Liver

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Liver

by Smith on Thu Jun 12, 2008 12:00 AM

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Hey,

My name is Debbie I have been diagnois with carcinoid cancer Sept. 06.  I am taking 2 injection of Sandostatin once a month and have had 2 chemolization, one of the right side and one on the left side of my liver.  My Dr. is wanting to do the right side again.  He is trying to stop the blood flow to the tumors and ease the side affects of the cancer.  They have label me at stage 4.  Is anyone going throught the same thing right now.  I don't mind the injections or the chemolization so much, but the side affects from the chemo does make me sick and loose alot of weight.  My hair is starting to thin now.  My last scans didn't show any change either way.  Should I take that as good news.  I really shouldn't be complaining, I know there are people who need help more than me.  I am not giving up or anyone who is going through cancer. I pray for everyone, especially little children.  When I go to my Dr. I always shoot little prayers to the people who look like they are suffering.  God bless them all.

RE: Liver

by debbysewing7 on Fri Jun 27, 2008 12:00 AM

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Hi Debbie, I'm Debby. I'm not on Sandostatin but I've had 2 chemoembolizations of the liver. My last one was in May of 2007 and the tumors that were embolized did shrink and I've been pretty good since then.

I've read of other people that have had several of these done as they can help with the syndrome and can stop the tumors from growing by stopping the blood flow to the tumors. Even though they're pretty rotten to go through it may be your best option to have another one.

Don't feel that you're complaining. The symptoms of this disease are rotten and most people don't understand them at all. In 2006 I became diabetic and lost 20% of my body weight because of the syndrome. The first chemoembolization I had was terrible, one of the tumors got infected and I was sick for quite a while but the second one went a lot better. I tried going on oral Sutent for a while but it didn't do any good and the tumors continued to grow. I lost most of my hair then but wasn't sure whether it was the embolization or the Sutent or the combo of both.

 Now I'm on Xeloda and the side effects are very minimal compared to the embolizations or the Sutent and you don't lose your hair. Don't get me wrong, there are side effects, they're just not as bad as the other stuff.

 It doesn't seem as if too many people post on here but I check into it once in a while if you want to share what's going on with you.

~ Debby

RE: Liver

by garzy on Mon Jun 30, 2008 12:00 AM

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On 6/27/2008 debbysewing7 wrote:

Hi Debbie, I'm Debby. I'm not on Sandostatin but I've had 2 chemoembolizations of the liver. My last one was in May of 2007 and the tumors that were embolized did shrink and I've been pretty good since then.

I've read of other people that have had several of these done as they can help with the syndrome and can stop the tumors from growing by stopping the blood flow to the tumors. Even though they're pretty rotten to go through it may be your best option to have another one.

Don't feel that you're complaining. The symptoms of this disease are rotten and most people don't understand them at all. In 2006 I became diabetic and lost 20% of my body weight because of the syndrome. The first chemoembolization I had was terrible, one of the tumors got infected and I was sick for quite a while but the second one went a lot better. I tried going on oral Sutent for a while but it didn't do any good and the tumors continued to grow. I lost most of my hair then but wasn't sure whether it was the embolization or the Sutent or the combo of both.

 Now I'm on Xeloda and the side effects are very minimal compared to the embolizations or the Sutent and you don't lose your hair. Don't get me wrong, there are side effects, they're just not as bad as the other stuff.

 It doesn't seem as if too many people post on here but I check into it once in a while if you want to share what's going on with you.

~ Debby

Dear Debby,

     Where did you have your embolization done?  My husband had his first regular embolization (not chemoemboliztion) done at the Moffitt Cancer Center in Tampa Florida on May 7th, 2008 just a few weeks ago.This was done on the right side first.  Now he is to go back to get the 2nd one done on July 9, 2008.  He too has questioned whether he should do the 2nd at least this soon.  He is just now starting to feel better. After the procedure he had extreme right shoulder pain that was unbearable for him, and chills with fever and an ache all over feeling.  His urine also turned brown, they said his billie rueben count was showing his liver was not functioning right.  They put him back in the hospital to monitor that.  They said his shoulder pain was reflected pain from his diaphram becoming inflammed from the procedure. He still has alot of discomfort in his liver and his shoulder and  has a terrible time trying to get comfortable to sleep.  He ends up sleeping most of the time in his recliner or on the sofa, he seems to sleep more sound there and does not toss and turn as much.  My husband was diagnosed with Neuroendocrine Carcinoid last Oct. 07, but we knew he had some kind of cancer in August as he had pneumonia and when they re-xrayed after he finished his antibiodic they saw a spot on his right lung(considered to be his primary site) and at the top of his liver.  After 3 negative biopsies, we were sent to North Side Hospital in Atlanta to an aggressive Oncology radiologist and he finally got a positive reading for Neuroendocrine Carcinoid and of course we had never heard of it before.  He has 3 large metastasis in his liver of 6,7&8 centimeters each. They told him due to the size of these he has had this cancer for 10 years.  Stage 4 has also been mentioned to us.  He too is on 30 mg Sandostatin Injections monthly.  We are hoping his 2nd embolization will not be as difficult and we have shrinkage after the following cat scan.  We see Dr. Larry Kvols and Dr. Jonathan Strosberg at Moffitt.

Gail & Garrett

 

RE: Liver

by garzy on Mon Jun 30, 2008 12:00 AM

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On 6/12/2008 Smith wrote:

Hey,

My name is Debbie I have been diagnois with carcinoid cancer Sept. 06.  I am taking 2 injection of Sandostatin once a month and have had 2 chemolization, one of the right side and one on the left side of my liver.  My Dr. is wanting to do the right side again.  He is trying to stop the blood flow to the tumors and ease the side affects of the cancer.  They have label me at stage 4.  Is anyone going throught the same thing right now.  I don't mind the injections or the chemolization so much, but the side affects from the chemo does make me sick and loose alot of weight.  My hair is starting to thin now.  My last scans didn't show any change either way.  Should I take that as good news.  I really shouldn't be complaining, I know there are people who need help more than me.  I am not giving up or anyone who is going through cancer. I pray for everyone, especially little children.  When I go to my Dr. I always shoot little prayers to the people who look like they are suffering.  God bless them all.


 

RE: Liver

by garzy on Mon Jun 30, 2008 12:00 AM

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On 6/30/2008 garzy wrote:

 

On 6/12/2008 Smith wrote:

Hey,

My name is Debbie I have been diagnois with carcinoid cancer Sept. 06.  I am taking 2 injection of Sandostatin once a month and have had 2 chemolization, one of the right side and one on the left side of my liver.  My Dr. is wanting to do the right side again.  He is trying to stop the blood flow to the tumors and ease the side affects of the cancer.  They have label me at stage 4.  Is anyone going throught the same thing right now.  I don't mind the injections or the chemolization so much, but the side affects from the chemo does make me sick and loose alot of weight.  My hair is starting to thin now.  My last scans didn't show any change either way.  Should I take that as good news.  I really shouldn't be complaining, I know there are people who need help more than me.  I am not giving up or anyone who is going through cancer. I pray for everyone, especially little children.  When I go to my Dr. I always shoot little prayers to the people who look like they are suffering.  God bless them all.

Dear Debbie,

     My husband has been diagnosed also with Neuroendocrine Carcinoid, primary being his right lung.  He is just recovering from his first Hepatic Arterial Embolization procedure, which he was very sick from afterwards.  That was done on June 4th, and he is due for his 2nd on July 16th of which he is very apprehensive.  We were told you have to do at least two to see if it is successful, you can't do just one and have it be successful.  He has 3  large metastasis of 6,7,&8 centimeters in size and has been told he has had this for approximately 10 years due to the size of the tumors.  He is inoperable because of the location of these tumors.  His lung is also inoperable due to the location.  His were not Chemoembolizations, they were hepatic arterial embolizations.  We have Dr. Larry Kvols and Dr. Jonathan Strosberg of Moffitt Cancer Center in Tampa, Florida.  Who is your doctor and where are your procedures done at?  We also do the Sandostatin 30 mg monthly injections, they seemed to have helped the symptons, but have not stopped the growth of the tumors, so we are hoping the embolization procedures shrink these tumors.  Did you have a fever and very high blood pressure after yours?  He also ached all over and his urine turned brown.  We were asked to be part of a clinical trial for Sutent also, but we declined due to traveling there more frequently for that. We have not been on any chemo drugs yet, although Xeloda and termador were suggested. He also experienced severe shoulder pain that we were told was from the diaphram being inflamed during the procedure, they called it referred pain.  Please let me know if you experienced any of this.  Gail & Garrett

 


 

RE: Liver

by debbysewing7 on Tue Jul 01, 2008 12:00 AM

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Gail & Garrett,

I'm in the greater Kansas City area and had my embolization done at Research Hospital. It's my understanding that the embolization of the right lobe is always the worst and the larger the tumor, the more troublesome it is. The larger the tumor, the more chemo they have to put in. Then as the tumor starts to die and pull away from the liver it causes more pain. In other words, this is kind of a no win situation for pain and being sick BUT when you start feeling better and the tumors show up as shrinking and dying, it is worth it.

 You mentioned stage IV Carcinoid. This doesn't necessarily mean for Carcinoid what it means in other cancers. Carcinoid is generally staged as Local, Regional, and Distant. Distant means it has metastisized to an area away from where the primary tumor was found. Example: my original was found in the juncture of my small and large intestines (ileum) and has metastisized to my liver so I'm considered Distant which would be stage IV if it were another cancer. But Carcinoid grows slower than a lot of other cancers so we've got time to decide on our treatments.

Your husband sleeps a lot? Yep, I remember doing that, days would go by and I didn't even remember them because I was asleep most of the time. And I have a very high tolerance for pain but the right lobe was terrible!!!  The left was not as painful and I didn't get quite a sick which I understand is the norm for some reason.

 So, I'd suggest your husband go for it as it's the best option for debulking tumors in the liver and once he gets better from the procedure he will feel it was worth it.

~ Debby

RE: Liver

by Katsen57 on Sun Jul 06, 2008 12:00 AM

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Hi Debbie,  I am a carcinoid patient . I had my primary found in the Cecum of the large intestine where it meets the appendix and small intestine.  I was first diagnosed in April '07 and have had it removed in NYC Mount Sinai Hosp.  I was consulted by the Most Recognized and knowledgeable expert Dr. Richard Warner who has been studying this disease since the Korean War.  He hase been in practice at Mt. Sinai since 1952.  I don't know where you have been treated but I would contact him if you want the best care.  I was on Xyloda and Temodar for 5 months but it didn't seem to be working so Dr. Warner prescribed Folfox and Avastin but my insurance will not cover it at all.  I have been through every appeal process and even to Attorney General for NY State but they will not over-turn the denial.  My External appeals told me I wasn't Syptomatic enough. So right now I am only being treated with injections of 40mg of Sandostatin. So much for having insurance (which is no insurance of getting the help you need.  but I feel good and I am working pretty much every day and I can do my every-day activities so I will be glad for that right now.  I just can't believe that my insurance wants me to be so sick in order for me to get treatment. And they probably won't approve anything else either.  My mother believes that maybe I am not ment to be treated with this toxic treatment since my CT Scan of May '08 recognized shrinking of some spots and no change of other Tumors on my liver since my last CT of Jan '08.  Or The Xyloda and Temodar only started to kick in just after I stopped taking it.  Who Knows?  The Xyloda wasn't bad at all I was working and doing my thing but as soon as I took the Temodar It made me sick on the first night and then I would feel rotten but I would just sleep for most of the time.  I took that for the last 5 days of the 15 day Xyloda every 2 weeks. 2 weeks on 2 weeks off.  Very minimal hair loss. no one ever noticed. I just noticed it in the shower but never clumps like in the movies.  My finger tips got very chaffey but not too bad.   Right now I am in a holding pattern with what to do but as long as the sandostatin is working than I am OK with that.    Good luck with all your endevors and God Bless.  Katsen57

RE: Liver

by Smith on Tue Jul 08, 2008 12:00 AM

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Dear Katsen,

Thank you for responding so quickly.  I am glad to hear you are doing well.  It sounds like the shots are helping you.  I really felt my best when I was only doing the sandostatin.  I just finish a 3rd chemolization on my right side of the liver.  I feel alright but feel better with just the shots.  Dr. Wang from CMC who is did the procedure.  There has been no change in the tumor 's size but I guess I should take as good news.  My onocologist is Dr. Fernette at Blumytha Center in Charlotte.  But I would like to hear other options.  I am glad you contacted me and gave me more hope.  I just don't want to go through another chemolization.  Please stay in touch.  I am 55 yrs old with a beautiful grand daugher Isabella who just turn 3 and she has a new baby sister coming in Oct who will be Anna-Grace.  I want to be able to feel good and enjoy them.  I don't want to sound selfish, but if this procedure is not working just let me take the shots and enjoy my grand daughters as long as God is willing.  Thank you again, and God bless you and your family.

Debbie

RE: Liver

by Katsen57 on Sun Jul 13, 2008 12:00 AM

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Hi Debbie,  I believe that God has a plan for eveyone.  I have only been married for just under 2 yrs. and no children.  A month before I was diagnosed at age 40 I got the OK from my OBGYN that we could begin to start a family. For some reason I was delt a serious and mostly unknown disease.  Why me? Why now?  I can only think that there is something I should be doing.  I am not sure what but I can only be greatful that I am only thirty five miles from the best experts in this field of rare cancer and from the start I was correctly diagnosed and sent to the best doctors modern medicine can offer.  So until I find my purpose I will fight this disease head on.  I am not so worried about the disease as much as not being covered by my so called insurance company.  They would rather see me severely ill and/or dead so they won't have to bother shelling out any money for treatment.  Thats what scares me the most.  The stress of not being able to afford the medical bills plus all the other bills that everyday life costs is most bothersome to me.  I suggest that you find a support group that you can attend and don't be affraid to discuss your situation with the other members.  I found that it is most helpful and informative to find out what other treatments and situations others have encountered.  It helps a lot and you discover other options and vital information that websites don't mention.  Best wishes and good health.  Katsen57

RE: Liver

by Smith on Mon Jul 14, 2008 12:00 AM

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On 7/13/2008 Katsen57 wrote:

Hi Debbie,  I believe that God has a plan for eveyone.  I have only been married for just under 2 yrs. and no children.  A month before I was diagnosed at age 40 I got the OK from my OBGYN that we could begin to start a family. For some reason I was delt a serious and mostly unknown disease.  Why me? Why now?  I can only think that there is something I should be doing.  I am not sure what but I can only be greatful that I am only thirty five miles from the best experts in this field of rare cancer and from the start I was correctly diagnosed and sent to the best doctors modern medicine can offer.  So until I find my purpose I will fight this disease head on.  I am not so worried about the disease as much as not being covered by my so called insurance company.  They would rather see me severely ill and/or dead so they won't have to bother shelling out any money for treatment.  Thats what scares me the most.  The stress of not being able to afford the medical bills plus all the other bills that everyday life costs is most bothersome to me.  I suggest that you find a support group that you can attend and don't be affraid to discuss your situation with the other members.  I found that it is most helpful and informative to find out what other treatments and situations others have encountered.  It helps a lot and you discover other options and vital information that websites don't mention.  Best wishes and good health.  Katsen57

Dear  Katsen,

I am so happy for you & your husband.  God has a purpose for us all.  I am glad to hear you are trusting in God. I go back to see my oncologist Aug. 20.  Dr. Fernette is a good Dr, but I still would like a 2nd opinion especially if there might be other options out there for me.  The chemolization are not very pleasant.  It's just how it brings you down for about 3 weeks.  The way my surgeon, Dr. Wang it might be a life long thing I might have to do. (rest of my life).  Dr. Wang told me he had people in their 80's.  I don't see how they do it, other than their strong faith with God and to live. I really don't consider myself a big baby.  But there has to be other options.  I try to live a normal life and put the cancer behind my mind.  Before I did this last chemolization, I ran a 5k @ River Hills, and it doesn't get the name River Hills for nothing:)  I came in  2nd in my age group.  ALL I COULD DO WAS THANK GOD! I couldn't thank enough.  To me the cancer is the devil and when I do get scared about what I am dealing with I tell the devil to flee from me b/c I know God would not put that worry on me.  I am trusting in God, with him I can do anything and go through anything.

God bless you and your family.

Debbie

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