› Forums › General Melanoma Community › YERVOY didn’t touch bowel…
- This topic has 15 replies, 4 voices, and was last updated 12 years, 8 months ago by boot2aboot.
- Post
-
- March 11, 2012 at 6:54 pm
Much to our dismay, while the YERVOY seems to have worked well on my subcues and abdominal lesions, it didn’t quite get to the bowel. In a matter of 2 months following completion, I had emergency surgery Friday at 1 am to remove 20″ of intestine. The good news is I’m alive. Had I waited, I wouldn’t be posting this right now. And…obviously, it’s GONE? Has this happened to anyone? Where the intestine turned inside itself so that the mets couldn’t be seen by scan? They were having a hard time getting dye thru my veins…. Thanks for input. I am, quite frankly, sufficiently frightened.Much to our dismay, while the YERVOY seems to have worked well on my subcues and abdominal lesions, it didn’t quite get to the bowel. In a matter of 2 months following completion, I had emergency surgery Friday at 1 am to remove 20″ of intestine. The good news is I’m alive. Had I waited, I wouldn’t be posting this right now. And…obviously, it’s GONE? Has this happened to anyone? Where the intestine turned inside itself so that the mets couldn’t be seen by scan? They were having a hard time getting dye thru my veins…. Thanks for input. I am, quite frankly, sufficiently frightened.
- Replies
-
-
- March 11, 2012 at 7:32 pm
my friend did bio chem and they never saw it in her intestines…even tho the scanned her inside and out. She kept complanning about pain and finally they decided to go in because they thought they saw a couple inches of "something"
growth in intestine was larger than expected…melanoma was wide spread
-resected all of ascending and transverse colons…that is 2/3 of large intestines
-procedure called a right hemicolectomy & bowel resection
-tumor size of large grapefruit…some tumor still inside…unresectable…this was in Jan 2011…
She ended up in my sister trial of vaccine trial using peptides and MDX 1006 ( original anti pd -1)…she is doing well and her melanomas continue to shrink. She contiues in the booster phase of the trial getting anti pd 1 IV once every 3 months!
-
- March 11, 2012 at 7:32 pm
my friend did bio chem and they never saw it in her intestines…even tho the scanned her inside and out. She kept complanning about pain and finally they decided to go in because they thought they saw a couple inches of "something"
growth in intestine was larger than expected…melanoma was wide spread
-resected all of ascending and transverse colons…that is 2/3 of large intestines
-procedure called a right hemicolectomy & bowel resection
-tumor size of large grapefruit…some tumor still inside…unresectable…this was in Jan 2011…
She ended up in my sister trial of vaccine trial using peptides and MDX 1006 ( original anti pd -1)…she is doing well and her melanomas continue to shrink. She contiues in the booster phase of the trial getting anti pd 1 IV once every 3 months!
-
- March 11, 2012 at 7:32 pm
my friend did bio chem and they never saw it in her intestines…even tho the scanned her inside and out. She kept complanning about pain and finally they decided to go in because they thought they saw a couple inches of "something"
growth in intestine was larger than expected…melanoma was wide spread
-resected all of ascending and transverse colons…that is 2/3 of large intestines
-procedure called a right hemicolectomy & bowel resection
-tumor size of large grapefruit…some tumor still inside…unresectable…this was in Jan 2011…
She ended up in my sister trial of vaccine trial using peptides and MDX 1006 ( original anti pd -1)…she is doing well and her melanomas continue to shrink. She contiues in the booster phase of the trial getting anti pd 1 IV once every 3 months!
-
- March 11, 2012 at 11:10 pm
You are so lucky that they discovered the mets in the intestines. If you do a search on Rebecca and Bob you will find that he also had mets in intestines. He did have surgery (I think it was about 2 years ago) and has been NED ever since. He had the surgery done at NIH.
I had mets 2 different times in the bladder. The first tumor was 7 cm long but was not seen on PET scans or a CT that was done the day before a cystoscopy. Blood in the urine that did not show up as an infection and then had the cystoscopy. Because of the location they could not do a wide excision – next cysto is next week. I'm now at 6 month intervals.
I think this is why we call it as No Evidence of Disease. Scans just don't see through the bladder, intestines and the uterus the majority of the time.
Good luck that the Yervoy continues to keep the other tumors continues to work.
Linda
-
- March 11, 2012 at 11:10 pm
You are so lucky that they discovered the mets in the intestines. If you do a search on Rebecca and Bob you will find that he also had mets in intestines. He did have surgery (I think it was about 2 years ago) and has been NED ever since. He had the surgery done at NIH.
I had mets 2 different times in the bladder. The first tumor was 7 cm long but was not seen on PET scans or a CT that was done the day before a cystoscopy. Blood in the urine that did not show up as an infection and then had the cystoscopy. Because of the location they could not do a wide excision – next cysto is next week. I'm now at 6 month intervals.
I think this is why we call it as No Evidence of Disease. Scans just don't see through the bladder, intestines and the uterus the majority of the time.
Good luck that the Yervoy continues to keep the other tumors continues to work.
Linda
-
- March 11, 2012 at 11:10 pm
You are so lucky that they discovered the mets in the intestines. If you do a search on Rebecca and Bob you will find that he also had mets in intestines. He did have surgery (I think it was about 2 years ago) and has been NED ever since. He had the surgery done at NIH.
I had mets 2 different times in the bladder. The first tumor was 7 cm long but was not seen on PET scans or a CT that was done the day before a cystoscopy. Blood in the urine that did not show up as an infection and then had the cystoscopy. Because of the location they could not do a wide excision – next cysto is next week. I'm now at 6 month intervals.
I think this is why we call it as No Evidence of Disease. Scans just don't see through the bladder, intestines and the uterus the majority of the time.
Good luck that the Yervoy continues to keep the other tumors continues to work.
Linda
-
- March 12, 2012 at 3:43 pm
I lost my husband to mets to the intestines. He was very sick at the end….and very weak, but had 4 years 3 months great life with no sickness at all. He did it His Way, and had QUALITY LIFE right up until it spread quickly…one surgery, way too late….Still missing you Jim. Love you forever.
Take Care and best Wishes,
Sherron, wife to Jim FOREVER (Nov 30, 2010) Profile is under my name Sherron
-
- March 12, 2012 at 3:43 pm
I lost my husband to mets to the intestines. He was very sick at the end….and very weak, but had 4 years 3 months great life with no sickness at all. He did it His Way, and had QUALITY LIFE right up until it spread quickly…one surgery, way too late….Still missing you Jim. Love you forever.
Take Care and best Wishes,
Sherron, wife to Jim FOREVER (Nov 30, 2010) Profile is under my name Sherron
-
- March 12, 2012 at 3:43 pm
I lost my husband to mets to the intestines. He was very sick at the end….and very weak, but had 4 years 3 months great life with no sickness at all. He did it His Way, and had QUALITY LIFE right up until it spread quickly…one surgery, way too late….Still missing you Jim. Love you forever.
Take Care and best Wishes,
Sherron, wife to Jim FOREVER (Nov 30, 2010) Profile is under my name Sherron
-
- March 12, 2012 at 7:54 pm
Kim,
did you look at the news where radiation was followed by ipi?http://vitals.msnbc.msn.com…maybe ask your doc to give you a good jolt of radiation…i know Tim posted what he knew of of Dr Wolchuks findings…hell, it's worth a try anyway…and i am sorry Sherron, but Kim doesn't need to know how you lost your husband to intestinal mets as she is fighting for her life right now even though i know you are heart sick and having terrible time with the loss, but POSITIVE ATTITUDE as MIRACLE…hard to do, but we must as it is component just as important as therapies…four part prong of healing is right thinking, right therapy, right diet and exercise, right purpose
boots
-
- March 12, 2012 at 7:54 pm
Kim,
did you look at the news where radiation was followed by ipi?http://vitals.msnbc.msn.com…maybe ask your doc to give you a good jolt of radiation…i know Tim posted what he knew of of Dr Wolchuks findings…hell, it's worth a try anyway…and i am sorry Sherron, but Kim doesn't need to know how you lost your husband to intestinal mets as she is fighting for her life right now even though i know you are heart sick and having terrible time with the loss, but POSITIVE ATTITUDE as MIRACLE…hard to do, but we must as it is component just as important as therapies…four part prong of healing is right thinking, right therapy, right diet and exercise, right purpose
boots
-
- March 12, 2012 at 7:54 pm
Kim,
did you look at the news where radiation was followed by ipi?http://vitals.msnbc.msn.com…maybe ask your doc to give you a good jolt of radiation…i know Tim posted what he knew of of Dr Wolchuks findings…hell, it's worth a try anyway…and i am sorry Sherron, but Kim doesn't need to know how you lost your husband to intestinal mets as she is fighting for her life right now even though i know you are heart sick and having terrible time with the loss, but POSITIVE ATTITUDE as MIRACLE…hard to do, but we must as it is component just as important as therapies…four part prong of healing is right thinking, right therapy, right diet and exercise, right purpose
boots
-
- You must be logged in to reply to this topic.