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Hi Shellsbells,

What wonderful news your son’s PET scan was clear.

I had the same treatment after surgery, chemo followed by radiation.  In my case, it was because doctors felt I was at a high risk of recurrence.  The chemo is intended to go after stray cancer cells that may have migrated elsewhere in the body.  Radiation was to “sanitize” (their word) the area of the liver where the tumor was removed plus the nearby lymph nodes, namely to get any microscopic cancer cells that might have been left behind.  As you note,  this is a frequent site of recurrence.

This is a lot of treatment, but it is a good protocol.  In my own case, while there is no way to predict the future, it has – for which I am immensely grateful – kept the CCA from recurring now for two-and-a-half years.

Regards, Mary

Kim,

Thanks for this tip and it is great Rich is finally finding relief for his sore hands.

I looked around for medical literature evidence, and found one obscure case study report.  A guy in England under treatment for cancer apparently walked (or limped) into a burn unit with his severe hand-foot syndrome, and it was apparently treated as if a burn including with silver sulfadiazine cream.  The capecitabine was also discontinued.  The report indicated rapid pain relief and subsequently clearing up of the symptoms.  The description I saw was too sketchy to draw any firm conclusions, for example,  the silver sulfadiazine cream was part of multiple things done including bandaging plus the capecitabine was stopped.  Nonetheless, this is a great idea of something to try and I wish I had known about it when I was limping around with this annoying capecitabine side effect.

Regards, Mary

Hi Molly May,

Your questions are very familiar ones.

It brought to mind a conversation I had some time ago with a friend who was also being treated for cancer, a different one from me.

We were discussing ways we felt unwell and she said she was asking herself, “Is this problem due to the chemo?  Or is it caused by the cancer itself?  Or is it something unrelated, like the flu?  Or is just that I am getting old?  How do I know which it is?”

I don’t think there are good answers to this dilemma.  My oncologist is pretty quick to say, “That question is for your general practitioner.”  So when I am having problems or symptoms my oncologist will not own, I go see my GP to seek help.  I don’t know if that would be a helpful suggestion for all cases, but sometimes our aches, pains and other serious discomforts might benefit from a GP’s eye.

I hope you feel better soon.

Regards, Mary

Jeff,

I am so sorry to hear the sad news about your mother-in-law.  You and your family were so supportive throughout her treatments — I know this must have given her great comfort.

Please accept my condolences and prayers for your family.

Take care, regards, Mary

Hi Michael,

Thank you so much for posting your sister Lisa’s story.  She is so lucky to have a doctor-brother in the family tremendously supporting her as she pursues treatment.  I was sorry to learn Lisa is having a tough time recently, and hope as you do that the AG-120 will stop the progression of her cancer.

There are a few patients active on this board on the same trial who I hope will see your posting.  Also, if you haven’t discovered them yet, there are active Facebook cholangiocarcinoma groups out there for patients and caregivers, if you are a Facebook user.

It was interesting – and concerning – to learn that the conditions of the trial do not allow a patient to have radiation treatment, even if it might otherwise be recommended.  That is not an easy situation to face.

Please keep us posted on how Lisa is doing.

Regards, Mary

Shellsbells,

No burning or blistering.  That was not mentioned to me as a possibility by the radiation oncologist, so it must be a very rare side effect.  I had a small bit of irritation in my esophagus plus some reflux.  It was very minor and disappeared as soon as the treatment ended.  No problems eating that I recall.  My most annoying side effect was the hand-foot syndrome from the capecitabine, which was tolerable until the last weeks when it started hurting to walk.  My treatment had no chemo breaks — I took capecitabine every day for 35 days, which did not help for the hand-foot syndrome.  From what you describe, your son will have weekends off from the capecitabine, which should help keep the hand-foot fun at bay.

While each patient has his or her own unique path with this cancer, you and your son should take comfort that he is receiving expert medical care, and has such strong support from his family.   After surgery and chemo, I remember how it was then hard to gear up again psychologically for radiation.  I cannot say that time doing radiation went by fast, but it felt purposeful, since I knew it would lower my risk of the cancer recurring.

Regards, Mary

Lourdes,

It is wonderful to hear from you and thank you for sharing the BBC video.  I took a look and its description of the grief process is both profound and comforting.

Anniversaries can be tough but the memories of our loved ones thankfully stay with us even as time passes.

Take care, regards, Mary

Brigitte,

I am so sorry to hear this news about your daughter.  Both of you have gone through a lot in recent years, with courage and good spirits, and now another bump in the road ahead.  You have every reason to rant, and the discussion board community is here for you.

It is inspiring to hear how you are working through this new worry with a smile and with your chocolate lab beside you.

Best wishes that your daughter’s surgery goes well and that she has an easy recovery.

Take care, regards, Mary