Octreotide shots

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RE: Octreotide shots

by lloyd1 on Thu Jul 07, 2011 01:50 AM

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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.

LindaT

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!

Judy

My last injections did not work. Diagnosed 2008

by Katehinman on Fri Nov 06, 2015 07:58 AM

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Mine was found in the galbladder.  Been getting injection every 4 weeks.  Been working but it did not work with my last.  I heard after so long the treatment stops working.  Im calling my doctor in the morning and sk for another one.  My symptoms are pretty bad.  However, i have been going thru a lot of stress.  Wonder if that has anything to do with it.  When im not on the treatment my chromagranin is high.  Last two bloodwori,ks showed it elevating.  Im new to the group and i am sorry that I have more questions then answers.  Has he been throwing up with it now?  I also have type 2 diabetes.  Kate

RE: My last injections did not work. Diagnosed 2008

by Randolph51 on Fri Nov 06, 2015 11:29 AM

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The last time I posted here was about 4 years ago, so here is an update. I was on Dr Fine,s protocol of CapTem until June of this year. That would make it 5 1/2 years. Xeloda at 2500 mg 14 every 28 and Temodar at 460 mg. 5 every 28. My primary was in the small intestine and two large tumors in lymph nodes in the mesentary. The baseball and golf ball analogy still applied as they stayed stable, no shrinkage. They were removed by Dr Fraker at UofP. Great surgeon, got everything as far as a follow up octreatide scan showed. I was left with the liver. When I started it was covered about 30-40%. After 5 1/2 years maybe 5 small tumors were left that lit up the octreatide scan each was less than a centermeter. Next stop is liver emoblization to try and get rid of those. Did half the liver two week ago and will do the other half just before thanksgiving. No real issues of side effects. Not yet anyway, there is still another treatment to go. I chose the chemoembolization over the Y 90 and the bland. Figured to add some chemistry ro the bland and not sure the Y 90 was worth the effort. Thee is no great data to differentiate the relative effectiveness. Anyway that is the current story. We each have a tale to tell and this disease is not well understood. It sites like this that give each a little more info to work with. Good luck to all. Best

RE: My last injections did not work. Diagnosed 2008

by LauriG on Sun Nov 08, 2015 02:42 PM

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Hi Kate,

I am on 40mg Sandostatin (Octreotide) every 3 weeks (was initially started on 20mg every 4 weeks but has to keep being increased to stay effective). I am not sure if your insurance company would limit dosages or frequency, but we follow the pattern of my symptoms - first increasing frequency to 3 weeks, then when that no longer worked increased the dose. My next option is Lanreotide (Somatuline Autogel). This is receiving great reports from doctors on some of the carcinoid websites. I would recommend discussing an increase of dosage / frequency with your doctor, then Lanreotide is the next option. Hope you get some assistance. Lauri.

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