lloyd1's Message Board Messages

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Best of luck and may God bless both of you!

Have you had this discussion with your husband? It really is his decision if he is able to make it.My husband knew from the beginning he did not want to be made sick or take things that would make him live just a little longer.It is a personal decison and one I hope you have talked about by now.Good luck with your decison making and may God Bless you both!

Hello,My husband passed away two years ago after a 5 year battle with carcinoid.I recommend you read Sunny Carney's book called "the sunny side of cancer" it is a heart wrenching story of a mother trying to live for her children.She was an isnpiration to all of us and you will be able to follow the treatments she had that kept her alive a very long time!

Good luck to you,


On May 10, 2012 5:32 PMMarilyn19wrote:

You make me feel ashamed of myself. We (Dave) have already lived a long time, and at 37 years old, here you are facing what could be a struggle within your future.  Our niece finally had to have exploratory surgery before they found a carcinoid tumor somewhere in the intestines... but, they found it! We found out yesterday, Wed. that Dave can have the surgery, and it is set for 5-21.  We are hoping and praying everything will stay like it is, and the doctor will be able to go ahead with it. I hope so much that your carcinoids will show up or just GO AWAY!!

Your information was very helpful to us, but I hope we never have to show it to our doctor..... because it would mean that the surgery was a success :)  I am going to print your answer. Thank you again, and I am 'pulling for you' and your mom!

I don't know if you are aware of Sunny Carney and her ongoing fight with carcinoidcancer.Ifnot you need to read her blog sunnycarneycarcinoid.Shehas been an inspiration to all of us dealing with this mysterious disease!

She also has written a book called "The sunny side of cancer"

I am a widow of a carcinoid patient.I think every case is so diferent it is hard to know what to expect on an individualbasis.Ifyou have specific questions feel free to ask.

Judy H.

On Sep 30, 2011 11:15 PM Gert6868 wrote:

My hsband was diagnoied with Carcinoid Syndrome last June, BUT.... His primary cannot be found and there is nothing they can do for him... Only thing that is being done is the Sandostatin shot once a month.. My biggest concern is Life expectany.. What can we expect???

Carcinoid is a very slow growing cancer.Some people live 10 -20 years after being diagnosed.A testimony to that is Sunny Carney.You can read her blog at sunnycarneycarcinoid.

My husband has not had this treatment,but he had to go to 40 mg of sandostatin every 14 days. It did make a big difference!

On Jul 17, 2011 7:17 PM ralphedwin wrote:

Hi Judy,  I have a mid gut carcinoid with liver involvement and am also being treated at Dana Faber with 40 mg of Octreotide monthly. They are suggesting similar surgery.  Did it help your husband? Is the intestines and mesentery now tumor free? My tumor is about  1cm.x2cm. The Octreotide stopped the facial flushing, but I never had the diarrhea.  Feel sub par most of the time especially when getting up and walking after sitting or driving for a while. This goes away mostly after being on feet for about 10 minutes but sometimes can be particularly bad when climbing stairs or carrying something.  Who is the doctor at D/F to see about the avastin treatment?  Thanks  Ralph

Hi Ralph, That was a really old post that you read.I will try to update you on Gary's progress with this disease.Removi ng the tumor is always a good idea if it is possible.As far as I know.The y got all of the tumors from that region.He also has metasteses to abdominal lymph nodes which have not grown much.The liver is the biggest concern as he has too many to count there and some are as large as 6 cm.He stayed on the avastin for 16 months with pretty good results.Then his chromogranin skyrocketed and they stopped the treatment.It has been between 1,00- and 2500 for the past 18 months.

He went from getting the octreotide evry 28 days to 21 days and for the last year has gotten it every 14 days.His condition is fairly stable.Contin uous diarrhea and flushinf with night sweats and shortness of breath.Most any exertion now causes him to be dizzy and short of breath.He is on hold w/this treatment for now.The next step may be chemoembolization at Dana Farber.we will put that off as long as possible.The doctor at Dana farber is Elizabeth Chan,I don't know if they are still using the avastin on carcinoid patients or not as it was a clinical trial.

There is a mother of three that has an excellent blog.It is sunnycarney carcinoid foundation.She has been through a lot but continues to have hope and try new things.

Best of luck to you,


On Jul 07, 2011 12:09 AM lindat wrote:

On Jul 04, 2011 10:35 AM smylee wrote:

Hi i am so new at this but was reading your post here  so your husband has had this for 4yrs now? so he takes the shots every 2 weeks huh? wow i do mine 28 days but i have a lot of break throughs  i hate to up the doze for what will they do when our bodies get use to this dose? my primary was in the small intestine too and they are all over my liver now  Dr hasnt said anything about removing them  guess i have a few big ones and several smaller ones. wonder what will be the next step ? i like coming here and read what others have done or doing about their cancer   its a scarey road i tell ya :(   thanks  vicki

Hi Vicki,

Though your question was not directed to me, I'd like to say welcome.  I was diagnosed in October of 2009 and to date have had nothing except the sandostatin injections.  I take 30 mg of the sandostatin LAR every 28 days, plus I've started taking 2 of the short acting injections each day.  My scans have been stable and I'm due for my scans next week again (ugh).  I'm not concerned right now about my body getting immune to the sandostatin.  I want to enjoy my life and NOT worry about that until the time comes.  When it does, there are clinical trials available that are similar to sandostatin that my oncologist has mentioned to me.  My primary tumor is in the distal ileum, with mets to liver and bone (spine).  BUT I LOOK great, ha ha!  Don't you love those remarks?  I guess I'll really know when they STOP telling me I look great.  Pardon my cancer humor, but I've found it's a vital part of living with this disease.  Feel free to send me a message anytime.


Hi Vicki,

Yes my husband gets his shots every 14 days(40 mg)He also started every 28 and then every 21.His primary was in small intestine with multiple metasteses to the liver.They tried liver ablation but when the dr. got in there he found too many and all intertwined so he didn't even try.His next step may be liver chemoembolization.His doctor prefers he not do that until absolutely necessary.he has good weeks and bad weeks.The dirrahea is still a pretty big issue even with the shots.Some days worse than others.

He tries to continue doing what he can on the days he's feeling well.Shortn ess of breath has become an issue when he exerts himself.We can only take it a day at a time and enjoy the good days.Thankf ul it is a slow growing cancer.He was diagnosed in March 07.Obviou sly had had it a long time at that point with the amount of metasteses.He did try the avastin for 16 months and it worked quite well for him.They stopped it when his chromgranin took a major jump.Is your chromogranin high??No one mentions that too often.His has averaged between 1,000-2500 for the last 18 months!Good luck and keep in touch!


On May 28, 2011 7:42 PM ccmckenna wrote:

On Oct 12, 2010 12:13 PM JennyPackham wrote:

Please please i really need some help from you Noids!  I have already asked once but i do need help.   With well spread NETs i am on morphine patches and monthly Sandostatic LAR jabs.   I spend so much of my days sleeping - do any of you have this prob??   Is it a side effect of this cancer?    Please find a min to respond, I'd so much appreciate it x Jen x


I too have had a lot of trouble with exhaustion -- sleeping 10 - 12 hours a night and then naps during the day and finding it difficult to get up to even take a shower.

I think some of that (for me at least) has been due to depression as well as chemotherapy side effects. Taking anti-depressants (Celexa and Wellbutrin) has been helpful. You might want to talk to your MD about that if you haven't already.

My husband has had metastatic carcinoid w/the syndrome for 4 years.His biggest problem other than the diarrhea is severe exhaustion.He can sleep 10-12 hours at night and then go right backto sleep in his chair when he gets up.Someti mes he does this for 2-4 weeks and then has a couple of better weeks.There is no strict pattern to this disease for everyone!!The sleepiness is very common as far as I can see and have not seen where anything he does or eats makes a difference!!

Hi Vicki,

My husband just went back to the doctor this week.He has been getting the shot(40 mg)every 14 days for almost a year.Seems to be going downhill right now.The doc didn't see any point in increasing the octreotide right now as he feels no better the week.He gets it than the next week(that tells the dr. it isn't really working)He is calling Boston this week to see if they have anything new to try.Also talked about chemoembolization.My husband's chromogranin is now 2534!!Do you have high chromogranin??

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