pcl1029

Hi,
Is it more or less like a muscle cramp than pain ?
If he is on Coumadin for DVT and if the INR is between 2-3, then I do not think the pain is related to DVT especially the scan is clear last week.
If it is like a muscle cramp, then he just stand up straight until the cramp disappear. It is relate to electrolytes imbalance esp. Magnesium.
Just google muscle cramp and there will be some exercise he can do before going to bed to minimize the problem.
God bless.

Hi,
Is your mother on furosemide or Aldactone?
Any other medications?
Since your mom has lymph nodes mets, it is common that swelling of the lower parts of the body and ascites to occur . Xeloda generally will not cause swelling
God bless.，

Hi, Linda,

sorry for what happen, please say hi to your husband for me.

I reviewed most your messages.but first
1. there is a clinical trial at Cornell University for PDT (clinical identifier is NCT01524146) it is the #4 listed on this foundation’s clinical trials list.
2. Consult with an interventional radiologist ( you can send CT scan disc to Fred M. Moeslein, MD, Ph.D
Assistant Professor
Interim Director, Division of Vascular and Interventional Radiology
University of Maryland School of Medicine
Department of Diagnostic Radiology and Nuclear Medicine
22 S. Greene Street, Room N2W76
Baltimore, MD 21201
E-mail: fmoeslein@umm.edu)
He will answer your questions with regard to this option.)
and an oncology radiologist to see whether what they can offer.(ie: cryoablation ,IRE(nanoknife) for lymph node nd or the liver if appropriated; or IMRT or SBRT radiation by oncology radiologist to at least to halt the growth of the tumor that compress the intrahepatic bile ducts if not contraindicated due to the bilirubin level.) I did a cryoablation for the lymph node and feel fine.it is an outpatient procedure.
3. sine your husband is KRAS mutated and not wild type, it may be of little use of the TKI, but you can ask Dr. Catenacci to see whether sorafenib( a multi-kinase inhibitor will worth a try base on the Foundation One repoort you got.I heard from Dr. Gores (from Mayo) that sometimes a subset of patients will response to sorafenib even though the majority won’t.
I think at this juncture of the game, if I were your husband, I will try it if the bilirubin level permitted to do such.
4. You can also ask Dr. Catenacci to see whether Univ. of Chicago’s medical immunology dept. can give you anti- PD1/PDL1(L2) clinical trial if they are ready and running .I was told not ready in July2013,but now is November;. or he can refer you to such immunology treatment center for further treatment.
5. In the meantime, while waiting and buying time, chemoembolization(TACE) can be used to take care of the multiple small tumors if the interventional radiologist say no contraindication to the procedure;TACE is an out patient produre and with little or no side effects,at least that was the case for me.I have no opinion on radioembolization.
God bless.

Hi,
You are only 62. Very young by any standard.
Your heart has already set in for no chemotherapy but is afraid is it a smart choice or not?
You are worrying its side effects more than the benefit of the chemotherapy even if the chemotherapy will extend your life. You do want to live but not sure about the quality of life with chemotherapy.
I think to let nature takes its course may not be the way to go; no body knows what will happen in one’s journey of life being having this diseases .
For some, their young life cut short unexpectedly by this disease; For others ,some have to surrender their promising careers and future to just having enough energy to fight for their lives. For some, the loving relationships with spouse hijacked and their dreams of growing old together come to an abrupt end. For others, their dreams to play with the grand kids will be a miracle. And of course not to mention how to deal with financial hardship and countless trips far away to get the medical help they needed.
What I want to say is, you are young and your chance to a better life will be better than others if you seek treatment as soon as possible. Surgery is not the only option, there are other treatments that will provide quality life extension without great suffering.
If you are afraid of chemotherapy, other treatment like chemoembolization will be the least uncomfortable experience procedure. Try to contect an interventional radiologist for such procedure. RFA or nanoknife(IRE) may be consider too but the size of a7cm tumor is of concern. IRE or cryoablation can be used on lymph nodes if not contraindicated .
If you do not take action, you will never know what works for you.

If I were you., I will try 6 cycle of Gem/CIS and take a Cat. Scan to see whether it works or not, ask the doctor you Are very concern about the side effects,therefore they may start you on a less dose and more meds for control of your nausea/vomiting to make it easier on you, you can always stop treatment anytime. ( the reason is simple, you know you have tried your best to fight for this disease and there will be no regret in your heart when the time is come.)
Tha above is not my advice but my way of dealing with this disease. I like to explore options and I hope through my journey, patients like me will find some comfort and encouragement during their treatment.
God bless.

sensitive subject, do not read if you are not up to it or you have never read my post before

Hi,
First, take good care of yourself,you are the glue to hold the family together and I knew you have tried you best in caring your husband.
As you have known, CCA is a roller coaster ride that mostly inclined to go to the other side of unhappy ending rather than the happy side of ending.
In some way ,I think what your husband did is “normal but frustrated to himself if he had a bad day.”not to mention how he feels” he is helpless to correct the situation,he is powerless again his own disease.” In a way, we lost our manhood to provide, to protect and be an anchor to the family that both a husband and a wife have created .( sorry, I am an old fashion kind of guy, forgive me if I say something inappropriate.)
My suggestion is telling him to hang in there till the 6 month chemotherapy ends in Feb. after that, everything is up to his own decision,including not to be treated. I indeed shared some of your husband’s anger and feelings. The one thing that still keep me relatively optimistic is ,like you, I am also a medical professional working in a hospital environment.
I am a patient of this disease for 54 month, I did research, I tried my best to be on the top of this CCA, I seek and try options after consulting with the best doctors I know.
But deep down, I know the cure or the easy tolerated and effective treatments may not be in time to save me and most of the patients that have or will have this CCA in the near future.
God bless.

Hi,

Side effects of everolimus : (from http://www.clinicalpharmacology-ip.com )
fever (15-31% depends on cancer type to be treated).
fatigue(15-45% depends on cancer type)
anorexia
weight loss(9-28% depends on cancer type)
asthenia – abnormal weakness or lack of energy(13-33% depends on cancer type)

Therefore ,most likely , your mom’s problems are related to the side effects of the drug.

God bless .

Hi,
If you can get a PET/CT scan, then it will tell you whether there is any tumor or cancer ACTIVITY in the adrenal gland area.

God bless.