Thanks for sharing!
Re: Cholangiocarcinoma: treatment with sorafenib extended life expectancy (5 replies, posted in Chemotherapy)
I am sorry to hear of the results of the scan. Lots of prayers for success with your new treatment.
Sometimes constipation can be caused by all the pre-meds of the chemo. I found Zofran really made me constipated. I used to take Miralax everyday while on chemo and radiation. It helped.
Take care and enjoy your trip!
Hey Porter, bust of luck with the second opinion. I had 3. University of Pittsburgh, OHSU, and Mayo Rochester.
I did tell my oncologist at OHSU that I was seeking another opinion and they were fine with it. So, just in case you were curious, it's not something you need to hide.
Keep us posted and glad to hear your tumor shrunk!
Re: Does sugar, high body mass cause cholangiocarcinoma? (8 replies, posted in General Discussion)
When I was first diagnosed I was desperate to find similarities between cases. I figure there has to be something, but I have yet to find anything and am not as obsessed with it as I originally was.
I have always been healthy and had a good diet, no smoking, some minor alcohol use. Sure, I enjoy the occasional sweet, but I can't name many people who don't.
I am as skinny as can be. I've always been a runner or exercised in some form.
I had Mono in my early 20s. I have high cholesterol, which has been labeled as hereditary and I was never on medication for it.
I wasn't on any medications at the time of diagnosis except I recently quit taking birth control.
My Grandpa had Prostate Cancer, but there is not a large cancer presence in my family.
I am the only non-smoker in my family and I am the only one who has cancer. I'm thankful they don't have cancer, but I find it very ironic.
Lots of prayers Tiff!!
And no you needn't say more about the drama. We've all experienced some of that.
Can't they do the MRI now if they think it would help determine if it is cancer or not?
I was on neupogen and had bone pain but not fibro issues. I was told Claritin helps. Not sure if it would help you, but maybe ask your onc. I dont see how it would hurt.
Thanks for the update! Sorry to hear about your hip issues. It sounds like a wonderful trip you are planning. Please let us know how it goes.
I am 34 now, diagnosed at 31 and my husband and I have done lots of traveling since I've been diagnosed. It gives us something to plan, something to look forward to but it is also nice because it is not a long term commitment.
Enjoy your trip and best wishes with your treatment!
Lots of prayers for the upcoming PET scan.
Hang in there. It is never fun waiting to have tests done and then waiting for the results.
Keep us posted,
Oh my, I'm so sorry. Please keep us posted with what the plan is.
I agree Lainy. The only issue is I am 34 and there are more issues that come along with pregnancy after 35. So, that is the reason I'd like to do it sooner.
I just had my 2 1/2 yr scan post resection and it was clean.
I already posted those results but said I would post again once I met with my oncologist.
I saw my oncologist yesterday and it was pretty uneventful. I will get an MRI of the liver in 6 months and a tumor marker at 3 months.
We discussed if I can get pregnant. She said she would be ok with that since it is 2 yrs post surgery, but 3 yrs would be better. I have an appointment with high risk OB to get their opinion. But, I'm still not sure. It seems so risky.
Take care everyone!
Great news!! Congratulations!
sorry, the pain was actually AFTER chemo, not during.
I would get pain around my liver during chemo. It sent me to the ER once.
I'm so sorry to hear about Paula but thankful she is no longer suffering. My prayers are with your family.
Hello everyone. I just had my 2 1/2 year post resection scan and it shows "No evidence of disease. " Those are great words.
I had my resection 5/11 for intrahepatic CC. Followed by 3 cycles gem/cis, then 6 wks radiation with Xeloda, then 3 more cycles gem/cis.
I remember when I went to Mayo, the oncologist I saw said 95% recur within 2-2.5 yrs post resection. So, I guess I should be optimistic, but it is still hard.
I am very thankful for the good results. CT scans are so stressful. I see my oncologist on Wednesday, so I'll let you know what the plan is. I think I am going to switch to MRI's. I get CT's because I get my chest, abdomen and pelvis scanned. I think I am just going to get liver MRI's at this point. I've had so much radiation, it always worries me.
Well, it is a beautiful fall day here in Portland, so I'm going to go enjoy it.
Take care everyone!
I eat a lot of smoothies and they are a good way to get calories and protein.
Does anyone have access to the full article?
Re: Texas Medical Center New's Article about my transplant (11 replies, posted in General Discussion)
Great article, thanks for sharing!
I had 6 cyles of gem cis. 3 cycles then radiation then 3 more cycles. It dropped my white and red cells. I needed to be on neupogen and received a blood transfusion. I lost some hair but not all.
I did not have any nausea or GI side effects. Hope this helps and best of luck with your treatment.
Can they do an external bile bag?
I must have missed that your daughter had Hodgkin's. I'm very sorry to hear that but wishing you both the best. Glad to hear she is done with treatment.
And, yes, the Vitamix is a pricey investment, but man do I love it.
Thanks for the never ending support.