Caring Conversations

Anyone else with Goblet Cell Carcinoid?

Rebecca — Thur, 17 Jul 2008 01:09:04 GMT

I just finished writing two posts that disappeared and I don't have a bit of energy left to write more than this....

Anyone else out there with Goblet Cell Carcinoid? I was diagnosed in Nov 2006...have had several surgeries, have elevated tests at this point, and am pretty sick. Fired yet another supposed Oncologist, and have an appt with a doctor that looks promising at the end of this month.

Just looking to see if there was anyone else out there with Goblet Cell Carcinoid? Will psot more another time.

Warm Regards for you all,
Rebecca

Forum: Newly diagnosed (<1 year)

Dealing with doctors

CalliAnderson — Mon, 16 Jun 2008 08:25:46 GMT

Hi there.
I'm 35 and have been ill for a while.
Approximately 6 months ago things started getting worse fast.
I started having worse cramping than before, and daily diarrhea. I started flushing and having horrid mood swings. I'd turn beet red, my heart would race, and sometimes it lasts up to six hours. I'm getting more used to it, but still when it happens I feel like I've gotta run, get out of my skin, can't have anyone touch me, and sometimes will have to jump up and down. It's like a hot flash mixed with a panic attack, but extreme.
Just recently I started having some shortness of breath with it.

The doctors don't know what to do. They tested my blood seratonin and it's elevated. They did an octreotide scan and it's normal.
However, they do know I have a pretty good sized mass in my thyroid, a small on in one parotid gland, they are scattered through my spine, there is a tiny one in my liver. Those were all found BEFORE the carcinoid syndrome symptoms began.

They wanted me to go to an oncologist. There is only one around, six hours away, that treats carcinoid, but he told them he didn't want to take me unless the octreotide scan was positive. It wasn't.

The doctors don't know what to do, so nobody's really doing anything.

What in the world is next? It's a pre-diagnosis, without the oncologist it isn't a full one. They've not had a carcinoid patient before.

I've had to quit my job. I now have arthritis, I also have peripheral neuropathy which has me using a walker on bad days. (the doctor said pressure from the mass on my lower spine might be the culprit and they can't touch those because they're wrapped in nerve bundles) I urinate blood regularly, have a low grade fever quite often, and my white blood cell count is elevated 90% of the time they check it. The gynecologist said I'm pre-cancerous from uterine cancer, and said it's because of the hormone imbalance.

And since I'm not diagnosed, I can't even get on disability. It's amazing.

What do you do when you live in a place where nobody is familiar with this and doesn't know what to do? When the doctors don't seem to be able to communicate with each other?
I actually had a hospital send me an email asking me to ask my doctor to order certain tests and giving me the fax number for them to send the results to. I did so, then THEY got upset that they had asked me instead of doing it themselves and told me not to worry about it, I was their patient and that was not my job, told me to sit back and relax. Which was nice.
But then they didn't order or do the chrogramaton A test they were supposed to run. About a month after that, the endocrinologist called to ask me if I ever had it done.

Kinda crazy.

If you have any idea of what I can do please feel free to tell me. I'm now on a state medical card, so that throws a wrench in things and limits my options. I pretty much just have to go where they approve and deal with what they say and I can get kicked off the program if I'm not nice to the doctors, so I can't get too aggressive with them and am afraid of telling them that it isn't really acceptable to just let me sit here.

My understanding from what the info the endocrinologist sent me is that when our seratonin is high, it's your liver throwing that out and it only does that if the cancer has metastacized. The info also said that the average lifespan after symptoms start is three years and I started having them at least six months ago, so sitting here while they do nothing because they don't know what to do is weird. I have kids! I'm sick. I'm exhausted. I want to know about how long I might have. That would be a good thing to know.

And also struggling with just not caring how long, because I'm tired. And people don't get it. I'm not skinny and emaciated. I sometimes have days where I feel fine and can walk normal and do work and be okay, and some days it's all I can do to get all the way down the hallway to get to the bathroom. I've been called a liar, have had people act like they "caught" me without a walker when I'm not trying to hide a thing! Sometimes I don't NEED a walker. The general impression seems to be that if you have one, you must need it all the time. Well, if adolase levels are down, then the swelling goes down, and if the swelling goes down that mass isn't pushed against that nerve so hard, and if it's not pushed against that nerve so hard, I don't have the intense pain from it, and without the intense pain, I can walk without the walker!

It's frustrating all around.

Goodness, how was THAT for a first post?!

I'm sorry to just come on and go off, but I finally found a place with other people who have this and wow, just the concept that someone else might understand is overwhelming in and of itself.

Forum: Newly diagnosed (<1 year)

New Member question , Carcinoid

tzzzz216 — Tue, 10 Jun 2008 05:54:24 GMT

Hi all , I have a question about Carcinoids , I was diagnosed this April with a small Carcinoid of the Duodenum , My questions is this is there always a primary Carcinoid if a small one is found, If so where are they normally found .

Thanks ,Tom

Forum: Newly diagnosed (<1 year)

Newly diagnosed-rare sites

shuckleberry — Mon, 02 Jun 2008 01:48:56 GMT

Hi to anyone out there! I had a bizarre tumor removed from my sacral region (kind of near my spine in my pelvis) last June and it had carcinoid cells in it. Unfortunately the doctors didn't do any scanning because they thought it was pretty "benign" overall. Well, unfortunately I've had the thing metastasize to my right frontal sinus and I just had a surgery to remove that one. I'm going to have an Octrescan in a few weeks and I'm really, really scared. The doctors are pretty grim because they think I must have more carcinoid tumors if one spread all the way from my spinal area to my sinus. They've never seen anything like this in the medical literature so that's not helpful either. I cry a lot and don't know what to expect. At least I'm not having any pain or other symptoms. I'm glad this site is available. I'd love to hear from other people that had the scan and how it turned out for them. Thanks so much for listening. I live in Southern California.

Forum: Newly diagnosed (<1 year)

pancreas

David26 — Tue, 13 May 2008 08:02:07 GMT

Hey all. I am 26 years old and have been ill for a while now. At first they thought I had ulcerative colits but now my gastrointerologist has been focussing on my pancreas. I actually had no idea that they were checking my pancreas until my GP told me that my GI thinks I may have a tumour in my pancreas and something about it having to do with the endocrine system. I have not been diagnosed or anything but I am really sad. I had an infected colin in January and since then I have been in hospital 3 more times for various things. I had some sort of radioactive scan a few weeks ago that was apparently looking for this type of cancer, and a blood test that tested for Chromogranin A (I got the bill today and I had no idea I had this test nor did I know what it was for until I looked it up today) and I am having a CT scan tomorrow. I have already had a CT scan and they did not find anything. I am really confused and sad about all of this and not sure what to think. They also think it might be this because I have a lot of flushing, constant tachycardia, diarrhoea for the last 9 months (well I am constipated at the moment though which is weird), over-production of acid in the stomach and other things. Is it hard for them to diagnose this diseases? Thanks everyone.

Forum: Newly diagnosed (<1 year)

New ways of treatment of carcinoid in the lung?

Stefan — Tue, 06 May 2008 06:29:02 GMT

My mother was diagnosed with carcinoid in the lung one year ago. She went through chemo therapy for several times. But now her doctor has decided to stop the chemo because the side effects are too dangerous and the tumor did not react at all. She should live with the tumor like with a pet, she was told. But before she is able to accept it we would like to know if thery any bulletin boards, new ways of treatments, ... for this special form of carcinoid cancer.

I add more detailed information about the already stopped treatment as soon as I get the information.

Thank you in advance.

Forum: Survivors (>1 year)

just trying to meet new friends

Becky — Wed, 30 Apr 2008 08:22:13 GMT

Hi my name is Becky i am 35 i live in north carolina, i was diagnosed with Carcinoid tumors and Carcinoid Syndrome in 2005 i am currently on a monthly injection of sandastatin i recently got a computer and found this conversation room through Lauren at caring for carcinoid foundation, and wanted to meet some other folks who are dealing with this disease also. Hope to hear from some of you soon lots of luck.

Forum: Newly diagnosed (<1 year)

Anyone heard of/been treated by Dr. Andrew Lowy?

JanNHart — Tue, 15 Apr 2008 07:32:14 GMT

Just heard there's a Surgical Onco @UCSD Moores Cancer Center/School of Medicine, here in San Diego, CA...supposed to be recognized worldwide for his primary interests in cancers of the pancreas, liver & GI tract, done hundreds of Whipples, including over 50 of them NETs. A newly-dx'd. Islet Cell Net (tumor in pancreatic head, scheduled for a Whipple 04/18), has been referred to Dr. Lowy & would like to hear from others who've had Whipples and/or been treated by Dr. Lowy, formerly from U of Cinncinnati & co-chair of NCI's Pancreatic Cancer Task Force.

Thanks, Jan
Dx'd. 12/03; NET P-Poma w/liver mets

Forum: Newly diagnosed (<1 year)

still trying to find the primary

sheila — Fri, 11 Apr 2008 18:23:07 GMT

I have just recently been diagnosed with a neorendocrine carcinoid tumor that is in one of my abdomenal lymph nodes, now they are still trying to find the primary tumor which they think is in my small intestine. I have had a few ct scans ,mre mra and now they are going to try a octreotide scan.Is there anyone else that has one of these scans and if so do you think they are as
good as what I read (85% effective)?

Forum: Newly diagnosed (<1 year)

We need help! PLEASE!!!

courtney1120 — Sun, 06 Apr 2008 02:06:51 GMT

My husband was diagnosed in march of 07 after bleeding from his bowels. He has had 3 tumors removed from his rectum and large intestines at 3 different times. He has severe abdominal pain and on again off again diarrhea. He has had several other symptoms including swelling of his feet and legs and flushing. His chromogranin was slightly elevated but his 24 hour urine and a octreoscan have come back negative. His symptoms continue but no Dr. seems to want to help till more tumors are found. His family Dr has put him on pain medication to try and keep him comfortable but other than that has no other knowledge of treatment. We have had oncologists turn us away and say that there is nothing that they can do till he has carcinoid syndrome and "specialists" that have said he is cured. In 9-07 his abdominal pain was so severe he was rushed by ambulance to our local hospital who released him after giving him several doses of deloted with a diagnosis of heartburn. We now have a letter we carry with us from our family dr. that states my husband suffers from well-differentiated neuroendocrine cancer to help keep confusion down. We need help! My husband is suffering and I am at a loss. What other steps can we take to find someone to help him? We live in Southern Ohio and have taken him to the James Cancer Center at OSU to no avail! Has it been this hard for anyone else??

Forum: Newly diagnosed (<1 year)

Sam100 can u help?

Deb — Tue, 18 Mar 2008 17:52:02 GMT

Hi Sam

Sorry to trouble you again but I need some help.

I signed/registered to the website you recommended but have forgotton my username/password and I can't find out how to contact them to request a new password, CAN U HELP ME RE THE FOLLOWING?

My brother has been experiencing trouble obtaining his syringes. He can get his medication and needles without a problem but the chemist/pharmacy says he is no longer allowed to give out his syringes on prescription. Would you be able to post a message for me on the NET website to ask if anyone else has experienced this kind of problem?

I have searched the internet to obtain them privately and hopefully have just ordered the correct syringes but would like to know if anyone else is having to do this.

I really hope you don't mind me asking you this but I don't know what else to do.

Hope your hubby and family are doing ok.

Kind regards

Deb xx

Forum: Newly diagnosed (<1 year)

Message for Sam100

Deb — Mon, 03 Mar 2008 12:15:49 GMT

Hi Sam

Hope you don't mind me contacting you. I have only just discovered this site and think it is a 'god send' I was so pleased to see someone else from the UK. My brother who is 53 was diagnosed with carcinoid approx 4 years ago and how hard is it to try to find stuff out here in the UK?

He injects himself 3 times a day with the Sandostatin? (if that's the correct spelling) he cannot get the once a month one here and also there is a pill available in Italy that you can take once a day but as usual not available in the UK.

I was searching the web today because he has had a particularly bad night with 'the runs' and this disease makes me so mad and sometimes like there's no one else with it, until now when I found your posts on this website.

Sorry to hear about your husband, hope he is well, my brother is due at his consultants this afternoon so hopefully he will be able to 'do something' to make him well.

My brother is such a lovely guy, still works full time, looks after his children and 2 grandchildren (who he adores) and I have spent the last few years raging as to why he got this disease, did you feel the same?

Would love to hear from you but I understand if you don't have time.

Take care

Deb from Manchester

Forum: Newly diagnosed (<1 year)

Clinical Trial Info

SherryJ — Thur, 31 Jan 2008 20:56:16 GMT

I have posted in the newly diagnosed forum, althought it is really more appropriate for me to be in this one as my husband has had carcinoid for over 5 years. It was originally found in his lung which was removed and he looked good for 2 years. It was then found in his liver, and 80% of his liver was resected about 1/12 years ago (it was originally determined that it was inoperable, but we found a wonderful surgeon in San Francisco). Everyone hoped that would be the end of it, but unfortunately it came back with a vengence last fall and is back in his liver, and has spread to bone in his femur, spine and ribs. John is now in a clinical trial with Dr. Delpassand in Houston with a radiolabled isotope labeled Indium 111 treatment that has looked promising in about 75% of the patients that have had it. He has just completed his second treatment and we are hopeful that we will get some good results. He is doing pretty well, is strong and very active, and has a great attitude which I think is the thing that has kept him going.He has not had carcinoid syndrome since his liver resection, thank the good Lord.

I am looking for any information that someone might share on treatments or trials they know are ongoing that have had promise. I am always looking for information that can make us more knowledgible.

SherryJ

Forum: Survivors (>1 year)

Questions about liver lesions and the possible diagnosis of carcinoid

CharleenC — Tue, 22 Jan 2008 20:45:20 GMT

Hi everyone, I am writing as someone being investigated for possible carcinoid, due to some symptoms I am having such s diarrhea, flushing, tachycardia, wheezing, feeling like I am going to pass out. I also have an elevated DDimer, which was NOT cause by a clot in my lung or leg (both were ruled out) and has been elevated since the summer. I had an ultrasound of my liver today, there are "specks" on my liver, the radiologist came in to scan me after the technician, and she told me she thought it was biliary hamartoma, but with my workup and symptoms liver metastasis has to be ruled out. Has this happened to any of you? Cant anyone shed more light on this? I am awaiting lab tests and a CT scan, but just hoping for more information on anyone who maybe has had this happen to them while beinginvestigated. Thank you, Charleen :-)

Forum: Newly diagnosed (<1 year)

Siblings With Carcinoid Tumors

kathyg — Fri, 18 Jan 2008 18:38:49 GMT

Is there anyone else that has experienced two or more people with a carcinoid tumor diagnosis in the same family?

My 55 year old brother was diagnosed with carcinoid tumors of the small bowel and had a resection performed in Oct of 2006. He is being monitored but is not receiving any drug therapy.

Six months later my 54 year old sister was also diagnosed with carcinoid tumors of the small bowel and had a resection done; however, she still has several tumors on her lower aorta which the surgeon was unable to remove.

My sister gets a monthly Octrreotide/Sandostatin LAR shot. She is also participating in a clinical trial. Her scans show shrinkage of the tumors which is wonderful news. My sister and I went to LSU to see Dr. Anthony and he confirmed the diagnosis and agreed that she is on the right treatment plan etc.... A surgeon in this same clinic, Dr. Wang, thought she should consider surgery for the tumors on the lower aorta once she's fully recovered from the original surgery. The surgeon gave his rationale for future surgery.

According to Dr. Anthony, the surgery would not be curative and is a tedious and risky procedure. The Oncologist that treats my sister in Colorado and Dr. Anthony at LSU as well as the surgeon who did the initial surgery, don't think she should have surgery since the tumors are shrinking.

At this point we are very hopeful that the tumors continue to shrink and there are no complications that would require surgery.

I am investigating the pros and cons of genetic screening for family members and welcome any information anyone has regarding carcinoid tumor diagnosis in the same family. There is no known history of MEN1 or any other neuroendocrine tumors in our family.

The Medifocus Guide on Carcinoid Tumors mentions genetic mutations that may predispose individuals to developing carcinoid tumors - Chromosomes 11 and 18. Anyway, there is more reading and research to be done on my part. If anyone is further along with this subject - siblings with carcinoid tumors - please feel free to share information with me.

My sister plans to register on this site as well. I think the sharing of information about the day to day challenges (what to eat and what not to eat for one example) will prove to be very helpful. Thank you all for having helped us both by sharing your thoughts and experiences via the caring for carcinoid site.

Last but not least, thank you Nancy O'Hagen for providing this valuable website.

Kathyg
siblings with carcinoid tumors

Forum: Newly diagnosed (<1 year)