Octreotide shots

24 Posts | Page(s): 1 2 3  Next 

Octreotide shots

by lloyd1 on Mon Jul 26, 2010 02:37 PM

Quote | Reply

My husband has carcinoid syndrome.He was getting 40mg octreotide every 28 days.When that stopped working a year ago he started getting the shot every 21 days.Now that isn't working so he is getting it every 14 days.So far this is not working either!He is even having diarrhea in the night now.Other symptoms are hot sweats,dizziness,shortness of breath,extreme fatigue and sometimes a cough.He was diagnosed in 2007 with primary in small intestine with metasteses to the mesentary,lymph nodes and too many tumors in liver to count!!They tried liver ablation and could not do it because of the amount and size of the lesions.

He took avastin for 16 months(trial)At the end of that time his chromogranin A skyrocketed  so they discontinued that in December.

Has anyone else received the octreotide or(sandostatin)this often??His chromogranin fluctuates monthly between 945-2400.

Any input is appreciated,

Judy

 

 

RE: Octreotide shots

by Jenholm25 on Mon Jul 26, 2010 10:59 PM

Quote | Reply

Judy,

They have Sandostatin LAR daily injections.  I am starting those since my 3 month Sandostatin shot worked for about 3 weeks.  I don't know if it will help him or not, but it's worth a shot (hey I made a funny and didn't even plan it that way!  :) ).

He can take 1 to 2 shots a day plus rescue shots (up to a total of 5 shots a day). 

Hope this helps!

Jen

 

RE: Octreotide shots

by Oncrx on Tue Jul 27, 2010 01:56 PM

Quote | Reply

the sandostatin LAR should be given once a month.  You could increase the dose and/or give it every 3 weeks.  The regular Sandostatin could be given for breakthru symptoms several times a day.  If you have problems controlling symptoms, make sure you physician is aware.

RE: Octreotide shots

by lloyd1 on Thu Jul 29, 2010 02:28 PM

Quote | Reply

The doctor is aware. He's the one who increased the shot to every 14 days.  Like I said,he got the shot(40mg)every 21 days for a year and stopped working after that.  That is why they are trying this every 14 days.  It hasn't made much difference yet so we are probably headed back to Boston again!!

RE: Octreotide shots

by Sharonjoy on Sat Aug 07, 2010 06:38 AM

Quote | Reply

Judy,

I read your letter yesterday and I prayed for you. Then I realized you wrote that your husband had many liver tumors, but you did not mention Chemo-embolization. You had mentioned ablation.

I have read that with embolization, doctors can inject the larger tumors in order to kill them. Then with the larger tumors out of the way, the Sandostatin works better on the smaller tumors.

I would have the emolization done, but my tumors are too small. They have to be 1 cm, and I have the microtumors. It sould like your husband may benefit from embolization. Have you aksed about this?

SharonJoy

RE: Octreotide shots

by lloyd1 on Sun Aug 15, 2010 01:26 PM

Quote | Reply

On Aug 07, 2010 6:38 AM Sharonjoy wrote:

Judy,

I read your letter yesterday and I prayed for you. Then I realized you wrote that your husband had many liver tumors, but you did not mention Chemo-embolization. You had mentioned ablation.

I have read that with embolization, doctors can inject the larger tumors in order to kill them. Then with the larger tumors out of the way, the Sandostatin works better on the smaller tumors.

I would have the emolization done, but my tumors are too small. They have to be 1 cm, and I have the microtumors. It sould like your husband may benefit from embolization. Have you aksed about this?

SharonJoy

Thanks Sharon for your input.  My husband has "too many to count"tumors in the liver.  Some are as large as 6-7 cm. They are intertwined with each other like tree branches. He has not had chemo-embolization,but I do intend to ask at our next appt. He is not doing well even w/the shots every 14 days. Has had an increase in pain in the last week.  Maybe better next week!!It is a crazy disease and difficult to predict. His chromogranin did finallycome down last week to 328!!Unfortunately that didn't help the way he feels.

Have you ever read sunny carney's blog about carcinoid?She is simply amazing.  It is sunnycarneyfoundation.  Very worth reading.

RE: Octreotide shots

by Katsen57 on Fri Aug 20, 2010 12:53 AM

Quote | Reply

dear judy,  my heart goes out to you and your husband. As I understand it, Sandostatin does sometimes stop working. I have heard that you can try the Short term sandostatin for a while, generally three times a day every eight hrs. to "jump-start" the long term (LAR) sandostatin. I have heard this works. But I do not speak from experience. The shortness of breath may be a heart issue.  The seritonin can scar the heart valves so I would look into a Cardiologist that knows Carcinoid.  I go to Dr. Jerome Zacks in NY. He is well versed in the treatment of Carcinoid. Phone # 212-289-8400. He may know someone to refere you to if he is not in your area. You may want to speak with a rep from Novartis about the "Jump-starting" the sando issue. They are the ones that manufacture this med. I understand they are working on a new med that may contain more "markers" that will attach to the tumors.  I also had radio frequency ablations on 2 of the larger tumors on my liver and the dr resected part of my liver but many tiny tumors were "peppered" on the liver. So I sympathize with your husband.  Has he had part of the liver removed?  It grows back. It is the only organ that regenerates. Amazing! I wish you all the best!

RE: Octreotide shots

by lloyd1 on Fri Aug 20, 2010 01:11 AM

Quote | Reply

On Aug 20, 2010 12:53 AM Katsen57 wrote:

dear judy,  my heart goes out to you and your husband. As I understand it, Sandostatin does sometimes stop working. I have heard that you can try the Short term sandostatin for a while, generally three times a day every eight hrs. to "jump-start" the long term (LAR) sandostatin. I have heard this works. But I do not speak from experience. The shortness of breath may be a heart issue.  The seritonin can scar the heart valves so I would look into a Cardiologist that knows Carcinoid.  I go to Dr. Jerome Zacks in NY. He is well versed in the treatment of Carcinoid. Phone # 212-289-8400. He may know someone to refere you to if he is not in your area. You may want to speak with a rep from Novartis about the "Jump-starting" the sando issue. They are the ones that manufacture this med. I understand they are working on a new med that may contain more "markers" that will attach to the tumors.  I also had radio frequency ablations on 2 of the larger tumors on my liver and the dr resected part of my liver but many tiny tumors were "peppered" on the liver. So I sympathize with your husband.  Has he had part of the liver removed?  It grows back. It is the only organ that regenerates. Amazing! I wish you all the best!

Thanks for your response.I have been studying this disease on line for three years and am well aware that the octreotide may be wearing out!!The doctor has mentioned adding daily injections if the need arises. He is having less pain this week but generally feels lousy.

Novartus has a new drug called infinitor which is being tried on carcinoid.  Trial research of course so not covered be insurance. We have discussed it some w/the doctor.I'm feeling quite strongly about going back to Dana Farber and checking on the chemo-embolization.  Sounds a little scary but good results for many. My husband really prefers to not know and not talk about it!!!I study and keep it to myself.  he never asks what I have learned. Everyone has different ways of coping.

RE: Octreotide shots

by SecretChef on Thu Jan 20, 2011 02:12 AM

Quote | Reply

On Aug 20, 2010 1:11 AM lloyd1 wrote:

On Aug 20, 2010 12:53 AM Katsen57 wrote:

dear judy,  my heart goes out to you and your husband. As I understand it, Sandostatin does sometimes stop working. I have heard that you can try the Short term sandostatin for a while, generally three times a day every eight hrs. to "jump-start" the long term (LAR) sandostatin. I have heard this works. But I do not speak from experience. The shortness of breath may be a heart issue.  The seritonin can scar the heart valves so I would look into a Cardiologist that knows Carcinoid.  I go to Dr. Jerome Zacks in NY. He is well versed in the treatment of Carcinoid. Phone # 212-289-8400. He may know someone to refere you to if he is not in your area. You may want to speak with a rep from Novartis about the "Jump-starting" the sando issue. They are the ones that manufacture this med. I understand they are working on a new med that may contain more "markers" that will attach to the tumors.  I also had radio frequency ablations on 2 of the larger tumors on my liver and the dr resected part of my liver but many tiny tumors were "peppered" on the liver. So I sympathize with your husband.  Has he had part of the liver removed?  It grows back. It is the only organ that regenerates. Amazing! I wish you all the best!

Thanks for your response.I have been studying this disease on line for three years and am well aware that the octreotide may be wearing out!!The doctor has mentioned adding daily injections if the need arises. He is having less pain this week but generally feels lousy.

Novartus has a new drug called infinitor which is being tried on carcinoid.  Trial research of course so not covered be insurance. We have discussed it some w/the doctor.I'm feeling quite strongly about going back to Dana Farber and checking on the chemo-embolization.  Sounds a little scary but good results for many. My husband really prefers to not know and not talk about it!!!I study and keep it to myself.  he never asks what I have learned. Everyone has different ways of coping.

Judy,

I got islet cell pancreatic cancer in 1998 and had a whipple surgery.  Then it metatisized to my liver in 2004.  I have had numerous chemo-embolizations with great results.  My tumors have been as big a 7cm x 6.5cm.  The embolizations have reduced them and then in about 2 years they have grown back.  I have "too many to count" tumors mainly in my right lobe and a number in my left lobe.  I have also taken Sutent from Pfizer for the last year as the tumors grew too large to embolize again.  They have now shunk by 47% the 5 largest and 64% the smaller ones.  If you want more information just let me know.

RE: Octreotide shots

by cjmaz on Mon Apr 11, 2011 07:40 PM

Quote | Reply

last month i was dianotics with 2 Cariond tumors only on the surface of my bowel  (about 1.5x2cm) and another "according to test  deep inside the liver (about 2.5x2.5cm)

After numerious test including a octrscan the doctors agree that these are the only tumors they see.  One Doctor at NorthShore Hospital on lond Island is suggesting surgury to remove them. Origianlly he was think just liposcrpay until he saw how deep the one in the liver is.  He siad the one on the bowel is ok to remove but his option for the one in the liver was to remove half the liver or to use Radiofrequency Ablation and Irreversible electroporation to remove the one in the liver. 

However when i talked to the other surgen (i havent decided on a surgen yet)  this surgen is from Cornell Medical center in NY is suggersting to hold off on surgury and to start with Octreotide shots.  

I was finally accepting the surgury option but now I'm confused.  (Sorry for all the spelling errors)

24 Posts | Page(s): 1 2 3  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.