Disappointed with this site!

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RE: Disappointed with this site!

by heavyd1954 on Fri May 03, 2013 04:03 AM

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Thank you very much for the information and blessings. I''ll look into as much as I can to see what will help me. This cancer seems to have a mind of it's own I've been fighting it with prayer for 6 yrs, now I have medical help because up until March of this year I didn't know what was happening to me? Now I do and it's a battle...never know what to ecspect?   God bless you also, Your friend Don

RE: Disappointed with this site!

by cpmty on Fri May 03, 2013 04:16 AM

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just remember not to get too upset, relax, listen to nice relaxing music, don't watch the news or violent, sad, bad news or TV ... the most relaxing and things your like, youtube and other websites have nice music concerts etc... or the movies or...things you like to do and don't take lots of stress. Take care. cp

RE: Disappointed with this site!

by lindat on Fri May 03, 2013 05:48 PM

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Hi Heavy,

I feel funny calling someone "heavy" but if I must :)  OK, on to carcinoid cancer.  I was diagnosed in October 2009 though I had complained of SEVERE abdominal pain for about 10 years.  Gastro doc kept telling me it was IBS and just deal with it.  When I began having symptoms of the "carcinoid syndrome", they finally started doing something because I insisted some kind of test be done!  After much testing, scans and a liver biopsy, my local hospital didn't even know what kind of tumor they were dealing with.  I know the pain you are talking about.  I try to explain to people and I just say "it's like labor pains", that's how painful it is.  After starting sandostatin, the pain went away in about a month or so, and has only returned once last week.  I was stable for 3-1/2 years!  Now my tumors are growing and my options are (1) clinical trial IF I qualify, (2) PRRT or (3) sirt spheres for the liver.  I have a lot of research to do.  Sorry I have missed your prior posts, but I don't get on here too much.  Now that I know someone is posting, I'll check back more often and offer whatever advice or support I can!

One other thing I wanted to say.  I don't consider myself a victim of this disease.  I may have carcinoid cancer, but it doesn't have ME.  Attitude goes a long way with this disease, and people have lived for years.  I have a friend in our support group who has lived with this for over 20 years. I have my little pity parties, believe me, but I don't invite others to attend, ha ha.  I believe it's very important to stay positive and live in the present. 

Please let me know if I can help in any way, ok?  Hope the sandostatin is helping you and the pain has lessened by now.  Take care

Linda

RE: Disappointed with this site!

by cpmty on Fri May 03, 2013 11:29 PM

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HI, DON AND LINDA... that is a good attitude you have andpositive is good to control and win the war to cancer. I don't know much the cancer you have, sorry (I have a different kind) And Linda what you are doing is good -to have a small support group etc. Been positive its very important. check previous comments to get information on alternative treatments etc. I don't remember if I put this one here:

cancercleansecamp.com (dr. Judy S.) she has radio and tv shows and have guess (most survivals and some doctors) telling different treatments, they followed and give ideas. Just a note of warning : these websites i put here you have to be careful and only get the information you think will help you. may websites sell things, and you can't buy every supplement, vitamint or treatment they try to sell you. there are hundres. I only listen and get the info. that I think can help me. No every treatment 'is for real' and some really help & others do not. Sorry I can't express well in English, it is my second language.

RE: Disappointed with this site!

by heavyd1954 on Sat May 04, 2013 01:50 AM

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Thank you cpmty for the support and ad advise....I'll definitly look into your recomandations .   Don

RE: Disappointed with this site!

by cpmty on Sat May 04, 2013 01:58 AM

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I am glad I could help. Take care and I wish you the best and 100% cure. celia

RE: Disappointed with this site!

by heavyd1954 on Sat May 04, 2013 03:29 AM

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Hi Linda...I am very happy to have a reply I can really relate and respond to. My name is Don...Heavy is a title one of my brother's gave me years ago...anyway from reading your post I feel you're not a rookie! So just in cast you don't know "I only found out on April 3, 2013 that I have Carciniod Syndrome Stage 4. Just for openers I want to share some incidents I've experienced since my injection on March 25th...it has'nt been good...but since this is all new for me I am not sure of any of this?  I will say this...I am sorry you took my comment about being a "victim" the wrong way.  I am a Christian Evangelist, married...we have 7 children and 6 grandchildren. What does this have to with "victim" We believe in my family, base on The Bible that Satan can attack christians as well as non-christians with infirmities. Christians are just aware of who's behind the attacks! I am not worried about anything this cancer can dish out...but is does help to talk to others who are going through the same cancer. (or any sickness for that matter)

 Here goes...1hr after my 1st injection @ 11:00 on 25th, I started to feel something happening @ ALL my cancer sites!  They all started as dull pains and 7 hrs later I was thinking I must be nuts to have believed this would work! The major cancer site, my sm. bowel was heading for a 7-10, my liver was a 7 and I felt pain under my heart and Rt lung! Approx 12 hrs after the shot, I was SHOT! I finally somehow fell asleep. The next day(26th) I was fine, I could'nt believe it? The (27th) was the same...I was even advocating it's results to family and friends, I was impressed, I thought?  Bad day on the (28th) The next day (29th) was ok, (30th) I knew what I was heading for, on the (1st) it slowed down, but remained constant. (long nights and little rest) The (2nd) came along...I was taken by surprise in the evening, most of the night! NOW today, into the morning I thought I just do some yard work and not worry...BAD Idea! I had an old attack I was very familar with that hit me...The REAL deal was starting, no one around for help I could only hold on until 8-10 pains slowed down and I stopped vomiting! I was weak, dizzy, and lightheaded.  These kind of attacks I've been having for 7 years now!  They come when ever they feel like it...the nice thing about them is I can get prepaired for them...after that it's a fight, maybe for an hour or all day...like right NOW!  I've place this problem I have in The LORD's hands... I don't know if it will ever go away, but you can ask anyone I am a fighter and I don't give up or give in! GOD has taught me alot from this cancer and is teaching me still. Well I need to go, I didn't want to get so wrap up with this post...I have much more I'd like to share...maybe another time...I need to go to prayer and find the only comfort and peace I know "That comes from my Lord and Saviour Jesus Christ"

RE: Disappointed with this site!

by lindat on Sat May 04, 2013 02:08 PM

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Don, I'm so sorry you are having the PAIN. I can so relate to it! Even though I'm not a rookie anymore, this cancer keeps handing me some surprises, unwelcome ones at that. I don't remember exactly long it was before the PAIN stopped after starting sandostatin, but i believe month 2 was relatively painfree. Did you have an Octreotide scan?? Maybe some others can join in here about which receptors are best for sandostatin to work its best????? Like I said, I need to do my research but it seems I'd rather be Scarlett O'hara and "think about that tomorrow". May I ask where you are getting treatment? I go to MD Anderson in Houston. Please know you are not alone in this battle . I will say a prayer that you get some relief,....soon !

RE: Disappointed with this site!

by jesichashope on Sat May 04, 2013 07:18 PM

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Don,

Never feel as though you are alone, God is always by your side and he will work through you to direct you to where you need to go and what you need to do.  Cancer is never easy and when you have a cancer that does not react to the normal treatments doctors have no idea as to what to do but to continue with the only tools they know.

As Cmpty has told you there are many out to the box treatments and supplements that will enhance your immune system in order to keep up the fight.  There are some treatments out there that may give you more than some relief and may work to knock it down. I know of a new treatment used for all cancer types and it is proving to kill the cance. It is as I would say a new kid on the block to the general public. But, it is always worth looking into everything because you never know what treatment God is guiding you to use. You can view it on Jesicha's Hope site, google it because most links here are not allowed but the resources are worth exploring.

I can empathize with you; Jesicha had two types of cancer that if you treated one the other would grow, and it did, finally becoming resistant. She switched to alternative with good success but as you will read on the site, throwing everything conventional at it before the switch only destroyed the liver that could not be repaired.  It is all a hard battle and so much we do not understand. It is places like this we learn from others and share with others so, yes, you do not suffer as a victim of such a disease.

There is hope out there, God will give your messages as you well know how to listen; heed to his messages.  We know our daughter did not die in vain but she lives on in every act of kindness, every word of encouragement and every prayer we send; she planted the seed of Jesicha's Hope and though she left us, I continue to water and nuture it so others shall find the hope she planted there.  Don, you will find the answer you seek; because you seek so to you shall find.

RE: Disappointed with this site!

by dcollie on Sun May 12, 2013 04:50 AM

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I just happened across this site by chance.  I have fully beaten stage 4 Carcinoid Cancer and am 8 years post op - completely clear.  So clear that I no longer even test for it.  So yes,  you can conquer it if you have a bit of luck on your side and the right doctors.  My story could fill pages, but a quick summary would be:

1) Can't find Primary

2) Told I was Terminal with 12 to 18 months to live (back in 2005)

3) Fired my local doctors - all of them

4) Got myself to Johns Hopkins and Micheal Choti, surgeon

5) Had one extensive surgery. Cancer is removed. Primary was found, liver resect bowel resect, Lymoh node removal.

6) 8 week recovery was at 90 %.  99% at 20 weeks and beyond.  No further issues.

Sandostatin is a blocking agent ONLY. It prevents tumors from secreting Seratoin. It comes in short doses of 4 hours each or one milk-shade style injection that last 28 days.  It should not be the cause of any pain because it is only a blocker. 

Best tip I can give to anyone suffering with this cancer is to get out of your comfort zone and get to a specialist like Doc Choti at Hopkins (there are others as well).  There are many well-meaning doctors that don't have the advanced skill set to treat you....if you stay with those mediocre doctors your chance of survival is greatly diminished.   

Good luck to you all.

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