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neuroendocrine small cell carcenoma

AlisaD's picture
AlisaD
Posts: 2
Joined: Nov 2007

I am just looking for any survivors of this cancer out there or anyone else dealing with this cancer. Mine presented with a tumor on my cervix. We removed it along with a full hysterectomy and 50 lymph nodes, two of which had cancer. I am now undergoing 6 rounds of chemo (3 days on, 18 days off, 6 times) then I will do radiation. I am also following an organic, mostly raw foods diet along with supplements and herbs provided by an herbalist to help my body tolerate the chemo. I have a young son and am desperate to survive this. I know I am doing all I need to be doing. I am just looking for others out there dealing with this.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Alisa,
I am sorry that no one has responded to your post. I am a colon cancer survivor but sometimes I just read through the other forums to see if anyones posts are going unanswered. I am sure it is difficult having a rare form of cancer and I cannot pretend to even know what neuroendocrine small cell carcinoma involves, but I do know what surviving involves! It does sound like you are doing everything right. I do not follow a mostly raw diet, but I have changed my diet substantially and have consulted an N.D. throughout my treatment. I do feel that, as well as acupuncture and massage, etc. have helped me tremendously. I hope that you have been able to find someone else with this type of cancer to talk to! Let us know if you have!
Take care,
Susan H.

pink05
Posts: 553
Joined: Mar 2006

Hi Alisa,

I am not familiar with this form of cancer, however, I just want to let you know that I think you are doing the right thing by following a healthy diet and taking supplements along with traditional medicine. Sounds like you have all the tools to fight this thing. Please know that I am praying for you.

God bless,

-Lee-

oneagleswings
Posts: 425
Joined: Jan 2005

Hi Alisa:
I am from the colorectal cancer board and don't have any knowledge of your type of cancer but from the sounds of your post you are a fighter and on the right track...good thoughts are coming your way...take care
Bev

selehka's picture
selehka
Posts: 2
Joined: Dec 2007

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))

lsagona
Posts: 2
Joined: Oct 2007

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.

Rich94061
Posts: 3
Joined: Nov 2010

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

Sehmom
Posts: 4
Joined: Aug 2013

My mother has been told the same thing from her doctors. She has neuroendocrine carcinoma from an Unknown primary metastized in her liver.  She has been told although they are treating her with chemo, it will never go away.  I was looking for some hope.

sparky3489's picture
sparky3489
Posts: 1
Joined: Jan 2008

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!!!!

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Hi, I am in the same situation as your brother and with the same diagnose. They have given me app. the same amount of time as your brother got.

I dont have any pain, loss of weight, or any other sign of illness in the moment and the chemo work fine on me. So I also feel a little bit frustrated about my future.....

So I undred did you find any treatment for your brother, and if did it work?

mr steve
Posts: 286
Joined: Sep 2009

AnneLene

Have you see anyother Onc's about this type cancer. there are several new drug out and treatment options.

Steve

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

No, the system here I live is not open for that or may little more correct.... I doesnt had the time before I start tratment, caused of a vena cava syndrome. Anyhow I doesnt think I had an option in the beginning. I am treated at Oslo University hospital in an Cancer center with the best knowlegde with aggressive NET in my area of the country (Norway).

We start with chemo (2 different types - one for 3 dayse and one for 2 days in 24 h) and it?s look like it work fine on me as a first line treatment. In July before the 3. treatment I will have a new CT how can give us much more information.

RichardRS's picture
RichardRS
Posts: 44
Joined: Nov 2007

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

pady51
Posts: 1
Joined: Oct 2007

I had a routine colonoscopy in April and when they removed half my colon, they found the cancer. I had 4 rounds of chemo. Am officially in remission now, but having a hard time "waiting for the other shoe to drop." My oncolgist says this cancer is so rare that he cannot give me any stats on % of reoccurence, etc. I don't really understand what the rarity means.
Can someone enlighten me or point me to sites that can?

isletcell's picture
isletcell
Posts: 70
Joined: Mar 2004

Hi Alisa! I have been dealing with the same family of cancer except mine was on the pancreas in 2003. It has been a long journey...... I would like to invite you to read my page under "Jennifer's Story" and would be happy to point you in the right direction if you feel that you need it.

Good luck,

Jennifer

kathylee
Posts: 1
Joined: May 2008

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's picture
terriluedtke
Posts: 1
Joined: Jul 2008

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!

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

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
Posts: 13
Joined: Sep 2007

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

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

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.

Sehmom
Posts: 4
Joined: Aug 2013

Hi, my mother has neuroendocrine carcinoma metas tied in her liver.  She has had 8 series of carboplatin and etoposide so Farr and not what they are doing next. Said surgery is not an option. Any one else's stories would be helpful.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Please see the new post I just did "Update for Michael"

Dreamseeker
Posts: 2
Joined: Dec 2008

Hello Alisa, There is another site to keep tabs with us with small cell. Here is the site below. I hope you will join us. There are survivors out there. So do not lose hope Join this group below it is more up to date with women battling the same small cell cancer.

http://www.inspire.com/groups/national-cervical-cancer-coalition/discussion/small-cell-neuroendocrine-carcinoma/

Take Care
Dreamseeker

Marleen
Posts: 1
Joined: Feb 2009

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
Posts: 2
Joined: May 2010

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

AmyShan's picture
AmyShan
Posts: 2
Joined: Jun 2010

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

sknutson
Posts: 2
Joined: May 2010

Hi Amy,
Yes, my cancer is neuroendocrine small cell cancer (undifferentiated) found in the cervix.
The cisplatin and etopiside was rough. But my doctor was very happy with how strong I was through the treatment. I had to get a neulasta shot after the first treatment because my white count was low. The tough part is losing your hair. Mine came back, but now it fell ot again since I started a new treatment I am currently doing chemo-Topatecan since the lung biopsy came back positive for small cell neuroendocrine. I wish you the best and I am praying for healing for you. Where are you getting treatment? I'm doing chemo at St. Jude in Fullerton CA and we consulting we doctors at The City of Hope.
Best wishes,
Shawn

aahkansas
Posts: 11
Joined: May 2012

Im new here. My boyfriend was just dx on May 23 rd with NET.. Were still waiting on 2nd opinions and the waiting is taking a toll on us. The local cancer center wants to give the same exact treatment you mentioned above.plus They want to do chemo and radiation. did it work for you? They keep telling us they dont know nothing about NET so how the heck can they suggest a treatment? hope you find your way back to this board.connie hope all is well with you

Rich94061
Posts: 3
Joined: Nov 2010

I just joined this site and was glad to find your post. I've listed all my treatments in my profile but I'm not sure if you can view it. Your experience sounds close to mine. I was first diagnosed with a very rare, incurable, form of prostate cancer and went through robotic surgery, two months of radiation and 6 months of hormone treatment. A week later I was told I had small cell cancer in most every organ and bone in my body. They said they would try a couple types of chemo but didn't have much hope. The first chemo did not work. I took 5 days off to say goodbye to my adult children ( I'm 66. Hrs old) and during this time I developed 1 to 2 tumors per DAY. My oncologist then tried etopiside and within a week the tumors disappeared. I'm now on my 7th series of chemo and just got the news that my markers more than doubled when I thought they would continue dropping to the point of remission. I was told if the etopiside had not worked I would have died within 1 to 2 Weeks.
I'd love to talk to you as I don't understand the impact of my marker rise. Is this normal. I have to retest next week to see if it was a lab error.
Thanks for listening.
Rich94061

Rich94061
Posts: 3
Joined: Nov 2010

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.

suzie21
Posts: 1
Joined: Feb 2011

Hi Rich,
My dad was diagnosed with small cell of the prostate this past Nov. Unfortunately, his tumor did not respond to first line chemo. The response rates for refractory small cell are usually very poor. What was your 2nd chemo? Its amazing that you had a good response to 2nd line therapy. We're also going to look into low dose temodar--its being used for a phase 2 trial at MSKCC. Ive heard it has minimal side effects from an oncologist there.

jports1049
Posts: 2
Joined: Dec 2010

Hi everybody, My mother was recently diagnosed with small cell neuroendocrine cancer that primarily showed up in her colon. It has spread throughout her liver and there are two lesions on her lung as well. She is starting Chemo today. She has had the original tumor in her colon removed - it was 8 inches! The liver is inoperable, according to our doctor. She is currently seeing a doctor at the Leever Center in waterbury, ct, but we are also getting a second opinion through Dana Farber in Boston. We also will be working with a nutritionist too.

I am wondering if anybody knows of any educational resources about this type of cancer. I am having a hard time finding a lot of information on it. I would like to do my research to make sure we have all of our bases covered. Any advice would be great. Also any advice on how I can help my mom stay positive and keep going is very much appreciated.

klisesr
Posts: 15
Joined: Nov 2010

It sounds like your mom has been diagnosed with an aggressive neuroendocrine cancer, and hopefully she is seeing the right specialists. I have a less aggressive form of neuroendocrine cancer - nonetheless, not all physicians are equally skilled at the treatment. I would suggest you visit http://carcinoid.org/ and seek a specialist from the list of physicians provided on their website. Another website is caringforcarcinoid.com.

Best wishes - just being there to support your mom in her journey will mean more than you could ever know. :)

CKaye
Posts: 2
Joined: Feb 2012

My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

mr steve
Posts: 286
Joined: Sep 2009

We have been fighting for 4 years now. good luck

joann p
Posts: 50
Joined: Apr 2012

Good Day,
My name is Jo-Ann and first and foremost I want to say God Bless you and your family for dealing with this unGodly disease. my husband was recently DX with Neuroendocrine Stage VI with primary site in Colon, tumor removed, 2 lymph nodes involved but met's to the liver with 5 to 6 tumors. We started on VP-16 and Cisplatin this past week. Just need to have some support. I am an ED nurse and recently more and more of my patients have had cancer, and everytime I hear this word, I cry... I just need someone to talk, vent and reassure me there is help!!!

joann p
Posts: 50
Joined: Apr 2012

CKaye,
My husband was recently diagnoised with the same thing, but I am not sure it is non-functioning. He went for a follow up colonoscopy and they found a tumore. Got the path report and it was neuroendocrine, small cell, poorly differentiated. So far, it is in his liver and lymph nodes. Last yead he had prostate cancer, and was treated with 44 sessons of intense radiation. We haven't gone to the oncologist yet, that is scehduled for Wed. Any and all inout you have would be of great healp!!!!

joann p
Posts: 50
Joined: Apr 2012

Hi all,
My husband, in 2010 had left sided colon cncer, had surgery for same, it was an adneocarcinoma and all the path reports came back negitive. Out oncologist sent his tissue sample out and the Oxytype said that the chance of reoccurence wa 17%. In 2011, he was diagnosed with Prostate CA, had 44 rounds of radiation. PSA level went down. Last week, April 11th, he went for a follow up colonoscpy and was told yet again, he had cancer, but in the cecum. The path report was Neuroendocrine Cancer, small cell, poorly differential. He had a resect last week, removed 2 nodes on his liver. Our surgeon told us that it is in the liver and lymp nodes. I haven't seen the full path report yet. We have had it sent to out oncologist for review. Has anyone elese had this same issue!!!!! Needless to say, I am devestated. he has no sympomt's,never did....all input would be greatly appreciated!!!! God Bless you all!!!

PatrickInNJ
Posts: 1
Joined: May 2012

Hi, CKaye. My wife was diagnosed just a month ago with exactly the type of malignancy that your son has. Small cell neuroendocrine cancer ANYWHERE in the body is rare. For the pancreas, it's almost non-existent. I wanted to see how your son was doing.

My wife has had one round of chemo so far....etoposide/carboplatin....it has definitely helped her. I think, without chemo, she would have been gone a few weeks ago. She will be doing round 2 this week.

I know the future looks bleak, but I did manage to find some survivor stories online. I also think she will do well if we can get her own immunity functioning as strongly as possible, once the chemo is over. Nothing will stop a cancer faster than a person's own natural killer cells.

I wish everyone good luck and NEVER,NEVER,GIVE IN!!

joann p
Posts: 50
Joined: Apr 2012

Hi Patrick,
My name is Jo-Ann and my husband is presently batteling neuroendocrine cancer of the colon, small cell, poorly differentiated. I too also live in NJ. Where are you going for treatment??? It is truely a difficult thing to deal with, and I know you feel the future is bleak, I also, some day's feel like that, but don't give into it... FIGHT FIGHT FIGHT as we all are doing. If you need to chat, my e-mail is nrz83@aol.com.
It in with others,
Jo-Ann

joann p
Posts: 50
Joined: Apr 2012

Hi Patrick,
My name is Jo-Ann and my husband is presently batteling neuroendocrine cancer of the colon, small cell, poorly differentiated. I too also live in NJ. Where are you going for treatment??? It is truely a difficult thing to deal with, and I know you feel the future is bleak, I also, some day's feel like that, but don't give into it... FIGHT FIGHT FIGHT as we all are doing. If you need to chat, my e-mail is nrz83@aol.com.
It in with others,
Jo-Ann

CKaye
Posts: 2
Joined: Feb 2012

Update:  My sons residual tumors in liver and pancreas are still stable, about 17 months since last Chemo.  Gained weight.  Taking Creon for pancreatic deficiency (pancreatic enzymes). 

 

My son was diagnosed February 2011 with a poorly differentiated, small cell, non-functioning neuroendocrine cancer of the pancreas with spread to liver and supraclavicular lymph nodes. Tumor affected adrenal gland and bowel - inoperable. Treated with etoposide and cisplatin and had remarkable response with over 50% reduction in tumor size. Still has mass in liver and pancreas. Progression free for 6 months after chemo. Was off all pain meds, but is starting to have some pain again. The lack of information is particularly difficult for this rare type of cancer, so I understand your situation.

His oncologist has communicated with Johns Hopkins oncologists. Not sure what we will do when it starts progressing again. Choices seem to be slim. David is on and off Medicaid, which also makes it difficult.

Just trying to take one day at a time and be thankful for that day.

pancreas1
Posts: 4
Joined: Aug 2013

I was diagnosed July 2012 with poorly differentiated small cell non functioning neuroendocrine cancer in pancreas tail, spread to liver(all over) and omentum.  I was treated with 5 rounds of cicplatin and etoposide and had a 'complete response to chemo' that is now in the 10th month with clear CT scans and blood work.  I had NO symptoms other than a very sharp pain in my back the day I went into the ER and it was found.  I am 37 years old and healthy.  I am told it is uncurable advanced cancer but i am confused at how it can seemingly be gone now.  Any information on recurrence would be great.  Just very nervous about when it may happen and how will I know in time since I never had symptoms before.  

Sehmom
Posts: 4
Joined: Aug 2013

My mother has the tumor in her lungs as Well, said to be inoperable. Wanted to see what your second opiniDadaism. She has done 8 rounds of chemo Thus far.

edward 71
Posts: 2
Joined: Mar 2012

We saw that there was a Rich94061 making comments. Can you please post so we can ask you some questions? Your situation looked so similar to ours. Or anyone else out there that can give us information. My husband was just diagnosed and started chemo this past Monday, March 5, 2012. He has Neuroendocrine small cell cancer with prostate being the primary site, he has it in 4 places in the bone and lymph nodes. He also has an aggressive prostate cancer as well. He is being treated with Etoposide and Carboplatin.3 days on 18 days off of chemo. Thanks!

PamSchroeder
Posts: 1
Joined: Mar 2012

Please email me or message me if possible. My husband is 49 and was diagnosed almost one year ago. he is receiving tx in Houston and we actually go for scans on monday. I have been searching for a year to find another NEProstate cancer patient. My email is bobpamtay@suddenlink.net and would love to talk to you. Thanks
Pam

edward 71
Posts: 2
Joined: Mar 2012

My husband is currently going through chemno (carboplatin/etopside)3 days on 18 off, with hormone shots. He has had 4 rounds, and will be getting a CT scan at the end of May. A decision will be made after the results of this test. He has tolerated the treatment with no problems. Please tell me what process your husband is currently going through. I know there are trials going on regarding small cell! Thanks, Kay

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Hi Everyone!

Those of us who are going through rare cancers need to post...a lot! There is no information to be had and we only have each other to depend on. My husband was diagnosed at the beginning of May with Gastric cancer (One doctor said stage 3 another said stage 4) that had metastasized to the liver with "numerous" tumors. It has also been referred to as Small Cell cancer and Neuroendocrine Carcenoma. No wonder we are confused! When I ask if these are all the same I get various answers.

After two chemo rounds he appears to be responding to treatment. Not that it's been easy. He has had profound nausea and dizziness. His treatment is: one week consisting of Mon. Cisplaton & VP16(Etoposide), Tues. & Weds. just VP16, Thurs. a shot of Neulasta. He also takes 4 MG of Dexamethasone Thurs-Sat. 2 times a day. Then 2 weeks off with just labs and CT Scans once each week.

This is what I have learned on my own: NO ONE has an expiration day stamped on them! The statistics you find on the internet is YEARS old. They have come a long way in just the last year. Our doctor told us what he is using this year isn't what he used last year. There are no statistics for these drugs. There is no way they can know how these will work, only that they do. Everyday brings a new day a research to light, they will find a cure I'm sure of it.

Until my husband is in remission, I will fight tooth and nail for his life by staying informed and above all, staying positive! I am keeping a journal of this so I can see the improvements just by looking back a few pages. They may be small improvements but it's a battle won as far as I am concerned. Move forward, love unconditionally, love deeply, smile, have a life, make each day count, none of us no how long we have left.

I intend to post often and offer our experience to anyone who wants to read it. Please feel free to chat with me.

joann p
Posts: 50
Joined: Apr 2012

Sooze,
I read your story and I see my plight in it... My name Is Jo-Ann and in April, my husband, who had left sided adenocarcinoma of the colon in 2010, went for a repeat colonoscopy and low and behold, a tumor was found... no symtpoms, just called an incidental finding..with a node on the liver removed....the path report was neuroendocrine stage IV A. The PET/CT scan show's 5 to 6 lessions on the liver with several lymph nodes involved.... On May 14th, he also started on VP 16, he had 1 8 hour session that consists of 2 hours pre-hydration, decodran, Zofran, VP-16 for 90 minutes,Manitol, Cisplatin for 2 hours followed by another 3 hours of hydration, then 2 sessions with just the decadron, Zofran and VP-16. he has had 2 sessions thur far. He doesn't take any extra steroids during the week. He only needed 1 shot of neulasta after the first session that brought his WBC count to 28,000...he had lab work after the first session.. the numbers were good so he didn't need repeat labs.... he has 3 weeks off then repeats the sessions, he will have 6 sessions total, then CT scans every 2 months there after.. Our oncologist is VERY optomistic with this course of treatment.. he has been tolaerating the treatments very well, only feels fatigue on the 3rd day after treatment, but bounces back...no nausea, no vomiting, very mild diarrhea for 1 day only... I know what you are feeling... I have read all the death sentence articles.. I am an ER nurse and it seems that almost every ther pateint i care for has cancer, Im never able to forget about it for 1 second....there is hope, recently my friend took care of a man who has had the same illness as our husbands and he is 10 years living... and a good quality life...I wish you the best.. please keeep in touch....

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

You entry is a little more detailed than mine and I see I left out the anti nausea drugs and steroids that my husband also gets. My husband (Michael) had a lab yesterday and everything came back normal. Liver function is good, etc. His white blood cell count is elevated, we couldn't be happier. He will have a CT scan next Monday to see how much the tumors have shrunk.
Today he has told me so far the dizziness has left him, even thought the weakness remains. He is worried about the weight loss, (About 23 pounds since first of May)and the muscle loss. He is anxious to get walking and mild exercise so his muscles don't atrophy.
We have a lot of hope, I believe if you fight this terror you have a much better chance of surviving it. We are in it for the long haul. I know what you mean about not being able to forget about it. You have it worse being a nurse, but it seems every TV show , every commercial, has to do with cancer. It's like when you are pregnant all you see is pregnant women. :)
I hope other join this thread and bring hope and success stories here. The future looks brighter already!

joann p
Posts: 50
Joined: Apr 2012

Sooze,
My husband actually gained 3 lbs between his sessions. I give him Boost, Carnation Instant Breakfsat drink ice cream floats daily... he enjoys these very much...I am so glad to have someone who is going thru the same ordeal as I and my husband...let's keep in touch...
Jo-Ann

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