recurrence questions

clkempf,

Hooray for month 9!!! and many more. Keep on praying and fighting this cancer.

Linda Z.

I am in month 9 and seeing the green grass I was told I would never see. Praise be to the Lord Jesus Christ.

Dearest Margaret,
I too have this dreaded cancer. My largest living tumor has shrunk from the size of a orange to the size of a jelly bean. The tumor itself is still large but mostly dead. The smaller ones are gone, all thanks to The Mayo in Minnesota, and Fort Wayne Onocology.
So far I have underwent Sir-Sphere (read on Google/Bing) and chemomembolization and chemo. I have Stage 4 with mets to the liver and lungs. I was told originally I had less then 6 months. That was over 8 months ago. I feel good and so far look good.
Never stop hopeing! I will pray for your husband. Tell him to fight, and pray…it is what counts. I have been through the journey your going thru, and it is hard….cry, scream, but never give up. I plan on being here as long as I can.
Clkempf

Dear ANP Welcome to our Family and glad to hear that your father is already a survivor. Unfortunately you have to play the waiting game with CC and Scans. I believe that is one of the hardest parts of this whole routine. When you find out the results then you can come up with a game plan either way and that always seems to be better than wondering. We try to be optimistic as attitude helps so much. We will be hoping for the best for you and please keep us posted.

anp:

Welcome to the best CC site that I have found on the internet. My husband Tom has Cholangiocarcinoma and his was dectected early through blood work and following an ERCP here in Green Bay Wisconsin, it was found to be cholangiocarcinoma. He underwent a liver resection in June 2008. He developed a bile leak and had an external drain for 7 1/2 months. He did not have any chemo or radiation post surgery. In October 2009 after a PETScan, they told him he was cancer free, however apparently there was a ‘hot spot’ in the liver which his surgeon said was the ‘liver still healing’.

In November of 2009 he started turning yellow and I immediately knew something was wrong. We started searching for answers and his veterans oncologist told him that chemo and radiation would not work and that he should go home and he gave him 6 months.

We sought other opinoins and have now learned that he should have had chemo even after a successful liver resection with clean margins. After reading through all the medical records from the VA hospital in Milwaukee Wisconsin we have learned that he surgeon ‘re-used’ the stent that was in the left lobe of the liver and placed it during surgery in the remaining right biliary tree. (One wonders if this is why he has now presented with a 2.5 inoperable tumor in the right biliary tree??)

We did not like the 6 months diagnosis and went to Marshfield Clinic and although the oncologist agreed with the inoperable part, she did not agree with the no chemo and no radiation.

We then went to the Vince Lombardi Cancer Center here in Green Bay and Tom has had 28 radiation treatments and has started Chemo (Xeloda). His biggest problem is that they were unable to stent the liver bile duct internally, and he has had an external drain since December to drain off the bile that was starting to inflitrate his system, turning him such a horrible shade of yellow.

Without the bulk of the bile getting into his system, he is not pulling much nutrition from the food he eats, therefore he is loosing weight. He is now down to 117 lbs. After the docs here in Green Bay trying 5 times to get the internal stent in I feel that they have given up. We asked for a consult with Madison and the doctor there agreed with the doc in Green Bay that “There is nothing more to try”…..

Unsatisfied with that answer, I asked his oncologist to consult with the Mayo Clinic in Rochester Mn. We have an appointment there on Wednesday, April 14th. and we believe that they are going to review everything and try to place the internal stent. The tumor is dead through the radiation treatments, and the chemo is finding any remaining cancer cells lurking around in his body and KICKIN those in the behind.

My recommendations (and I am by no means a medical professional) is that even after a successful liver resection, one SHOULD have at least a few rounds of chemo as a precaution…..to catch any remaining cancer cells. All of Tom’s new doctors all say that IF he’d had the chemo after his resection he may not be in the position he is in today.

I do not know what the outcome will be for Tom. If they are unable to place an internal stent or somehow remove the dead tumor, I feel that we will be making funeral plans in the near future. Because without the bile to help him digest his food, he will continue to lose weight and he will continue to get weaker and weaker. Very sad, but true.

By the time the tumor started causing the blockage, it was already too late to place an internal stent because of the placement of the tumor. My husband also has diabetes. I would certainly questions the doctor’s about some rounds of chemo for your dad. Your post does not indicate if your dad has had chemo….but if not, I would insist upon it.

You can read more about my husbands journey with CC under my login name.

Go with God, prayers are coming your dad’s way from Wisconsin.

KEEP KICKIN’ THAT cancer.

Margaret (My husband and cholangiocarcinoma)