kathyb
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Linda,
I live in Iowa and first went to the University of Iowa Hospital and Clinics. They have a large cancer center. I asked a doctor there how many bile duct cancer patients they see. To my surprise he told me they see 2-3 a year. I would find out how many cc patients Univ. of Chgo has.
My insurance had already denied going to Mayo as it was out of network/out of state. We had the referral coordinator at our local doctor’s office file an appeal which was based on the fact that Mayo sees a large number of cc patients and UIHC see’s 2-3 a year. The appeal was approved around 5pm the night before my Mayo appointment. The lady at the insurance company told me it would never have been approved if I had not already gone to UIHC.
It makes me angry that your primary doctor will not ask for a referral. If this is insurance from a job, is there a union or an hr office that could offer help or suggestions? I know that unions can often help. Can you change primary doctors?
Your experience with the local oncologist confirms my decision to drive 2 hrs to Mayo for my chemo. I really didn’t want an oncologist who has never had a choloangiocarcinoma patient.
Linda,
My prayers will be with you tomorrow.
KathyThese insurance issues about where you can and cannot go are very frustrating!
My second cycle was to start today. Chemo was postponed because my white blood count was too low. That really surprised me (and the doctor, but he says everyone is different) to have that problem so soon.
Since I am at risk for infection with two previous incidences, the doctor said if I was to get an infection with my white blood count low, I would not have as good of chance to fight it off.
About my previous nausea. He said it seems the EMEND is working good as it is suppose to take care of nausea a few days after you stop taking it. On the last two chemo treatments I have gotten sick on day 5. He told me to take Zofran first thing in the morning on day 5, maybe 6 and 7; and if I get nauseated, take compazine. He thinks Zofran works best before you get nauseated and copazine works best when you are nauseated. But then again, everyone is different.
The plan is to go to my local doctor on Monday and have lab work done. If everything looks ok, we will be going back to Mayo on Wed. for chemo.
When my stent blocked in May, I had no chills or fever (which are symptoms). I first felt very tired for a couple of days and then sick to my stomach (no vomiting) for three days at which time I noticed the whites of my eyes had yellow in them. I’ve been told the eyes are the first to get yellow. Some doctors also look under the tongue for yellow.
It does show up in the labs – total bilirubin count.
I hate being the person with cancer. The selfish part of me would rather be the caregiver. I’ve been both.
I hate belching like a man, having gas, and the tears that come so easily. Things that did not describe me “before cancer”. I told my husband recently that I am not the person he married. (He replied that he wasn’t either. Truth is, he’s better than the person I married.)
I get down when I think about being or becoming a burden to him, while his focus is to be optimistic, do the right things, and for me to get better. He actually says he feels blessed to be able to take care of me.
I HATE CANCER, but I am very much blessed. Thank you, God.
Thanks for sharing your knowledge, Linda.
They give me Emend, Kytril and Dexamethasone on chemo day. I take the Emend for the next two days and the steriod (Dexamethasone) for three days afterward. They seem to work until day 5. I have compazine and zofran on hand. From last fall’s chemo, the Zofran doesn’t work and compazine worked on and off. They say you should take them before you get nauseated, but I don’t want to take them if not needed. If you’ve taken these, at what point do you? It took three days of not feeling great for me to get back to “normal” this last time.
Kathy
Thanks for posting this, Galvin. The common belief seems to be that a metal stent cannot be removed. This shows there are exceptions. Changes and improvements are coming.
I have a metal stent wrapped in plastic. My doctor told me it is not approved for removal (yet), but he can do it if we need to.
Kathy
Jtoro,
I have asked every doctor I’ve seen what caused me to get bile duct cancer. Was it something I did or didn’t do? Every single doctor has told me no. One doctor said it was just, “Bad luck.”
Kathy
I understand your feelings. I went to the doctor the end of May for my yearly complete physical and all my blood work and everything was great. Not much more than a week later I started itching, went back to the doc a couple of times in June and was treated with steroids for the unexplained itching. They did not do more blood work as I just had it. It wasn’t until I went to another doctor the middle of July who did blood work and a CT that I was diagnosed with “undiagnosed liver disease.” The end of July I was officially diagnosed with bile duct cancer with only half my liver left (atrophied) and told I probably had this a year or two. I thought I was the picture of health. By the time insurance approved me to go to a place (Mayo Clinic) with experience in bile duct cancer, the tumor had doubled in size during the month of Aug. (which then I did not qualify for a liver transplant).
You know, this makes me mad too! Don’t be mad at yourself, though. This seems to be an unpredictable cancer. Why can’t being unpredictable also work in our favor when things aren’t looking good? I think it can.
Kathy
We all have different personalities and different ways of expressing thoughts.
Beth, I rejoice in your husband’s success story. Thank you for sharing such good news. We all need to keep the hope.
Isisman, I do not believe you were being rude or negative, just stating how you felt on the day you responded.
We never know where someone is at on this journey. I appreciate how the people on this board are accepting of our differences.
Kathy
Linda,
Thanks for your suggestions. I sort of thought I only had to drink lots of water on the day before and after. That’s not easy for me to do, but I try. Does it really have to be clear liquids? I’d like everything to count. I drink at least three glasses of milk a day and would like that to count. What do other chemo nurses say?
Day 5 after chemo was yesterday and again I was sick. I got nauseated in the night and threw up. (Could be because I overate and had salsa – love that salsa, but probably have to give it up for awhile). Mostly all day yesterday I had an in bed type headache. Before chemo I have never had to deal with headaches. Today I feel fine. I’ll try some caffeine next time. Not suppose to take ibuprofen and only 2000 mg of Tylenol a day – which I don’t take until absolutely necessary because it’s hard on my liver. Some people think I’m silly about that especially when I’m on chemo, but it’s my liver. It’s only half there but still doing a good job for me. I think my liver is amazing.
Kathy
Had my second chemo yesterday. The week in between went pretty good. I take EMEND on the day of chemo and for two days after. Also get steroids on the day of chemo and three days after. No nausea to speak of. Noticed that I ate very frequently while on steroids. Not sure if it was because of the steroids of just an excuse because I have the mindset that food will heal me. Also noticed that when I stopped taking steroids I felt tired, no ambition to get anything done, and just sort of blah.
Five days after chemo I stayed in bed all day with a very bad headache and temp of around 100.5. Called my oncologist and he said if temp goes to 101 for an hour I needed to go to ER. It didn’t. Next day I felt a whole lot better and the next day which was chemo day I was back to normal. I can deal with this.
The chemo nurse further explained to me that I need to drink lots of water the day before and after chemo. She said Cisplatin is harder on the kidneys so it is mixed with saline and an diuretic is added to it. She also said it’s important to go to the bathroom when you have to go to get it out of there – do not try to hold your urine longer than necessary.
I have noticed that I spelt Gemzar wrong on the title. Is there any way to change that?
Kathy
Hi Marie,
Sorry life has brought you to this site, but glad you found us. The people here are so caring and nonjudgmental even though opinions are expressed freely.
I was diagnosed with inoperable Stage 4 Cholangiocarcinoma (I first thought it was stage 3 and even wrote that in my introduction, but I was wrong – sometimes I like to live in denial) last July.
Ask your oncologist what he/she would suggest if it was his/her father. I use to do that with doctors about my kids. I’ve actually told my oncologist that he was wishy washy about what I should do. The truth is, I’m wishy washy. I had FU5 chemo and radiation last fall. Chemo suggested in Feb and turned it down because I was just feeling too good. Changed my mind (even though I was still feeling great) and started chemo in May to stop after one treatment (ended in hospital for a stent blockage which I blamed on chemo – chemo does not turn your urine dark or make you jaundice.) Now, I’ve restarted chemo and have had two treatments of Cisplatin/Gemzar.
For some of us it’s such a hard decision. If you are a person with faith in God, I would pray that He would lead you to treatments you should have and block treatments you shouldn’t. Only He knows the best plan for our lives. Sometimes I think I need a good knock in the head because I don’t think I have very good discernment
Kathy
