No, I hadn't, but I think it's still smart to get up out of my desk chair and move around during the day. Thanks for the reminder to do that. I tend to sit in front of my computer for far too long.
Re: Obesity and the risk of cholangiocarcinoma: a meta-analysis (8 replies, posted in New Developments)
Not saying that there is not a connection, but wanted to add this to the mix. My husband was thin and healthy all his life until CC. A study will be interesting. Wonder what the percentage of thin versus obese that get cancer is.
Well, I'm one. First health issue I've ever had. Honestly, I would have picked a different one if is had a choice.
Awwww, that's too bad she's not. My radiation oncologist was super huggable. And incredibly nice. And funny. I didn't see him a lot, but I really liked him.
I posted this on Facebook, but I'm disappointed I didn't get to ring a bell! I'll take getting hugs from everyone from the radiation tech to Dr. Cheek.
Other than my dad having a very early stage colon cancer that required surgery and no chemo or radiation (he was in his early 70's and will turn 90 this year), I have no family history of any type of cancer, although I had stage zero melanoma nearly 7 years ago. Drs feel it is completely unrelated and it was caught early, so I had it cut off and that was it.
The women in my family have all lived well into their 90's. My 89 year old aunt still mows her yard and plays a little golf and you might think my 84 year old mom was in her 60's by the way she does stuff.
So, my diagnosis came as quite a surprise. Never smoked (never lived with smokers either), light social drinker (wine with dinner), work in an office, so not really exposed to chemicals or other bad stuff (lawyer), no other health issues, healthy eater, lots of exercise. In fact, I'd just done a 100k bike ride outside Nashville on the hilly Natchez trace parkway the week before I was diagnosed. Needless to say, it came as a shock. I'd had a routine colonoscopy 6 months earlier, with nothing noted.
I hate there is no diagnostic testing now. If I knew then what I know now, I would ask at my annual physical for them to look very carefully at my liver numbers. I'd probably also ask for an endoscopy with that colonoscopy.
Great news on your scans. Was that just from chemo or did you have radiation too?
I've got about a month until my next scans. They want inflammation to go down post 30-days of IMRT.
We've had a chilly snap this week (I realize my friends who live further north will be laughing at what I call chilly), but before long it will be hot. Pleasant spring temps don't last long here, but I plan to take advantage.
No, no worries. I was, pre-diagnosis, one of those people who avoided sugar as much as possible. I shopped the outer edges of the grocery, I didn't buy things that came in a box (and if I did, I read labels very carefully). I really did (and do) believe in Michael Pollan's 'food rules'.
I do eat nuts, etc. a friend (a really good friend) gave me a vitamix blender for great smoothies. I've switched to a full fat vanilla yogurt instead of the much lower fat Greek I did eat. Yes, it probably has more sugar, but not crazy amounts.
Yesterday, when I finished radiation, I splurged and got a donut. I honestly don't remember the last time I had one. Years. I couldn't eat it (a plain one), it was so sickeningly sweet. How do people eat them with all the extra goop on them?
I have talked to a dietitian throughout. My radiation oncologist didn't care what I ate, just that I was getting calories, but I did. I will say I've eaten more red meat (which I hardly ever ate) because the smell of fish (which we did eat a lot of) really got to me and sometimes I had trouble handling the taste of roasted chicken. I guess my splurge was giving myself permission to eat burgers more often. I could usually get down half a plain burger from one or two places near us or part of a margarita pizza.
Thanks for weighing in, Carl.
PS, i went back and read some of your earlier posts. Your wife and I are the same age. She was diagnosed 6 months before me. I had many of the same conversations with my oncologist re gem/cis versus the folfurinox (and he said much the same thing about toxicity and promise in pancreatic cancers). We also opted to start with gem/cis and did well enough with it to move to radiation.
Duke, my husband's been trying to fatten me up with dove bars. Ironically, I'm not a big chocolate cake or other sweets eater (or ice cream). If I could add 10 lbs, I'd be satisfied and I could quit cinching up my belt on all my pants so tight! I realize that's a minor problem. Yes, I agree with you re the exercise. I've continued to walk my dog throughout (although in truth, not on days I deemed 'too cold' - left those for husband to handle). The beauty of living with a border collie is that you WILL walk or you WILL regret it.
I've gotten back on my bike. Before I was diagnosed, I was downright athletic looking - cyclist legs. I want them back. I've signed up to ride around Lake Tahoe in September, so I need to get back to longer rides and weekly spin class. I think finishing all this treatment, I'll have more energy to do that. Now, if they will only say my bile drain tubes can come out when I do my scans. That's what I'm hoping for and I have to say, my oncologist has been too.
I'm curious about all this too. If there is a blood test to do this, great, as they have been unable to get a tissue sample from my tumor.
Judith, I'm so sorry for your loss. I guess I missed this thread entirely, as I spent most of February in the hospital. I hope that this forum will continue to give you support. The best advice I ever got (when my little brother passed away unexpectedly 3 years ago) was that grief is a process, not an event. It is true.
Well, this morning was my 30th radiation treatment. I got hugs from my radiation tech, the nurse, the nurse practitioner, and the radiation oncologist when I was done. I finished my planned chemo last week, getting the 5FU pump off on Friday. I also finished the iv antibiotics, so they took my picc line out Friday. I'm on an oral antibiotic to keep from getting another bile drain tube infection for the next month.
So, now I wait. That's the part I have the hardest time with. I'll meet with my oncologist next Wednesday. I assume he'll do lab work and then he'll schedule my scans, looking at about a month or so from today to do them.
Anyway, I seem to be hanging in there okay. My goal for now is to gain back a little weight. I was down to 114 this morning. I can't believe The words "I need to gain a few pounds" would ever come out of my mouth, but it's true. I am hoping I will have more appetite and foods will go back to tasting normal. That's been my biggest issue.
Ah, Kris, so sorry. He is having a rough time. I went through that in February and I was septic, with a super low BP too, so I know how miserable it is.
I'm glad you are almost done. Me too. I finished my chemo yesterday and finish my radiation (making up 2 days I missed) on Tuesday, just in time to celebrate our anniversary.
I think I just sent you a friend request. So glad the wedding went well. I had been thinking it was next month. Can't wait to see some pictures.
Re: IIIntrahepatic post surgery...My story and welcome to it (18 replies, posted in Introductions!)
I think your news is fabulous! And, I hope you will find the Gemara/cisplatin isnt so bad (I was fortunate to not have a lot of side effects on it). You have plenty of reasons to celebrate that birthday!
That weekend is also my anniversary, so I'll join you in celebrating a milestone (mine is finishing chemo/radiation, hoping to have shrunk my tumor enough for surgery or killed it dead).
Hopefully this is helpful:
I found several other interesting links just typing in raising white blood cells in google.
I did a search for how to post a picture here and came up short. When I update caringbridge tonight I'll add one there. Of course, it's also on Facebook. Happy to have friends from here on my Facebook page. I am Lisa S t e g a l l (no spaces) on Facebook.
If I knew how to post a picture here, I have one of me on my bike for the first time since diagnosis.
I'm glad your siblings are going to come in. I hope they will be supportive. This shouldn't fall on just your shoulders.
Quick update on me.
5 more days of IMRT to go. Yesterday was my last chemo day with cisplatin. I had to get a 2d dose of iron because I'm anemic (got a bag of iron the week before, too) and this is my last week of wearing the 5FU pump all week. It will come off Friday, as will the picc line they put in my other arm for the IV antibiotics I've been taking since I spent most of February in the hospital with infections and dehydration. I think they will keep me on an oral one while they are deciding if they can remove my bile drain tubes, because I've had lots of problems with them.
My oncologist said that since I only have 2 days of radiation next week, I don't need the chemo then. They are sorta like snow days, tacked on at the end. I would have finished radiation this Friday, but I ran a fever one day and was told not to come and the other day, the machine was down, so I'm making them up next week for the full 30 days.
I will go Monday and get a 3d iron infusion. They said anemia happens with cisplatin particularly. No wonder I feel draggy and tired.
Still not great appetite. Wondering if that ever returns. I hover between 117-119. I think everyone would like to see a number closer to 130.
And then .... I wait.
I'll see my oncologist the next week (I'm assuming he'll do labs then), and we'll schedule my scans. I know they want at least 4 weeks to let the radiation finish and to let the inflammation die down to get as good a picture as they can. My pre-radiation scans were really hard to read.
And then ... I don't know what comes next. The scans will be key.
I am trying to get some normal life back. I rode my bike about 6 miles Saturday and it was cold and windy. I'm signing up for a 23 mile charity ride this weekend. Last year I did the 30 and 50 mile routes of these respective rides without even thinking about it, to give you an idea of how my "then" versus "now" is.
Still, my oncologist was pretty amazed I did the 6 mile ride at this point in treatment. He said I looked fantastic (and I don't mean looks - heck, he's probably never seen me with a lick of makeup on).
So, I have no idea what the future holds, but I'm trying to hold on to some normal life (whatever that is anymore). I still feel that 2d shoe hanging over my head, ready to drop at any minute.
What is the balance when you are done with active treatment, but still aren't a candidate for resection (and trust me, if they say no here, I will be getting 2d, 3d, 4th opinions).
Just to be clear, a POA is different than a durable power of attorney for health care, although a regular POA is important too. The hospital probably has the DPOA form. It's really something we should all have. When I was diagnosed, I took care of that. Should have years before, but hey, no one ever does it until they are in crisis.
I don't know other hospitals in Houston if MDA isn't an option ( although, ironically, I was born at hermann hospital).
I can tell you Baylor hospital in Dallas (main branch) sees a fair amount of cc patients. I am being treated there. I feel I'm getting top quality care. My oncologist is dr A. David McCollum.
Well, as a relative newcomer and a patient, I have read so many of your informative and caring posts. You've given me a lot of hope that I have more time than I thought on first diagnosis and how to address all my options with my doctors. So, thank you. But having said that about hope, I'm a realist and want to be prepared for whatever, so writing about anything is okay.
I really just ditto what everyone else has said ^ regarding taking care of yourself.
Whew. I'm so sorry that you are dealing with this. I don't know that there is any good way to bring it up, but hopefully, your dad will want to have this conversation. You say that he is leaning on you for decisions. Are you his next of kin? Do you have a durable power of attorney for health care from him appointing you to make decisions? It's very important to have that if your dad is lucid to sign it. Hopefully that will make decision making easier.
Hospice can also help you keep him comfortable.
Thank you again.....it means so much to have a sounding board. When I tried to talk with one of my best friends today, she told me to get off the internet. Sigh.
My friends and my husband tell me that all the time! They don't get it.