• From: palmetto bay,florida,usa
  • Registered: Mon, 11 Jun 2012
  • Posts: 25

Topic: Update on Roberts treatments.

We just finished six cycles of systemic chemotherapy with gemzar and oxcilaplatin and are having the cat scan Nov. 30.   I know it sounds crazy but Robert must be feeling better because he spent the last few weekends  dancing the night away with me.  I can only hope that his tumor has responded .   Send us your prayers and as always I thank you for the support.

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: Update on Roberts treatments.

Dear i3carats, I LOVE it! Dancing is good and a good sign. Sending you a zillion good wishes for a great Scan the end of the month. And, keep on dancing!

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.
  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 678

Re: Update on Roberts treatments.

ditto what Lainy said!  Best wishes for a good scan and enjoy your Thanksgiving.

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • Registered: Fri, 02 Dec 2011
  • Posts: 80

Re: Update on Roberts treatments.

The dancing sounds wonderful.  Good for you.  My prayers are with you.

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Update on Roberts treatments.

13caras...keep on dancing and know that a tidal wave of good wishes is heading your way.
Hugs,
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
  • From: palmetto bay,florida,usa
  • Registered: Mon, 11 Jun 2012
  • Posts: 25

Re: Update on Roberts treatments.

Thank you all for all  your good thoughts and  prayers.  In this holiday season when this illness takes on a life of its own, your well wishes bring us hope.  Robert had a cat scan the other day and it showed that his chemo treatment of gemzar and oxciliplatin had reduced the tumor by 33%.  but some tiny specks have now appeared outside the lung.  He is going for a pet scan on the 18th but it looks like more chemo is up the pike.  I will let you know how it goes.  Meanwhile, Happy Holidays to all!

  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: Update on Roberts treatments.

WOW! 33% is pretty respectable as far as shrinkage goes. Let's hope for some more good news later, heck why stop the good news now! I love all the early Christmas gifts our Board is receiving this year.

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.
  • Gavin
  • Gavin
  • Moderator
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,832

Re: Update on Roberts treatments.

Hi i3,

Thanks for the update on Robert and a 33% reduction in his tumour is good news! My fingers are crossed for good news for the pet on the 18th and please let us know how that goes. If more chemo is on the cards then my fingers will be crossed for that as well.

Best wishes,

Gavin

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Update on Roberts treatments.

Great news on the huge shrinkage. Hoping the PET goes well too. All the best to you and Robert.

Love, -Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: palmetto bay,florida,usa
  • Registered: Mon, 11 Jun 2012
  • Posts: 25

Re: Update on Roberts treatments.

Robert had the pet scan and some areas lit up that I have not heard  are indicative of cholangiocarcinoma.  Have you ever seen pelvic bone mass or small nodules in the lungs from this tumor.?  He still feels great but the treatment may make him ill.   Let me  know...thanks, nancy

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Update on Roberts treatments.

13carats...although, people differ, we have had several reports of metastases to lung and to bone.  One person in particular stands out; our JeffG:http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=579
and
http://www.cholangiocarcinoma.org/punbb … php?id=688
http://www.cholangiocarcinoma.org/punbb … hp?id=1405

Others may also want to share their thoughts with us.

Hugs are heading 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
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Update on Roberts treatments.

Hi,
Yes, the CCA can spread to abdomen area like the omentum ,bones and lungs.
If the patient is female, it can spread to the ovaries.
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.
  • From: palmetto bay,florida,usa
  • Registered: Mon, 11 Jun 2012
  • Posts: 25

Re: Update on Roberts treatments.

Hi everyone, I am taking Robert up to Moffitt tomorrow and hope to get a second  opinion with the radiation oncologist for a new  radiation therapy invoving  injecting 90-y glass beads into the tumor with radioablation.  Has anyone had any experience with this?

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Update on Roberts treatments.

Good luck, tomorrow.  Until others have a chance to respond I thought to enclose a few postings:
http://www.cholangiocarcinoma.org/punbb … hp?id=7925
http://www.cholangiocarcinoma.org/punbb … hp?id=3259
http://www.cholangiocarcinoma.org/punbb … hp?id=7675
http://www.cholangiocarcinoma.org/punbb … php?id=938

Hugs,
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
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,215

Re: Update on Roberts treatments.

I don't have this experience but just wanted to wish you the very best for tomorrow. I think it is a very wise thing you are doing. Here is wishing for a good meeting!

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.

16 Reply by PCL1029 (edited by PCL1029 Tue, 15 Jan 2013 22:42:28)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,735

Re: Update on Roberts treatments.

Hi,
If I may, I will not recommend radioembo  for treating CCA But rather use chemoembo. Based on the  mortality of the patients  population on this forum.
Except the very young patient who did have radioembo done and still around.
Most of the people who had radioembo  in the links that Marion mentioned above are no longer here. I suspect this is related to the toxicity o f the radiation that the older patients  had a hard time to recover from it.
As you may know, I am only a patient of this disease for 45 month, and absolutely I am not a doctor.
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.
  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Update on Roberts treatments.

Hi Nancy,

My daughter, Lauren had Y-90. What would you like to know?

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website