Starting SBRT Thursday, 5/2
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Thanks Marion and Lainy. I’m not so worried about the procedure so much but rather the external drain limiting my activity and causing me stress caring for it.
But I guess like Marion said, I have to pick the lesser of two uncomfortable situations. I’m just confused why they keep saying drain as if the stent is t a possibility. I have a call into my med onc asking that.
Mary
Mary, you are NOT going downhill, you are scared and nervous about the drain. Who wouldn’t be nervous, everything with this CC is so strange and it is normal to be afraid of the unknown. IF the drain is external you will get used to it in no time at all. There is not that much involved. You are put to sleep so you will not feel a thing. The taking care of it is just to wipe around the area with alcohol and if you want to, put cream on the area so it doesn’t irritate your skin. If the tube pulls just pin it up a little to the underside of your clothes. They will show and tell you what has to be done and it will become second nature to you. Honestly if Teddy eventually golfed with it, it should be fine. My hope is that if the DOCS decide to do the external, you will post us all that you worked yourself up for nothing! Suggestion, I would ask your ONC of there is something he can give you just to take the edge off as you are so stressed by the thought of the drain! I am hugging you so hard! {}{}{}{}
Mary….with appropriate drainage some of the symptoms may decrease. I know and so much understand your hesitation of having a drain installed however; sometimes we have to pick the lesser of the two uncomfortable situations. And, it may be a temporary solution only.
Hang in there, dear Mary.
Hugs,
MarionThanks everyone. I’m continuing with the SBRT treatment – having fourth one tomorrow and final one on Monday. After treatment yesterday, I met with my radiation oncologist and then my medial oncologist and they both said the same thing. After they discussed my situation with the gastro dr, I need to have a stent or drain (catheter) put in to open the bile duct because the bilirubin continues to go up and they don’t believe the SBRT is going to work quickly enough to get it down. Bilirubin was 6.2 on 5/2, 11.1 on 5/6 and 13.7 on 5/8. Also, they both said it would probably be the drain (catheter) which is what I don’t want because it’s external and takes a lot of care. Have to be careful sleeping with it and taking showers. It scares me. They said they would try the stent first but if they can’t get the “wire” to go through the bile duct where the tumor is then the stent wouldn’t work and then would have to go with the drain (catheter). I’m waiting to hear about an appt with the interventional radiologist for a consult next week since that a the dr that does the stents and drains.
Right now I’m feeling ok but not eating much. I just vomited and feel better but no appetite. I just want to get through the five SBRT treatments with the hope they will help. I feel like I’m going down hill very quickly and it’s scary.
Mary
Pattimelt, I am so happy you are feeling better. BUT…if you have a weird feeling about your Doctors PLEASE get another opinion, quickly. Always listen to your gut. Where are you being treated? Another opinion will validate what is being done is right and put your mind at ease. Wishing you the very best.
I recently had 2 SIRT treatments that sound similar to SBRT. It has been 6 weeks since last treatment & I am finallly feeling good. I was so tired & nausea. Now I have to wait to see what will be next. Sometimes I wonder if my doctors know what they are doing! Thinking of you & hope your side effects diminish.
Mary,
In response to your question about stents, I have had a plastic stent in my bile duct since September 2011 that I have replaced every 2-3 months. They put you to sleep and you will never know they did anything.
Good luck with your treatments. Sending positive thoughts that you will be able to finish!
Hi Mary,
Sorry to hear the latest news from you. My dad had a stent fitted, a metal one and he had no problems getting it placed and it worked well for him. It sorted out his jaundice and lasted over a year or so before clogging became an issue for him. I do hope that your sbrt goes well today and I too hope that you can finish the course of it. Everything is crossed for you and loads of positive thoughts coming your way as well.
And a huge hug as well!
Gavin
Mary….good luck tomorrow. Wishing for the radiation to stay ahead of the game. I will continue to stay positive and am sending tons of good wishes your way.
Hugs,
MarionMary, ya got to feel the prayers and the love. There will be so many of us with you in spirit tomorrow the Docs may ask us to leave the room! Best of luck!!!
Just wanted to thank everyone for your support during this very difficult time for me. I am home tonight. The doctors have decided to let me try and finish the SBRT – third treatment is tomorrow – but they will watch my bilirubin closely and if it goes any higher I’ll have to re-visit the possibility of a stent or catheter.
My hope is to get through the five SBRT treatments and that it shrinks the tumor enough to open the bile duct for drainage and the bilirubin goes down.
Upward and onward!!! Please keep those prayers coming!!!
Mary
Mary, Teddy didn’t mind the external stent at all. He used to pin it to his underware and in 3 months after surgery he was lightly golfing! I mean lightly, but a few months later he even really golfed with it! Best wishes!
Mary,
I am sorry to hear things are not going well. I had so hoped you would find some relief and start to feel better. Ugh! I hate this cancer!
I’m praying that your docs have the knowledge and skill to help you feel better soon.Dear Mary,
I am so sorry for the latest change of events. I know you don’t want an external drain, but I that is what will make you well, it might be for the best. I have been to lunch with our Betsy who has an external drain, and you can’t tell she has one. She is very active and a joy to be with. So, like with everything, you learn to adapt. I am hoping this won’t have to be the case for you, but if it is, it will probably take time to get used to, but you will be able to do most things you are used to doing. Hoping for the best for you.
Love and hugs,
-PamThanks Marion,
I read Betsy’s post and bless her for caring for her husband that way! It still makes me not want the external drain. I just don’t want to do that. I just heard some news that they’re not doing the procedure today but I’m not sure what that means. Am waiting for a doctor to come and talk to me. I don’t know if they’re going to send me home and let me continue SBRT treatment or are going to do the procedure tomorrow. It’s a waiting game at this point and very frustrating!!!
Mary
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