middlesister1
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Dear Meriza,
I went back and read your introduction and was so very touched by the love that came through and the humor your father showed.
My heartfelt condolences are with you and your brother,
CatherineLynn,
Although different chemo, my father is still exhausted and sleeping many hours a day 4 weeks since his chemo finished. The nurse indicated that he could still be on the down slope since the chemo builds up with each cycle, so it very well could be the chemo still taking its toll.
I hope he starts to feel much better soon and we look forward to hearing about Plan B.
Take care,
CatehrineTiah,
Best wishes to you and Mum- please pass along Happy birthday wishes from us all.
I’m looking forward to hearing positive results. With my Mom, worst side effect from the SIRT was fatigue which did take weeks to go away, but the results were so worth it.
Best wishes,
CatherineDear Amy,
I’m so sorry that you lost your husband to this disease. I’m sure you’re finding out that it is very rare, and although they are making progress in treatment, there are still too many who succumb rapidly. My thoughts are with you and your loved ones.
Take acre of yourself,
CatherineKernos,
I’m hoping that you are one of those who get the amazing results that Keytruda appears to be giving to some-
Best wishes are with you,
Catherine
Dear Dave,
Welcome yo our group. I’m hoping those who are more knowledgeable on transplant requirements will chime in. I’m sorry you had to find out what cholangiocarcinoma is and I hope in the near future they have a treatment plan which quickly improves how you feel. Although I am not a physician, from reading posts and experience with my mother, I’m surprised to hear only a 5-10% chance of chemo shrinking the tumors. Although not as high as we would like, I would have thought it was higher.
However, one thing I have learned since my Mom was diagnosed in 2013 is that CC is a disease where you do not want to focus on statistics. In addition to being alarming, they are not based on how patients are today as we are seeing more treatment options coming available. We were given the common “chemo will give you 3 months more”. However, the chemo gave us time to look into other options. At 2 1/2 years since diagnosis, my mother is fortunate to be feeling fine and treatment free since Nov 2014 (she had Y-90 radiation treatment).
You mention”prominent institution”- one thing all seem to agree on is finding a hospital which treats a high number of CC patients.
Best wishes to you and your wife,
CatherinePurdy,
Welcome to our group. My mother had a very difficult first round of the gem/cis; we almost stopped treatment. However, once they added more fluids and steroids to her protocol, she was able to tolerate much better. If your husband continues with the chemo, I hope they can adjust the meds to relive his symptoms.
Best wishes to you and your husband.
CatherineDear Frank,
I am very sorry . This disease is terrible, but especially so when it takes loved ones who are so young. Please know that we are here for you. Although I am very fortunate with how Mom is doing, many of the people here have lost loved ones as well.
I wish you healing and peace in the future.
Take care of yourself,
CatherineJill,
Welcome to out group. If you haven’t already, there is a link below with information that might be useful for those newly diagnosed. It does seem a long time that he has gone without starting the chemo. One thing about chemo, is that you can always stop. We faced the same decision with my mother, and are so happy we tried it. The first cycle was very hard until they adjusted medications and gave more fluids. However, this shrunk her tumor a bit and then she had radiation (Y90). She was diagnosed in October 2013 and is feeling very well now. There is no wrong choice- and we try to tell ourselves not to second guess our decisions.
http://cholangiocarcinoma.org/newly-dx/
Best wishes,
CatherineKris,
So sorry that things are so lousy for you right now. Like Lainy, truly hoping that the next report shows they figured out how to turn it around.
Take care,
CatherineCindy,
Thank you for sharing the good news. I hope you continue to kick it, but also hope they can do something to help with the side effects.
Does anyone on the board have suggestions on what have worked best for the mouth sores?
Take care,
CatherineDear Kay,
I agree with Lainy that it’s amazing how strong we can be when we have to. However, also take care of yourself and know that it’s ok to take a bit of time for yourself to “not be strong” too when needed. I think all patients and caregivers should realize we sometimes need a little pity party (crying and yelling are fine) to recharge so we can continue to be strong.
Take care,
Catherine
