kathyb
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Since my second Friday chemo day has past, I thought I should add an update.
Sunday after my first chemo I was really exhausted, but no nausea. Monday on I got very sick and was basically in bed all the time. I thought it was the chemo, but my eyes on Wed were yellow. We went to our local doctor that afternoon. He said I was jaundice, did blood work, called Mayo and told me I needed to go to the emergency room up there right away. My total billiruben locally was 7.5, within a few hours at St. Mary’s hospital it was around 9.5. By midnight I was admitted and an ERCP was preformed on Thursday. The doctor cleaned out my stent and it started draining good. Friday around noon I was released from the hospital.
Although my local doctor and the Mayo doctors I’ve talked to so far think this was a separate issue from chemo, I’ve decided not to continue with chemo for now. I thought maybe I could slow progression down by doing chemo now, but my today’s plan is to wait until progression and then start chemo. I did have chemo and radiation last fall.
Hope you all have a good time with those you love this weekend.
Kathy
Rick,
Glad this is going to be taken care of soon.
I have a metal stint wrapped in plastic. It was placed last December – three previous plastic stents since July 09 when diagnosed. The doctor said this particular stent isn’t FDA approved for removal, but said he could remove and replace it. I thought they were going to replace it, but they ended up just cleaning it out because it was clogged and stones were forming. The report says this was done with a” balloon” and after all the “debris” was removed the stent was “completely patent”. My total billirubin had went up to 9.5 very quickly, and very quickly after the declogging you could see a noticeable change in my skin color. This has been my fastest recovery from a stent replacement – maybe because they didn’t have to actually change it, just cleaned it out. I know they will do what’s best for you.
Kathy
Just got back from Mayo. Emgerency stent declog. Billirubin went up very fast. Turned jaundice.
Not a question for me as I only live 2 hrs from there; but if I was on vacation and had a choice, I think I’d fly there rather than see a doctor who may or may not be as good. For my situation, it all depends on a working stent.
You have a very good local GI doctor. Some would go ahead and try something instead of referring you to someone else.
Good luck. God bless.
Lainy, I know I would love asparagus roasted with garlic and lemon juice (or in butter). It’s just the way I eat it that isn’t so appealing. My own fault, I know. I’ll have to look for marinated asparagus in a jar. Thanks!
Hi Andie,
I’m not taking any supplements, just the same healthy food items I’ve always ate – fiber foods (instant breakfast, raisin bran cereal) plus I’ve added 3-4 prunes a day, and 4 long stem asparagus stalks ate right out of the can 2x a day. The asparagus is a false internet cure for cancer, but I figured it couldn’t hurt and just maybe I’d be the one it worked for. I started out grinding it up, added hot or cold water to make it like a tea and drinking it. Didn’t like it that way and it was too much work. Now I eat it straight out of the can or the refrigerator; still don’t like it but much more tolerable. I figure there shouldn’t be any calories in something I don’t like. I’ve gained back the 10 pounds I lost during my fall treatment, plus 2. I would eat fiber bars, but just can’t bring myself to do it. I loved them before my radiation/chemo regimen last fall.
I have heard about milk thistle on this board. I should probably look into that. Thanks.Kathy
Bob,
All I can say right now is, “Praise be to God.” Thank you for sharing your journey with us.
KathyHello,
I’m sorry you have to take this journey. Cancer sucks! That being said, I was diagnosed with Stage IV iunresectable Cholanigiocarcinoma last July and had two bacterial blood infections during the following two months. I’m still here.Your wife has had such a hard time recently. I was ready to give up when I went to the hospital for my first blood infection and then again during my first treatments, BUT I actually feel great right now. So don’t loose hope.
Ask your doctor how many patients he see’s with bile duct cancer. I first went to the large university hospital in our state. When they told me they only see 2-3 patients a year with bile duct cancer, we requested a referral to Mayo Clinic in Rochester as they are quite familiar with this type of cancer.
Hope this is a better day.
God bless you,
KathyBeth,
I had radiation with 24/7 5-FU chemo last fall. My tumor doubled in size the month before radiation started. It did not shrink, but stopped the growth. Now, seven months later it is still inactive and stable. At one point I was told the tumor showed a little different color and may be dying from the inside out. I guess there is no way to know for sure unless they could cut it out and examine it, but mine is inoperable.
It’s hard to know what to do. I’m starting chemo again this week (just going from my gut feeling) even though I feel great and the tumor is inactive. I’ve been told you cannot have radiation twice on the same spot, otherwise I would consider it.
Kathy
Kristin,
It wasn’t a quick easy decision to start chemo. My doctor team suggested it last Feb but I was feeling so well and had things to do. I did not want to start. I am still feeling great, but here are the reasons I decided to:
1. Some people thought I should start chemo right away having the thinking that you should do all you can do in hopes other better treatments come along.
2. I’ve learned on this board that new tumors appear. I’m hoping the chemo will at least prolong that. Also, if my original tumor isn’t all the way dead, I’d like to zap it while it sleeps.
3. God is my main physician. I feel that He is ultimately in charge of everything and He will put a detour in the road (which can look like trouble)
if I am not to proceed with the treatments.Everyone must do what they feel is right for them, and right is different for different people.
Hope you are feeling much better every day. Do the doctors think you will be able to return to a stent? I’ve read on the board where that has happened to others.
Kristin, you are a success story to me. And a great inspiration! I don’t think there’s anybody with cc that doesn’t have bumps in the road.
The bumps people have are helping/preparing others to ride through the bumps without giving up.
TY,
I am so sorry to you and your family have to go through this, but there is hope. I was diagnosed in July 09 and my prognosis was maybe 3 months, maybe 14 months. They just don’t know. We have people on the board who are 3 years out with unresectable bile duct cancer (which I have). I’ve had four stents placed and 2 bacterial blood infections, radiation and chemo last fall. Since Nov. I have felt great. Would not even know there was anything seriously wrong, if I did not have the diagnosis. I’m now surprising my doctors by doing so well. I must admit I am a bit nervous about my check up next week and the likelihood of starting chemo again because that darn tumor is still there (as of last Feb), but that’s par for the course.I’m sure many people with more experience than I will offer you suggestions to ask the radiation oncologist. My main thought it that you and your dad need to learn what the signs of a bacterial blood infection are so you can get your mom to the ER or doctors office immediately.
Kathy
Theresa, glad you had a good week. Did you get my email? Never tried it before so not sure how it works. You will be very busy next week. Hope you have a good support person to go with you to your appointments. My appointments are the week after.
Lainy, today is the day you both have appointments. Hoping for a good meeting with the ONC for you guys.
Kathy
Kris,
Well then I hope Kalmar is able to do it. Sounds like you have a very good radiologist. That means alot. So does staying home. I hated being away from home and we drove back and forth about 3 times a week as it was only 2 hours away.
Even though it was a very difficult time for me, I would have never had my radiation here. Some of the doctors here seem to get bent out of shape when you tell them you you have been going to Mayo and will not even call Mayo for consultation. Happened to me when I was hospitalized here. I fortunately now have a general practitioner who calls Mayo anytime I see him just to make sure he “doesn’t miss anything.” I like the team effort.
Kris,
I hope you will be able to get your radiation in Kalmar only if they have the precise skills and equipment it requires. Has radiation for bile duct cancer ever been given in Kalmar?
Chemo is more of a recipe, but radiation is much more detailed. I had my radiation at the Mayo clinic which is a couple hours away, even though they do radiation around here. There is a Hope Lodge in Rochester were people can stay free while going through radiation. Is there something like that in the bigger city?
It was quite a procedure to get all the measurements needed, even of my breathing. They made a form that I would put my arms in during radiation so I would always be in the exact same position and took a picture of me in that position to compare every time. I have three little tattoos which convinced me more than ever to never get a tattoo (I hate pain – even a little prick).
It may all depend on where the tumor is located, but like everyone else I do want you to have the best possible treatment.
Kathy
