END STAGE OF CARCINOID

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RE: END STAGE OF CARCINOID

by snmm2367 on Wed Oct 08, 2008 12:00 AM

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I am sorry to hear about your wife being in hospice.  I have this diease for the last 6 years and its getting the best of me now....it won;t be long until I have to make decisions that I don;t want to make.  I realy went on disability 7 months ago because of the cancer/drug I was taking was terrible on me.....I hope she and you manage without pain.  God bless you all

Steve ps I included my blog which outlines my history with this beast

http://renalcarcinoid.blogspot.com/

On 9/11/2008 blueduck67 wrote:

My wife was probably born with lung carcinoid.  She is 49 and on hospice. Since March she has been in the hospital about 10 times.  She had flushing, diarrhea, shortness of breath,  She is in chronic a fib has CHF,  type 2 diabetes she is on 16 liters of oxygen and I keep her comfortable with morphine and ativan

 

RE: END STAGE OF CARCINOID

by Siegrun on Fri Oct 24, 2008 12:00 AM

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On 6/8/2008 Miss Geri wrote:

 

Hello all,

I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this  cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!!  Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them.

This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.

HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.

Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July.

 

Miss Geri


Hi Miss Geri

I am sorry that your husband is so ill. This letter is meant to give you some courage.  I also have carcinoid syndrome a condition that I also had been living with for probably 20 years before it was diagnosed.  After diagnosis 6 years ago  I had a so called debulking surgery, been on a trial  with Sutent and had 12 sessions of chemotherapy with Avastin and Oxilaplatin.  Now  I am considered stable and get just once a month a Sandostatin shot. I have accepted the fact that I will have to live with this condition.  I am always telling myself that I have cancer but cancer does not have me.  I continue to live my life with joy.  My goal to climb 3 mountains that are over 10 000 feet high  keeps me going.  When I was first  diagnosed my doctor told me that I would   probably die from something else.  I did a lot of research  about carcinoid syndrome and found out that years ago it was not even considered a cancer.  I hope that you find the right medicine and the right doctor. I am a patient at USC  in Los Angeles and I am very happy with their approach.  Prior to a change in treatment cases are reviewed by a board . Your letter sounded so hopeless.  However  there is lots of hope for your husband.  My husband is my cheer leader and you have to be that for your husband.  Hope can move mountains. 

Siegrun 

RE: END STAGE OF CARCINOID

by John_J_AKA_Ice_Man on Sat Nov 29, 2008 12:00 AM

Quote | Reply

 

On 6/8/2008 Miss Geri wrote:

 

Hello all,

I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this  cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!!  Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them.

This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.

HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.

Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July.

 

Miss Geri


Hi Miss Geri,

 

 I have been fighting this Carcinoid Beast for ( From what I can figure ) 25 to 30 years but only the last 12 years knowing what I was actually fighting. I have been to many doctors, some of them in the Chicago University training hospitals. Since I found Dr's Woltering, Anthony, in New Orleans in 1997, then later on in the years have added 2 gifted surgeons Dr's Philip Boudreaux & Wang. I have been going down there at least every year from then on. Since I have going down there and sitting in the office talking to people, I have meet Noid friends from all over the world that have come there for treatment. My last 2 surgeries 2006 & 2007, both long surgeries but the one in 2007 was 16.5 hours and the longest surgery they had done at that time. I was told at one of the University hospital in Illinois prior to the 2006 surgery that I was inoperable and to go home and get things in order. If I would have done that I would not be writing this reply today. I only went to the Chicago hospitals because they were closer ( NOLA is 1000 miles each way ). I moved to New Orleans due to more growth one year after my 2007 surgery and did not want to go through another surgery at that time. They suggested a couple of Clinical Trials.  I'm from Northwest Indiana originally and now live down here in NOLA close to my doctors. I have been stage 4 since 2006 and am currently on a Clinical Trial (RAD001 a Targeted Therapy ) I've been stable going on 7 months now. I'm feeling really good except for the extreme weight loss from the last 2 surgeries.

 My suggestion is just one, that would be to Call Doctor Woltering and think about a second opinion. Just Google Dr. Eugene Woltering and see what he has done. My opinion is his team ( The Dream Team ) is second to none and he would be a person to seek out for more information.

 

His Number is, 504-884-3555 and he has no problem with me giving out his number. Don't call on Tuesdays though, office hours. In my opinion, This is the most knowledgeable team of Carcinoid Experts you will run across under one roof in the USA.

John J. McCoy 

 

RE: END STAGE OF CARCINOID

by Miss_Geri on Sat Nov 29, 2008 12:00 AM

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HI John, there has been a huge update from this post..my husbands carcinoid has stabled out..and yes both my husband and I have had a 45 min conversation via phone to Dr Woltering..he's stumped at to the symptoms my husbands is still having..all my husbands dr's agree that it's not carcinoid..his Endocrinologist is looking at his pancreas for beta cells caused by a condition called Nesidioblastoma which is more rare than carcinoid? we are waiting a rare test to determine for sure called a calcium challenge. Strangely enough this condition reacts to the drug octreotide to like carcinoid..my husband is getting a HUGE AMOUNT of octreo drug but seems to have a cut off point where my husband still has non functional days..like staying in bed all day. So we'll see when he gets this test done.

 

best of luck to you and as for your doctors? you sir are in great hands ;-)

 

HAPPY HOLIDAYS!!

 

Gerianne

RE: END STAGE OF CARCINOID

by rae_ann on Sat Oct 17, 2009 12:00 AM

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Will you please tell me what carcinoid crisis is the dr said my husband could go into carcinoid crisis but wont tell us what it is or what to look out for Thanks My husband was diagnosed in July 2009 has had 2 surgerys intensive care twice multiple infections from the surgery and he still is not doing well. He looks very pale like so many cancer patients I have seen.I am a nurse but this is baffeling to me.I do worry about him because he has really went down hill since the surgery.This is my love we are talking about and the unanswered questions and uncertainities are very stressful Thank you Rae

RE: END STAGE OF CARCINOID

by BettyJo1976 on Sun Sep 08, 2013 05:03 PM

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Hello my name is Betty Jo. I read your story Miss Geri and wanted to know where you guys are now. My husband has the same cancer and is suffering what your husband did. May I ask where you are now in this disease?

RE: END STAGE OF CARCINOID

by ombansal on Sat Nov 02, 2013 02:51 PM

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On Nov 29, 2008 12:00 AM John_J_AKA_Ice_Man wrote:

 

On 6/8/2008 Miss Geri wrote:

 

Hello all,

I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this  cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!!  Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them.

This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.

HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.

Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July.

 

Miss Geri


Hi Miss Geri,

 

 I have been fighting this Carcinoid Beast for ( From what I can figure ) 25 to 30 years but only the last 12 years knowing what I was actually fighting. I have been to many doctors, some of them in the Chicago University training hospitals. Since I found Dr's Woltering, Anthony, in New Orleans in 1997, then later on in the years have added 2 gifted surgeons Dr's Philip Boudreaux & Wang. I have been going down there at least every year from then on. Since I have going down there and sitting in the office talking to people, I have meet Noid friends from all over the world that have come there for treatment. My last 2 surgeries 2006 & 2007, both long surgeries but the one in 2007 was 16.5 hours and the longest surgery they had done at that time. I was told at one of the University hospital in Illinois prior to the 2006 surgery that I was inoperable and to go home and get things in order. If I would have done that I would not be writing this reply today. I only went to the Chicago hospitals because they were closer ( NOLA is 1000 miles each way ). I moved to New Orleans due to more growth one year after my 2007 surgery and did not want to go through another surgery at that time. They suggested a couple of Clinical Trials.  I'm from Northwest Indiana originally and now live down here in NOLA close to my doctors. I have been stage 4 since 2006 and am currently on a Clinical Trial (RAD001 a Targeted Therapy ) I've been stable going on 7 months now. I'm feeling really good except for the extreme weight loss from the last 2 surgeries.

 My suggestion is just one, that would be to Call Doctor Woltering and think about a second opinion. Just Google Dr. Eugene Woltering and see what he has done. My opinion is his team ( The Dream Team ) is second to none and he would be a person to seek out for more information.

 

His Number is, 504-884-3555 and he has no problem with me giving out his number. Don't call on Tuesdays though, office hours. In my opinion, This is the most knowledgeable team of Carcinoid Experts you will run across under one roof in the USA.

John J. McCoy 

 

hi , 

 i am in india and far and far away from dr waltering, who is an authority on carcinoid, perhaps the last word. i now have liver mets all over both lobes and they are huge some 6 inches big. i have gone through all that i could, like chemo embulisation, Lu177 PRRT, 6 cycles, and plenty of oral chemo like affinator and sutent. been on sandostatin throughout. docs say Y90 will not work on me as my tumours are mostly cystic. so, they have no further options for me. thats why the question, whats the end game. i wonder

RE: END STAGE OF CARCINOID

by yankeefan on Mon Jan 06, 2014 04:12 PM

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i have all the symptoms of this dreaded disease....flushing, loose BM'S, tachycardia, now my balance and walking are being effected. my CGA and 24 urine tests both came back negative. i'm having the octreo scan tomorrow. needless to say i'm scared as i've been about anything in my life, i'm 66 now.  i've spoken with dr woltering, he was reassuring regarding the negative results of both my tests. from what i've been reading those tests only measure serotonin levels. i guess i'm just looking for feedback from all of you. god bless and happy new year to all.

RE: END STAGE OF CARCINOID

by lloyd1 on Wed Mar 12, 2014 11:35 PM

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Hello,My husband passed away two years ago after a 5 year battle with carcinoid.I recommend you read Sunny Carney's book called "the sunny side of cancer" it is a heart wrenching story of a mother trying to live for her children.She was an isnpiration to all of us and you will be able to follow the treatments she had that kept her alive a very long time!

Good luck to you,

Judy

RE: END STAGE OF CARCINOID

by shrnkrap8 on Mon Mar 24, 2014 12:46 AM

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My husband also has carcinoid cancer. He was diagnosed 2 weeks after we moved to Charlotte, NC at stage 4 with mets to the liver and bone. Apparently, docs in FL and PA all failed to recognize this terrible disease. That was a year and a half ago. He has been receiving Sandostatin and Xteva shots monthly. We've had some ups and downs during this time, but he always snapped back and was doing okay. Until this week, when he stopped eating, drinking. His hands, legs and feet are grossly swollen. He is sleeping constantly, and it's getting harder and harder to rouse him. I feel like he's actively dying. We have an 8 am appointment tomorrow morning to meet with his oncologist, and I'm wondering what I should do. Should I stop torturing him and just get a referral to Hospice?
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