middlesister1
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Janet,
They went through the groin. Side effect was very fatigued for 4-6 weeks, but he results for us were miraculous (hope more have same success). First one was in Feb 2014 and second in Nov 2014. Her I indicated that we probably could have done the second treatment sooner (at 6 months).
Take care,
CatherineWhatnow,
My mother had Radioembolization (the Y-90 spheres) twice. The second time they also gave her xeloda before and after the treatment. The treatments worked to kill the tumor so she has been treatment free and feeling fine since Nov. 2014. We go in for periodic scans and to get her port flushed. They have secondary insurance, but the bulk of the cost (if not all) was covered by medicare.
Best wishes,
CatherineDear Sally,
Your sister has been fighting for many years and you have been by her side. I wish both of you much love and comfort, and a miracle too.
Take care,
CatherineHi Bob,
Welcome to the group that no one wants to belong to, but we are glad you found us. Gem/Cis is a standard first line chemo that many start with. For my mother, it reduced the size, and then since she still wasn’t operable, she had Y-90 treatments and is still doing well now 3 years since diagnosis. The chemo bought us time and then we were able to move on to other treatments.If you haven’t yet, I’d suggest reading through the info for those newly diagnosed (link below). If you’ve been reading, we strongly advocate being treated at a center with a multi-disciplinary team which also treats many CC patients. Second opinions have also helped many. If they haven’t done so, genetic testing on the tumor is recommended as well.
http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
I hope you do well with the chemo and have great success.
Take care,
CatherineToday marks 3 years since they aborted Mom’s surgery and said resection wasn’t possible. The whole family was there when the surgeon brought us back to a private room to break the news and give us a very grim prognosis. I am feeling very thankful today and wishing that we continue to see treatments continue to improve so we can see more patients surviving and find a cure for this lousy disease. Best wishes to all.
CatherineMichelle,
Thank you for taking part- I hope it goes well and maybe even succeeds expectations by a bit.
Take care,
CatherineHi Tiah,
I agree that no mets is something to be excited about – Yay!!! I hope the surgeon offer a game plan for treating the tumor. If she does end up on Gem/Cis, there are many here who have been through it and every ones seems to tolerate a bit differently. For Mom, first cycle was the worst. However, after they gave her more fluids and steroids, she did really well. I think her first cycle was also very hard since she was still recovering for the unsuccessful surgery.
I wish you the best,
CatherineDear Alicia,
I am very sorry for the loss of you beloved mother. I hope in time, happy memories can lessen your grief.
Take care of yourself,
CatherineHi-
Thanks for bumping; I thought I had responded to this (so sorry is it didn’t post). My mother had great success with Y-90 and systemic chemo, but she had no other mets. We were treating one inoperable 4×6 cm ICC tumor. What I do not know, is if the cancer has already spread or if there are multiple tumors, if shrinking the primary tumor still increases overall survival/quality of life. I I thought in Europe the Y-90 clinicals were not limited to those without mets, but would appreciate confirmation from others. Also, I have had relatives with other cancers that had bone mets who kept it in check for many years, so I think it would be worthwhile to keep pushing. I’m hoping some of our more knowledgeable members can chime in here
One other thought- there are many who unfortunately do not have positive responses to chemo. Stable is great- shrinking is wonderful. Positive response to chemo gives additional time to start working on Plan B. We were nervous since we went 9 months without treatment between Mom’s first and second Y-90 treatments, but we were lucky in that the ONC said she must not have the “aggressive” form of CC.
Best wishes,
CatherineJoJo,
Welcome to our group. It sounds like your sister has already been through much and I hope the scan results are positive. When my mother had SIRT the first time, although it didn’t shrink a lot in size, much of the tumor became necrotic. Rather than wait for it to advance again, we went through a second SIRT 9 months later in conjunction with xeloda ( IR said he could/should have done second treatment sooner, but it appears we were lucky and still did get good results) . Since Nov. 2014, all that she has is dead tumor tissue (we were also given 12-month prognosis).
Second and even third opinions can be invaluable.
Best wishes and let us know how you make out,
CatherineWelcome to our group. Although you must be over weekend right now, please know that the survival statistics are averages and do nit account for many new treatment options that have only been offered in the past few years. It is very important to find a treatment center which has expertise in thus rare disease. My mother was told 1 year and chemo would give her 3 additional months. We are now over 3 years since diagnosis. Don’t give up hope.
Best wishes,
CatherineDear wife4life,
My sympathies are with you and your family. Your tribute reminds us how every loss to this disease is often a loss to many beyond immediate family too. Although nit long enough, I happy he was able to share a few more milestones.Take care,
Catherine
