middlesister1
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Hi,
Last night out he way out the door, I tried to put a quick post, but so sorry it looks like it didn’t go through. I know it will be hard to do, but please don’t let those thoughts ruin your Thanksgiving this year while waiting for the scan (I know- easy for me to say – I don’t listen to my own advice). We’re about to celebrate Mom’s 3rd Thanksgiving since diagnosis. We were also so sure the doctors were correct that in April of 2014, all her siblings traveled to Florida for what would be her last get together.
I know it doesn’t appear good- I hope your doctors are like my Mom’s who say we’ll roll the sleeves up when needed (since you say you’re ready to fight- if not that’s ok too). I hope they find with further testing a genetic marker to act on. There are two clinical trials starting (I’ll ask Marion to correct if I’m wrong) that will allow CC patients easier access to targeted therapies.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13860
Ask your doctors- it can’t hurt. I would go into Mom’s oncologist with some of Gavin’s postings to back me up- I had to push with her ONC to get the second SIRT treatment which helped to get us where we are today.You are forefront in my thoughts and prayers- I’m keeping my fingers crossed that somehow you’ll get to be the next Melinda story.
Catherine
Sherry,
So happy you found us, Best wishes that between the surgery and the chemo, you will soon be posting updates under the Good News section.
Take care of yourself as well, and let us know all is going,
Catherine
And I should have commented on Melinda’s post. She is not only photogenic, but setting the stage for how dramatically the statistics will change in the future. Hopefully for all concerned we’ll see that shift ASAP.
Gavin. Thanks for spreading the word and thank you Sarah. I have to admit I typically come right to the discussion board and don’t check homepage often enough. And, happily today my family has another reason to support the position that we should not listen to the statistics. Great stuff!
Mom had quarterly CT scan yesterday and appointment is tomorrow with her ONC. We had thought we’d be waiting for results, but my hero (her IR doc) sent me text below. In 2013, we thought it would be our last holidays with mom. I’m not sure why we are so fortunate, but I wish it can give others hope.
Catherine
I must say – she continues to amaze! The scan looks great!!
Happy holidays!
F
Dear Nancy,
I saw your post earlier but wanted to give those members who have also had similar experiences chime in first. I’m sorry you didn’t find us right away, but now you are one of us. I was amazed when I found this group to see that most of the board members and people who do so much more in addition to this discussion group are almost exclusively people who have lost a loved one to CC. They are spreading the word and helping to foster more research and funding for CC.I am sorry for your grief. One of the posts that sticks with me is that grief is the price we pay for deep love.
Take care of yourself,
CatherineNic,
Wishing your mum good results moving forward. Please keep us updated on how she (and you) are doing.
Best wishes,
CatherineDear Michelle,
I am so sorry to read this. You have it correct that the love will never die,.My deepest condolences are with you. I wish that we could do more than just be with you in spirit at this time, but please know that thoughts, prayers, love and hugs are directed to you over the Pond.
We will continue to be here for you.
Catherine
Marion revived this topic, but thought it was fitting to bump it again to the top. Under rememberance section today, people are recognizing that today would have been Kris’s 41st birthday. Kris (devoncat) started this discussion, and it is a tribute/example of the special people the world has lost to this horrible disease. For those who haven’t explored in depth, you can click on a member name and pull up all their previous posts. I did this a while back for devoncat, and although she had already passed, I was touched by her life and spirit. I know I am not the only one who she has continued to touch.
If possible Marion, can we “sticky” this topic?
xoxo
CatherineAlthough I also joined this board after Kris passed, as many have done, I read many of the earlier posts and was able to see how while alive Kris , she contributed so much to all here. Her contributions and beautiful spirit touched others long after she was gone and will continue to do so. If anyone needs inspiration, I would encourage them to read some their postings and understand why Kris was so loved.
This appears like it can be a tremendous opportunity for many- and it shows the importance of getting the genetic testing. Thanks Marion!
Hi Sandie,
For us, the chemo gave us time to regroup and look at other options. The first cycle was harsh,but we had her meds adjusted and it got more tolerable as we went along. I agree with feeling overwhelmed. Even after many visits, I still forget to ask things I planned on and even worse with writing down or remembering the answers. We always have 3 of us there and we still have to confer with each other after leaving on what we heard.
Mom’s first ONC was also against genetic testing saying that it was not worthwhile. However, once she had Mom as a patient longer, it seemed like she had started doing more research about CC and came around to that we should have it completed.
Good luck Wednesday,
CatherineHi Julie,
When the video arrives,please upload to youtube and post the link.
So sorry you’re going through this again. However, you do make it sound so simple- just cut away a little corner and all gone. I hope it goes very smoothly and you’re back to doing the important stuff like spending time with the grand kids.
Take care,
CatherineGary,
Thank you for the info. I found it informative that high doses of black tea could raise the CA 19-9 so much. My thought was then that small amounts could be contributing to small increases (Mom’s CA 19-9 is always in the 40s and she drinks her tea everyday).
We don’t eat rice often,but would also be interested in hearing from others.
Best wishes.
Catherine.Sherry,
Welcome to our group. I’m sorry your family is challenged with CC, but surgery and clean margins are so very great to hear. If you use the search function, you can see if there’s anything on the chemo that could help you out. We almost discontinued Mom’s chemo at one point, but they were able to up fluids and adjust meds. We went to local emergency room and bag of IV turned her around for the better. Chemo can be harsh and he’s probably not 100% recovered from surgery. Just make sure he stays hydrated and contact doctor if something needs to be tweaked.
Best Wishes,
Catherine
