  I told him, he has two choices A) Do nothing and live out the remainder of his life, however long that may be OR  B) Put on his boxing gloves and do either a few rounds of chemo or radiation (doc's choice) and prepare to be here for another 20 months.  His response "To heck with 20 months, I WANT 20 YEARS!"  (That's my man!) 

I also gently reminded him that in Dec. '09 when he was given 6 months we decided to fight and that has gotten us an extra 20 months and that he has had some bad days but for the most part he has had many more GOOD days!

So apparently our roller coaster ride has begun again and we've got our boxin gloves on and we're going to starting KICKIN' THAT cancer once again!

Go with God and KEEP KICKIN' THAT cancer!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

And the Miracle Team hits the road again! You both ROCK! I am crossing everything for a Good CT Scan!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret....I agree with you not focusing on numbers.  At this point, this is all they are....numbers.  Enjoy your camping and your grandchilden. Have a great time.
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: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret,

Your wifely talk does it again! Glad that the boxing gloves are on again and that Tom is coming out fighting again! Fingers crossed for a great scan result.

Best wishes to you and Tom,

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.

169 (edited by Nancy246 Thu, 26 May 2011 16:20:24)

Re: My Husband and Cholangiocarcinoma - Part 2

Hi Margaret, You and Tom are an inspiration. Doug and I are right behind you, fighting all the way! Let's kick some cancer butt!!
Hugs. Nancy

Loving my husband from afar.

Re: My Husband and Cholangiocarcinoma - Part 2

Tom had his tube exchange today but the doc could not get the stent in. He said there were 2 openings that looked positive, but both ended in blind alleys or dead ends...oh well, he'll just have to continue with the external bile drain and I'll just have to keep flushing it every day...and life goes on!

I guess it could be worse...there are a lot of things that I would NOT like to do, the flushing and the bandage changes are a lot easier than other things on a scale of 1 to 10 !


For now we'll just have to continue to make liars out of those doc's that said he'd be dead in 6 months.

Go with God and KEEP KICKIN' THAT cancer.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, I can relate. I used to change and clean Teddy's extrenal drain. If anyone had told me even 5 years earlier I could do that, I would have said they were crazy. Amazing what we get used to and become pro's at when we have to. Keep up your good work, girl! Guess one way to look at it is Tom does not have to undergo anymore internal exchanges.

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: My Husband and Cholangiocarcinoma - Part 2

Well folks, the roller coaster has started again.  First Tom broke a verterbrate in his spine and after 2 weeks the pain was so intense that they increased his morphine, and then did a vertboplasty where they inject two needles into the verterbrate and 'glue or cement' the verterbrate back together.  The pain is then supposed to get better.  In his case it did not. 

Tuesday of this week Tom was well enough to drive himself to the doctor's office and was given some type of lidocane patch at a cost of $457.00 for a 30 day supply.  Wednesday evening I noticed that something was 'off' with his balance and his walking.  He's been using a cane for the past 4 - 6 weeks, but was having difficulty Wed. evening.  This morning at 4am he got up to go to the bathroom but his legs gave out on him and I had to help him the rest of the way.  It took 10 min. to walk about 30 feet from the bathroom to the 4 season room. 

Then he started talking goofy.  Statements that made no sense, was really confused, uncoordinated, unable to walk or stand unassisted.  I called his doctor and daughter.  My boss insisted that I log off the phones and go be with him (I work at home).  I'd left him in the recliner sleeping at 7:25 and by 7:50 when I got back to him, he was sitting on the floor in front of his recliner.  He had no idea why he was on the floor or how he got there. 

I called the doctor's office back and 10 min later they called back and told me to bring him in.  Got the wheelchair out and between his daughter and I we got him into the wheelchair, out to the car and then to the doc office (which is attached to the hospital)

When his doc saw him sitting in a wheelchair, being so unresponsive, he was as concerned as I was and started the process to get him admitted.  It could be a number of things, Mets to the brain, ammonia levels too high, and infection in the liver, blood or elsewhere in the body.  They took a chest x-ray, got a number of tubes of blood, specimen of the bile from his external bile drain bag and a urine sample and are running cultures on all.  They started him on a broad spectrum of antibotics, cipro and flagyl which will help start curbing an infection (if that is what it is)

Because Tom smokes, I INSISTED that they put a nicotine patch on him.  At 6pm this evening I left the hospital and came home to get some rest.  I will most likely not be going to work tomorrow as I certainly want to be there when his doc does his rounds.  Just prior to leaving the room, doc turns around and says "Just for clarification, you do want a DNR, correct?"  The hardest thing I have ever had to do was say "Yes".  But if anything major were to happen and Tom's quality of life were to be worse than what it is today, he does not want to live like that and he knows that I would most likely not be able to care for him if he needed round the clock care.  For any of you out there who have had to answer that question, you know exactly how hard it is to say yes, but then again, it's what I would want for myself as well.  I'm not certain how much one man can take.  He has lost the 20 pounds he had gained.

So if you can find it in your hearts to offer up a prayer or two for my beloved Tom I would greatly appreciate it.

Hugs to everyone.

Go with God and KEEP KICKIN' THAT cancer.

Margaret & Tom

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, I just answered your other post and did not see this one first. I am so very sorry about Tom & for you. I had a DNR on Teddy from the beginning. For me the hard part was that last drive to the Hospice Facility. He decided to go but said, "you drive me I don't want to go by transport". OMG! I felt I was taking him to his doom". Funny, guess I really did. So, I understand how you feel. Sometimes I do wonder where we get our strength even though I always say be strong. Wish I could be with you tomorrow! Like I just said, be strong!

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: My Husband and Cholangiocarcinoma - Part 2

Margaret,
              thinking of you                         Janet

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret,

Sending love and prayers to you and Tom.  He's a fighter, you both are.  That question about DNR was one of the hardest questions I  had to answer for my Dad so my heart feels for you.

Hugs

Andrea x

Devoted Daughter to the most wonderful Dad a girl could ask for.  Sadly lost his battle on 19.02.11, peacefully in the arms of Mom and I.  As requested by Dad "we will keep on smiling".