• From: Rockville, MD
  • Registered: Tue, 21 Aug 2012
  • Posts: 4

Topic: Referred Pain

My husband was diagnosed in November 2011 with stage IV CC.  It was quite by accident that the cancer was discovered.  He was experiencing some pain in the kidney area and had been on a weightloss regimen that involved high protein drinks (preparation for gastric sleeve weight reduction surgery).  A CT was done of the kidney and something was noted in a far margin of the scan.  After a contrast CT, further tests were ordered (PET / CT), which showed several highlighted suspicious lesions.  This was followed by a liver biopsy.  The biopsy confirmed CC and the associated masses in several locations (lungs, liver, near the pancreas head) classified this as stage IV.  We were so shocked.  To this day he is still asymptomatic.  He has gone through several rounds of chemo with a few different drug combinations.  Now he is looking at a Cyberknife procedure to keep one of the tumors from infitrating the bile duct and causing a problem.

He is continuing to experience pain near the lower portion of the rib cage on both sides radiating from the back to the front.  Has anyone had experience with this?  Nothing on the scans shows lesions in that area.   CT scans have not shown anything.  The Dr. wanted to do a PET scan, but this was rejected by the insurance since it was not part of the "standard protocol". 

Beth

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Referred Pain

Hi Beth,

Welcome to this site. I am sorry to hear your husband has been diagnosed with CC. My daughter, Lauren is the one with CC. She has different pain all the time. Some days her back hurts really bad, other days it is the front, and sometimes it is both. And then there are days when she has no pain.She used to get shoulder pain sometimes as well. Since starting a new chemo regimen a few months ago, she isn't having as much pain. Her doctor told her that the pain in the front and back was most likely caused by her liver. The liver has a membrane over it, that when stretched can cause pain. Her doctor said her liver had gotten larger to compensate for the large tumor in it. Her shoulder pain, and a lot of people get this, is caused by a nerve. Lauren takes morphine and hydrocodone for pain. She also has fast acting morphine for breakthrough pain. Some days she needs it and some days she doesn't. I hope I have eased your fears a little. I know I feel better when I find others that have the same symptoms, but I wish no one had to go through this. Take care and I wish you and your husband all the best.

-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • From: Rockville, MD
  • Registered: Tue, 21 Aug 2012
  • Posts: 4

Re: Referred Pain

Hi Pam,

I am so sorry to hear about your daughter, Lauren.  It is so tough to standby and watch this horrible disease and provide the comfort and support that the afflicted person needs.

My husband takes vicodin to help alleviate his pain and uses heat from a heating pad.  Fortunately, he does not have the shoulder pain, but did have that when they did the biopsy.  It was horrible.  He said that he now has a new "10" on the pain scale.

I will keep you and your daughter in my prayers.

Beth

  • Registered: Fri, 12 May 2006
  • Posts: 8,165

Re: Referred Pain

Beth...I would like to follow Pam and welcome you to the club no one wants to belong to but given the circumstances is glad to have found.  As Pam has mentioned, advanced disease often times is accompanied by pain.  It takes trial and error with different medications in order to find the right amount needed to keep pain under control.  You would also want to watch for constipation caused by these drugs, as it can become problematic if not tended to.  We have numerous postings on this subject all of which you can find by entering the key word "pain" or "constipation" into the search function. 
Please keep us posted in regards to the upcoming, possible, cyberknife intervention.  Fingers are crossed.  Know that we care and know that we are with you, all the way.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Lainy
  • Lainy
  • Moderator
  • Offline
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,210

Re: Referred Pain

Dear Beth, welcome to our remarkable family with people who care from all over the world! I am sorry for what your husband is having to go through but would like to pick up on the CYber Knife. My husband had it as his CC was located in the bile duct valve and they had to get to it by removing the head of the Pancreas so he could have a Whipple surgery. 3 years later the CC returned to where his Duodenum used to be and he had Cyber knife, truly a miracle. There are only 3-4 treatments and you are done.I know that the tumor has to be under 7cm and his was 7 so they did 25 radiation treatments first. Then about 2 1/2 months later he had the C.K. Amazing.
As for the insurance not paying for the PET they turned Teddy down at first so the ONC wrote them a letter and they approved it. This happened I believe 2 -3 times. But often the ONC can intervene and that could help. In the meantime I had found out that there are some private Imaging places who will do the PET and the fee is usually around 1500.00. Good luck on everything and please let us know how he is doing as we all truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

6 Reply by btmobley7 (edited by btmobley7 Thu, 15 Nov 2012 17:39:34)

  • From: Rockville, MD
  • Registered: Tue, 21 Aug 2012
  • Posts: 4

Re: Referred Pain

Hi Lainey, Pam, and Marion. 

Jeff recently had cyberknife at Georgetown Hospital to take care of a series of tumors near the head of the pancreas that were pushing on the nerves of the celiac plexus.  The pain that was radiating from his lower rib cage around to his back and up his shoulders has diminished we believe from this treatment.

Lately, he has started to experience rigors and sweats.  It comes on suddenly and without any significant fever.  The highest that it has gone up to is 99.4.  blood cultures have always come back negative.  We have come to learn recently that these rigors and sweats are probably due to the tumors.  The tumors secrete cytokines, which cause an inflammatory reaction, causing the rigors and sweats.  It can also be from blood clots as well.  Many advance cancer patients have blood clots from secretions from the tumors.

Jeff is getting ready to go into a trial at NIH where they have harvested leukocytes from him and are genetically engineering them to target the tumors and cancer cells to block receptors on the tumors and cancer cells so that they cannot make a blood supply, thus making them starve to death.  It is a very interesting approach in that it is systemic (perfect for stage IV) and uses the body's own defenses to fight the cancer.  There was another trial that we wanted to have him participate in where they would have harvested a piece of tumor and sensitized his Lymphocytes to attack the cancer cells.  Unfortunatley, his tumors are not readily accessible in order for them to harvest a piece of tumor. 

In both scenarios his immune system would be wiped out, the genetically altered cells are reintroduced and then he is given a drug to quickly grow up the army of fighting cells.  All of this is done in-patient and is cutting edge.  There is not much else out there that can help him at this point.

I pray that this approach will have positive results.  I hope that things are progressing in a positive manner for each of you.  To watch someone you love fade away in front of you is heart-wrenching.

Beth

  • From: Uniontown, Ohio
  • Registered: Fri, 23 Sep 2011
  • Posts: 1,488

Re: Referred Pain

Hi Beth,

I am happy that Jeff's pain has gone since the cyberknife. I am sorry to hear that he has now developed rigors and sweats. The trials you have explained sound very interesting. I pray the trial he is going to take part in really helps him. My daughter is doing ok. She had an awful allergic reaction to one of her chemos a few weeks ago. She is still on her oral chemo and will hopefully have a good CT scan in Dec. It is hard to see your loved one trying anything and everything to have a chance at just living. Hoping for a great outcome.

Hugs and love,
-Pam

Hoping for a miracle for my daughter, Lauren.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Pamela's Website

  • Lainy
  • Lainy
  • Moderator
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  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,210

Re: Referred Pain

Hello Beth, so glad the Cyber Knife did work for the pain. My husband had C.K. and I considered it a miracle tool then. The only time Teddy had rigors and high Temps was when he would get the dreaded blood infections. The only way to find a blood infection is through a blood culture which takes 4 -5 days so the ONC would always start him on Levaquin. WOW. that trial sounds very interesting. I will be praying for good results. You are so right about the experience of watching a loved one be so ill. Exactly why we have to be so strong. Please keep us updated on Jeff as we truly care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.