Carcinoid Tumors

I am just wondering if there are any other carcinoid patients here.  I was diagnosed in January 06 in Houston and told they could not find the primary and I have metasasis to the liver.  I saw a surgeon who told me I was not a candidate for srugery because I had tumors in both lobes of the liver.  I was told he could do radiation treatments but it was very strong and I would not be able to be around my family for about two weeks.  After much prayer, I opted not to do that.  We continued researching this type of cancer and kept crossing a couple of doctors names - Dr. Warner and Dr. Woltering.  I saw D. Woltering in July 07 and he works with a team of doctors that specialize in this type of cancer.  I was told that i was a candidate for surgery and that they really needed to locate and remove the primary site.  I had surgery in August 07 (about two weeks ago).  The primary site was in the small intestines and it was removed along with my gall bladder and the largest tumor in my liver.  The surgeon told us that after 1-2 more surgeries to remover the liver tumors that I should be disease free.   I would just like to encourage anyone with this type of cancer - please research research research.  Educate yourself as much as possible and don't give up until you explore all of your options.  My prayers to you!!  Keep your Faith - God is Faithful

Keith

Congratulations on doing your research and finding other options!  I had carcinoid tumors in my liver (both lobes) from a neuroendicrine tumor in my pancreas. I had resections, chemo-embolizations, and finally a liver transplant in 2005.  Since the liver always regenerates, there is always a chance of recurrence if a cell was missed.  In my case, my liver is disease-free, however, there is always a chance that cells will pop up in my primary site, as they did a few years ago.  Research nutrition, as well, and how to strengthen the immune system to fight off cancerous cells.  Continue to educate yourself on new treatments, doctors, medicines, nutrition, etc.  I feel I'm more knowledgable than some of my doctors about some of these issues and it has helped me make sound decisions on my healthcare. 

hello there... it so nice to read what u have shared well i am from india and my dad is facing the same problem he is have carcinoma of the bladder with liver mets on both lobes and bone mets in spine and shoulder can you help me by providing some knowledge orasking your doctors if there is anything that can be done to give my dad a few more years to live ... please if you can provide some details i will be greatful my email id id --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--i will wait for your reply..

I am a carcinoid tumor survivor.  I live in Dayton, OH.  My first tumors were found in July 2002.  I have had extensive surgury (removed 95% of my stomach, 65% of my pancreas, all of my spleen, and gall bladder).  I have had a HACE procedure (cutting off the blood supply to the tumors in the liver and have chemo beads placed directly on the tumor site).  I have also had a regimn of chemotherapy (Xeloda and Temidar).  In August 2007, I was told that the tumor "threat" has been signaficantly reduced since my last PET scan in October 2005.  I wholeheartedly recommend "therapy" through nutrition, exercise, healing meditation & visualisation, power of the mind, and most of all prayer.  And lots of it.

 

If you ever need to talk, my e-mail address is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

.  Please put carcinoid pal in the header - otherwise I won't open the e-mail until I know your handle. 

 

I am always interested in hearing about new or different treatments.

 

Beth

If you research the internet there is actuallly alot of information out there.  I suggest you visit the website for the carcinoid foundation.  My doctors are in Kenner, Louisiana - Dr. Woltering, Dr. Boudreaux and Dr. Wang.  They are wonderful and very knowledgable with this type cancer.  I can only tell you that you really need to research and educate yourself as much as possible becuase many times the local oncologist are not very knowledable about the treatments available for this and they tend to recommend traditional treatments.  I was also told that I was not a candidate for surgery, but here I am about one month after surgery and doing very well.  I wish you the best of luck!!  Please also research the role of nutrition as well - that is very important.  I was also taking some natural supplements as well - including - Poly MVA  (please search this on the internet), Juice Plus.  I found alot of nutritional information on the website of Dr. Lorraine Day.   I have not taken but I have heard alot of good information about glyco-nutrients through a company called Mannatech.  I hope this is helpful!! 

 

On 9/5/2007 Live4him wrote:

I am just wondering if there are any other carcinoid patients here.  I was diagnosed in January 06 in Houston and told they could not find the primary and I have metasasis to the liver.  I saw a surgeon who told me I was not a candidate for srugery because I had tumors in both lobes of the liver.  I was told he could do radiation treatments but it was very strong and I would not be able to be around my family for about two weeks.  After much prayer, I opted not to do that.  We continued researching this type of cancer and kept crossing a couple of doctors names - Dr. Warner and Dr. Woltering.  I saw D. Woltering in July 07 and he works with a team of doctors that specialize in this type of cancer.  I was told that i was a candidate for surgery and that they really needed to locate and remove the primary site.  I had surgery in August 07 (about two weeks ago).  The primary site was in the small intestines and it was removed along with my gall bladder and the largest tumor in my liver.  The surgeon told us that after 1-2 more surgeries to remover the liver tumors that I should be disease free.   I would just like to encourage anyone with this type of cancer - please research research research.  Educate yourself as much as possible and don't give up until you explore all of your options.  My prayers to you!!  Keep your Faith - God is Faithful

Keith

Hi Keith,

My name is Sherry and my husband has had carcinoid/neuroendocrine tumors for 7 years now.  It has metastisized to the lymph, heart, liver, skin, etc...  the doctors say he has no hope at this point and gave him 6 months to a year left.  This was in July.  He was a potential candidate for an experimental drug at UCSF comprehensive cancer center with Dr. Alan Venook.  Because the tumors are surrounding his pulmonary arteries, he did not qualify for the drug.  To big of a risk of death.  BUT, maybe you can benefit from this.  Again, the Dr.'s name is Alan Venook and he is a specialist in Carcioid/Neuroendocrine cancer.  He is located in San Francisco at the Mt. Zion Comprehensive Cancer Center at University of California San Francisco.  I believe the trial is still open.  Apparently, there was marked success with the new drug.

God Bless you Keith and it sounds like you are on a good path!!!  Please forward this information regarding UCSF to anyone you think might benefit.

Sherry 

 

 

 

I read you post about your dad. My name is Steve and my brother in law has an atipical carcinoid tumors. He is an ER doc in Hawaii and is getting very little help from specialists in Hawaii. He narrowed down treatment to radioactive injected Indium Yttrium which is not available in the states. Is this the treatment at UCSF and if so do you no anywhere in the world where he can go to get this treatment.

 

On 9/5/2007 Live4him wrote:

I am just wondering if there are any other carcinoid patients here.  I was diagnosed in January 06 in Houston and told they could not find the primary and I have metasasis to the liver.  I saw a surgeon who told me I was not a candidate for srugery because I had tumors in both lobes of the liver.  I was told he could do radiation treatments but it was very strong and I would not be able to be around my family for about two weeks.  After much prayer, I opted not to do that.  We continued researching this type of cancer and kept crossing a couple of doctors names - Dr. Warner and Dr. Woltering.  I saw D. Woltering in July 07 and he works with a team of doctors that specialize in this type of cancer.  I was told that i was a candidate for surgery and that they really needed to locate and remove the primary site.  I had surgery in August 07 (about two weeks ago).  The primary site was in the small intestines and it was removed along with my gall bladder and the largest tumor in my liver.  The surgeon told us that after 1-2 more surgeries to remover the liver tumors that I should be disease free.   I would just like to encourage anyone with this type of cancer - please research research research.  Educate yourself as much as possible and don't give up until you explore all of your options.  My prayers to you!!  Keep your Faith - God is Faithful

Keith

Hi Keith,

 I had some questions aboout Dr. Woltering however, I'm not sure you are still reviewing messages on this site.  Please let me know if you are as I'm hoping you can give me some advice about Dr. Woltering and Carcinoid tumors.

 

Thanks

Karen

Yes I do still monitor this site. I am still seeing Dr. Woltering/Dr. Boudreaux/Dr. Wang all in the clinic in New Orleans.  I just had my second surgery 4/23.  This surgery removed the right lobe of my liver due to multiple tumors.  I feel these doctors are wonderful at what they do.  They truly love what they do and that is obvious when you are around them.  I feel they are on the cutting edge of the latest treatments for carcinoid cancer.  I have no reservation in recommending them to anyone with carciniod.  I will be happy to answer any questions that you may have.  Were you recently diagnosed? 

No, I was not recently diagnosed but my father was.  He has the carcinoid tumors in his liver.  The most recent CT Scan showed a large one in his right lobes and many small peas size ones throughout both lobes.  He saw a doctor in Pittsburgh that has suggested Chemo-Embolization.  I just am not sure if this the best option right now and quite frankly this doctor doesn't really have the time to sit down and explain all options to us.  A concern I have is that one of fathers lymph nodes is affected.  Originally they thought surgery was an option for his liver and they would just remove the lymph node during that surgery.  Now that he have been told the surgery is not a option they seem to be just forgeting about the lymph node.  That concerns me! Do you think Dr. Woltering would be will to look at my fathers CT Scan and give us his opinion on treatment options?  If so could you forward a phone number and address for Dr. Woltering.

 Thank you for your time.  I am glad to hear your surgery went well.  I will keep you in my prayers!

Karen