middlesister1
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Darlene-
I’m so happy to hear such promising results! We’re all waiting to hear that surgery is set.
Good luck- we’re all rooting for you!
Catherine
Dear Lee,
Welcome to our board. I did see that Lainy shared some links with you in another thread. My mother had Y90 (radioactive spheres) which has so far worked very well for her. We were fortunate in that she only had the one tumor so they were able to target the treatment in one location. We find out her CT results next week and hoping that she still has no viable tumor.
You mentioned that you’ve already been through many different drugs- has your husband had genomic testing done? And, if you’ve had the chance to read some of the posts here, you’ll see that second opinions are often very valuable. Where is your husband being treated?
Best wishes- we care and we’re here to support you however we can.
Catherine
Kris,
I truly hope all comes back as a false alarms but still so sorry that you have to go through this worry.
I’m sure will weather whatever comes along, but you and Mark have already had your share of Yuck.
Catherine
Dear Dennis,
Welcome to our group and congratulations on the successful surgery and greatl recovery! We are here in times of good and bad, but we do LOVE hearing about people who are doing well and can give hope to others. Thank you for sharing your story and your positive attitude. Yes, lot of highs and lows, and it does make us so more appreciative of the high times. However, one thing that I have also been amazed with from the people on this board, is how much can be appreciated in life even when things aren’t going well.
We are so happy for you and the family. Please continue to keep in touch.
Catherine
Hi Michelle,
At one point in my mothers treatment, her ONC was going to keep her off chemo until she started feeling badly or if a scan showed that her one tumor was starting to grow again or spread. As you have seen with your sister, the GEM/CIS can be tough to stay on for prolonged periods and my mother’s doctor was concerned with doing more harm than good. Others seem to stay on the GEM/CIS until it loses its effectiveness or the side effects are too harsh and they may be put on other types of chemo.
My mother had a surgeon, but once she had the unsuccessful surgery , he was not involved in her care and we meet with an oncologist and interventional oncologists. I think getting the information from Helen and seeking a second would be something you would want to do as soon as possible.
Good luck,
CatherineDear Kevin,
I’m sorry the SIRT didn’t have great results, but it sounds like between the chemo and possible clinical, you have possibilities on how to move forward. I’m sure she appreciates you being there for her.
Best wished to you and mum,
Catherine
Bob,
In case you missed it, Gavin just postedtoday under the clinical trial heading about a clinical trial coming up using Abraxane. Hopefully this means that you MIL is getting a new and promising treatment. Since we probably won’t see the clinical results for a long time, it would be much appreciated if you can keep us informed on how she does with the treatment.
Fingers are crossed that she will have a wonderful response.
Take care,
CatherineMatt/Sherri,
One of the reasons I’m considering going to Hopkins if needed is that there was a doctor at the CCF conference (Dr Laura Wood) who presented on mutations and CC. This makes me believe that Hopkins should be supportive of genetic testing and may step up to fight for individualized treatments if there is a need to deal with insurance.
https://www.youtube.com/channel/UCBa2G8qD-Fdck5kIuXgQi1w
Matt- any chance you know her or her research?
Catherine
Dear Sherri,
Welcome to our group. Yes, there is hope. The statistics can be daunting, but it is not hopeless. My mother was diagnosed in Oct 2013 and since they couldn’t resect, she was told a year. But, she is doing great now after radiation and chemo and we have a trip planned in April for a week at the beach. However, in order to get to this point, we did have to push for an aggressive approach.
It sounds like you’re doing the right thing- second opinions are so valuable and getting to a hospital that is familiar with treating CC. We have some members who have had great responses in clinical trials as well. Genomic testing is also opening up options for targeted treatments and trials. We haven’t had the genetic testing done for my Mom yet, but plan on pursuing it and maybe looking for a second opinion at Hopkins if needed.
Look under the good news section. Although there is still much progress to be made, and we need it sooner rather than later, I believe we are getting close. There are drugs being developed for breast cancer and melanoma which may in the future (hopefullly soon) be used for CC as well. I am not in the medical profession, but for my mother I will ask/look/learn/explore what options are out there in addition to chemo.
If you haven’t done so already, the main homepage has lots of information as well.
Newly diagnosed
:http://cholangiocarcinoma.org/the-disease/newly-diagnosed/I am so sorry your results weren’t good, but there is hope. We are here, we care, and please let us know how you are doing.
Catherine
Dear Serena,
For Mom, adjusting the meds so there was no nausea and also knowing what to expect made it easier. Our worst experience was the first cycle. However, it does build in the body so during the third week off, she still felt some of the effects and once through with the 3 cycles, she said it took about a month till all the the chemo brain was lifting and she was feeling like herself.
Best wishes,
CatherineDear Ruali,
I am deeply sorry for the loss of your mother and brother. Your posts make it so clear how much they were loved and how you made sure to let them know they were loved.
My thoughts and prayers are with you and your family,
Catherine
Dear Jim,
I’m sorry to read that the results not been as hoped. You mention tumor markers elevated, but was there any shrinkage with the chemo and Y90? I only ask because we were told that the CA-19 could rise after the Y90 treatment from dead cancer cells being released into the blood.
Unfortunately, we have had no experience with the Afinitor, but I understand your questioning of the side-effects. Quality of life is always an important consideration. I also agree with Marion that a second opinion might be worthwhile.
Take care,
CatherineLorraine,
Fingers are crossed on the other side of the Pond for you and Donnie, I hope for encouraging results.
Catherine
Dear Fred,
When we thought Mom would have surgery, we were very new to this disease and all we knew was that having surgery was a good thing. So, our basic questions at that time were focused on just risk, recovery and how long it would take.
The ONC did tell Mom that they might close her back up depending on how it looked when they got in (which is what happened) .
I hope everything goes well tomorrow. Please let us know how you make out.
Catherine
