neuroendocrine small cell carcenoma

Alisa - I hope this finds you doing well. A very late reply, but just joined the board.

I have Neuroendocrine Carcinoma, Non small cell type, lung primary (non-smoking related) with met to Brain. It was discovered in mid July when I had a small stroke and the MRI showed 2 brain tumors.

I've spent weeks searching out this type of cancer with few results but did find out a few things. Mainly that the brain involvement is so rare that it isn't mentioned - but it is normal for it to involve the stomach, colon, ovaries, lymph nodes etc. The first thing is to find out if it is a carcinoid type of tumor, then it makes it's own hormones - this is what makes it so aggressive. One brain tumor went from 1.5 cm to over 3 in about 3 weeks, hence the craniotomy in August. The other is too deep in to be surgically removed so had SRS. Refused WBRT as my research as shown that in my case the SRS is just as effective.

Work closely with your doctor on any supplements/herbs. I prefer the naturopathic way myself but had to discontinue almost all I was taking. Seems what helps with others can cause increased tumor growth in this type of cancer. Good thing I like broccoli - lol.

I've found that there is a good survival rate if found early and treated as you're having it done. It's frustrating to have a rare cancer as you know.

Acupuncture, massage - anything that helps you feel better and cope is good. ((hugs))

For an excellent Article on current research and clear recommendations on Cancer and nutrition (not just their particular cancer focus) look at www.prostatecancerfoundation.org. The research seems to promote lycopene for retarding aggressive cancer. Its best source is cooked tomatoes.

Best wish for your progress.
Richard

selehka said:

Alisa - I hope this finds you doing well. A very late reply, but just joined the board.

I have Neuroendocrine Carcinoma, Non small cell type, lung primary (non-smoking related) with met to Brain. It was discovered in mid July when I had a small stroke and the MRI showed 2 brain tumors.

I've spent weeks searching out this type of cancer with few results but did find out a few things. Mainly that the brain involvement is so rare that it isn't mentioned - but it is normal for it to involve the stomach, colon, ovaries, lymph nodes etc. The first thing is to find out if it is a carcinoid type of tumor, then it makes it's own hormones - this is what makes it so aggressive. One brain tumor went from 1.5 cm to over 3 in about 3 weeks, hence the craniotomy in August. The other is too deep in to be surgically removed so had SRS. Refused WBRT as my research as shown that in my case the SRS is just as effective.

Work closely with your doctor on any supplements/herbs. I prefer the naturopathic way myself but had to discontinue almost all I was taking. Seems what helps with others can cause increased tumor growth in this type of cancer. Good thing I like broccoli - lol.

I've found that there is a good survival rate if found early and treated as you're having it done. It's frustrating to have a rare cancer as you know.

Acupuncture, massage - anything that helps you feel better and cope is good. ((hugs))

Hi Selehka, I am new to this site, but read your post with having NSC lung cancer and found it very interesting. My brother was diagnosed with Lung Cancer the day after Thanksgiving and it took his oncologist nearly a month to determine what type he had. They told him that it is non small cell with neuroendocrine features. He is at stage 4 and the doc gave him 12-16 months to live and with 4 cycles of chemo, they gave him an additional 2 months longer. He has no symptoms, no loss of weight, no loss of appetite or anything like that, only after 2 cycles of chemo, he's lost all of his hair. We are desperately looking for someone that can guide us to the right things to eat in order to completely change his eating habits hoping it will stop the growth and spread of his cancer. It has met to 2 lesions on the liver and to one lymph node on the corina. We have read in many places about how bad sugar is to his body by feeding the cancer tumors, and would like to know what kinds of fruits and vegetables he should be eating now since his oncologist is against any type of natural supplements and remedies altogether. He is frantic, scared to death and wants to fight for his life!!! Any suggestions would be GREATLY appreciated!!!!

My mother was just diagnosed with small cell vaginal cancer. Her tumor was just removed and she is starting chemo radiation next week. I think she would love to speak with someone who is going through the same thing. She is going to get radiation 5 days a week for 5 weeks and chemo 3 days and then 21 days off. I will get her on the website and have her contact you.

terriluedtke said:

Ralph and me
Hi Kathylee, I hope your mom is doing well this week and the chemo and radiation are not wearing too badly on her. I have a Ralph or glucaganoma, which is an islet cell tumor of the pancreas. Do you remember Ralph Kramer from the honeymooners? The old ones with Jackie Gleason? Your mom may remember that one :}. Well that is what we call my tumor. It makes it easier to picture this mean, obnoxious character that is forever being a nuisance. Sometimes you just have to smile and laugh to keep going.
Please let your Mom know if she needs a friend or just someone to commiserate with I'm here. I have done the radiation and the chemo treatments. I am now on a clinical trial and keeping all fingers and toes crossed. I have 5 kids and 2 grandchildren that I want to see graduate from high school in about 17 years so I plan on being around as long as God and I can agree! Take care and have good thoughts today. To all of us..."Mistakes are just opportunities for learning something new, which is what scientific experiments are all about. Even if the experiment doesn't work we usually learn something valuable from it. So says Jack Canfield. Don't know who he is but boy is he right!

Looking for other NET/Islet Cell Patients
I would like to network with other NET/Islet cell patients. I was misdiagnosed in Feb '07 with adenocarcinoma of the pancreas. In June of '07 I was properly diagnosed with poorly differentiated neuroendocrine carcinoma of the pancreas. I am in stage IV with mets to liver and spleen. Surgery or radiation were not an option for me. I have successfully been on chemotherapy. I am currently taking an oral chemo called Nexavar. It is working well for me. It is not currently FDA approved for NET but is showing great promise in clinical trials. It is currently approved for renal and liver cancer. I have noticed that most of the posts here are from a long time ago. If any of you are still active on this board or new to the board and have NET/Islet cell cancer, please post and tell me your story.

tamil said:

I have small cell neuroendocrine
They aren't sure where the primary is anymore, they used to say primary colon, my octreoscan came back faint positive but dr has now pulled me off of sandostatin since i have progression. My cancer is in my liver and my omentum. Right nowI am frustrated as they are telling me no to sirspheres. They have me on gemzar chemo now after progressing after 5 months on carboplatinum/etoposide. I am going to ask about nexavar. I am not sure where to look for answers. Have looked at carcinoid.org found a specialist but still feel I am not being treated correctly and all I can do is pray that I am. Since this is so rare, its hard to shop for another dr

I'd like to stay in touch
Tamil, I believe our cancers may be similar. I am so sorry that you are not finding peace with your current doctors. If I can be of any help and support, I would love to be of assistance.

Neuroendocrine small cell carcinoma
I have the same kind of cancer, I was detected in Feb of 2008. I underwent the full hysterectomy, the 6 rounds of chemo, I did radiation and brachetherapy. I had a recent PET scan and am awaiting results. I'm not sure what to say except keep on fighting that's all we can do.

sknutson said:

Neuroendocrine Small Cell Cancer
AlisaD,
In June, 2009 my doctor removed what he thought was a small fibroid tumor on the outside of my cervix. Two day later he called and told me that the tumor was malignant and immediately referred me to the City of Hope. In July, I had a radical hysterectomy and lymph nodes removed. There were no traces of the cancer in any of the pathology. I too underwent 6 rounds of chemo(3 days on 18 days off, 6x with cysplatin and etopiside). In January the CT scan showed very small nodules in my lungs. In April, the nodules had growth and multiplied (metastasized). Now I am consulting with the City of Hope again, waiting on a biopsy and a treatment plan. I too have 2 young boys (13 & 8). I am determined to survive this through have faith in God and my doctors. I would love to hear how you are doing and what treatments you have gone through. I am very interested in hearing from you. Sincerely, Shawn Knutson, Yorba Linda, CA

Neuroendocrine
Shawn,
I was dx'ed in March 2010 with a neuroendocrine carcinoid lung tumor. I am currently on a treatment of cysplatin and etoposide along with daily radiation (M-F) for 6 weeks. I cannot seem to locate anyone to confir with on this type of cancer. I am a 37 yr old single Mom with 2 children (13 & 8). My tumor is 3.8 cm and has spread to the lymphnodes in my thorasic cavity, mainly the ones along my esophogus. Was your cancer derived from Neuroendocrine cells as well? How did the chemo affect you? I hope you don't mind the questions. Thanks!
Amy

lsagona said:

my husband was dx in june 2007 w poorly differentiated neuroendocrine carcinoma.He had a lump on his head after hitting it on an a/c unit. The lump grew and we did a CT. He had a hole in his skull w a soft tissue mass. He had a craniotomy and it took a month to get pathology results. The tumors took off and grew in his brain, hip, spine, and ribs, there is a mass in his lung that is thought to be the primary. The lung mass is stable and not bothering him. His problem is the intense pain from the rib lesion. He also has a large L3 lesion. The only one you can see visually is the rib lesion. It is finally I think getting smaller. He is on alot of pain meds and has monthly nerve blocks. He is very healthy other than the pain. It is difficult for him to walk. We did WBRT, cyber knife to brian and radiation to bone lesions twice. He failed 3 chemos and is now on 2 new ones. We are praying this will help. he is 51y/o non smoker. We have a 5 y/o son. He is our focus. We are told prognosis is poor but there are miracles out there. I am a pediatric oncology RN. I need to save my husband. Anyone know of any survivors? His tumors are not hormone sensitive. He lost 30 lbs. I have been giving him shaklee shakes and herbal immune boosters and liver detox and vitamins. He has gained some weight and is very healthy but debilitated w pain. There must be something else we can do.

Small call
I just joined this cancer site yesterday and saw your 2007 post under rare cancers. I'm not sure if you can see my profile but if you can I've listed the treatments vie taken for this rare cancers. I have a rare form of prostate cancer which they believe was a mutation of small cell cancer which I have in almost every organ of my body and bones. I'm currently on my 7th chemo series ( 3 times in one week followed by 2 weeks off).
I pray you are still a survivor. At one point I was told I only had one or two weeks to live if the chemo did not work.....fortunately it worked and my tumors went away within a week. I'm told I'll always have this cancer and will have good and bad times.
I wish you the very best and pray this emai finds you .......healthy
Regards
Rich94061

sknutson said:

Neuroendocrine Small Cell Cancer
AlisaD,
In June, 2009 my doctor removed what he thought was a small fibroid tumor on the outside of my cervix. Two day later he called and told me that the tumor was malignant and immediately referred me to the City of Hope. In July, I had a radical hysterectomy and lymph nodes removed. There were no traces of the cancer in any of the pathology. I too underwent 6 rounds of chemo(3 days on 18 days off, 6x with cysplatin and etopiside). In January the CT scan showed very small nodules in my lungs. In April, the nodules had growth and multiplied (metastasized). Now I am consulting with the City of Hope again, waiting on a biopsy and a treatment plan. I too have 2 young boys (13 & 8). I am determined to survive this through have faith in God and my doctors. I would love to hear how you are doing and what treatments you have gone through. I am very interested in hearing from you. Sincerely, Shawn Knutson, Yorba Linda, CA

Small cell and sknutson
Shawn
I hope you saw my 1st reply but thought the following might give you a little more info.
Regards
Rich Panelli, redwood city, California

About Rich94061

Joined on
November 13 2010
Most Recent Activity
Sunday 11 14 2010
My cancers
Prostate
My relationship to cancer
I am currently in treatment for cancer
Gender
male
Age Range
60-69
How and when did you learn about your cancer?
I had an annual physical and my primary doctor noticed my psa had risen to 2.7 over 5 years and she referred me to a urologist. The urologist said I had no symptoms of prostate cancer bur to be sure he said he'd do a 14 sample biopsy. The 14 sample all came back malignant, highly aggressive and fast growing. This is extremely rare for prostate cancer. I had robotic surgery on 2/27/2010, followed by 2 months of daily radiation and 6 months of hormone treatment. A week after completing the above the oncologist called me to say I had "small cell" cancer in almost every organ of my body and in my bones. I've had CAT, MRI and PET scans to confirm this diagnosis. I was told this is extremely rare and they only had 2 types of chemo to try. The first chemo did not work and in the following five days I developed 1 to 2 tumors per DAY. The 2nd chemo worked and the tumors disappeared within a week. I asked what would have happened if this 2nd chemo had not worked and was told I would have been dead within one to two weeks. I've now had 6 chemo series and am scheduled for a 7th series after thanksgiving . My series consists of 3 chemo sessions (one 5 HR and two 3 HR sessions).

Does anyone out there have this rare prostate cancer AND small cell cancer?
See the above paragraph. Recently my cancer markers ROSE from 14.7 to 37. My oncologist wants me to retake the test to see if it was a lab error. I have no idea if this is normal or not. I was praying it would go down below 10 because it had been dropping with each chemo treatment. I'm worried the cancer is getting worse although I don't feel bad or feel any tumors.
I've been told my cancer probably started as small cell and mutated to prostate cancer but they aren't positive that was the case.