Neuroendocrine Carcinoma

MissAngee

BreezySwede said:

chemo pill
I'm sorry to be replying so long after question. I didn't get the word that my Cisplatin/Etopocide IV's were not quite cleaning things up until after your post.I had lesions on my liver after having primary growth removed from my Colon in May 2009. In October I came to START Cancer Center, San Antonio, TX and November 3, 2009 started an experimental pill from Array in Colorado. I have had some rash and odd blood labs but am feeling good. Imagery indicates no new cancer growth since starting the study. The study is following eye health closely as some other patients have had reaction there. Pardon spelling.

Hi
Hi. I'm Angela. Not new to the site, I've been hear before, originally diagnosed with lung cancer. I would like to know how you are doing on this drug. I too live in san antonio and am thinking of going to the START center. I too have neuroendocrine carcinoma of the GI tract. Thank you

jbrumby111

my fathers neuroendocrine tumors in his liver?
i am searching for some expirience strength and hope...we have been told so many different things and went from being a non aggressive cancer that needed no treatment to being an aggressive cancer that ended us up at duke university with no hope...my dad just keeps getting worse while our original C doc told us up until last week dads problems have nothing to do with his tumors...i am so frazzled as you may see from my scattered post but if someone could discuss... it would be great.
thanks

mr steve

jbrumby111 said:

my fathers neuroendocrine tumors in his liver?
i am searching for some expirience strength and hope...we have been told so many different things and went from being a non aggressive cancer that needed no treatment to being an aggressive cancer that ended us up at duke university with no hope...my dad just keeps getting worse while our original C doc told us up until last week dads problems have nothing to do with his tumors...i am so frazzled as you may see from my scattered post but if someone could discuss... it would be great.
thanks

net
J,

NET, does sometimes get aggressive when it moves to other organs. There is always hope, even with the worst outcome. Does Duke have a onc that works mainly with NET?

Steve

brendypoo

jbrumby111 said:

my fathers neuroendocrine tumors in his liver?
i am searching for some expirience strength and hope...we have been told so many different things and went from being a non aggressive cancer that needed no treatment to being an aggressive cancer that ended us up at duke university with no hope...my dad just keeps getting worse while our original C doc told us up until last week dads problems have nothing to do with his tumors...i am so frazzled as you may see from my scattered post but if someone could discuss... it would be great.
thanks

Hey this is my first time on
Hey this is my first time on line just found you guys. My husbands was diagnosed 5 years ago with neuroendoccrine tumors in his liver. we were told he would only live 3 months. that was 5 years ago. Just had new test done in jan cancer is spreading but not near as aggressive as they told us. how old is your dad

brendypoo

Mary B said:

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

how is your sister doing now
how is your sister doing now

brendypoo

GJ100 said:

Neuroendocrine tumor
Hi Jeffrey,

My husband was diagnosed with a neuroendocrine tumor in September 2010. They have not been able to ascertain the site of the primary tumor but there are considerable METS in his liver. He has been taking Sandostatin injections which were, initially, effective in controlling the diarrhea that is associated with this disease. But, after 14 months, during which time both the dosage and the frequency of administration were increased the diarrhea has returned. As a result of your post we are going to look into the possibility of including Afinitor in his regimen. Thanks!

GJ

Hi Jeffrey
My husband was
Hi Jeffrey

My husband was disgosed with neuroendocrine tumors on his liver in 2007. He too takes sandostatin injections every 28 days. This cancer has a life of its own. Most times he is as weak as a kitten and too tired to wake up othertimes he is just fine. I guess depending where it is traveling at the time. Hard to know what is next. We were told he would only live 3 months that was in 2007. My heart and prayers are with you.

brendypoo

maynard said:

Not alone
I was diagnosed 12/22 with NEC of the colon, multiple liver sites, lympodes, and both lungs. I was doing fine one day and my side hurting the next and unable to breathe. i don't know what to tell you. They gave me maybe 4 months w/o treatment and 8 with. According to Jackson doctor, it is inoperatable and incurable. My is fast acting large cell cyokeratin 8/18. I am going to Vanderbilt this week and trying to get into M D Anderson.It is up to our Lord God to decide when it is mine time.

I will pray for you. hope
I will pray for you. hope all is well

Steviekae

katbalou said:

neuroendocrine breast cancer
I'm new to this web site. Just found your comments. Wonder how your Mom is now. 5 years ago I was diagnosed with small neuroendocrine cancer, primary site in the breast. I had modified radical mastectomy, cisplatin/etoposide and then radiation. I am alive and well and cancer free. I was told I was going to die. Obviously I did not die. I think they are finding that the breast is less vascular so the cancer does not spread as readily as from other cites.

Diagnosed at 30 with neuroendocrine breast cancer grade 3
I am so happy to hear you are alive and doing well. I was diagnosed with neuroendocrine breast cancer in Oct 2011. I started a clinical trial at Mayo Clinic immediately for 12 weeks, my tumor shrank drastically (this treatment is now in the approval phase). Then I had a lumpectomy on Feb 9, which got clean margins. I am now going through the 4 A/C chemo treatments over 8 weeks, then I will be doing radiation and hormone therapy. I have three sons, the ages of 6, 4, and 2. As you know there isn't much information about this cancer, hearing that you are 5 years cancer free is wonderful news. Hoping for many, many more years of cancer free life for all of us!

linh

brendypoo said:

Hey this is my first time on
Hey this is my first time on line just found you guys. My husbands was diagnosed 5 years ago with neuroendoccrine tumors in his liver. we were told he would only live 3 months. that was 5 years ago. Just had new test done in jan cancer is spreading but not near as aggressive as they told us. how old is your dad

Neuroendocrine Carcinoma
Sorry, I don't know how to post this as a new thread.

Hello everyone,

I am new to this site and hoping to find more answers on treatments for NeuroEndocrine Carinoma. My step father was diagnosed with this cancer 2 weeks ago. He is currently on state 4. He was hospitalize for a week but was later kicked out of the hospital because the insurance will not cover the cost. So far, they did blood work and biopsy. He was told to wait for further results, which could take up to a few weeks. His cancer has spread to lungs, liver, spleen, and pancreas. He is in so much pain at the abdominal area. The only meds prescribed to him were morphine and motrin. We are devasted to see him like this. We pray every day for a miracle. I am very displease with the doctors because I feel like they are not doing anything to help stabilize the condition. They were not able to find where the cancer started from. He hasn’t been on any type of treatments such as, chemo, or pills, or radiation. I am afraid that if they don’t start treatment on him soon, the cancer will spread more and it will be difficult to contain.
He has excruciating pain at the abdominal area when he laughs, cough, sneeze, and yawn. He has occasional headaches that last for about 1 hour. I’m afraid that the cancer might spread to his head. We are requesting to get a cat scan for his head, but we were told by his provider (Kaiser) to wait.
Please help!!!!!!!!!! Any word of advice, anything helps.. I can be reached at huy.mao@gmail.com or 503 8751896.
Thank you!
Unfortunately, the doctors that treating him have no answer

comghj

brendypoo said:

Hey this is my first time on
Hey this is my first time on line just found you guys. My husbands was diagnosed 5 years ago with neuroendoccrine tumors in his liver. we were told he would only live 3 months. that was 5 years ago. Just had new test done in jan cancer is spreading but not near as aggressive as they told us. how old is your dad

New to all this
From what I have read about Neuroendocrine Carcinoma there must be several different varieties. I was diagnosed back before Christmas 2011. I went to have my regular physical and my docotor was alarmed when he saw my liver enzimes were off the chart. I went to have an ultrasound and that's when they found metastatic lesions on my liver. Next was a CAT scan which revealed 7-8 lesions on my liver......real nice to find out just over a week before Christmas!!!! BTW don't do research before you hear from your Oncologist, that was the worst week of my life. December 23rd I found out I had Neuroendocrine Carcinoma, which was a relief since I thought I had liver cancer, and was told I could live years and years by getting a shot (Sandostatine LAR) once a month. What followed was a colonoscopy and EGD, biopsy, PET scan and CAT scan. Fortuneatly they found the primary tumor in my lower intestines which has given me the opportunity for surgery.

What I have going for me is that I'm 41 and in good health, what worries me is that I have 4 children under the age of 12. I've had much to consider, but have decided for the surgery, it's a huge chance to rid my body of cancer completely.....problem is this is what I'm having to do.

First procedure, RFA (Radio Frequency Ablation) to one lesion on the left side of my liver. Then 3 weeks later, a right portal vein embolization, which is cutting off the blood supply to the right side of my liver (where most of the lesions reside), I'm a week out from that procedure as I write this. Then after about 3 weeks the left side of my liver should grow enough to allow surgeons to remove the right side of my liver, part of the left side and a section of my lower intestines where the primary tumor resides.

Needless to say I'm taking a huge risk, but I think the benefits out way the risk. As long as the tumor hasn't spread and the surgeons do a good job, I should be cancer free after all this....no chemo, radiation, nothing. I hope I'm doing the right thing.

Kssb1967

Large cell neuroendocrine cancer, breast, stage 2a
In February 2007 I was diagnosed with this rare subtype of invasive ductal carcinoma. My neuroendocrine tumor had extensive vascular invasion. P53 was 97%. ki-67 was 44%. I had lumpectomy, reexcision, chemotherapy (TAC x6) then aggressive 4-week radiation with boost protocol (phase 3 trial). Then tamoxifen for 10 months, Arimidex for 7 months ( couldn't tolerate side effects anymore), then back to tamoxifen for 4.5 yes until it seemed to not be effective so back to Arimidex again. I am now 5 years from diagnosis! I am 45.

monkabell66

katbalou said:

neuroendocrine breast cancer
I'm new to this web site. Just found your comments. Wonder how your Mom is now. 5 years ago I was diagnosed with small neuroendocrine cancer, primary site in the breast. I had modified radical mastectomy, cisplatin/etoposide and then radiation. I am alive and well and cancer free. I was told I was going to die. Obviously I did not die. I think they are finding that the breast is less vascular so the cancer does not spread as readily as from other cites.

Hello from England
Hi there, oh gosh how pleased am I to discover someone who not only has had the same diagnosis as myself (june 2011) but who has survived beyond the 5 year mark!!
I am Stpehanie, a 46 year old mum of 4 and grandma to 3 little angels who has already had DCIS in 2007, then a 5.6cm grade 3 neuroendocrine breast carcinoma in the same breast just 3 and a half years later.After a mastectomy and immediate recon I had 6 sessions FEC and 17 sessions radiotherapy, on Tamoxifen for 2 years then will go onto exermestane??
I do alot of fundraising for cancer charities here in the UK and unfortunately Macmillan or Breast Cancer Care charities have been unable to put me in touch with anyone in England with the same diagnosis...so I have felt especially isolated...
Having very little or no info on this cancer re:survival rates has made me even more determined to fight and I am so positive...I would really appreciate any advice on how to look after myself now that my treatment is over...though at present I am just recovering from cosmetic surgery to my reconstructed breast as a couple of things didnt quite go to plan...
I'm in shock that I've actually found someone who I can identify with!!
lotsa love

Stef x

Kssb1967

monkabell66 said:

Hello from England
Hi there, oh gosh how pleased am I to discover someone who not only has had the same diagnosis as myself (june 2011) but who has survived beyond the 5 year mark!!
I am Stpehanie, a 46 year old mum of 4 and grandma to 3 little angels who has already had DCIS in 2007, then a 5.6cm grade 3 neuroendocrine breast carcinoma in the same breast just 3 and a half years later.After a mastectomy and immediate recon I had 6 sessions FEC and 17 sessions radiotherapy, on Tamoxifen for 2 years then will go onto exermestane??
I do alot of fundraising for cancer charities here in the UK and unfortunately Macmillan or Breast Cancer Care charities have been unable to put me in touch with anyone in England with the same diagnosis...so I have felt especially isolated...
Having very little or no info on this cancer re:survival rates has made me even more determined to fight and I am so positive...I would really appreciate any advice on how to look after myself now that my treatment is over...though at present I am just recovering from cosmetic surgery to my reconstructed breast as a couple of things didnt quite go to plan...
I'm in shock that I've actually found someone who I can identify with!!
lotsa love

Stef x

Contact
Email me at kssb1967@yahoo.com

Let's compare notes. Wow... There are a few more of us out there.... Great to find you. Kathy.

Kssb1967

Phchance said:

Hi Mary. I just joined and
Hi Mary. I just joined and seen your post. I saw dr Wolin at cedar-Sinai and he was very helpful & knowledgable. He's an expert in the field. I had a HMO insurance and they covered it. Feel free to message me if you have ???'s. Just FYI my tumor was in breast

Breast neuroendocrine
Another dr. Wolin patient for breast? I see him every 6 months. I am 5 years out. I have a lot of nasty pathology features and will see him another 5 years at least. How are you doing?

Annelis

monkabell66 said:

Hello from England
Hi there, oh gosh how pleased am I to discover someone who not only has had the same diagnosis as myself (june 2011) but who has survived beyond the 5 year mark!!
I am Stpehanie, a 46 year old mum of 4 and grandma to 3 little angels who has already had DCIS in 2007, then a 5.6cm grade 3 neuroendocrine breast carcinoma in the same breast just 3 and a half years later.After a mastectomy and immediate recon I had 6 sessions FEC and 17 sessions radiotherapy, on Tamoxifen for 2 years then will go onto exermestane??
I do alot of fundraising for cancer charities here in the UK and unfortunately Macmillan or Breast Cancer Care charities have been unable to put me in touch with anyone in England with the same diagnosis...so I have felt especially isolated...
Having very little or no info on this cancer re:survival rates has made me even more determined to fight and I am so positive...I would really appreciate any advice on how to look after myself now that my treatment is over...though at present I am just recovering from cosmetic surgery to my reconstructed breast as a couple of things didnt quite go to plan...
I'm in shock that I've actually found someone who I can identify with!!
lotsa love

Stef x

My name is Anne. I was
My name is Anne. I was diagnosed in March 2012 with neuroendocrine breast carcinoma ,high grade. I am in the middle of 6 cycles of chemo now. After that a lumpectomy is to be scheduled. That will be followed by Afinitor.
I have had a terrible time finding anyone with a similar tumor. Please connect with me to let me know how you are doing!! Thanks in advance!!

Kssb1967

Steviekae said:

Diagnosed at 30 with neuroendocrine breast cancer grade 3
I am so happy to hear you are alive and doing well. I was diagnosed with neuroendocrine breast cancer in Oct 2011. I started a clinical trial at Mayo Clinic immediately for 12 weeks, my tumor shrank drastically (this treatment is now in the approval phase). Then I had a lumpectomy on Feb 9, which got clean margins. I am now going through the 4 A/C chemo treatments over 8 weeks, then I will be doing radiation and hormone therapy. I have three sons, the ages of 6, 4, and 2. As you know there isn't much information about this cancer, hearing that you are 5 years cancer free is wonderful news. Hoping for many, many more years of cancer free life for all of us!

Dx 5 yrs ago, stage 2a
Mine is/was poorly differentiated. I was 40 when dx. I'm now 45. Had surgery, reexcision, chemotherapy (TACx6), and radiation. Tamoxifen and now Arimidex. Large cell neuroenocrine breast cancer with extensive vascular invasion. Lymph-node negative (3 removed). Dx and first surgery at Sharp memorial in San Diego. Reexcision and treatment at Fox Chase Cancer Center in Philadelphia. A year later relocated back to San Diego and continuation care at UCSD and coordination with Cedars-Sinai/Dr. Wolin. 5 yrs! 5 Yrs! P53=97%. ki-67=44%. bad juju there.

p26274

Steviekae said:

Diagnosed at 30 with neuroendocrine breast cancer grade 3
I am so happy to hear you are alive and doing well. I was diagnosed with neuroendocrine breast cancer in Oct 2011. I started a clinical trial at Mayo Clinic immediately for 12 weeks, my tumor shrank drastically (this treatment is now in the approval phase). Then I had a lumpectomy on Feb 9, which got clean margins. I am now going through the 4 A/C chemo treatments over 8 weeks, then I will be doing radiation and hormone therapy. I have three sons, the ages of 6, 4, and 2. As you know there isn't much information about this cancer, hearing that you are 5 years cancer free is wonderful news. Hoping for many, many more years of cancer free life for all of us!

Just Diagnosed with Neuroendocrine Carcinoma Breast Location
I'm living in China and just got a diagnosis from the local international hospital that I have a neuroendocrine carcinoma tumor in my breast. I'm heading for the next set of tests today but will need to head back to the US (my home country) for treatment. Through my internet search it seems that Johns Hopkins, Cedars-Sinai and Mayo Clinic provide good options for me. I'm very interested in Mayo Clinic as I have family in Minnesota. Any recommendations for doctors in any of these locations?

Appreciate any feedback.

Steviekae

p26274 said:

Just Diagnosed with Neuroendocrine Carcinoma Breast Location
I'm living in China and just got a diagnosis from the local international hospital that I have a neuroendocrine carcinoma tumor in my breast. I'm heading for the next set of tests today but will need to head back to the US (my home country) for treatment. Through my internet search it seems that Johns Hopkins, Cedars-Sinai and Mayo Clinic provide good options for me. I'm very interested in Mayo Clinic as I have family in Minnesota. Any recommendations for doctors in any of these locations?

Appreciate any feedback.

I am at Mayo
Mayo has been absolutely amazing! Each stage of my treatments have gone better than I hoped for. All of the doctors work as a team and when I had my first appointment, it took a while for them to come to the exam room. They said that all the doctors were looking at my case - since it is so rare, to find the best treatment plan, that was why it took longer (I was totally fine with them taking longer to collaborate). If you come in with this type of cancer they give you the best doctor to deal with that type. I see Dr. Goetz and Dr. Wahner-Hendrickson.

My email is steviekae@yahoo.com

patti1959

Mary B said:

Neuroendocrine Carcinoma colon any advice on drs in SoCal
My sister was diagnosed yesterday with Neuroendocrine Carcinoma found in the colon and we are trying to hit the ground running on where she should go. We live in Southern California and at first thought UCLA, then a friend has really recommended USC Norris Center with Doctors Josef Lenz and Dr. Robert W. Beart. Has anyone had any experience with these doctors or UCLA?
My sister is the heart and soul of our large family and we are going to fight for every extra day she can get, and we know that it often starts with the right medical team. Any ideas would be so appreciated.

Sisters
I can not give you any medical advice but my sister was also diagnosed with NET (primary in the colon) in January of this year. She is also the heart of our family and my best friend. She is going to do her 8th and last round of chemo next week and is doing 23 days of radiation. She has non functional and poorly differentiated tumors which are the worse but also react the best to the chemo. All of her secondary tumors are gone and her original has only shrunk a little. I don't know what will happen when the chemo ends but I hope they give her body a rest. She has done very well with the chemo. She is very tired , but not so sick she doesn't work from home when she came. I wish your sister and your family the best. If you have any questions let me know....
Patti

traceymbanks

yes ma'am
Please tell me more. I was told in 2009 Ihad small cell neuroendrocine carcinoma