Re: Starting SBRT Thursday, 5/2

Thanks for the inspiration Lainy.  I am still scared with the bilirubin being so high.  Also, I think I look a little more yellow today than yesterday but I'm not calling the doctor because I don't want to be in the hospital on Mother's Day.  I'm hoping to feel well enough tomorrow to go out with me daughter.  I can't wait for Monday to come and get that last treatment in.  I'm so afraid they're going to tell me they can't do it if the bilirubin is higher on Monday.  I'm trying to stay positive!!!

Happy Mother's Day to you Lainy and thanks for all the words of encouragement.

Mary

Re: Starting SBRT Thursday, 5/2

Mary,
You have been thru a lot lately!
I pray you feel well enough to enjoy Mother's Day. Get one last treatment in and then let the docs do what is best for you.  I hope the radiation begins to work fairly quickly so you can get start to feel better.
Hugs and strength to 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

Thanks Kris.  How are you doing in the clinical trial?

Re: Starting SBRT Thursday, 5/2

So far so good. My hands are feeling bloated and sore/tingly but they say it isn't a side effect... Hope it goes away soon or I'm gonna have to say it is a side effect!
But that's my only complaint so I won't complain. June 17 is the big day when I find out how well it's working. Thanks for asking: you have enough to worry about!
I'm accompanying a friend to B.R. In June for a pre hospital cert for her... Maybe you will feel up to visiting for lunch at Panera or somewhere close. Need to find out specifics. And not be working... Looking for a part time job now.
Have a good Mother's Day. And keeping you in my prayers for your last radiation to go thru and for it to stop the progression and do some damage to those $&!!! Cancer cells! I'll try to send my troll to visit: he stopped by the other day to eat some cancer! His favorite treat!

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

Hi Kris,

Hopefully the bloating, tingly feeling will subside.  Happy thoughts for June 17th!!!

If I'm doing ok in June, I would love to meet with you.  I don't eat much at this point but maybe that will be different in June.  I truly hope so!!!

Definitely send that troll my way!!!!!!!!!  I need him badly!!!!

Mary

Re: Starting SBRT Thursday, 5/2

I hope and pray for great news from both of you, Mary and Kris. Keep your chin up, Mary. Things will get better.

Hugs,
-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

Thanks Pam.  I'm sitting waiting to be called in for my last SBRT treatment.  Then have appt with IR on Wednesday regarding drain or stent.  Looks like it will be a drain but I'm still hoping for a stent.

Mary

Re: Starting SBRT Thursday, 5/2

Hi Mary,

I hope your last treatment went well and I will hope right along with you for a stent.

Sending love and hugs,
-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,

Like Pam I too hope that your last treatment went well and I will keep everything crossed for you for some good news and also for a stent instead of the drain.

Big hug for you,

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 Pam & Gavin,

I did well yesterday with last SBRT treatment and feeling good today.  I have my appt tomorrow with the IR and will find out if they'll be doing a stent or drain and also when it will be done.  Bilirubin was up again yesterday 19.7.

Staying positive!!!

Mary

Re: Starting SBRT Thursday, 5/2

Mary, POSITIVE will get you everywhere! Good luck tomorrow and you know we will be sitting on pins and needles!

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

Glad to hear you are staying positive Mary, and feeling good as well! Please let us know how you get on today.

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

What is SBRT?  And when/why/how is it used?  Before or after chemo?

kaklon

Re: Starting SBRT Thursday, 5/2

Stereotactic body radiation therapy (SBRT) is a technique that utilizes precisely targeted radiation to a tumor while minimizing radiation to adjacent normal tissue. This targeting allows treatment of small- or moderate-sized tumors in either a single or limited number of dose fractions.
There are numerous types of radiation, not all are used for our cancer. 
http://www.cancer.gov/cancertopics/fact … /radiation


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

Hi Everyone,

I met with the IR today.  Bilirubin still going up - it's now 22.1.  Also, not such good news about the tumor in my bile duct in my liver.  It is growing rapidly and I have complete blockage.  Half of my liver is completely dead and the other half is diseased and the IR is not sure he can get the stent in or if he does that it will drop the bilirubin enough for me to get aggressive chemo.  Without the chemo they give me about a year or two to live.

He wants to try to put in two stents.  He won't know if he can even put in one until he gets in there.  If he can't put any stents in then he will do the external drain.  With either, he's still not sure if it will lower my bilirubin enough. 

Procedure is schedule for this coming Monday, 5/20.

Please keep me in your thoughts and prayers.  I so want this procedure to be successful.  I want to live.

Mary

Re: Starting SBRT Thursday, 5/2

Oh, Mary, I am so very sorry, I can't find the words. BUT, as long as they have options and as long as you have hope it is a good combination to start with. Now, listen Mary, Mary...you know we do not accept time frames in these here woods! I have everything crossed, even my eyes that this will be successful. AM anxious now for Monday. You never know how strong you are until "strong" is the only choice you have! Wrapping you in prayers, thoughts and heart.

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

Kris....this is a clinical trial Phase I.  The purpose of this trial is to give you the opportunity to be one of the first people to receive a drug not tested in large control groups hence, eventually (I believe in 3 months) lead to the development of a Phase II clinical trial.  Toxicity levels are to be determined and possible occurring side effects are noted.   So, I don't understand as to why you are being told that the swelling is not related to the drug. How do they know that?  Sorry, but this is bugging me.
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

Hi Lainy,

Thank you for your kind words.  I'm trying to stay positive but it's so scary when they tell me how bad it is and I don't feel that sick.  I am jaundiced and I don't have much of an appetite but all in all I don't feel as sick as they say I am. 

Please pray that they can get the stent in on Monday and it will bring my bilirubin down enough so I can get the aggressive chemo and have a chance to survive.

Thank you again for all you words of encouragement.

Hugs & Love,
Mary

Re: Starting SBRT Thursday, 5/2

Hi Mary,

I'm real sorry to hear the latest news from you. So not what you or I wanted to hear but I am glad to hear you say that you are staying positive. I know that it is very scary when you hear news like this. I was there with my dad when he got news like this, he got a few hits like that and it was very tough. He used to bounce back in a day or so and got his fighting gloves on each time again.

You know that we are all here with you and for sure tons of positive thoughts are coming your way for Monday. Please don't give up hope and know that I am crossing everything for you!

Huge hug for you,

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

I am praying that things will turn around for you, sweet Mary. All the best and try and keep your hope alive.

Tons of hugs,
-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

Thank you Gavin and Pam.  Your kind words have brought tears to my eyes.

Gavin, I know just how your dad felt.  I was down yesterday but I got a good night's sleep and I have my "fighting gloves" on again and ready to put all I have I to this.

I'm thinking positive thoughts for Monday.  They'll get the stents in and bili will come down and I will get aggressive chemo!!!

Thanks,
Mary

Re: Starting SBRT Thursday, 5/2

Mary, YES, get those boxing gloves on! I understand they are pink with diamonds and laces of gold thread. Looking for some good news from you, it's time! Attitude is really so helpful, so glad you had a good night's sleep. Tons of hugs! {}{}{}{}{

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

Mary....I too am sorry to hear of the latest developments.  But, dear Mary, we have seen some incredibly dismal reports with some not so expected, great outcomes.  I agree with the others, these boxing gloves have to stay on for the big fight yet to come.  For now I am counting the days for the drainage to successfully bring down the bilirubin in order to start the treatment.
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

Re: Starting SBRT Thursday, 5/2

Yay Mary, them's fighting words I hear from you!!! That's great that you got a good nights sleep and you certainly do sound ready to go fighting again! We're there with you and you know tons of positive vibes are coming your way for Monday!

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

Mary, keep fighting! Don't listen to them! Remember, they told me last April to put my affairs in order and I'm still here.
I'm praying you get some good news: you deserve a break.
If you pray, read this. I was told to quit asking. I was told to thank God that something will go well. So when I pray I say "God, thank you for giving the doctors the knowledge and skill to get the drains or stents successfully placed so Mary gets some relief and thank you for allowing her to get the chemo to save her life!"

Marion: I am in Phase Ib of the trial. Fifty or so people have taken the drug. Toxicity levels were pretty much established. Side effects have been noted. Of course, that's a small population. But the tingling is better since I limited my liquid intake. Still more swollen in am, but at least they aren't talking to me at night.

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.