Starting SBRT Thursday, 5/2
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May 17, 2013 at 11:13 pm #71358mcwgoatSpectator
Oh, thank you all so much for your kindness and warm thought!!! What a family we have here and I am grateful to have found you all!!!
Kris, yes I am a praying person so I thank you very much for that prayer. My prayers every morning and night have been asking God to guide the Dr. Erinjeri on Monday so he can successfully get the stents in and they help lower the bili so I can have the aggressive chemo.
Please, everyone keep me in your prayers and thoughts especially at 11:15am EDT on Monday when the procedure is going to be done.
Hugs & Love to All,
MaryMay 17, 2013 at 12:35 am #71359RandiSpectatorMary,
So sorry to hear what you are going through. You have an absolutely amazing attitude and that will serve you well. I will be sending good thoughts your way for Monday, hoping they can place the stent and get your bilirubin down.
((Hugs))
-Randi-May 16, 2013 at 11:14 pm #71360kris00jSpectatorMary, 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.
May 16, 2013 at 6:12 pm #71361gavinModeratorYay 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
May 16, 2013 at 4:05 pm #71363marionsModeratorMary….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,
MarionMay 16, 2013 at 3:43 pm #71362lainySpectatorMary, 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! {}{}{}{}{
May 16, 2013 at 2:57 pm #71365mcwgoatSpectatorThank 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,
MaryMay 16, 2013 at 2:32 pm #71364pamelaSpectatorI am praying that things will turn around for you, sweet Mary. All the best and try and keep your hope alive.
Tons of hugs,
-PamMay 16, 2013 at 2:00 pm #71366gavinModeratorHi 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
May 16, 2013 at 1:12 pm #71367mcwgoatSpectatorHi 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,
MaryMay 15, 2013 at 11:03 pm #71425marionsModeratorKris….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,
MarionMay 15, 2013 at 8:50 pm #71426lainySpectatorOh, 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.
May 15, 2013 at 8:29 pm #71427mcwgoatSpectatorHi 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
May 15, 2013 at 7:07 pm #71428marionsModeratorStereotactic 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/factsheet/Therapy/radiationHugs,
MarionMay 15, 2013 at 2:59 pm #71430kaklonMemberWhat is SBRT? And when/why/how is it used? Before or after chemo?
kaklon
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