Starting SBRT Thursday, 5/2
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Mary…so sorry to hear of the latest development. Mary, in regards to external stent, Margaret posted on this extensively.
Here is her link:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=54517#p54517
I also am hoping for our Betsy to chime in, as she also is an expert on this.
Most of all, dear Mary, stay positive. The physicians are in your corner and I am sure that they will come up with the best solution for you.
Thinking of you and sending tons of hugs your way,
MarionHi everyone,
Well another bad turn of events for me. I had my second SBRT treatment yesterday. However, after the treatment they did blood work, because I’m jaundiced, and my bilirubin came up high so they admitted me and had a CT scan done to see what was going on. It seems the tumor is squeezing the bile duct, not allowing for any drainage from the liver – hence the jaundice. Now they have me waiting around, still in-patient, to see about putting a stent or catheter in. Since my only symptom is jaundice (no fever, infection, itching), there is a possibility they could hold off on the stent or catheter and proceed ahead with finishing the SBRT treatments. The gastro doctor is getting together with my radiation oncologist and medical oncologist to make a decision. Hopefully, I’ll know something soon as I just started to get my appetite back yesterday and now they have me fasting in case they do this procedure!
Can anyone share their experience of having a stent put in the bile duct in liver?
The catheter sound so drastic to me with the bag on the outside and all the home care you have to do. I’m a pretty active person and this would really get me down. I told them I don’t want a catheter. They said the only reason for a catheter would be if they weren’t able to open up the bile duct for the stent – then they would have to go with the catheter. They wouldn’t know that until they actually go in.Any advice would be so helpful right now!
Mary
Dear, brave, Mary,
Nothing worse than feeling so lousy. Anything to distract you? I know this is crazy because I do not watch tv but I have discovered that I like watching golf on tv – – and I’ve never played golf either. Who knows what might take your mind off “lousy!” I think your walks are a great idea…..all the docs say exercize even when you feel lousy, if you can. So many prayers for you, so many of us pulling for your sbrt to happen, and happen well, and without incident. Close your eyes and Lourdes will be right there in your mind’s eye. – HollyMary….. Is it possible for you to add some protein shakes to your diet? The health food stores sell several varieties not loaded with the all “garbage” some of these commercial products contain.
So glad that you are moving around a bit too. I hope for things to improve a bit more each day.
Hugs,
MarionMary, I was going to ask you about doubing the Zofran. WHen I had my Colitis attack Zofron was the only one that worked but I know they all work diff on everyone. Good luck with it all. Glad to hear you have family around you!
I have zofran for the nausea but it didn’t seem to help. I don’t feel nauseous today so that’s good. But I’m going to ask the doctor tomorrow if I can take two zofran at a time if I get the nausea again. I used zofran when I was on chemo and it helped but I guess this SBRT is so strong that my body is reacting differently to it than the chemo I was on.
I have family close by and my daughter only lives 25 minutes from me. They’re always checking on me and stopping over. My one sister slept over my house last night – that’s who I walked with yesterday and we went to the supermarket and picked up a few things. I ate half a sandwich and jello yesterday afternoon. The soup is a good idea – I didn’t think of that. I think my other sister is coming over today maybe I’ll ask her to pick that up for me on the way over.
As for the jaundice – I guess it could be from that but I’m hoping not – I just want to get all these treatments and then if they have to put a stent in after the treatments, I’ll deal with it.
Mary
Mary, this is big and you are exhausted who wouldn’t be tired and emotionally down.
I am glad you felt better after your walk but you really need to try and eat. Just water is not good as I recently found out. You need nutrition. Try some soups like Chicken Noodle. I am sure you don’t want to cook but Lipton’s Chicken Noodle soup is very good. When I make it, it calls for 2 Cups water, I only use a little over 1 1/2 Cups, really good. Graze all day more than sitting down to a meal. Are you on anything for Nausea yet? Can someone go to the store for you? I was wondering earlier how you were doing. Do you think the side effects could also be from Jaundice? Sorry for all the questions. Thinking of you and wishing for the best!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
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
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.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
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
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