Chemo after sucessful resection of Klatskin tumor

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Chemo after sucessful resection of Klatskin tumor

by cece1726 on Wed Oct 01, 2008 12:00 AM

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My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy

RE: Chemo after sucessful resection of Klatskin tumor

by Solutions on Thu Oct 02, 2008 12:00 AM

Quote | Reply

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Hello Cindy,

Your husband is young...my wife was 53 when she also had a Klatskin Tumor.

They removed 2/3 of the liver the gallbladder, cystic duct, common bile duct, hepatic artery and 2 lymph nodes.

No Chemo or radiation was done because there was nothing to chemo or radiate. Be very careful if your husband moves forward with Chemo therapy and radiation. By the way, I'm assuming the chemo is not oral. What type of radiation was suggested and what are they targetting the  radiation to? If the surgery was successful, do they just want to radiate the body just in case...if so be careful.

Cancer resurfaced in my wife 3 years after the original surgery. It was not a new cancer issue. When surgery was done in 2003 they removed 2 lymph nodes...it appears they should have removed one more...but you have to stop somewhere. In 2006 a PETCTscan show one lymph node had a problem...she took oral chemo...25 treatments of 3D/Conformal Radiation and 5 treatments to CyberKinkfe Radiosurgery.  The taget area was in one lymph node, so the radiation treatment was pin pointed. In fact she had a gold seed inserted in the infected lynph node so the CyberKnife Robotic system had a specific target.

I hope everything goes well....my wife is doing pretty good...but remember, there will be good days and a hell of a lot of bad days. You will find yourself visiting the ER for infections more than you thought.

Take care...Leonard from Alamo CA 

 

RE: Chemo after sucessful resection of Klatskin tumor

by michaelsurvivor on Fri Oct 17, 2008 12:00 AM

Quote | Reply

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Dear Cindy I'm 55 and last year went through almost exactly what your husband has(including losing about half of my liver). My doctor at UCSD also felt he removed all of the tumor. It was an 11 hour surgery. After about 3 mos of healing I was in the hands of my oncologist, who chose a combination of gemsar and oxyplatin for chemotherapy (this was to help kill any undiscovered cancer cells as well as to prevent the tumor from re-developing). We are all different, but as one of your respondents has alredy mentioned, radiation is probably not appropriate(at least it was not for me). My chemo was delivered by infusion, one drug one day, the other drug the next day, each with an anti-nausea drip as well. The third day  followed with a shot of Neulasta(to hjelp maintain a proper blood cell count) This went on at two week intervals, for 16 weeks. My suggestion would be to follow the instructions of your doctor as well as that of a nutritionist, if possible, insuring that you OK any supplements with your oncologist One of the prolblems with chemo is that it also kills a bunch of the good cells in your body, compromises your immune system and has many potentially nasty side effects, depending on the chem used. My biggest difficulty was being sick and tired all the time, especially right after treatments. There are many anti- nausea drugs out there, prescription-wise. Zofran worked the best for me.  Beyond that, it's wheat grass juice, netflix and hang in there.Your husband is lucky to have you Cindy. My best wishes to you both.

RE: Chemo after sucessful resection of Klatskin tumor

by arlo2 on Tue Oct 28, 2008 12:00 AM

Quote | Reply

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Dear Cindy;

My husband was diagnosed last year with stage 2b.  He was 52 and thriving until his symptoms occurred. He had a successful resection and partial whipple last Sept. but did not have the good margins that your husband has.  From what I have learned over the past year that is great and very hopeful. 

 We chose to go forward with chemo with Dr. Howard Bruckner in NYC where we live. He has dedicated his life to the study of very difficult cancers and effective chemotherapies for his patients. 

It was a difficult six months--really difficult physically for my husband and exhausting for me, but he has remarkable success and is extending the lives of his patients at all stages of cancer diagnosis. He and his team are remarkable.  I would suggest that you do whatever you can to meet with Dr. Bruckner. 

 I wish you all the best and send you many good thoughts as you weigh the possible therapies. 

 Warmly,

Lisa

RE: Chemo after sucessful resection of Klatskin tumor

by arlo2 on Tue Oct 28, 2008 12:00 AM

Quote | Reply

 

On 10/17/2008 michaelsurvivor wrote:

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Dear Cindy I'm 55 and last year went through almost exactly what your husband has(including losing about half of my liver). My doctor at UCSD also felt he removed all of the tumor. It was an 11 hour surgery. After about 3 mos of healing I was in the hands of my oncologist, who chose a combination of gemsar and oxyplatin for chemotherapy (this was to help kill any undiscovered cancer cells as well as to prevent the tumor from re-developing). We are all different, but as one of your respondents has alredy mentioned, radiation is probably not appropriate(at least it was not for me). My chemo was delivered by infusion, one drug one day, the other drug the next day, each with an anti-nausea drip as well. The third day  followed with a shot of Neulasta(to hjelp maintain a proper blood cell count) This went on at two week intervals, for 16 weeks. My suggestion would be to follow the instructions of your doctor as well as that of a nutritionist, if possible, insuring that you OK any supplements with your oncologist One of the prolblems with chemo is that it also kills a bunch of the good cells in your body, compromises your immune system and has many potentially nasty side effects, depending on the chem used. My biggest difficulty was being sick and tired all the time, especially right after treatments. There are many anti- nausea drugs out there, prescription-wise. Zofran worked the best for me.  Beyond that, it's wheat grass juice, netflix and hang in there.Your husband is lucky to have you Cindy. My best wishes to you both.

 Hi to both of you.  I responded to Cindy directly but couldn't help responding to your message.  My husband had a resection and partial whipple to remove bile duct cancer and the areas affected.  He went through 6 months of infusion chemo--which was rotten but potentially very crucial. He suffered a lot of pain with chemo--and still has pretty severe neuropathy in his hands and feet  

Since the conclusion of chemo, my husband has climbed back to good health.  We see his doctor every six weeks for blood work and get quarterly CT scans.  We are also under the care of a nutritional counselor who has recommended a raft of supplements.  We have eliminated sugar and almost all carbs from our diet to keep blood sugar levels at an even keel and starve any remaining cancer cells.

Last week we had our quarterly CT and they found some tiny nodules on his lung which were between 4 and 7 mm.  P was imaged by a brand new  state-of-the-art CT scanner. We are waiting now for 2 doctors to compare past CT scans with the new CT and PET to figure out if the nodules are new or if they have been around for awhile. 

 It was also troubling that his CA 19-9 had crept up to 26 from 16.

Do you have any words of wisdom about this?  Have you heard of supplemental chemo in cases like this?   Is there any other  experimental treatment that could target this specific area? 

 Thank you for any input you might have.

Lisa

 

RE: Chemo after sucessful resection of Klatskin tumor

by michaelsurvivor on Sun Nov 02, 2008 12:00 AM

Quote | Reply

 

On 10/28/2008 arlo2 wrote:

 

On 10/17/2008 michaelsurvivor wrote:

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Dear Cindy I'm 55 and last year went through almost exactly what your husband has(including losing about half of my liver). My doctor at UCSD also felt he removed all of the tumor. It was an 11 hour surgery. After about 3 mos of healing I was in the hands of my oncologist, who chose a combination of gemsar and oxyplatin for chemotherapy (this was to help kill any undiscovered cancer cells as well as to prevent the tumor from re-developing). We are all different, but as one of your respondents has alredy mentioned, radiation is probably not appropriate(at least it was not for me). My chemo was delivered by infusion, one drug one day, the other drug the next day, each with an anti-nausea drip as well. The third day  followed with a shot of Neulasta(to hjelp maintain a proper blood cell count) This went on at two week intervals, for 16 weeks. My suggestion would be to follow the instructions of your doctor as well as that of a nutritionist, if possible, insuring that you OK any supplements with your oncologist One of the prolblems with chemo is that it also kills a bunch of the good cells in your body, compromises your immune system and has many potentially nasty side effects, depending on the chem used. My biggest difficulty was being sick and tired all the time, especially right after treatments. There are many anti- nausea drugs out there, prescription-wise. Zofran worked the best for me.  Beyond that, it's wheat grass juice, netflix and hang in there.Your husband is lucky to have you Cindy. My best wishes to you both.

 Hi to both of you.  I responded to Cindy directly but couldn't help responding to your message.  My husband had a resection and partial whipple to remove bile duct cancer and the areas affected.  He went through 6 months of infusion chemo--which was rotten but potentially very crucial. He suffered a lot of pain with chemo--and still has pretty severe neuropathy in his hands and feet  

Since the conclusion of chemo, my husband has climbed back to good health.  We see his doctor every six weeks for blood work and get quarterly CT scans.  We are also under the care of a nutritional counselor who has recommended a raft of supplements.  We have eliminated sugar and almost all carbs from our diet to keep blood sugar levels at an even keel and starve any remaining cancer cells.

Last week we had our quarterly CT and they found some tiny nodules on his lung which were between 4 and 7 mm.  P was imaged by a brand new  state-of-the-art CT scanner. We are waiting now for 2 doctors to compare past CT scans with the new CT and PET to figure out if the nodules are new or if they have been around for awhile. 

 It was also troubling that his CA 19-9 had crept up to 26 from 16.

Do you have any words of wisdom about this?  Have you heard of supplemental chemo in cases like this?   Is there any other  experimental treatment that could target this specific area? 

 Thank you for any input you might have.

Lisa

 

Hi Lisa   I'm responding to your response to my response to Cindy. Hope you are doing OK. Like your husband, I also have the neuropathy in hands and feet (probably temporary when due to chemo) . Vitamin B supplements(especially B-6) help.Reguarding your question about supplemental chemo, it is done sometimes when cancer returns, but it sounds like you're not sure yet. Regarding specific areas, there is something called the "cyber knife" (a focused type of radiation) I have heard about but don't know much. I have also read that the CA 19-9 tumor marker is not fully reliable when it comes to Cholangiocarcinoma. As far as words of wisdom - hmmmmmm.....keep asking questions and caring for yourself as well as your husband. God bless you both.   Michael

 

RE: Chemo after sucessful resection of Klatskin tumor

by cece1726 on Mon May 04, 2009 12:00 AM

Quote | Reply

 thanks you for your response, I'm just now getting back on the web-site. Since I last wrote, Brian went thru radiation, and 5FU, most recently was getting Gemzar, 2 wks on 1 wk off, of course very tired afterwards, but still pushed himself to go to work everyday!! He had about 4 doses of the Gemzar, and for the past month he complained to the onclogist that he had pain in his stomach that would go away when he ate a meal, etc, Brian wasn't sleeping so the last time we went to the onclogist I suggested that he go on an anti-depressant, and maybe an anxiety med to take as needed. The very next day after chemo he came downstairs and looked like a white ghost!!. He laid on the couch, and I called the dr. also Brian said he was up all night w/ diarrhea. They said bring him in for fluids, he is probably dehydrated, so off to Philly we went, started him on the fluids, took his blood, which came back at Hgb 6.5, so suggested that he had internal bleeding. He was rushed over to the ER, admitted and got 10 liters of blood, anyways story goes on, he had a bleeding duodenal ulcer. It stopped bleeding, so Brian didn't have to go thru surgery, which wasn't going to be a good choice. He is back at work, spirits are definetaley down...I'm not sure how to help him, he keeps his feelings mostly to himself, or really can't express them.Even though we have an onclogist, a GI doctor, no one really wants to take on responsibility for helping the patient emotionally, or even nutrionally. (which is such a big part of getting thru this ordeal) BTW- We could not get Brian's platelets up early on, so he couldn't get the chemo, then a friend told me about eating foods high in beta caradine, so i made carrot ginger soup, peanut soup, and to our surprise and the doctors, his platets went from 75 to 110 in one week. I told the doctor how we did it, and she just said well keep eating that way. Didn't get it that she should suggest this to others!!.

Just a reminder that we are our best advocate. Hope all is going well for you guys.

On 10/2/2008 Solutions wrote:

 

On 10/1/2008 cece1726 wrote:

My husband, age 50 has just had 50% of his liver removed, the gallbladder and the Klatskin Tumor. He had the surgery performed by Dr. Shaked at the University of Penn. the surgery went very well, and the Dr. was able to remove the tumor. . We just got the pathology report and he has 1mm of good margins. the Doctors are suggesting that Brian move forward w/ chemo and radiation. Has anyone been through this, and have any suggestions??

thank you,

Cindy


Hello Cindy,

Your husband is young...my wife was 53 when she also had a Klatskin Tumor.

They removed 2/3 of the liver the gallbladder, cystic duct, common bile duct, hepatic artery and 2 lymph nodes.

No Chemo or radiation was done because there was nothing to chemo or radiate. Be very careful if your husband moves forward with Chemo therapy and radiation. By the way, I'm assuming the chemo is not oral. What type of radiation was suggested and what are they targetting the  radiation to? If the surgery was successful, do they just want to radiate the body just in case...if so be careful.

Cancer resurfaced in my wife 3 years after the original surgery. It was not a new cancer issue. When surgery was done in 2003 they removed 2 lymph nodes...it appears they should have removed one more...but you have to stop somewhere. In 2006 a PETCTscan show one lymph node had a problem...she took oral chemo...25 treatments of 3D/Conformal Radiation and 5 treatments to CyberKinkfe Radiosurgery.  The taget area was in one lymph node, so the radiation treatment was pin pointed. In fact she had a gold seed inserted in the infected lynph node so the CyberKnife Robotic system had a specific target.

I hope everything goes well....my wife is doing pretty good...but remember, there will be good days and a hell of a lot of bad days. You will find yourself visiting the ER for infections more than you thought.

Take care...Leonard from Alamo CA 

 


 

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