Topic: My Husband and Cholangiocarcinoma - Part 2

Bad news for my husband Tom.

He had his CT scan revealed on Tuesday and he went for the results on Wednesday. 

Liver:  The scan revealed a 2.2 cm low-density lesion at the posterior aspect. There is a 1.7 cm lesion just anterior to that.  There is a 1.8 cm lesion just lateral.  There is a 2.7 cm lesion at the anterior margin which extends beyond the margin of the liver.  All of these lesions have enhancing margins.  Inferiorly and posteriorly there is a 1.5 cm lesion which is less well-defined. It appears that 2 of these lesions were present on the prior exam but have increased in size.  Dilated ducts are seen anteriorly. 

Pelvis:  There is a 11 x 4.2 x 10.5 cm soft tissue mass in the pelvis anteriorly at the posterior aspect of teh right rectus muscle which appears continuous with muscle and extends in the peritoneal cavity and extends down anterior to the bladder consistent with metastasis.

Today Tom had aPort installed and he starts IV Chemotherapy tomorrow.   He will be on gemcitabine and cisplatin. His Chemotherapy will take about 3 1/2 hours on day 1 (tomorrow) then 8 days later another infusion, then 21 days with nothing, then repeat that cycle.

Another CT scan after that to see how the 'lesions' and the mass look.

Lesions...humm another nice way of saying 'cancerous tumor'

The good news is that Tom still wants to fight to try and KICK this cancer!  I have made him promise that when the KICKIN' gets to be too much and his quality of life starts to suffer he will say 'enough is enough' - after all we all know that the human body can only take so much.  His oncologist feels that he will be strong enough to handle the chemo...

Go with God and KEEP KICKIN' THAT cancer.

Margaret and Tom

Re: My Husband and Cholangiocarcinoma - Part 2

Oh...I also forgot that his CA19-9 tumor markers went from 92 in August up to 184 on 09/22/2010.  So there is something to be said for the CA19-9 tumor markers...

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret......I am wishing for an uneventful first day of infusion with a great CT reading to come.
A tidal wave of good wishes are 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: My Husband and Cholangiocarcinoma - Part 2

Dear Margaret and Tom.....what the heck?????????  You are both truly amazing in your fight and your attitude. Put those boxing gloves back on and we know the best man will knock it for a loop! Sending you good thoughts and prayers as always.

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

Thanks Marion and Lainy!  The boxing gloves are ON!  Tom is off to his first IV Chemo round.  I'm hoping he doesn't get too sick from the chemo.  His attitude is VERY POSITIVE which is a good thing!  He says that his work on this earth is not done yet so he wants to hang around for a while yet.

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

I knew that as I saw 1,000,000 work orders for him!

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

All:

Tom is having a hard time with this new chemo.  They 'deferred' him for two weeks now because his red blood count was too low.  Yesterday he had two blood tranfusions (which took almost 7 hours!) Can you believe that?

His Onc was a bit upset when he discussed 'quitting' with her.  She said "You're strong and we can help you.  I would tell you if I thought there was nothing else we could do".....

So on the UP side, he has decided to not quit chemo just yet but will continue at least until the next scan, and then will decide.

Love to all,
Go with God and KEEP KICKIN' THAT cancer.

Margaret and Tom

Re: My Husband and Cholangiocarcinoma - Part 2

Aw, Margaret, we are so sorry to hear about the Chemo effects. We are sending everything we have in the way of prayers and thoughts for Tom to get through this Chemo and to feel better and stronger. Our hearts are with you both.

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 must be feeling much better now.  On to a better week.
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
I'm sorry to hear about Tom with this new treatment. I can only assume it's the Cisplatin that is making him feel so ill. My husband is only being treated with Gem only not the Cisplatin and he is tolerating it very well. Maybe you could speak with you Oncologist about doing the same thing. We find out tomorrow if this treatment is working. If we go off he's tumour markers it's working well, but the CT scan results will tell us more. Good luck with it all Julie

Re: My Husband and Cholangiocarcinoma - Part 2

All:

Preparing for the worst and hoping for the best.  We are purchasing a head to head crypt tonight for Tom and I.  Found a fantastic deal that I just could not pass up!  Most crypts in the Green Bay area go for about $12,000+ for a double, but found one that a divorced couple are selling for the amazing low amount of $3,000, and they are willing to pay the transfer fee and 1/2 the cost of removing their names and polishing the marble face on the crypt. 

I should go buy a lottery ticket!

Here's to hoping that we will not have to use that Crypt at any time in the near future!

Hugs,

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

WOW!  Does it overlook Lambeau Field!!!!!!!!!!!!

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

Hi Margaret and Tom,

Attitude is half the battle and it seems as though both of you have that covered well!  I'm sorry the chemo has caused some setbacks - my mother was on the same chemo combo and it took her for a bit of a ride - blood and platelette transfusions became the norm.  I'm not aware of your husbands treatment history but I thought I'd suggest you speak to your Oncologist about taking a pill called Xeloda (ze-lo-da) in combination with Gem - it is less toxic on the liver.  Just a thought - may be easier on your husbands system.

My thoughts and prayers are constantly with you - it's a hard battle but it can be won.

Tina.

14 (edited by mlepp0416 Thu, 14 Oct 2010 04:22:36)

Re: My Husband and Cholangiocarcinoma - Part 2

Lainy: LOL, no, not Lambeau field, but it does 'overlook' the Bay and has an awesome view (not that we will be 'seeing' that view in the ever after though) and it's a bit higher up than what we wanted, but we'll never have to worry about it flooding! 

Tina:  Tom was originally on Xeloda so he cannot take that one again because cancer 'recognizes' the chemo after you have been on it and it would not be effective.  The battle with CC is a tough one and Tom has been fighting a good fight for almost 3 years.  You can read about his journey under "My husband and Cholangiocarcinoma"  This thread is 'part 2'...

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Tom goes in for 'another' tube exchange today.  Bile has been leaking from the 'hole' in his side therefore soaking the bandage, so we suspect that it's getting clogged.  This could account for his higher bili level as well.  At last blood work it was up to 22...

Hopefully a new tube will resolve that somewhat...wishing for the best but planning for the worse.  Since he has 5 new tumors in the liver, and since this is bile duct cancer, I suspect that one of the new tumors is the cause for the elevation of his bili level...(new tumor blocking a bile duct that was previously working)  DRAT!  Have I told you lately that I HATE THIS cancer???

One day at a time...I keep telling myself.  Well, gotta go and get him to the hospital now.

Go with GOD and you guys just KEEP KICKIN' THAT cancer!!

Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Good luck, Margaret.  We have learned what a difference a tube change can make.
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, hang in there, I know you are a good, strong Wisconsin Lady. I also used to say hope for the best and don't be surprised if it's bad but I have a feeling this is going to work out good for Tom. You just keep kick'in! And if kicking the Cancer is not working.....kick the doctor!!!  Just kidding. smile:)

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

Thanks Marion and Lainy!  The doc injected a contrast and can see no new blockages in the bile ducts...so that is good.  He again modified the drain tube with extra holes so he's hoping that will be successful in bringing down that bili level.

It's a good thing that we have Dr. Dempsey in our corner.  He is such a trooper and makes sure that Tom gets awesome care during these tube exchanges.  He's the only one that is 'allowed' to change Tom's tube.  I think that in the past year he's done at least 8 or 9 of these tube exchanges.  We have been averaging an exchange about every 4 to 5 weeks...

We are STILL KICKIN' THAT cancer.  And tomorrow Tom goes in for Chemo so here's to hoping that his blood work comes back good so he can receive the chemo....(Gawd, here I am hoping that they are successful with filling my hubby with posion chemicals)

Hugs,
Margaret and Tom

Re: My Husband and Cholangiocarcinoma - Part 2

Margaret, that was some pretty good news. I am hoping too that Tom gets his fill tomorrow...but let's think of it as a huge chocolate cake with Marshmellow frosting! Wishing you the best for tomorrow.

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....with the bile flowing again I am hoping for good news coming your way.  There you go and kicked it again.
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

All:

Good news again today!  Tom's bili level is going down.  It was 22 last week and today it's at 17!  Yipee Skippy!  I know with the new drain tube with more holes in it that was inserted yesterday may be the reason for the bili level going lower so thank heavens for that! 

He was able to get his second round of IV chemo in today, so the plan is that he will also get another chemo treatment next friday.  We are keeping our fingers crossed on that!

I know that in a few days, fatigue will be setting in for Tom, I only hope it's not as bad as the last time.  Boy if kickin' would really work, I'd be kickin' that cancer right out of him!  His doc said his tumor markers were also coming down, at last blood tests they were up to 194.  So that is even better news!

Go with God and KEEP KICKIN' THAT cancer.

Hugs,
Margaret

Re: My Husband and Cholangiocarcinoma - Part 2

Great news, Margaret.  Oh, the rollercoaster ride of this disease.  You are on the up again and going up while the tumor markers are going down.  Just what we want to see.
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

Way to go, TOM! Margaret you just keep kick'in, there is somthing to be said about that!!!!!!!!!  Wonderful, made my day.

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

Hi Margaret,

Great news about Tom! Am keping my fingers crossed as well that Tom can get another treatment in next Friday. Keep kickin it indeed!

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

Thinking of you & Tom, Margaret smile

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson