Neuroendocrine Carcinoma

tebolt

survival wisher said:

Pancreatic neuroendocrine Tumour metastatized to all lymph nodes
I am 25 years old Dentist from Egypt,I was recently diagnosed with pancreatic neuroendocrine tumour of Pancreas,The Mass measures about 7 X 5 cm in both body and tail of pancreas.the tomour cells metastatized to all body lymph nodes but no bone or other organs involvement.
I just want to ask about if there is any oncology center in any place in the world is specialized in this type so I can go there.because the health care system is very bad here in Egypt.

India

Dr. Wolin was just at a conference in India for this cancer.  I live in California and he said that the place in India is about ten years ahead of us.  Can't remember the name of the city but he said it was beautiful - a planned city - nothing like the rest of India -

tebolt

maricarmen said:

Start Center in San Antonio.

Hello, my brother has lung carcinoid.  He lives in San Antonio. Wondering what are the best doctors or centers in SA to treat him and help manage this disease. Is the Start Center a good place for him?  Would appreciate any suggestions, advise, guidance.

Thank you.

doctors

I think if you look up Caring for Carcinoids there is a list of doctors all over the country.  Not a lot of them but they are spread out.

palomi

My father

Hello to everyone, I'm living in spain, my father has a neuroendocrine carcinoma in the Vater Ampulla, and the oncologist told us, that the only treatment by the moment here in my hometown, Zaragoza, is chemotherapy for this types of tumors. He is havind a recovery after 4 weeks almost from the Whipple procedure. All that I want to tell you guys is keep on fighting. He is not well today, had fever, 38,4ºC as maximum which gets downs with paracetamol (1mg). In some moments that he is receptive to it i give him some reiki (japanese bioenergetic treatment which is prescribed for enduring and make the natural defenses of our body strong) treatments (as much as he can keep his position). 

I hope tomorrow will be a better day to him and we can find some formula for his weight. 

Life is a gift, keep on smiling guys!. I give you my energy. 

Thanks in advance for read my testimony and excuse me for my language as I'm studying English. 

Best of Luck!

God save us!

Paloma

palomi

AnneLene said:

Check out this adresses:

The internet link is to the University of Uppsala in Sweden and I think they are quite good, but you can take a better look (they are togheter with the hospital Karolinska in Stockholm) . The information is also in English and I think they also treat people from the US, so you can maybee try them (if not try to ask were!)!


http://www.akademiska.se/endocrinetumors/
http://www.medsci.uu.se/forskning/Cancer/Endokrin_oncologi/


Good Luck

Anne Lene

Thank you!

Thank you!

na123

Neuroendocrine Carcinoma

Hi!

 

    I’m hoping this is the right forum to reach out to patients of Neuroendocrine Carcinoma. My name is Nancy and I am a high school senior currently doing a project on Neuroendocrine Carcinoma. My project is a yearlong exploration of my passion for Cancer research. I hope to gather personal accounts of patients and doctor experiences throughout my journey for the intended goal of spreading awareness about a disease that many people may not be informed about. As my final product, I want to produce an audio story of these collective experiences. If you would be interested in sharing your story (which can be 100% confidential) please reach out to me at nancyaleid@live.com. Thank you!
~Nancy

na123

msdavis50 said:

NET
Hello,
My husband was diagnosed with Neuroindocrine Carcinoma in May of 2011 after going in for a routine colonoscopy. He had a colon re-section and discovered mastastases to the liver. He had several treatments of chemo and PET showed no change. He then had the Sphere procedure done by Dr. Majorio in Baton Rouge. He was doing good after the procedure and scan showed tremendous improvement. However in May of 2012, another tumor was discovered in the thoracic spine and another surgery was done in an attempt to remover the mass. He is paralyzed now from the waist down. We are hopeful that he will walk again. Currently in therapy.

He is taking Xeloda, an oral chemo which seems to be working well. The tumors on the liver is getting smaller and his biggest problem now is the back issue. We are being cared for by the experts at the NET Clinic in Kenner, La, which we found by communicating with a NET survivor in Missouri, and Drs Billings and Fields at Mary Bird Perkins Cancer Center in Baton Rouge. My email address is msdavis50@yahoo.com.

Neuroendocrine Carcinoma

Hi!

 

    I’m hoping this is the right forum to reach out to patients of Neuroendocrine Carcinoma. My name is Nancy and I am a high school senior currently doing a project on Neuroendocrine Carcinoma. My project is a yearlong exploration of my passion for Cancer research. I hope to gather personal accounts of patients and doctor experiences throughout my journey for the intended goal of spreading awareness about a disease that many people may not be informed about. As my final product, I want to produce an audio story of these collective experiences. If you would be interested in sharing the experiences you have with this disease (which can be 100% confidential) please reach out to me at nancyaleid@live.com. Thank you!
~Nancy

Gulzar

satamara said:

Just Diagnosed with Neuroendocrine Carcinoma Breast Location

just curious - what you decided on your treatment? did your treat go well?

My wife had neuroendocrine tumor in breast 2 years back. we went through chemo+ masactomy+ radition.

it returned back aggressively now - spread to liver, lung and bone. we are deeply worried and she is going through treatment.

I am wondering anybody out there know -

any advanced  (or NEW) treatment center for this kind of cancer?

or some people say - Europe/Swedan might have better treatment. But don't know any specific details.

just posting to see desperately- anybody has any better suggestion for this?

Check Neuroendocrine

Check Neuroendocrine carcinoid site acor.org 

lindaCT

Questions

Three months ago I was dianosed with this cancer.  it has mastised to my liver  I am taking monthly injections to stop the spread.  My chromogranin A level started at 300 , went down to 153 and this month it is back up to 187.  anyone else experiencing this

Roger_m

lindaCT said:

Questions

Three months ago I was dianosed with this cancer.  it has mastised to my liver  I am taking monthly injections to stop the spread.  My chromogranin A level started at 300 , went down to 153 and this month it is back up to 187.  anyone else experiencing this

I've not seen the CGA levels until my last lab test last week.  I was diagnosed in Jan 2015, I had a tumor in my small intestine and two areas of my liver.  Feb2,2015, had surgery to remove what they could see.    At this time, my level is 38.something.  the lab sheet says the range is 0 to 95, not sure what 'normal' is.

I'd double check with the Dr on the specifics.    I'm going to go through my paperwork to see if I can see a printout with this test on it.  The 2 prior tests (tesing every 6 months), didn't have any levels for CGa on it.

 

Good luck

northa914

Combinaton Chemotherapy

Has your oncologist discussed the Xeloda/Temodar combination therapy with you?  I've been on it for over two years and have just experrienced disease progression. We've increased the dose of Xeloda to the amount required by standard therapy since we had to decrease it when I initially started due to hand-foot syndrome.  Currently I take 2000mg Xeloda days 1 - 10 and 200mg Temodar days 10 - 14, and have Sandostation LAR unjections every 28 days.  I also get Xgeva injections every 28 days for bone metastasis.  I was originally misdaisgnsed with the wrong type of cancer in June 2010, and rediagnosed with pancreatic NET in January 2013.  I have lesions in my liver and pancreas (new active lesions are in my liver), and disease in my lymphnodes.  I have so many bone islands of NET that my body lights up like a Christmas tree during a PET scan, but the Xgeva has stabilized and strengthened the affected areas.  My NET is the well-differentiated, moderately growing type.  Hope this helps

obbie2

small cell neuroendocrine carcinoma 5cm rectal mass to liver

This is what my husband was diagnosed with in August. Stage 4 and very aggressive. We were told surgery not an option. He had six months without treatment and 2 to 5 years possible with treatment. So we are doing 6 cycles of Cisplatin and VP-16, followed by radiation. We have finished the first cycle with hair loss, but no weight loss. Looking for someone who has similar.

Scotlass

monkabell66 said:

Primary Neuroendocrine tumour in Breast

Hi there,

I am a 47 yr old lady in UK I have had breast cancer twice in same breast (2007 and 2011) the last time I was diagnosed with a primary Neuroendocrine breast cancer 5.6 cm large, non cell specific , however grade 3 as you know is aggressive. I had mastectomy followed by 6 sessions of FEC Chemo 3 weeks apart then radiotherapy. I cannot find anyone in UK with this diagnosis and the medics cannot give me any information on prognosis. I would love to hear back from you or anyone who has been through this. I just need reassurance that I'm going to be ok and be around linfer than 5 years 

Uk lass here looking for answers

Hi Monkabell66

Just to let you know i am also a 47 year old from Scotland and i have also been diagnosed with Neuroendocrine Breast Cancer just last week.  I am in the process of going through scans and blood tests at the moment.  You are not alone in the Uk.  I am just still trying to get my head round things at the moment but i would love to share stories x

Sasse

Neuroendocrine Prostate Cancer

Hello all, I have a question, maybe someone may give me some direction.  My husband was diagnosed with poorly differentiated small cell neuroendocrine prostate cancer with possible metastisis to his liver, lymph nodes and lung.   He also has chronic lymphatic leukemia and type 2 diabetes.   His oncology doctor said 6 to 12 month expiration date and if he had chemo it would only extend his life 1 to 3 months.   He decided not to do chemotherapy.   He is trying many different herbal remedies and also an vegetarian vegan alkaline diet to see if it will extend his life.   I'm a little nervous about some of the herbs.   If some of the herbs have hormonal qualities, will it "feed" the neuroendocrine cells or heal the cells like he hopes?    Here is a list of his herbs and teas: 

 

Vegetarian/Vegan Alkaline diet

Ocotillo tea, 1 quart per day

Chaparral tea, 1 cup

Essiac capsules, 2 capsules per day

    Burdock root extract

    Slippery Elm

    Sheep sorrell

    Indian rhubarb

Tumeric/Curcumen two 750mg caps/day

Mens Formula, 2 droppers full (1600 mg)

Glucotor v. 2, 2 tabs (1100 mg ea)

    Nopal 300 mg ea

    Konjac Mannan 234 mg ea

    Gymnema Sylvestre 25% ea

    Fenugreek 192 mg ea

    Cinnulin PF

Ultimate Antioxident, 4 tabs

    Vit A, 5250 IU ea

    Biotin 1.8 mg ea

    Selenium, 55 mcg ea

Colon Corrective 1 capsule

    Aloe, casara sagrada bark, barbarry rt, ginger, fennel, terminalia, senna leaf, cayenne

Flax seed, fresh ground 2 tablespoons

Milk thistle, ½ tablespoon

Actually I have been able to get him to hold off on taking Kelp and Iodine in high doses and Mormon tea.

I wish there were a better way.  I never know what to believe when searching the internet.

Thank you.

 

HapB

Sasse said:

Neuroendocrine Prostate Cancer

Hello all, I have a question, maybe someone may give me some direction.  My husband was diagnosed with poorly differentiated small cell neuroendocrine prostate cancer with possible metastisis to his liver, lymph nodes and lung.   He also has chronic lymphatic leukemia and type 2 diabetes.   His oncology doctor said 6 to 12 month expiration date and if he had chemo it would only extend his life 1 to 3 months.   He decided not to do chemotherapy.   He is trying many different herbal remedies and also an vegetarian vegan alkaline diet to see if it will extend his life.   I'm a little nervous about some of the herbs.   If some of the herbs have hormonal qualities, will it "feed" the neuroendocrine cells or heal the cells like he hopes?    Here is a list of his herbs and teas: 

 

Vegetarian/Vegan Alkaline diet

Ocotillo tea, 1 quart per day

Chaparral tea, 1 cup

Essiac capsules, 2 capsules per day

    Burdock root extract

    Slippery Elm

    Sheep sorrell

    Indian rhubarb

Tumeric/Curcumen two 750mg caps/day

Mens Formula, 2 droppers full (1600 mg)

Glucotor v. 2, 2 tabs (1100 mg ea)

    Nopal 300 mg ea

    Konjac Mannan 234 mg ea

    Gymnema Sylvestre 25% ea

    Fenugreek 192 mg ea

    Cinnulin PF

Ultimate Antioxident, 4 tabs

    Vit A, 5250 IU ea

    Biotin 1.8 mg ea

    Selenium, 55 mcg ea

Colon Corrective 1 capsule

    Aloe, casara sagrada bark, barbarry rt, ginger, fennel, terminalia, senna leaf, cayenne

Flax seed, fresh ground 2 tablespoons

Milk thistle, ½ tablespoon

Actually I have been able to get him to hold off on taking Kelp and Iodine in high doses and Mormon tea.

I wish there were a better way.  I never know what to believe when searching the internet.

Thank you.

 

Sasse-.. Diet and NETs

hi Sasse,  I am so sorry that your husband has this diagnosis. This is a rare cancer and I am wondering whether he has seen an expert in Neuroendocrine Carcinoma?  

Also, where did you get this list of foods? I have never seen this. 

 

Hang in there!

 

 

cat57

newly diagnosed

Just very recently diagnosed with a Neuroendocrine carcinoma of the small bowel (duodenal) Still waiting to hear fo rmy surgery date. I know most posts on this thread seem to be older, but wondering if anyone has any insight, tips, suggestions for me? What can I expect?

Thanks in advance

blancorq2

grand442003 said:

Hello Chrisaw; My name is Grand and I was diagnoised with Neuroendocrine Carcinoma in March 2001 and I was told by my doctor that I had 3 months to 5 years to live and I looked at my doctor and told him it was up to Dr. Jesus; I immediately started praying and I asked God for a healing; John 14; What ever you ask in His Name He Will Do It; The cancer is stable; I give all the Praise and Glory to God; I also asked God to send me to M.D. Anderson Cancer Center and God answered my prayers. M.D. Anderson Cancer Center is one of the best Cancer Center's in the world. I was on regular chemotherapy and now I get an injection every month. The injection is call Sandostatin Lar Depot. The cancer has'nt grown since i was diagnoised March 2001 and I give all the Praise and Glory to God. There's Nothing God Can't Do. All you need is faith as small as a mustard seed. Chrisaw if you ever need to talk please e-mail me at grand442003@aol.com; A Friend Forever Grand;

Just diagnosed

I was just diagnosed with neuroendocrine and waiting to go to MDAnderson hospital in Houston. Not yet have a treatment plan. I first developed a tumor on my collarbone. I am so nervous and would love any advice and consulation. 

 

Susieq021953

High grade neuroendocrine carcinoma

My Husband's tumor is at the top of his nose and by his eye, has anyone had this type?

HapB

cat57 said:

newly diagnosed

Just very recently diagnosed with a Neuroendocrine carcinoma of the small bowel (duodenal) Still waiting to hear fo rmy surgery date. I know most posts on this thread seem to be older, but wondering if anyone has any insight, tips, suggestions for me? What can I expect?

Thanks in advance

NET small bowel

Hi Cat57,

I had NET in small bowel with spread to nodes and had surgery in 2011,which was discovered while I was in treatment for another cancer. I had symptoms for years, but was misdiagnosed by a local doctor. It was quite a long surgery and recovery. I hope that you have a good surgeon. I hope that you have found an expert in NETs because it is so rare that most docotrs do not have the expertise needed to managemthis disease. I am now being treated for Breast Cancer. good luck to you on your surgery!