Topic: Starting SBRT Thursday, 5/2

Hi Everyone,

As some of you may know, I was suppose to leave tomorrow for a pilgrimage to Lourdes, France for healing.  However, I started having dark urine and some pain over the weekend.  I went to my GP, thinking (really hoping) it was an UTI and she would give me antibiotics and send me on my way.  Sadly, not the case - bilirubin is very high.  Results were given to my radiation oncologist and she said I have to start SBRT right away or I could turn jaundiced in a few days.  She said this is a sign the tumor is growing and squeezing on the bile duct.  So I'm starting this Thursday, 5/2.

I am very disappointed that I will not be going to Lourdes but am trying to stay positive and believe everything happens for a reason.  God is in charge and He does know what's best.  Better this happened before I left for the trip rather than when I was in France.

Please keep me in your thoughts and prayers.  I'm praying the SBRT works for me.

Mary

Re: Starting SBRT Thursday, 5/2

Dearest Mary, I am just so very sad you had to miss the trip to Lourdes. I agree with you, where are those UTI's when you need them. Unfortunately I too believe this happened this way as it would have been much worse had you not been here.  I am sending out prayers to you, and wishing for the best. Please let us know how the Chemo goes. Sending you a ton of hugs as well.  {}{}{}

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: Starting SBRT Thursday, 5/2

Thanks Lainy.  I'm not doing chemo.  SBRT is a form of guided imaged radiation.  I had gold seeds injected into the tumor in the liver and the SBRT will shoot the high dose radiation there, using the seeds as markers.  I'm scheduled for five treatments.

I'll let you know how I do.

Thanks,
Mary

Re: Starting SBRT Thursday, 5/2

Dear Mary, sorry about that, too early in the morning when I answered that! My husband had Cyber Knife which is a member of that family, I think. Best wishes for all of it!

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: Starting SBRT Thursday, 5/2

Hi Mary,

I am also sorry you aren't able to make your trip. I know you were looking so forward to it. But, everything happens for a reason and this might be the optimal time for this procedure. You would have been miserable on your trip and in a foreign country. Another opportunity might come up after you have the SBRT where you can visit Lourdes. I am hoping and praying everything goes well for you, Mary. Take care and God bless.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: Starting SBRT Thursday, 5/2

Hi Mary,

I'm sorry that you had to postpone your trip (I'm saying postponed!) and I know that is very disappointing... but if this was going to happen, it's better before the trip than during.  Hang in there, Mary.  I'm sending you loads of positive thoughts your way.  I hope everything goes well for you.

You are in my thoughts,

Jeeyoung

Re: Starting SBRT Thursday, 5/2

Pam and Jeeyoung,

Thank you for your kinds words and keeping me in your thoughts and prayers.

Mary

Re: Starting SBRT Thursday, 5/2

Mary,
I'm sorry you had to put your trip off temporarily. I'm positive there is a bright spot in here: you are still in this country and you get treatment sooner!
Praying its successful and you get to go to Lourdes in a month or two.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Starting SBRT Thursday, 5/2

Thanks Kris.  The Lourdes trip is a once a year pilgrimage sponsored by the Order of Malta (a lay organization of the Catholic Church) but maybe they'll invite me next May.  I agree - better this happened before I left the U.S.  I wouldn't want to be that far away from my doctors and start having these symptoms.

Thanks for your prayers and keep them coming!!!

Mary

Re: Starting SBRT Thursday, 5/2

I will be thinking about you tomorrow. Thanking God that it all will go well for you!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Starting SBRT Thursday, 5/2

Mary,

I am so sorry your trip has to be postponed but like others said, it is so much better to have had this happen while you are here and not out of the country.  I wish you well on your treatment and I hope that you are able to travel freely soon.

Hugs,
-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Starting SBRT Thursday, 5/2

Mary, sending special prayers and hugs and love your way for tomorow. When you feel up to it, please let us know how you are feeling. {}{}{}{}

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: Starting SBRT Thursday, 5/2

Hi Mary,

Sorry to hear what is going on with you right now and sorry also that you will be missing your Lourdes trip as well. I too agree that better that this happened at home rather than when you were away, and hopefully they will invite you again next May. So hoping that your SBRT goes well today and tons of positive thoughts are coming your way as well. And of course, everything is crossed for you too!

Hugs,

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: Starting SBRT Thursday, 5/2

Thanks everyone for your kind words.  I'm not doing so good today - vomited this morning and even after taking zofran still feel nauseous.  Have turned a little yellow but the doctor said that could get worse before it gets better.  And I might end up needing a stent which would be an issue because of the fiducial markers in my liver.  They use them to direct the SBRT but if I need a stent they would have to move the markers.  Hoping that doesn't happen and I can get through the SBRT.  four more treatments to go - hoping I don't continue to feel this lousy!!!

Mary

Re: Starting SBRT Thursday, 5/2

So sorry, to hear this, Mary.  You are undergoing an aggressive treatment and I hope that the side effects will be tolerable and short in duration. 
Fingers are crossed on this end and tons of good wishes are 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

Re: Starting SBRT Thursday, 5/2

I'm sorry Mary.
I hope you can get through the SBRT, too.
Praying you feel better soon!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Starting SBRT Thursday, 5/2

I'm sorry you are not feeling well, Mary. Prayers for you to feel better.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

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.

Re: Starting SBRT Thursday, 5/2

Come on Mary, we are all sending prayers and cheering for you! Maybe they could up the Zofran? Or perhaps a nausea given like a suppository. Gee, I hope to hear better news tomorrow. Much love coming your way.

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: Starting SBRT Thursday, 5/2

Hang in there Mary! hope you feel much better soon.
Willow

Willow

Re: Starting SBRT Thursday, 5/2

Hope you are feeling better soon Mary!
-Randi-

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

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Starting SBRT Thursday, 5/2

Sorry to hear that you are feeling like that Mary and I so hope that you start feeling a lot better very soon! Loads of positive thoughts heading your way and loads of hugs as well!

Hugs,

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: Starting SBRT Thursday, 5/2

Hi Everyone,

Thanks for all the well wishes.  It means a lot to me.

Still feeling lousy and having trouble eating but am trying to stay positive.  I'm going to try and get out and walk a little bit today - I think movement is good.  I just wish I could eat a little something and not feel so sick.  I am drinking water so don't think I will dehydrate.

Kris, did you have these issues when you did SBRT?

Mary

Re: Starting SBRT Thursday, 5/2

Mary,
I had no issues. But they didn't implant anything either. And I had my SBRT at Fox Chase in case... I wanted to be closer to home.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Starting SBRT Thursday, 5/2

Hope that you manage to get out for a little walk today Mary. And of course, I hope that you feel better as well! How are you feeling today? Stay strong and remember that we are all here for you.

Hugs,

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: Starting SBRT Thursday, 5/2

Thanks Gavin.  I did get out for awhile yesterday and did some walking.  Feeling better today but still tired which may be for stress.  I'm a bit jaundiced and am so worried about that and what is going on with my liver.  I have my second SBRT treatment tomorrow and hope to get through that and the remaining three after that.  I'm scared I'm going to get so jaundiced that they'll have to put the stent in which will affect the SBRT because of the fiducial markers (gold seeds) in my liver.  I feel like the SBRT is the best chance for me right now and I'll be really down if it has to be stopped before completed.  My appetite isn't that great but I'm trying to eat a little something each day.  I'm drinking lots of water.

Just praying I can do all SBRT treatments!

Mary