debnorcal

Good points, Beatriz. Many of us “kick into” “an understand and try to fix it” mentality (understandably). This high adrenaline approach cannot be sustained for a long time without deteriorating health. Generally speaking, cc is a long term battle. We would all do well to take care of our emotional and physical health by meditating and incorporating some of the other ideas you suggested. Staying rested and centered serves us better in the long run. I know it’s not for everyone. Personally, though, for me, it is beneficial. Thanks for the reminder.

Debbie

Good for you, Julie! I’m sure it will feel great to be up and around again. Happy adventuring!

Debbie

Dear Pilotnate14,

Wow, I am so sad after reading your post. SM is so young, and this is both the happiest time of your lives as well as the saddest. I so wish you didn’t need to join our group, but am glad you did find us. I’m hoping you find this group to be a great source of information as well as support.

Before offering any advice, I would first like to comment that I am so impressed with your attitude. You’ve quickly gotten your arms around this situation and are choosing to to focus
on enjoying your upcoming wedding, while preparing to fight this monster soon. You sound like a remarkable guy, and this attitude should serve you well as you move along on this journey.

It is good that SM is being treated by one of the medical facilities highly experienced in treating CC. The Dana Farber doc is most likely saying she is unresectable due to spread to several areas, which makes sense to me. However, chemo may not be the only viable treatment option. I would ask the doc about molecular profiling, as there are a number of treatments and trials that are successfully treating many of our members. Certain treatments are proving to be successful against specific tumor expressions, so it’s important to have the test done in hopes of matching up with an effective treatment. We have some members being treated with immunotherapy, Keytruda, and a host of other treatments. Also, despite being with an expert CC center, it would be a good idea to get a second opinion from another expert center, as docs may have differing opinions and experiences.

I hope you and SM have a beautiful wedding/honeymoon, and I wish you all the best in your fight.

Debbie

When my husband was undergoing chemo, I got a cookbook titled “The Cancer-Fighting Kitchen” by Rebecca Katz. It has healthy, good tasting recipes. I liked that I could look up recipes based on the symptoms they were good for. There is a section that has soup and drinks that are nutritious and tolerable when a patient has nausea. You might want to check it out.

Happy vacation to you, Lainy! Enjoy

Dear Fred,

I’m sorry that your son has had such a difficult time even after resection. I understand how heart wrenching it is when your son goes through a serious medical situation like this. When my husband was ill with CC, my mother in law was beside herself with worry.

I don’t have any experience with a cites developing forllowing resection, but I’m hoping others will post on that point soon. Weekends tend to be very slow on this board, but you should hear from others early this week.

In my experience, a year and a half with drains post surgery is a very long time. Usually, there is a drain or two draining fluid from the wound site, and maybe another or two from the bile ducts. Typically, they are all finished within a few months, so I’m not sure why your son continued with a bile drain for so long. Did the surgery involve bile duct reconstruction?

My husband continues to have low platelet count more than 18 months post surgery. That can cause anemia. Perhaps that is also why your son’ has anemia.

I hope that the a cites fluid tests negative and there is another less serious cause of the acites build up. I’m sure you will get some helpful responses to your post soon.

Please let us know how your son progresses. All the best to your family,

Debbie

Hello Brian and Barb and welcome to our knowledgeable and caring family. I’m sorry that you have reason to find us, but so glad you did, as this is a wonderful place for information and support.

This group of diseases (IHCC, HCC, EHCC) is notoriously difficult to definitely diagnose with current medical testing. Also, most medical centers in the U.S. are unfamiliar with CC and not equipped to treat it effectively. Probably the first thing our members will advise is that it is imperative that Barb be evaluated by a center with expertise in this disease. Good for you for reaching out to Mayo – they have quite a bit of experience with this. We have a list of medical centers that are considered experts posted under the “newly diagnosed” section of this forum, should you wish to obtain second opinions.

As a new patient/caregiver, this is typically overwhelming. Often, this journey includes a long ride with many ups and downs. Most of us find the best approach is to disregard statistics you will read about and stay positive, taking each issue step by step and making the best, most informed decision you can at that time.

I wish you all the best. Please post any questions that you may have, as we have so many experienced members that are happy to share experiences and advice.

Debbie