Going without treatment

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RE: Going without treatment

by maxxschiken on Thu Aug 08, 2013 08:41 PM

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On Aug 08, 2013 3:14 PM cb531 wrote:

God bless her I only hope my mom can become NED but she is back in hospital again for another infection they are thinking that it might be a blocked bile duct 104 fever and so weak. :( just plugging along this site is what keeps me going.

Thanks Cathy xo

Hi Cathy... Annie hasn't had the need for a stent but came very close to having one placed NEEDLESSLY! Yes, needlessly due to an over reaction our local oncologist and local gastrointestinal specialist had after Annie's CT scan earlier this year. The scan showed the "possibility" of what may have appeared to be blockage in the bile duct although liver panels were normal and there were no other indications such as jaundice or changes in her stools. Both specialist's kept insisting it would be a good idea to have a stent placed for preventative measures but I was very uncomfortable with the whole idea. I suggested we attempt first the least invasive procedure, the endoscopic ultrasound to determine what was going on with the bile duct area. The GI's conclusion from this procedure was again somewhat inconclusive indicating while there seemed to be an appearance of something that might cause blockage in the future but there was no immediate need for a stent, placing one as a precaution would be a good idea. The GI scheduled yet another appointment to place a stent via an ERCP and again this failed because during this particular procedure he was unable to pass through the proper channels of making the placement due to scar tissue! Apparently what was seen originally in the CT scan was scar tissue from the original 5cm tumor which after 10 months and 19 sessions of Folfirinox reduced to 4mm then became scar tissue with no metabolic activity. The GI once again suggested the stent be placed through Interventional Radiology which meant the radiologist would enter thru the side of Annie's abdomen and thru her liver to place the stent in her bile duct. Again, the GI scheduled the procedure with the interventional radiologist and here is the KICKER. All of this went by so fast we did not have a chance to consult first with the radiologist UNTIL 5 minutes before the surgical procedure was to take place. Annie was already prep'd and on the gurney when the procedure was delayed an hour or so. Meanwhile, we jus sat there and as usual prayed for wisdom, guidance and patience when finally the radiologist arrived. The most unbelievable thing occurred during our brief discussion prior to entering the operating room. Annie and I discovered he was under the impression her bile duct was already blocked with signs of her liver being affected by the bile not passing through normally. He was not prepared to insert a stent BUT instead perform a biliary drain!!! If you could only imagine the horror on our faces and the confusion on his face when I informed him her current liver panels were normal with no signs of jaundice or any symptoms related to a blocked bile duct. I aborted the procedure and the radiologist agreed. Apparently he read or did not read the findings from the ERCP procedure prior! Honestly, had this procedure taken place it would have been the beginning of misery and suffering for Annie! We immediately sought a second opinion from our consulting GI specialist/oncologist at UCSF that week and he completely agreed with our decision to abort the needless invasive procedure of a biliary drain. In fact, he reviewed the cd and data from the ERCP and concluded the scar tissue may never pose a problem in the bile duct area and for now it's best not to disturb what does not need to be touched at this point in our journey given the fact we are over 2 years post the initial diagnosis and continue to be stable without any treatments 1 year after chemo was stopped. He suggested to monitor as we have been doing with monthly liver panels and quarterly scans and IF changes appear where a stent is needed, he would first recommend one the best at UCSF who may be successful at doing what the initial GI specialist could not do. Annie would literally be a different person today had we not aborted the biliary drain. I know for a fact the drain would have been the start of misery after misery. There would be no way she could continue in her current passions of working out in the fitness center 3-4 hours daily sometimes 6 days a week. I will continue to keep your Mom in my prayers in hopes they make the correction in her bile duct. Also if the stent is a plastic one, have them replace it with metal for more stability. The whole idea and perception of using a plastic stent to begin with is they "assume" the plastic one will out live the patient! Isn't that SAD!!!!

RE: Going without treatment

by maxxschiken on Thu Aug 08, 2013 08:48 PM

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Gosh my paragraphs didn't happen SORRY!!!!

RE: Going without treatment

by randr2210 on Thu Aug 08, 2013 08:51 PM

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On Aug 08, 2013 8:48 PM maxxschiken wrote:

Gosh my paragraphs didn't happen SORRY!!!!

Can we get back to going without treatment?  I'm scared, and would appreciate hearing other stories from those folks that took a break for a couple months.  I've been enjoying my life so much, and I dread going back on that stuff again.

 

Thanks!

RE: Going without treatment

by sheann on Sat Aug 10, 2013 09:16 PM

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Last June I had a six month break with scans every thee months-what a fantastic time that was scan in January showed  that the liver mets had slightly grown so it was back to folfirinox and if my CT scan is good in September I will take another break, it will be 2 years September since diagnosed.

Blessings Sheann

RE: Going without treatment

by Kjohnchas on Sat Aug 10, 2013 10:55 PM

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My husband had a 4 month break so far,Monday a new scan,he feels great,so hopefully scan will be good good luck kathy

RE: Going without treatment

by randr2210 on Sat Aug 10, 2013 11:06 PM

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On Aug 10, 2013 10:55 PM Kjohnchas wrote:

My husband had a 4 month break so far,Monday a new scan,he feels great,so hopefully scan will be good good luck kathy

I'm on a four month break.  Gosh, i can't imagine having to go back to treatment though!  I feel like I gained my life back, and I'm not ready to give it up to the disease and chemo again.  But it scares me being off. 

RE: Going without treatment

by Kjohnchas on Sat Aug 10, 2013 11:09 PM

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Yes I understand my thoughts exactly

RE: Going without treatment

by randr2210 on Sat Aug 10, 2013 11:12 PM

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On Aug 10, 2013 11:09 PM Kjohnchas wrote:

Yes I understand my thoughts exactly

Thank you.  That's what I enjoy about this board - people here that have to deal with the same dreaded disease, or their family members.  We all have this one horrible thing in common. 

 

Must admit, I am scared.  But I'm loving it at the same time.  Sometimes I lie in bed at night and wonder, is this crap traveling, has it gone somewhere else?  But I love going to work and enjoying the summer so much.  Last summer all I did was sit in the house and cry and worry about dying.

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