Has anyone heard/read/researched anything about the chaga mushroom which purportedly has strong anti-cancer medicinal properties and can be used along with traditional cancer therapies (surgery, chemo & radiation)?  When I receive helpful tips from friends or relatives, I want to know what the CC community knows about it already.



(30 replies, posted in Grief Management)

As a mother, I am saddened for you, knowing that at some point I will be gone also, leaving behind my own daughter and her new son to grieve as you do now. In the midst of your pain remember her love for you and be grateful for having had her as your mother for all these years.

In Strength & Peace

A tremendous "thank you" to you for outlining your CC case so well and including nutrition, alternative medicine & maintenance chemo dose.  Also for your outlook as to CC being a chronic disease and learning how to live more fully on a daily basis.  I have been living from scan to scan with anxiety and then relief when it looks good, or stable.

Blessings & peace to you,

I had the Y90 procedure (snake the catheter up through the groin incision) before I began chemo.  The radiologist & oncologist recommended that I wait three weeks after that to begin the chemo.  It went well for me, not alot of side effects except pain in the abdomen as the tumor started to die.


What is SBRT?  And when/why/how is it used?  Before or after chemo?


Thank you to everyone who responded to my post.  My oncologist said the kidney pain is probably the cistplatin, although the Gemzar also can be hard on them.

My diet has changed to lighter foods, chicken & fish only, eggs and salads, steamed vegetables.  I'm also big on nutritional shakes with whey protein, wheat grass & chopped kale, fresh fruit & berries, or frozen when I can't find enough fresh I like.  It seems to help with my blood work a bit and it's easier to swallow and eat than a meal.  I also have a fondness for cheese and crackers and indulge it!

If my CT & MRI at the end of May show stability with the smaller tumors, my doctor is talking about me taking a break from chemo to give my body a rest.  What does everyone have to say about this suggestion?

Thanks to all of you out there.  Sometimes when I feel so alone with this arbitrary disease I just think of you all and those who have gone on before and it makes me feel better.


Back in August, 2012 I was diagnosed.  In Sept. I had the Y90 for the large tumor on the left side of my liver.  Then began chemo at the end of Sept. with gem/cist on the 21 day cycle.  The large tumor in the liver looks necrotic (sp?) and the mets to my nodes close by have remained stable.  The problem I am having is that by platelets keeping dropping really low - like 7 the last time - and the white and red cell counts are also low, but still acceptable.

My oncologist has suggested that I take a week extra off the chemo and has also dropped the amount given from the 100% of the "formula" down to 75%, and now down to 66%.  We'll see how my blood work responds to that.  I am scheduled for another round of scans at the end of May and will be able to tell if the regime is still successful.

Anyone have suggestions on food that's easy to eat and gives me back some appetite?  Also, anyone having problems with kidney pain?


(46 replies, posted in Introductions!)

Lainy and Marion,
Thank you for your kind responses.  I had the radiological embolization at Northwestern Memorial Hospital in Chicago.  My chemo is at Siteman Cancer Center, Gem/cisplatin. I'm scheduled to do another round (Day 1, 8, & 21) and then have another MRI to see how the tumors look and what should be done next.
Although I keep trying to do the fluids (use to drink water all day by the bottle), my stomach objects.  Can only eat small amounts at a time, so I try to make it all healthy, continue to take my daily vitamins as I have done for the past 30 years, and make foods that I love in order to rouse my appetite.
We did get a second opinion at Northwestern Mem Hospital and they coordinated efforts with Siteman so that I had the embolization before the chemo.  Also, had an endoscopic biopsy of the lymph node nearest the liver the day before chemo began.  The samples were sent to Caris Lab in Texas for genetic profiling for possible nuclear medicine.
Does the chemo effect the heart?  My heart palpatations go on all the time.  Magnesium once a day use to take care of it for me.
Slightly depressed,

This is an amazing amount of information and I am grateful to have it at my fingertips.  It is also overwhelming, trying to absorb and digest so much, so fast as I am relatively new to the diagnosis and treatment.  Thank you to everyone who participates in these discussions.  We're learning alot all the time and it helps to know that we're not out there so alone.


(46 replies, posted in Introductions!)

Hello!  I was diagnosed with cholangiocarcinoma at the end of August.  First I had a radiologic embolization of the largest tumor, which is in the left lobe of my liver.  September 21st I began chemo, cisplatin & Gemzar.  This is my first post, although I've read some of the others posted.  Have many questions, but feel very disorganized.  Wondering how many people have had an IV port inserted for the blood draws and the chemo treatments.  Are there problems with it?  Is it difficult to keep up?  Does it effect your sleep?  I sleep on my stomach.  Also having trouble with no appetite, fogginess, headaches and some insomnia.