kathyb
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Itching was my only symptom, except for being tired, which I thought was from the Benadryl. I had perfect blood work (including liver function tests) 2 weeks earlier from my yearly physical so they did not do more blood work. Thinking it must be an allergy, the doctor put me on steroids twice and was going to send me for allergy testing. That’s when I changed doctors. My other doctor ordered blood work right away, a CAT scan the same night and referred me to a local GI specialist for stent placement and biopsy. The biopsy came back negative but the local GI doctor (who is no longer here) told me he still thought it was cancer and I should go to a large center. There the biopsy came back positive for cc.
Chemo with Gemzar and Citsplatin when fine on the 8th. Had the usual up and down phase with the steriods.
Chemo last Wed. also went good. Just had Gemzar, but they did give me Emend and the steroids since I got so sick last time without them. Those steroids got me up at 3:30am first night, 2:30 am second night, and even earlier on Friday night. I go to bed around 9:30 and when I’m up, I’m up for the day. Now I’m crashing – very tired, downer attitude, etc. My judgment doesn’t seem to be the best when I’m coming down. I love salsa and had a big bowl full, not caring what it might do (on Prilosec during this treatment). Had a lot of burping but not the stomach upset the other time I did this.
The Neulasta shot was on Thursday. I felt so confident that I wouldn’t have any troubles since I had absolutely non for the first shot. Felt even more confidant after two days had past. Last night was horrible. Intense bone pain in my hip area that made it so I couldn’t walk. It seemed to go away in the early morning hours. Today it’s just bone ache and pain, but I can walk. This will pass.
Kathy
Hi Kristin,
You are fortunate to be comfortable having your chemo so close to home. It would be easier for me, for sure. Just can’t be.
Glad the nausea medicines are working. I know there’s a lot of different medical opinions, but I have been told Zofran works better if taken before you get nauseated and Compazine works after you get nauseated. Everyone is different, though.
I’ll be following your experience with this chemo. Thanks for sharing it.
Kathy
Tom,
I have a slightly different opinion on chemo, given that we just drove 2 – 2 1/4 hours (one way) for chemo today. My Mayo oncologist did tell me that chemo is a recipe and can be given anywhere, BUT there is not one oncologist in our town who has experience with cc. Different doctors often make different treatment decisions. Even though one doctor has decided on the treatment plan, there are often many decisions that have to be made along the way. I don’t believe I would have been able to find a local oncologist who would have been willing to work with my Mayo oncologist that closely and accept all his treatment decisions.
One of our local oncologist has been called a hope snatcher. Another refuses to refer patients for second opinions. These are not the people I want on my team.
I am very happy with my decision to make the trip to Mayo. For me it’s well worth it. Each person has to make their own personal decision about this considering their factors.
Kathy
My dad passed away last week. Hospice was involved. They came for a visit every day, but were not there 24 hrs a day. It was the same for my mother-in-law some years back. I do believe Hospice communities operate differently so it would be best to ask your faciltiy this direct question.
Kathy
Linda,
I am also in an HMO (with Blue Cross Blue Shield). Right on my insurance card it says “no out of network coverage”. I had one or two different doctors appealing my case for a referral (previously denied). In the meantime an appointment was made for me at Mayo Clinic by the local referral coordinator at the doctor’s office. My appointment was on a Tues and they were going to let me know by Friday. BCBS called me at almost 5pm on Monday evening before my Tuesday appointment to let met know the referral was accepted. BCBS has been fantastic at covering my expenses. The lady from BCBS told me that if I had not previously gone to an in-network provider it would not have been approved. The in-network provider only saw 2-3 cases a year with bile duct cancer and Mayo Clinic (according to their web site) sees 100-200 new patients a year.
Kathy
Alv,
I’m 61 and was diagnosed July 09 with inoperable bile duct cancer. I was given the “horrific prognosis” of 3 months -14 months with 12 as the average. Well, I am now at almost 14 months and surprising my doctors with how well I feel – no pain, have gained back all the weight I lost during radiation and chemo last fall (plus more). Needing more sleep is about all I require, but I do think I have chemo brain
I do have a stent which needs the normal maintenance and am presently taking chemo again. It was a hard decision to make as I was feeling so well. I decided to do chemo again to try to keep my original tumor from waking up and to keep other tumors from developing. I’m not sure what they will suggest after this chemo is done. Probably will depend on MRI results.
Just wanted to let you know the prognosis data those doctors give you is certainly not always true and I do think they are based on old data, since we are sort of a pioneer group with this.
Kathy
It’s been a week since my Neulasta shot. No bone pain so I am very lucky. My neutrophils (part of the white blood count) level went up to 9.6. It has to be 1.5 for chemo. My platelets went down to 45 (need to be 100 for chemo), but my oncologist thinks they will come back up before scheduled chemo next Wed.
How are you doing Theresa?
Drinking 64 oz every day? I’ll have to work on that harder
Kimmie and Lainy,
I’ve read both your vents and I’ve cried. I’m the person with cc, not the caregiver. You are a wonderful daughter, Kim; and Lainy, you are a wonderful wife.
KathyMy chemo yesterday went fine except it did hurt at first while going into the vein. It was just Gemzar. Then I ran a temp between 102 and 103. The oncologist on call said Gemzar can cause a fever on any cycle and my labs where great just a few hours before so he thought it was a side effect from Gemzar. He had me take Tylenol, the temp went down and I felt so much better. After I went back to bed I got a constricting/moving feeling all the way across the whole area right underneath the ribs. It was hard to breath and sort of scared me as I have not had pain with this before. Then came vomiting and diarrhea. Not fun.
Today I had my first neulasta shot which wasn’t bad at all. The hospital were I had it gives it in the upper arm (I was expecting the stomach). The needle was very small. I think the shot would be ok either in the stomach or the arm. Did all that dreading for nothing.
My oncologist called me this morning to see how I was doing. He did not know what the constricting incident was about and did remind me that when dealing with a temperature things can change really fast. I told him I thought the constricting ordeal was the tumor dying. He said he would go with that. He’s the kind of oncologist I like
Kathy
Kathy
Kris, I always look for your posts. Thank you for keeping us up to date. Regardless of what the doctors are saying right now, how do you feel right now?
Love and prayers,
KathyWHB went up on Wed so Chemo was scheduled for Thursday with a 20% reduction in both Gemzar and Cisplatin. All is going fine so far. I’m having a steroid “up” day today, Friday. More energy than usual
The plan is to have chemo next Thursday and then a Neulasta shot locally on Friday. This is to be given 24 hours after chemo.BigSister, I so enjoyed reading Jessie’s blog. Hope she can figure out her new cell phone easily. I always have trouble with that
It’s always heartwarming to see/hear/read about families who are close. I’m fortunate that way, too.White blood count is back up and chemo is scheduled for tomorrow. The following Thursday I will have chemo again and then have a neulasta shot 24 hrs after chemo. I’ll do that locally, but what a deal. One cancer center will not do it unless I’m treated by a doctor there (my oncologist is at Mayo). Most of the other places are only open until 4 or 4:30 M-F (what if I have chemo on a Fri. and need the shot on Sat?). We do have one hospital that will make special arrangements for the shot to be given anytime but the order has to be from a local doctor. I don’t understand why they won’t take an order from my Mayo doctor. So, I’m trying to get a hold of my local doctor so my Mayo doctor can send him the order and he can make one up for the hospital.
Good news is my insurance will pay for this. I think it’s around $3500 per shot! My insurance co told me I could order it myself with a prescription from two different specialty pharmacies, but if I did that there would be a 25% copay. If I go to a place where they have it on hand, there is no copay.
Kathy
