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carcinoid cancer (neuroendocrine tumors) with metastises to the liver

smangskau
Posts: 1
Joined: Nov 2008

Hello, I am a newly diagnosed cancer patient and am looking for support from anyone who is dealing with neuroendocrine tumors in the liver. I have undergone major liver surgery to remove 90-95% of my tumors in August, however, I will be dealing with the few tumors that are left. I am interested in finding out what treatments you have had and how sucessful that have been for you.

NETsurvivor's picture
NETsurvivor
Posts: 16
Joined: Oct 2008

Hi! I have pancreatic neuroendocrine tumors originating in the pancreas with mets to liver and spleen. I am not carcinoid but am islet cell NET. I would be happy to talk to you about my treatments if that would be helpful to you. I also could point you to some online groups that I use to keep informed about my and your types of cancer. I was not able to have surgery because my tumors are too large, too many, and involve blood vessels.

kosterhouse
Posts: 2
Joined: Aug 2009

Hi How are you doing and what treatments have you been on. my brother was diagnoised in may or 09. we are still going thru treatment process and his cancer is very agressive. which net do you have? he has glucaganoma islet cell.

mitzi100
Posts: 4
Joined: Jun 2006

There are some very good resourses on the internet. I strongly recommend caring for carcinoid.org, the carcinoid cancer foundation website and Susan Anderson's carcinoid site. Best of luck to you.

emma brown
Posts: 3
Joined: Dec 2008

I just had laparoscopic surgery to remove a lymph node and was told I had a Carcinoid tumor. They don't know the origin yet (said the lymph node could not be the origin). I am devastated and a little frightened and suffering from information overload. Is there anyone out there that can give me an idea of what comes next?

NETsurvivor's picture
NETsurvivor
Posts: 16
Joined: Oct 2008

I have a related cancer called neuroendocrine tumors or islet cell carcinoma. I suggest you join the ACOR carcinoid mailing group at http://listserv.acor.org/archives/carcinoid.html and also look at the website www.carcinoid.org. You will find lots of information there as well as some web conferences and video of other conferences for carcinoid that you can view.

I can understand how shocked and frightened you are at your diagnosis. I was diagnosed in February of 2007 and am doing great! I have come to believe that my experience with this type of cancer is much better than what some others face ... especially other forms of pancreatic cancer. I hope that as you adjust to your diagnosis and begin your treatments that you will find blessings along the journey. Feel free to friend me if you would like to correspond.

emma brown
Posts: 3
Joined: Dec 2008

Hi Net Survivor,

Your words were very encouraging and I am beginning, through my faith in God and self-education to feel better about the journey. My first tests are scheduled for Monday to try to determine the levels of 5-HIAA in my urine and the CgA in my blood which will indicate the stage of the tumor. I also have to have several scans. Have you already been through this? I don't want to whine or become a communication burden but there are no support groups in NC and I feel desperate to talk with someone who has been through this. Sometimes health professionals are so sterile and aloof it is hard to find feelings and meaning in what is going on.

Thanks for responding and I hope you have a blessed holiday.

NETsurvivor's picture
NETsurvivor
Posts: 16
Joined: Oct 2008

Hi Emma,
The one wonderful part of having a rare cancer is connecting with others and sharing information. I am happy that you were encouraged. I know that I am so much better able to cope through the friends I have met through the internet. I can now add you to my list of friends :)

It is quite interesting that you bring up CgA and the 5-Hiaa urine test. I just had both of those done earlier in the week. I have been having some trouble with diahreea and also having my face turn red and hot for short periods. My oncologist ordered some tests to see if these symptoms are carcinoid syndrome. I have not received the results yet. I go to the lab every week and so will try to see if the results are in on Monday. The urine test was a hoot! I had the biggest jug ever to collect everything for 24 hours. I stayed home and it was really no big deal.

I have CT and PET scans regularly. I also have had an MRI and several other tests. I do not mind the tests. I know some people get claustrophobic or nervous. For me, it is just a nice rest while they scan. The contrast they give you with the CT is kind of strange as you can feel it traveling through your body. It is warm and I actually kind of liked it. It was interesting to me to be able to see how fast it moves through the body.

Hope this all helps. I will send you a friend invite and would like to keep in touch. Hope you had a blessed holiday as well!

Lshupenc
Posts: 4
Joined: Mar 2009

After reading your posting I was taken back to when my journey began Nov 2005. All the testing and blood work. The anxiety and the surreal feelings that have entered your mind. The one thing that you have to remember is that with something so rare the Drs have to do their homework and each person will probably respond differently to treatment. Just know that you are not alone I have walked this road before you and the path may not be as travelled as most, but I am here if you need a friend or questions. have a blessed day and enjoy the small things

Lshupenc
Posts: 4
Joined: Mar 2009

Hi Emma, I was going to say it strange that I read your posting, but I am like you God has a plan. I tell you a little about myself. In 2005 I was working as a police officer in a large NC city. Around Mother's Day I started to feel bad and that began my journey. It seemed that every week I had a new symptom and I thought I was losing my mind. Having a wonderful family Dr. she did not give up on me. Eventhough I was at a medical apt every week (it seemed). Through the process of elimination I was told I had pancreatic cancer Stage 4, 6 months at most. Went to my 1st onocologist apt that day and the next day scheduled for a biopsy and an outpatient procedure for a portacat. After the biopsy, I got a call on a Sat and was advised that the lab at the hospital and Seatle did not confirm pancreatic, but indeed it was the rare stuff. I have 4 tumors in my liver with is about 80% diseased ( not a candidate for surgery). The 2 largest tumors are about 3 cm in size. I take a Sandastaton shot every 28 days for help with the symptoms. At this time I take 2 chem pills at night Thalidamid and Temadar ( this with and anti- nausea pill also).this past year I had 2 procedure a called radiation embolization,( this is where they went through the femur artery into my liver and blasted it with radiation. This procedure was done in June , with good results, after a few months the CT scan showed the cells in the larger 2 tumors were dying. The next one was done in Oct. Where less radiation was used ( because of how my body responded to the first one) The next Ct showed no change which was a little disappointing, but on the other hand there is no new stuff to deal with.

So as you see, I have walked this road and I can honestly and sincerely say I know exactly what you are going through.

Be encouraged that you are not alone, when I feel that way I re- read the poem " Footprints in the Sand"

I pray you have a day of joy and may blessings

blpm72
Posts: 6
Joined: Jun 2009

Hi everyone. I am new to all of this. My 66 yr old mother was recently diagnosed with neuroendocrine carconoid cancer, a rather lagre tumor was found on the pancreas, and has spread to the liver. This all started in early May with her primary doctor finding something and after meeting with our first oncologist who recommends chemotherapy, our second opinion is recommending embolization for the liver tumors, and we'll have to see what happens with the pancreas as the tumor is too large for surgery resection. I find this hard to believe. Is there something besides traditional chemotherapy that would help kill the tumor on the pancreas such as shots, pills? Any suggestions, thoughts would be greatly appreciated.

lindamccb
Posts: 4
Joined: Nov 2008

Hi!
I too have recently (Dec,08) undergone liver resection for neuroendocrine cancer. I still have a couple of spots elsewhere and do not know the exact treatment to follow-up with. However, I do know that the specialist at MD Anderson Cancer Center where I am being treated have told me the possible treatments are a special hormone injection once a month for 1-2 years(which has been very successful controlling the cancer and much less invasive), chemo, radiation, or surgery.
There are wonderful doctors at here who are very knowledgeable about our disease. "Keep your chin up" and I hope you have a successful and happy outcome.

Linda Mcc-b

aksteve's picture
aksteve
Posts: 3
Joined: Oct 2006

Hey guys, i am an NET (malignant Insulinoma) survivor too. the ACOR site that was referenced earlier is a great site. linda, is the shot you are on Sandostatin? i am on 30mg LAR every three weeks, and it seems to be helping. i still have a few issues with the blood sugar levels, but part of that is dumping syndrome from the Whipple surgery. i had mets to the Lypmh nodes and duodenum, but nothing to the liver! WOO WOO

anyway, i would love to swap stories and ideas. there are some great new treatments coming out that are getting great reviews such as PRRT (though it is only available overseas). im excited to see what other new treatments are in the pipeline!

regards,

steve taylor

green50
Posts: 318
Joined: Feb 2008

There was a gentleman in his 60s I believe article was in Readers Digest. He had chemo put in liver directly with what they called "bullets" which had the chemo. He had to have done every so often. The Dr is in Chicago. May have to look up Oncologist dealing with liver of direct chemo into liver. Its over three years later and he said it made him tired but he played golf. I dont know if this helps but I noticed question thought I would give info. I am a stage 3 ovarian patient which I Have been on chemo off and on seven years. I get tired but doing good I am still here. Probably had cancer 11 years with precancerous conditions. Again hope info might help it maybe what Linda was talking about. All take care
Prayers and Hugs
Sandy

mr steve
Posts: 286
Joined: Sep 2009

My wife was dx in march of 2008 with net primary in the pancrease with mets to the liver. She too went thru a modified whipple in April of 2009, now they found spots on her ovaries and well be having surgery next week. Did you have any symtoms before you stated on the Sando?

Steve

Lshupenc
Posts: 4
Joined: Mar 2009

I am also a part of the select few. I was diagnosis 2005, and I take a hormone shot called Sandastaton, This only controls the systems, ( hot flashes, stomach issues ect). I have 80% diseased liver, therefore I am not a canidate for surgery. This past year I had 2 radiation embolimzation treatments at Carolina Medical Center in Charlotte. There as been some cells that have died , but at this point they are unchanged. I have no new tumors and no new growth. My Dr. has me on Tholidmid ( Pill form) every night and Temedar (pill form) on a 7day on 7day off cycle. I have been on this road for a while and hope that some of the info I have given you helps. Stay well and blessed

blpm72
Posts: 6
Joined: Jun 2009

Can you tell me more about the injections you received?

Thank you,
Brian
Chicago, IL

BackwashJoe
Posts: 1
Joined: Jul 2009

Hi. My stepmom was diagnosed in May 2008 with a carcinoid tumor in her intestines. She has been receiving Sandostatin injections since December '08. After a trip to MD Anderson in April 2009, we learned that the tumor has spread to several other organs and that it did originate in the intestines. Chemicals released by the tumor damaged one of her heart valves, producing a bad heart murmur. She had hear valve replacement surgery in June at the Medical Center in Houston. Since then she has been getting stronger. The effects of the heart murmur were much worse than the cancer.

See her get stronger each week made me wonder, what will it be like when the cancer does finally worsen and make her sick, like the heart murmur? I have not been able to find any information on the internet about the late stages of this type of cancer. Does anyone have any information about this, or know where to look? I'd like to help my Dad plan for when my stepmom starts to feel worse again.

Thanks.

renalcarcinoidguy's picture
renalcarcinoidguy
Posts: 14
Joined: Aug 2009

Hi, i have neuroendocrine carcinoma renal carcinoid. I have been through 2 clinical trials @mdacc from 05 to 09. The injection mentioned in this post is Sandostain Lar typically 30 but can go from 20mg to 60mg. It works on symptoms but tudies have shown it may inhibt midguy tumors. I have a detailed blog (my history is on the first 4 entries on the blog August 08). It has a number of links including to all the carcinoid foundations and a number os studies on lar including a link on sando as fyi. My blog is

www.renalcarcinoid.com

I am currently undergoing PRRT treatment in Europe which is the most promising and effective systemic treatment relative to studies available. I have a ton of information on this treatment also. Look under PRRT on the top of the blog there is a search egine for the blog itself.
I accumulated the informtion for myself and to share with others. I literay have been through hell and wanted to share the path I took and hopefully others can pick up something and sharein return.

Btw, currently, I am going to Bad Berka with Dr richard baum who has a extenisve conference video of 1 hour again on the site.

Good luck to all of you and glad to charge information if need. Stay strong!

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