Re: Starting SBRT Thursday, 5/2

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!

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

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

Re: Starting SBRT Thursday, 5/2

Mary, 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!

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..... 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,
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

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. - Holly

Re: Starting SBRT Thursday, 5/2

Hi 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

Re: Starting SBRT Thursday, 5/2

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 … 517#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,
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

Thanks 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

Re: Starting SBRT Thursday, 5/2

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,
-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

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.

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, 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!

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

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

Re: Starting SBRT Thursday, 5/2

Mary, 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!!!

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....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,
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 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

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,

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!

Suzy

Re: Starting SBRT Thursday, 5/2

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.

Re: Starting SBRT Thursday, 5/2

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.

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 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

Re: Starting SBRT Thursday, 5/2

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,
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

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! {}{}{}{}

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 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

Re: Starting SBRT Thursday, 5/2

Mary,
I left a message for Betsy. She is wonderful and if you need a drain, she would be a great source of information for you.
Hugs
Lisa

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

Thanks Lisa.  I look forward to hearing from Betsy.

Had my fourth SBRT treatment yesterday and am doing ok.  Bilirubin was up to 17.1 but they let me go home with a warning to watch things carefully and call them if anything changes - like vomiting, feeling itchy, etc.  Fifth treatment is on Monday then I see the IR doc on Wednesday regarding stent or drain.  I think that will be done rather quickly because of the bilirubin continuing to rise and the dark urine.

Mary

Re: Starting SBRT Thursday, 5/2

OK is good, Mary, OK is good! Remember before you started you were leery of the treatment itself and now you only have 1 left. Good luck on the 5th one and then we hope and pray for the best news on Wednesday. You never know how strong you are until "strong" is the only choice you have!

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.