Hi there - I have seen a few notes on immunosuppressants but not much.  I thought I would shoot out another quick note...requesting feedback with the hopes that this will help my mom in her horrendous battle and others fighting hard too.

Mom's liver was ressected back in May, 2012.  They got all visible cancer but she had a fairly quick recurrence.  All is still contained within her liver and her Oncologist feels that it is fairly slow moving.  However, we need to start doing some sort of prevention quickly and I am sensing quite a bit of urgency from the oncologist.  She has done several different combinations of chemo- none of which has really been effective.  What the oncologist wanted to try next were both declined by insurance and we are moving onto this option. 

She is supposed to start Afinitor which is the brand of everolimus.  It is an immunosuppressant that proved to be effective in her most recent biopsy which was used to help better understand the genetics of her tumors.  This particular one showed effectiveness as it will hopefully block the molecular pathway of the tumor.  I am not sure if I got that right but that's how I remember it explained to me. 

Our first and most major concern is her depleted immune system and risk to a life threatening infection.  We would be very content if it provided stability and elated if it provided shrinkage. 

Does anyone have any thoughts, experiences, knowledge, etc related to this option?  Anything you suggest she do simultaneously to boost immune system, strength, weight, etc while taking this? 

She will be taking it orally, 5mg, 1/day. 

Thank you all so very much!

Sincerely, Sandy

Hi all, a few quick questions...requesting feedback if possible.  My mom continues to fight hard and battle but I feel she is losing steam.  Collectively we are all continuing to seek options and do our best to keep her upbeat and enjoying each day.  Two things...

She seems to routinely get a very low-grade fever in the evenings 99-100.  Is anyone else having these same symptom?  Any thoughts on why?  We aren't overly concerned because it does not spike and it isn't present through the night, mornings or mid-day for that matter.  We she has had serious infections - it has been a totally different story - high spike, feeling crummy, etc. 

Our other question/concern is her appetite and her extreme weight loss.  Since her diagnosis - she was gone from an extremely fit, strong 120lbs to a feeble, fragile, weak 90lbs (on a good day).  She is eating but her appetite is weak, she sometimes vomits (not sure if that is due to pain meds or residual chemo in body or what?) and food just generally does not sound good.  Her taste for everything has really drastically changed.  She has a pretty good protein shake that she tries to do 1-2x a day but she is barely maintaining at 90lbs. 

Suggestions?  What is contributing to her constant weight loss?

Thanks so much in advance for all of your feedback.  I am so grateful for this community and the support we provide each other.

Hi Lainy,
I'm so sorry to hear about your daughter's boyfriend.  My mom is not in Phoenix.  They are in Huntington Beach, CA (Orange County area).

Thanks everyone so very much for your feedback and of course the encouragement.

Lainy, I will most certainly print off Percy's response and detailed info and take that with us to our oncologist appt tomorrow. Great advice.

Susie, she did her 10 weeks of IPT at a clinic called Euromed in Phoenix, Az.

Marion, thank you so much. Will def ask those two questions.

One thing I forgot to clarify about her details are that she was 62 at the time of her diagnosis and that hers is considered intrahepatic cc.

Thanks again everyone!

Hi there - I must say that I'm not sure how I've survived the last 18 months without the support of this amazing group.  I hate meeting everyone under such circumstances but I am already so grateful for you all.  I recently discovered what an incredible resource this is and immediately felt even more hopeful and certainly not alone.  I wanted to introduce myself... I am Sandy, wife and mother of 4y/o boy and 20 month old girl.  I am the daughter to my most amazing, kind, beautiful mom who was diagnosed with CC back in Feb, 2012.  My Mom (Sherry) has truly been a specimen of health all her life, never sick and led the healthiest lifestyle of anyone we know.  She taught PE, health and was a high school coach for 35 years.  She showed no signs of the disease other than a sudden onset of extreme abdominal pain back in July, 2011.  She spent time in the ER where they could find no source of the pain other than a spot they found on her liver that we all of course never knew anything about.  After 7 months of misdiagnosis', debauchery through primary care/gastro docs and over 20+ benign biopsies...they finally got a readable tissue sample and we learned of our most awful nightmare ever.  At that time she was under the care of Kaiser who gave us a grim outlook.  We were told liver transplant and surgery both were not options based on the location of the tumors.  They said that we could try chemo-embolization (TACE) which would just prolong the inevitable and would diminish her quality of life.  They didn't have much to offer at best.  At that point we got second opinions at USC and UCSD, both of which offered much more hope than we were originally given at Kaiser.  They both felt they could do a resection.  We decided to go with Dr. Alan Hemming at UCSD who is an amazing surgeon who specializes in bile duct surgery for malignancies.  He felt he could help but that there was still huge risk.  The unfortunate part was that had we known initially what the spot on her liver was, 7 months earlier, he could have had a much simpler task at hand in the resection.  Prior to surgery she did about 2 1/2 rounds of gemzar/cisplatic with hopes of shrinking the tumors enough to make the resection more hopeful.  On May 15th, 2012 he resected 75% of her liver.  He removed all the tumors and found no lesions in the surrounding lymph nodes.  The surgery was a big success.  However the pathology revealed positive margins in her remaining liver.  She recovered from the surgery incredibly fast and amazed all the docs.  Unfortunately, they nicked her bile duct slightly in the surgery while trying to get all malignancies out and she had a biloma (fluid collection) that had developed in her abdomen.  That prompted a stint procedure whichh eventually led to the placement of an external drain.  Once this whole issue was stabilized with the external drain she had another CT Scan to get a baseline on her recovered state.  They found a few satellite tumors in her regenerated liver (which was somewhat to be expected with positive margins).  At this point, she proceeded with several variations of systemic chemo. 
- 9 weeks of taxotere and xeloda - ineffective
- 6 weeks of doxorubicin - ineffective
- 5 weeks of gemzar and cisplatin - ineffective
- 10 weeks of insulin potentiated therapy with high dose vitamins - somewhat stable in some areas and ineffective in others - but depleted her bone marrow and her platelet count got to zero.  Ugh.

She was hospitalized for 8 days over the 4th of July to get her blood counts stabilized and infection managed.  We are now working again with a wonderful oncology group at UCSD.  They have a new clinical foundation that has been established by top research docs who have come to UCSD from MD Anderson.  They want to do some molecular profiling on the genetic mutations of my mom's tumors with the hope that they find a match to a previously identified gene mutation in which they've had success treating.  We feel very hopeful that this seems like an extremely scientifically targeted attempt to treat my mom.  The fact that she has tried so many variations of systemic chemo with no real encouraging results - this to me seems to be a great way to better understand how to effectively treat her.   One hesitation is the endoscopy where they will get the biopsy.  What is everyone's thoughts on risk of tracking/spreading the cancer cells through biopsy?  It seems as though when they performed so many biopsies on my mom in an effort to find out what was originally wrong (pre-diagnosis), the cancer spread like wild fire at that particular time.  Any thoughts on this whole molecular profiling approach in general? 

We continue to be extremely positive and hopeful.  Mom has the best attitude around and has so much fight to give and still smiles so much everyday.  We have certainly learned to enjoy every minute together no matter what and wow, all this really makes life seem so delicate and fragile.  Never in my wildest dreams could I have ever imagined this situation for my courageous mom.  I am so grateful for our amazing family and friends along with our new CC.org family.