lynne
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Whirlgigs – I’mso sorry to hear that your mother-in-law has gone downhill so fast. My heart goes out to you and your family.
Lynne
Sarah – I’m glad you found this site, as there is so much good information – as you note! I can’t even imagine the feeling of not knowing the cause of the cancer, since having cancer alone is out of control enough.
I have gallbladder cancer, diagnosed through surgery to remove a blocked bile duct last May. They took out my gallbladder because it was a “mess,” but left in the cancerous bile duct (where the cancer had spread from my gallbladder). After surgery – and I did not have as much pain as your husband afterwards – I spent a few months recovering, and when I went in for scans in July – Sept – Nov. they were clean and there was no sign of spread. In January, I had a recurrence where my gallbladder used to be, and began chemo. I have a scan this coming Monday to see if the chemo has killed those cancer cells and reduced the tumor.
I share this because I didn’t realize last summer that a significant minority of GBC patients can have a slow progression of the disease. While I felt good and had no sign of spread, I was fine not to begin treatment.
My best to you and your husband as he continues his recovery and you both negotiate the confusion and different-for-everyone path of this disease.
Peter –
I just started my second round of oxaliplatin and Xeloda. I hadn’t thought about the sleeplessness on the first night after my infusion, but I generally fall asleep quickly, and then wake up around 2:00 and have trouble falling back to a sound sleep. I take a 25 mg. benadryl at night for my allergies, anyway, but I haven’t taken any sleeping pills. I’ve also had a compazine before bedtime on the night of the infusion, and that makes me sleepy, but I’m not sure I get good sleep with it.By the second week of the Xeloda, my sleep patterns seem pretty normal, except that I get tired and sleepy earlier than I did before chemo. I also wake up earlier.
Don’t know if this helps, but you’ve helped me remember that there’s a lot to this chemo stuff the doctors and nurses don’t mention unless it becomes an issue that you question them about!
My best to you. I am eager to hear about the mushrooms, and hope that they attack the cancer, also.
I’m late to catching up on posts on this site, and just read your initial post, Seasheller. I was diagnosed with gallbladder cancer in May, 2006. They removed my gallbladder, but left in a cancerous bile duct, and did a Roux-n-Y bypass. Because of an additional cancer spot on my duodenum, they staged me as Stage IV. From May until January, I was asymptomatic, and receiving clean scans, like your husband. My oncologist described my cancer as “pokey;” I guess the medical term is “indolent,” but I was grateful for feeling good and not needing chemo.
In January, a scan revealed a recurrence in the spot where my gallbladder had been, a recurrence that was impinging on my liver, colon, and kidney. So, I began chemo for the first time a little over three weeks ago. I’m tolerating it well, and hope it’s buying me more time. If you want to read more of my story, I have a blog at http://www.dahlborg.blogspot.com called “Life Changing Cancer.”
You’ll read this a lot on this website; this disease is different for everyone. The doctors talk averages, but the numbers of us with CC are too small for the statistics to be significant. Enjoy this time you are having, and hope for the best. I’ve been hearing lots more stories recently of folks making it to 2 years and beyond.
Good luck to you and your husband. This is not an easy disease to face.
Jeff – I have had a much easier ride with my first infusion of Oxaliplatin, and oral doses of Xeloda – finish Xeloda this Friday, and I have my next infusion two days after Valentine’s Day! (But I get to see my doctor on VD; you are right – what a way to spend the day!) I have had the cold sensitivity and all, and definite loss of appetite, but nothing compared to what you describe.
One thing that’s helped with my appetite and to offset the mild nausea I’ve felt is a pair of “sea bands” which are knited bands with a hard plastic knob that goes against the inner wrist in the spot where there is an acupressure point for nausea. No drugs involved, and for me, it’s helped me eat more normally. I bought mine in the “nausea drugs” section of my local drugstore, and they are also available online.
I hope that my new tumor is being knocked on its butt with these two drugs! And yours, too!
Jerry, thank you so much for all of that information. It’s very helpful for me, at the beginning of my treatment, to hear about your experiences.
Lynne Dahlborg
Middleboro, MAI will join the chorus of those newly on oxaliplatin and Xeloda; I started yesterday, and I know it’s too soon to tell anything, but I’m feeling good, just tired. Good to hear that sometimes it’s the third day that things hit.
I was diagnosed last May and had 8 months of being mostly without signs of disease, and getting clean scans. Then, this week the CT scan indicated a tumor where my gallbladder was before they removed it. It’s messing with a few organs, so I was eager to start chemo, and hopeful the tumor will respond.
Peter, my heart goes out to you with your symptoms, the confusion and the new roller coaster ride. I hope that what you are experiencing is indeed not due to a recurrence of the cancer. I was especially interested in your story because I live south of Boston, and Dr. Stuart has been my oncologist since my diagnosis of gallbladder cancer 4 months ago. Although my cancer and surgery are different from yours, and I do understand you are now dealing with new compllications, I am heartened by your story and the length of time since diagnosis and surgery for you. For a long time, it seemed that everything I could find (which wasn’t much) was extremely gloomy and sad. I’m doing well, and my cancer does not seem to be progressing at this point, and I’m grateful for that, but this is such a difficult disease. So, thanks for sharing your story.
I remember my shock on receiving my diagnosis, now almost four months ago; initially the doctors thought it was bile duct cancer, because during sugery to relieve a blockage in my bile duct, they could “feel” the cancer. However, pathology results indicated that it originated in my gallbladder (also a rare and aggressive cancer) and, because of the surgery, they couldn’t start treatment right away. Then, when I recovered from the surgery, my tumor markers were down and the CT scan didn’t indicate spread, so they told me to return for more tests in two months.
So, I still haven’t received any chemo, and I continue to feel good. Initially, I was told “2 to 6 months,” which was shocking, and at nearly 4, I’m feeling too good to think they were anywhere near the mark. I say all of this because, in my reading, on this site and a few other disussion boards for these two rare cancers, I have learned that the doctors don’t know everything, especially how the disease will progress for any one person, that each person responds uniquely to treatment, and that while there is information to learn, it must all be taken with a grain of salt. This site and a few others have led me to valuable sources of information and places where others are sharing their stories.
Gather information, and maintain your hope for the future. My best to each of you in your family as you begin this journey.
Just a note about Avastin. I’m seeing an oncologist in Boston, and I haven’t yet begun treatment for gallbladder cancer, but he has proposed a clinical trial out of Dana Farber in Boston involving Avastin, oxaliplatin and gemcitibine. I would think that Dana Farber Cancer Center would have more information; I think the trial is just in NE for bile duct and gallbladder cancer patients.
I am not undergoing chemo yet, but I’m trying to figure out how to strengthen my immune system in the meantime. I try to drink green tea daily – and did before my diagnosis – and I just began drinking Flor-Essence tea, recommended as a detox from a friend whose daughter has a brain tumor. Since I’ve just begun using it, I don’t know that it will make a difference, but since the liver filters so much in our bodies, I figure it’s worth a try.
