kathyb
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Ritchie,
I really understand how you are feeling, but please insist on a blood test NOW to show your bilirubin count. Whatever you decide, you need to be comfortable.
If your doctors are slow to order blood tests, an ER should be able to do it and give you the results within an hour or so. (At least around here). Wherever/whenever you get lab work, always ask for a copy for your own records.
It’s really hard to ignore those <1% predictions, especially when new to this diagnosis; but best as you can, remember that statistics are for the masses, not the individual. I was hospitalized 3 weeks after my initial diagnosis with a bacterial blood infection and told my family I was done fighting and ready to die. Treatment had not even started at that time, except for stent placements. I was not able to hold on to a positive attitude when I felt so bad. Things can change, though. The roughest times have taught me that there is hope of feeling good again. I did not realize that until I went all the way through the valley.
I’m in that <1% category, and it will be 2 years in July. My doctors cannot understand why I'm still doing great. We just don't know what the future will bring. I personally could not do this as well as I do without God's help.
Praying for you Ritchie.
Kathy
Definitely ask about the bilirubin count. It’s a blood test they have to keep an eye on. I would call the lab or doctor and ask where to find it on the lab work sheet so you can keep track of it.
Ritchie and Ann,
Sorry to hear you are not feeling well, Ritchie. Hope things are getting better.
I have a couple of friends who have had allergic reactions to chemo. (different cancer than us) It seems these allergic reactions can come on at any time during the treatment, even if not at the start of. One of my friends was put on steroids for her itching and it helped a lot. Hope you can find relief.
Kathy
I’ve never has a blood transfusion, but it’s not uncommon.
My tumor markers have been at 1576 at their known highest and 113 at their lowest. At last check they were 170. My tumor has never shrunk.
I had a CT at the University of Iowa Hospitals and Clinics during initial diagnosis time. MRI’s are the only type scan I have at Mayo where I am being seen.
I once asked my oncologist why I did not have PET scans and he said it would not show what they wanted to see with my tumor. I do know that an MRI shows structure and have read that a PET scan shows molecular function and activity. I have a friend who has has non-hodgkins lymphoma and she has PET scans at Mayo to see where cancer might be in her body.
Cat scans are x-rays and MRI use magnets and radio waves to create the imagesKathy
Ashley,
Now I’m confused. I’ve just researched the BRCA analysis you mentioned:
“…getting some genetic testing done to see if we carry the gene that can cause CC, breast/ovarian, stomach, pancreatic, colon cancer. “
Unless I’m not digging into this far enough, the BRCA analysis is for breast or ovarian cancer. Are you under the impression it will tell you if you carry a gene that causes cc? This is something I’ve not heard about. Please enlighten me.
My first thought is that you don’t have to worry about inheriting cc from your mother.
I have never heard of a specific inherited gene that causes CC. I have read some people inherit DNA mutations from their parents that greatly increase their risk for certain cancers, like breast cancer. Maybe they are starting to do more research on this.
There has been no one in my family history that has had bile duct cancer. My mother is 95 and my father lived until he was almost 94. We just didn’t have cancer in our family line.
I have the same diagnosis your mother has. I’m 19+ months past diagnosis and doing great. Planning another cruise.
I for one am very pleased clinical trials are starting to happen for cc. and would join one if needed. This all depends on the person, what they’ve previously been through, and what the state of their health is right then. Clinical trials for other cancers have produced great results. It should be your mother’s decision.
Ritchie,
Platelets help your blood to clot. A low platelet count means your body can’t stop itself from bleeding like it normally would.
I was not allowed to have chemo when my platelet count was below 100. When it was below 50 my oncologist said I would be in trouble if I was injured in a car accident. I think it’s when the platelet count is below 20 that doctors become more concerned. When the count is extremely low a person could bleed internally. The lowest mine got was 36. I never had a transfusion but chemo was postponed for that reason. People have told me they felt much better after transfusions.
During radiation and chemo (5FU) I was exhausted to the point of being in bed all day and my husband taking me to radiation in a wheel chair. I was also nauseated all the time. Nothing seemed to work. As it turned out the treatment caused a ulcer on my esophagus and I think that may have been the main reason for the constant nausea. During those weeks I questioned whether or not it was worth it going through treatment. I told my husband that if the treatment did not give me more than two months of feeling good it would not be worth it as it would just be a wash. He kept telling me that I would get better, but I felt so sick I really didn’t believe him.
I feel like I may have been where you are right now. Try to remember that it is possible to come back to feeling good again.
For my second treatment of Gems/Cits the nausea was almost completely controlled with Emend (3 days), Kytril (day of chemo) and dexamethasone 4 days (steriod). I did not want to continue taking the dexamethasone as I kept gaining weight, but my oncologyst said it worked together with the Emend. These medicines really worked great for me. Please ask your doctor if a different or added medicine might help.
My prayers and thoughts are with you.
Kathy
Maybe I’m not the norm, but I have chemo effects long after chemo has ended. Both times my joints did not start hurting (getting up from chairs or using steps) until after chemo was done. This continued for a few months and then went away.
During my last chemo I was put in the hospital for emergency stent problems. This was 5 days after my first chemo treatment. The nurses put on masks and protective gowns when emptying the pee bowl in the stool. If all the chemo was long gone from my body, why did they need to do this? Also the chemo nurse said not to have sex for 48 hours after chemo for protection of your partner. She then added that most people wouldn’t feel like it anyway
Post chemo fatigue took awhile to go away, too. Give yourself time. Although we have a tendency to now think everything is the cancer, it is not. I once went to the doctor because I had some pain and was sure it was the cancer. Turned out I was constipated!!
Randi,
When I first went to Mayo to be treated I saw the “primary” doctors and fellows. I cannot remember the primary doctor’s names, but the fellows I have been seeing from the start are Dr. Bleeker, oncology, and Dr. Romero (GI). Dr. Baron and another doctor (can’t remember his name right now) take care of my stents. There was also a surgeon that I consulted with.
Sorry I can’t be of much help to you.
My “fellows” have been a God send. The treatment and care I have received seem like I have “personal” doctors who take care of me. I feel the stent doctors are among the best in the world. I would not want anyone else.
Kathy
Lainy,
“Miracle woman”. Coming from you, the caregiver of our Miracle Man, that especially touched my heart. Thank you.
Kathy
p.s. I’ve even heard that word “miracle” at Mayo
Shari,
Hope your feeling better. I just read your posts and can relate to crying at the drop of at hat at anything and everything during chemo. I’d cry for myself, I’d cry for others and I’d cry over commercials on tv, etc.etc. It’s the steroids. It can also happen when you go off steroids. People react differently to steroids and even differently at different times, but the emotions you described are very normal while on and off steroids. I took them 4 days out of 7 during chemo weeks. It will pass.
Kathy
Tears aren’t a bad thing. I’ve read they release toxins out of your body.
