kathyb
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Interesting. Being really nice, firing people, using your video has a training (how not to get sued) video, and angry wife now working for them who will help you. hmmm.
Do they have a survey families complete after using their services? If so, maybe this survey should be sent to a different organization, rather than their own directors.
I had radiation (once daily, except for weekends, for 28 sessions) and 24/7 chemo (FU-5) in the fall of 09. I felt absolutely terrible – nauseous all the time and extremely tired (in bed most of the time). Turned out the treatment gave me an ulcer on my esophagus. After being treated with prilosec (at the end of the treatment) I improved rapidly. I have learned you can be very very sick and then feel completely fine once again. I do now. Except for chemo brain and that I get tired more easily (which could also be just getting older), I do not feel like I have cc. It’s just always knowing I do have cc and the MRI’s every 3 months.
Last year I did the gem/cits chemo combo. Had a few rough spots but not too bad. During that time I they gave me Kytril and dexamethasone (steroid) to prevent nausea. The drugs worked great! I did gain unwanted weight, though.
Everyone reacts differently. Many people on this site have had tumor shrinkage. My tumor never shrank but it has stayed stable since treatment. I consider that great news and the chemo did work in keeping me stable with no new tumors. The reason I had my second chemo was to keep things stable. It was a hard decision to start chemo when I felt so good.
Since I have not had surgery, I do not know about having 1/2 of your liver removed after chemo/radiation. I do know that I only have 1/2 of a functioning liver and it does a wonderful job for me.
They’ve probably told you this, but drink lots of water the day before and the day after chemo. I’m not a water drinker, but I drank lots of lemonade. I was told the liquid should be clear, but I also counted my daily 3 glasses of skim milk.
Best wishes on this new journey. God bless.
Kathy
Julieanne,
Your husband reminded me of me. I have an inoperable Klaskin tumor diagnosed July 09 with hepatic artery and the portal vein involvement. Only half of my liver is there as the other half is atrophied. Like your husband, I do not qualify for the other treatments you mentioned.
My treatments have been radiation with 24/7 FU-5 chemo fall 09, and gems/cits chemo June 10 – Oct. 10 with never a change in tumor size. I do have a stent – only one as the other duct is not there.
Originally I was given 3-14 months max. I am now past 18 months and feeling very good (but anxiously waiting my next MRI in a couple of weeks). I guess my point is that we never know how long we have on this earth. None of us.
Statistics are for the masses, not the individual. I’ve already beaten the odds and hope I will continue to do so.
As for controversial treatment plans, I’ll stick with my Mayo doctors. I do have what I tell people is my “false internet cure” which is eating asparagus twice a day, right out of the can
The doctors just don’t know what is best right now, but I’ve read on the board about clinical trials. Perhaps the best treatment will present itself and more of us will beat the odds.
Best wishes to both of you. It’s a very hard journey at times, but there are blessings to be had.
Kathy
Jtoro – sounds like you are doing the right thing with asking for guidance. You know your kids and situation better than anyone. Do your kids know what type of cancer you have?
Margaret and Lisa – I agree with your thoughts about sharing diagnosis and prognosis. In the future, if my kids ever have to face something like this with their spouse, kids, friends or themselves, they will know first hand that the odds can be beat. Whatever happens, I have already beaten the odds.
I’ve never had a PET scan. My Mayo oncologist told me PET scans were not the best for my situation. Maybe they are for you. I had a CT locally and at UIHC. When I questioned the Mayo surgeon (my tumor turned out to be inoperable) about why I had MRI’s at Mayo and CT’s elsewhere he said, “If you ask the MRI people, they think they are better.” He then indicated that both CT’s and MRI’s will show the results they need.
This is what I found on the web:
Cat scans are a specialized type of x-ray. An MRI uses magnets and radio waves to create the images. No x-rays are used in an MRI scanner. The PET shows molecular function and activity not structureI was diagnosed July 09 so I have had almost a year longer than you to adjust to the cancer journey I thought I was immune to. Like you, I was always very healthy. It’s hard. Very hard. As a Christian I am not afraid of dying, but I can get very sad about the things I will probably miss. I use to go into the pit of despair, and sometimes stayed there for a day or two. Now it’s more like I only spend a few hours at a time feeling sorry for myself and not very often. God has helped me so much through all of this and hopefully I’m becoming a better person. I sure pray more than I use to. When my mind is bombarded with negative thoughts I have some verses I say to myself, even when I don’t feel like it.
“Trust in the Lord will all thine heart; and lean not unto thine
own understanding…” Proverbs 3:5“For I know the plans I have for you declares the Lord, plans to
prosper you and not to harm you. Plans to give you hope and
a future.” Jeremiah 29:11Promise me you will always remember: You are braver than you
believe, stronger than you seem and smarter than you think.
(Christopher Robin to Pooh)
BY THE POWER OF GODStable is GREAT news!
Kathy
Cathy,
You will be very pleased with how efficient Mayo is as you will have your testing and then an appointment with the doctor the same day for results.
I had a couple of CT’s before I went there. First went to UIHC but they told me they only see 2-3 patients a year with cc so that’s why we went to Mayo. Mayo did their own MRI the day I went. All the appointments were set up by them ahead of my arrival.
Kathy
Cathy,
Are you a self referral to Mayo Clinic? I go there (out of network) but my local doctor made the referral and his office made the appointment. I’ve never had an interview over the phone or review board approval.
I’ve always been under the impression that an appointment can be made much sooner if you are referred by a doctor. I could be wrong. I got an appointment in less than a week.
The appointment was made before insurance approval. In fact, insurance approval did not come through until the night before my appointment.
I too had the itching (without a rash) and just felt tired. Went to the doctor twice about the itching and was put on steroids each time, which did help until I was done taking them. I even asked the doctor if it could be a liver problem or lymphoma as I had read itching can be a sign of those things (found that info on the internet). She said it would be very unlikely and would not even take a blood test as I just had blood work done less than a month earlier during my yearly physical and was declared 100% healthy. The doctor then was going to refer me to an allergist for testing. I went to a different doctor who did blood work right away and that was the beginning of this journey.
Allison,
I agree with Marion that a culture should have been taken. Blood cultures were always taken when I was admitted to the hospital. They put me on an antibiotic right away, but continued to run the test for a few more days to find out exactly what kind of an infection and make sure the antibiotic was the correct one to be on. Both times I felt much better after a few days and usually by then I had been told exactly what kind of infection I had.
Kathy
