middlesister1
Forum Replies Created
-
Posts
-
Dear Lorna,
Welcome and so many thanks for sharing your dad’s story. It will benefit so many others . Best wishes for continued health,
CatherineHi,
I’ve been on the board for almost 3 years. And, it was overwhelming at first. This is such a rare disease and even the doctors sometimes don’t have enough info. I love communicating with people, but so far have not joined the CC FB page. I guess from “normal life” I’m used to FB , but for what I needed , being able to search for treatments and stories that gave me a way forward and taught me the types of questions to ask made all the difference. Getting on the FB list is on my to do list, but life and free time have gotten in the way so far. Yes, I did spend HOURS researching here. However, I believe my mother is alive today because of this board. I’d have to go back through notes to see which exact post it was, but one of Gavin’s posts discussed a study where after one treatment, they went after the tumor again to kill it (Obviously I’m not a medical professional). I brought it to Mom’s ONC and IR and said that although we were stable, shouldn’t we be trying to kill it while we can? Good news is that it’s now been a couple of years, so I would have to look up the study I referenced. I know the CC.org folks are doing everything in their power to make this board easier to use and less time intensive. If the FB members can steer people to share their stories and knowledge of what they’ve learned here as well so all can benefit, it would be appreciated. It is a rare disease, but I think it we communicated more, it could save lives.
love and hugs,
CatherineHi Lena,
Welcome to our group. I’m very sorry to hear your daughter has been diagnosed with this disease. Although I am not a doctor, I’m not sure if I’ve ever seen on the board anyone having a diagnosis from a lung met.
It is a rare disease and it can be overwhelming trying to learn as much as you can. If you haven’t yet,
you may want to start on the home page with the section for those newly diagnosed.http://cholangiocarcinoma.org/newly-dx/
We have seen some spectacular results in some cholangiocarcinoma patients with the ID-1 alteration, but I’m not sure if it is required. There are many clinical treatments ongoing so hopefully we will have better info in the future. Could you try to copy your post under the introduction section ( http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=18 ) Or, if you want, I’d be happy to do it for you. I think more members might see it there and be able to share more information with you.
It is highly recommended to get a second opinion from a cancer center that treats CC on a regular basis. I know here in the US some member send their records to have them reviewed rather than traveling- I hope there may be others in the EU that can give suggestions to help you out.
Best wishes,
CatherineAnne,
Thank you for sharing your story with us. I’m hoping the third time is the charm and you can live life without annual surgeries. I am surprised that Hopkins was not able to make the fix that Dr. Carp could. I imagine an open would for so long had to be difficult and worrisome as well.
I hope you tolerate the chemo well, Below is a link for a discussion with a few lessons learned from those who have been through chemo.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069
Best wishes,
CatherineDear Lisa,
Welcome to our group. Unlike some who find us when newly diagnosed, you are already a veteran. As a daughter of a patient, I know that although we also are blessed with a very close and loving family, Mom has been more scared than she would ever let on so she could “protect” us. The only thing I can offer, is that I’m sure your strong network wants to support you emotionally as much as possible. If you’re not already leaning on them enough, do so. My Dad always says that families are there to help us get through the big stuff. However, I hope that through this board you will be able to connect with other patients who can understand better than us family members and loved ones what you are going through.
I’m glad you found us and I know that there are others from Australia on the board who will chime in and offer support.
Take care,
CatherineHi Bonnie,
So sorry you had a reason to find us, but glad you did (and I love the glasses!!!) My mother’s tumor hasn’t required stenting, so unfortunately I will have to hope others can chime in with specific info. However, it is very good to hear that you are pushing to get a consult with MD Anderson. Since this cancer is so rare, it really can make a difference in survival based on where you are treated. And, please know that although not enough, there are many here who were also given the one year prognosis and are still going strong after a year (my Mom is coming up on 3 years). Regardless if things have sped up or not, I would push the insurance company. One thing I have seen is that sometimes the caregivers and patients have to push to make things happen.
Best wishes to you and your husband that they can get over this hurdle and get a game plan in place soon. If you haven’t been to the main CC homepage, link below may have some info.
Take care,
Catherine
http://cholangiocarcinoma.org/newly-dx/I think of myself as pretty tech savvy but it took me a minute to realize I could click on each photo and read the names and stories. Beautiful.
Thank you.What a wonderful update!! And, don’t worry about closing your eyes- although I prefer to see Mom’s numbers come down, there were some that the doctor said of course would still be elevated since you’re putting chemo in the body. I forget which “A” marker it is, but expectation is that Mom’s will always be slightly elevated from here on out. However, as long as doctors keep saying there is no disease at this time and liver is functioning fine, a little elevation is ok with us.
Best of Luck!
Catherine
Hi Laura,
I’m another daughter of a CC patient. I’m glad you found us. When Mom was diagnosed almost 3 years ago, reading the current and older posts on this board helped me tremendously. If was so unknown and we were in such shock that it took months to feel like we knew where to start.
I hope your Mom gets over the complications and I am so sorry she had to go through them. I hope moving forward this are easier on her (and you).
best wishes,
CatherineAnne,
My mother has had wonderful results with SIRT (Y-90), but I did look at RFA during research. Below is the link my post. I’m still hoping someone who has had RFA will chime in. Also, if not already done, you can use the search function at the top of the page.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=94133#p94133
Best Wishes,
CatherineJulie-
We may have forgotten to point you to the easiest starting point- the tab for newly diagnosed.
http://cholangiocarcinoma.org/newly-dx/
It has a link to the major cancer centers. And, once I found something I was interested in, I would come back to the discussion board and use the search function.
Good luck,
CatherineDear Sally,
My thoughts are with you and your family. I look back on the past few years and realize that life changes not only for the patients, but for all their loved ones. My mother is now the caregiver to Dad, and she says it was easier being the patient than seeing what it’s doing to Dad (lung cancer with brain mets). I’m sure your support has and will continue to help your sister with her fight.
Take care,
CatherineDear Julie,
Welcome to our group. I agree with getting Dad to see a center which is familiar with CC. Gem/Cis is the most common first-line treatment for inoperable CC (My Mom did Gem/Cis and then Y-90), but it is good for you to get the opinions now so you can have a plan. In just the past few years, there have been many other options added on how to treat, but not all hospitals will be using them.
Best wishes,
CatherineDear Julie,
Don’t you already have enough excitement in your life? It’s ok to have a few days with nothing going on.
Best wishes for calmer times ahead,
Catherine
