January 24, 2010 at 12:32 am #14248marionsModerator
sharpeilover…..sometimes it helps to send a personal e-mail to the poster. You may do so by clicking on the name, left hand side, under green bar with “date posted.” It will lead you to another page, scroll down until you see “send e-mail.” That should do it.
MarionJanuary 23, 2010 at 6:51 pm #14247sharpeiloverMember
My Mom was diagnosed in early Nov with same unusual presentation. I will search for any other posts from you since ’06, but if you are ever on this board, could you please let me know how things went??
We are also trying to figure out things from this angle.
It has been four years since your post. I can only imagine what has transpired since. God bless you and your family.March 23, 2007 at 12:17 am #14246
I actually had a tumor in my left humerus. It ate all the bone away…so now I have an arm full of bone cement, plates and screws…but it works and doesn’t seem to have any additional cancer development. I am so thankful for the arm problem or I would never have found the cc!March 18, 2007 at 12:04 pm #14245jberg597Member
Severe pain in the neck area is was what brought my husband to the emergency room before his diagnosis. Upon reading a head, neck, and chest x-ray and CT scan, it revealed a tumor on his liver. Three months later and after a liver resection, his pain was gone from his neck. Maybe it was “referred pain”. We were never told that, though. There was no evidence of mets anywhere else. That is not the case now. My husband’s recurrrance shows mets to his pelvic area and liver.March 16, 2007 at 1:37 pm #14244alisonSpectator
We were told it was the enlarged liver pressing on one of the main nerves causing referred pain to the shoulder, I think it was the phrenic nerve A pet scan showed no evidence of any tumour anywhere but the liver.
AlisonMarch 16, 2007 at 12:47 pm #14243teresaMember
Hya Mary Alan had quite bad pain but eventually ,no tumers in this area.
but as I have said he had only visited the docs for removal of stitches,chicken pox and mumps in his whole life. He had never been ill.
It took him a while to make his mind up to visit with this pain.
The pain gradually worked its way around to the upper right front side of his body.
Everything was located in that one quarter of his body.
His heart and lungs were in their words A-one.
love and light teresaMarch 16, 2007 at 12:26 pm #14242marylloydSpectator
Hi to all of you above,
Were there actually tumors found in the shoulder blade areas? My husband has had pain in his shoulder for several months- they did an x-ray and it was normal so they are assuming it is tendonitis. I still am worried though since so many people here have had the same thing. MaryMarch 16, 2007 at 11:48 am #14241alisonSpectator
Hi Lainey and teresa
My husband Jon also c/o pain in his shoulder had no other symptoms, tumour was found by “accident ” after a stomach bug
AlisonMarch 15, 2007 at 7:56 pm #14240
Isn’t that interesting? I am so thankful I had the mets to bone, or who knows when (if??!!) I would have ever found the cc! My prayers for your family, too!
LaineyA?March 13, 2007 at 10:25 pm #14239teresaMember
This is the first time I have read of anyone else having a first symptom of tendonitis in the shoulder.
My son (alan) see rememberance first visited our doctor as he had pain in the shoulder blade area. He was given pain killers and was told he had a torn/ pulled muscle. He told me he knew it was more than that as he had torn muscles in the past.
He felt that as he was an extremely fit young man the medical people did not listen to what he was telling them.
However his mets were on both lobes of the liver.
I hope and pray that your spots will be eliminated by the chemo and all goes well for you and yours.
Alans momMarch 9, 2007 at 7:04 pm #14238
I have mets to my bone and liver, only. My bone spots were in my hip, spine and my left humerus. In fact, the only reason we caught my cc was because I thought I had tendonitis in my shoulder. I had an adenocarcinoma when they biopsied and they finally tracked it to cc. The tumor in my humerus was removed & radiated and the orthopedic oncologist and medical oncologist both felt that the spots in the other spots would be eliminated by chemo. Most people have mets somewhere else; but they do go to bone.June 12, 2006 at 9:20 pm #14237
Thanks for the information. Do you know of anyone who has cholangiocarcinoma that has had a positive response on the DAVANAT trial? What will be happening in the next few weeks that is so exciting? I will definitely try to find out more about the trial.
Hopeful in OklahomaJune 12, 2006 at 7:44 am #14236julesSpectator
this is an unusual case – I’m sorry I do not have any info/experience that i can share with you, I hope that your father in law responds well to treatment, best wishes – julesJune 11, 2006 at 5:04 am #14235
My father in laws spine lesion was biosied and was confirmed to be cholangio metastasis. So, it does appear that he has primary cholangio with the only detectable metastasis at this time being to the bony structures. This does seem to be an unusual case. We are going to try chemo (gemzar and Xeloda) and localized radiation to the spine.
Hopeful in OklahomaMay 28, 2006 at 4:27 pm #14234
Thank you jules. We are hoping that our original diagnosis from the liver biopsy was not accurate and that he has prostate mets rather than cholangio with bone mets. The pathologist was originally thinking prostate or pancreas mets from the biopsy. He said a PSA stain was negative, then favored primary liver- cholangio. I have read that cholangio can go to the bone, but this would seem extremely rare to only have identifyable mets to the bone. Problems with the prostate theory; however, is that his PSA level is only 1.5 (although has been slowly rising over the past few years where it was 0) and it also seems unusual to have a solitary 8cm mass in the liver that is a metastasis.
We have sent everything to MD Anderson for a second opinion. Now we are anxiously waiting. If he does have cholangio with bone mets, does anyone else now what the treatment might be?
Hopeful in Oklahoma
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