Disappointed with this site!

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RE: Disappointed with this site!

by LauriG on Sat May 18, 2013 10:38 AM

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Hi Don,

I have carcinoid syndrome but my tumours have not yet been found. It is difficult when it is such a hard disease to diagnose and treat, and there seem to be conflicting messages from doctors. I live in Australia and was fortunate to find a specialist willing to start me on treatment so I am also on Sandostatin. Funnily enough my mother has since been diagnosed after they found her tumours incidentily.

Something that you may find useful to look at is the recording of the presentation by Dr Rodney Pommier at the 2009 NET Symposium. He does surgery on people that other doctors refuse to touch - although whether this would include your situation I don't know. I found his presentation very informative and helpful regarding a number of aspects of this disease. The address is:

http://itr8.com/hosted/ccf/mtsinai09/presentation_links.htm

Hope it's helpful to you.

God Bless, Lauri.

RE: Disappointed with this site!

by heavyd1954 on Sat May 18, 2013 04:17 PM

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Hi Lauri

Thank you for posting on my behalf...I hope the doctors fine any tumors you may have soon! I wish I could say the sme for myself,but they say my major cancer in my sm bowel is inoperable. I am looking to see if after two more sandoStatin shots it may shrink enough to remove, I hope so because I exprience much pain and for long periods of time from it! I need too have it removed!

 Living in Australia must be nice, I aways dreamed about the outback, if you know what I mean? I guess you could call it a man thing, anyway I like adventure and Australia just always seem like the place to go for me! Hope your mom is doing well, as well as yourself. I will be getting my 2nd shot on the 23 of May and also seeing my Doc. I just keep fighting this cancer with The Grace of GOD and The Love of Jesus Christ. My whole family is christian, I have 7 children and 6 grandchildren and we pray for GOD to heal any of us. We pray as a family to help others also...I just want you to know we'll be placing you and your mom on our prayer list of rquests. If you want send me a friend request and join our family cancer page, you're welcome to join.

 Well take care, stay in touch, and keep in prayer.

Your friend in the Fight for Healing Don

RE: Disappointed with this site!

by cpmty on Sun May 19, 2013 12:24 AM

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HI DON, I am sorry i read your comment. Please see if you can get an alternative treatment that can work for you. At least try taking some herbal and supplements that will help you boosting your immune system. You should try anything that can help you, even changing your diet if you can (alkaline and lots of cruciferous vegetables etc.. no red meats and no sugars) berries are easy to find now, it is time for berries and have lots orf antioxidents and anti inflamatory properties. I really I wish I can help you. But only you can do it and fight it. cp

RE: Disappointed with this site!

by heavyd1954 on Tue May 21, 2013 05:19 AM

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Thank you cp...sorry I did'nt reply back sooner, my daughter from down from NJ to see me because of this cancer. She's not happy either, no daughter would be! I am hope this thursday whenI recieve my 2nd SandoStatin shot I can talk more on removing the primary cancer in my sm. bowel. This is wher I am having 75% of my problems! Meanwhile me, my family, all my friends (including you) will keep praying for each other, and hope our treatments are well thought out by our Doctors.

 

Sincerely Don

RE: Disappointed with this site!

by Julitina on Thu May 23, 2013 04:20 PM

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On Apr 23, 2013 9:37 PM heavyd1954 wrote:

I thought there were active carcinoid victims on this site? I am a newly diagnosed victim with Carcinoid Symdrone stage 4. This cancer I have is making itself at home now in my heart, I am trying to find out what other victims out there in cyber world can share anyone up for grabs???

I am neuroendocrine (carcinoid), stage 4 cancer survivor, diagnosed 2 1/2 years ago. This is a rare form of cancer and there is some excellent information and help on the carcinoid .org site. They have great resources, physicians who are experts in this field contribute to this site. I have called the help line number and spoken with someone who researched to find an answer for me, then called me back. They will also confer with one of the Dr.'s on your behalf to answer questions, and suggest physicians in each state that are experts, or specialize in carcinoid, neuroendocrine cancer. I had more questions than answers when first diagnosed. My biopsy, from liver met, was misdiagnosed by 2 groups of pathologists, one from a top rated cancer hospital. I am thankful to God first, that what was diagnosed as very aggressive stage 4 , was later, after surgery, discovered to be an "intermediate" growing carcinoid,(neuroendocrine), cancer. Primary site was small intestine, appendix, spread to lymph nodes and liver. Carcinoid syndrome is symptoms caused by the hormones produced by these cancerous tumors. I am not a Dr. So I feel you would be best informed by going to the carcinoid.org website, which will , hopefully, answer at least some of your questions., and help you find help to get information you need to guide you to best decisions for your treatments. I hope this helps. This cancer can be very slow growing, many live years after diagnosis. There is hope! I will be praying for you.

RE: Disappointed with this site!

by heavyd1954 on Fri May 24, 2013 04:24 AM

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Thanks so much for your post, I also have stage 4 neuroendocrine (carcinoid Syndrome) I ts seems to be in remission at present. I just had my 2nd injection of SandoStatin LAR on the 23rd...this drug seems to be very good. I am praying everyday for GOD to just see me through any pain I might experience. I don't think anyone knows how BAD the abdominal pains can become in the bowel and liver, but I know I can tell some one how bad they can become! This is the pain I pray GOD see me through or will keep me from! Lets just keep praying for one another and staying in touch, thanks again for your post...My GOD richly bless you and your family.

Sincerely Don

RE: Disappointed with this site!

by belvern on Thu Jun 20, 2013 04:39 AM

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On Apr 23, 2013 9:37 PM heavyd1954 wrote:

I thought there were active carcinoid victims on this site? I am a newly diagnosed victim with Carcinoid Symdrone stage 4. This cancer I have is making itself at home now in my heart, I am trying to find out what other victims out there in cyber world can share anyone up for grabs???

Yes there are active NET's sufferers out there. I sent my 1st plea to this site, for help last week and I cannot even find the plea  - so no replies. I was diagnosed in Feb 2013 - multiple tumours metasases to liver . Unknown primary. Biopsy says grade 1 but florodeoxyglucose PET said high uptake and very aggressive. There was no uptake of radioactive scans so no octreotide etc injections can be given. No surgery as 40 + tumours up to 2.7cms. There is no treatment. I am in Australia and have been to the top cancer centre in Melbourne. 3 specialists have assessed the results and more or less said to go somewhere else as they have no answers. I have spent nearly 5 months being tested and sent from one Dr to another. I feel they are hoping I die soon and the problem will go away. Does anyone think there are answers overseas?

RE: Disappointed with this site!

by tine1 on Sun Jun 23, 2013 05:14 AM

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Yes for sure visit youtube and you will see many posts from US experts/doctors/surgeons Dr Pomeray, think that's how you spell it!  A lot of info of different types of surgeries and treatments, so dont give up hope also read carcanoid.org has info on new treatments aswell. Dont think that just because your doctors don't have the answers that there aren't any. I have liver metsdepending on which scan I believe, on the MRI they say just two of around 2cms one active one not, however on the CT there are the same two but also ten smaller ones  around 1cm and another tumour in my mesentary ileum! I also have pain in my lower left side and just below my ribs same side that shows nothing and the docs have no answers all my bloods are fine so go figure. They don't know everything about our disease I live on Vancouver Island and my surgeon had never treated anyone in his 30 yr career and my doctor had never heard of it. I go down to Victoria where my oncologist is no expert so I also go to Vancouver to see the ONE guy at the cancer hospital there and push him to find things that might work for me, not been to successful on that so far but I keep trying. So push be your own best advocate and good luckbelvern 

RE: Disappointed with this site!

by Chris12 on Mon Jul 01, 2013 11:38 PM

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A highly selective, relatively safe radiation therapy called PRRT is available for those with Carcinoid tumours (also known as neuroendocrine tumours which release too much hormones, like Seritonin, which causes hot flushes, diarrhea and eventually heart valve damage). The somatostatin injections help control the hormones, but don't kill the cancer cells as does the PRRT therapy. PRRT involved attaching hormones to tiny radiaoactive particles and injecting them (one way or another). The carcinoid tumour rapidly take up these particles because the radiation is attached to hormones. These cancer cells then start dying. Few healthy cells are affected by the radiation.

I am very into natural medicine instead of the "cut, poison, burn" conventional cancer industy. PRRT may be one of the few exceptions.

Consider natural options, highly successful in high doses and no side effects.

An excellent natural medicine website for most types of cancer is the following: Click here: http://www.cancertutor.com

Pay special attention to the entire panel (running vertically) on the left margin of the website, from top to bottom which covers specialized natural medicine treatments for different types of cancer individually.

Take a look at the section of Cesium Chloride as well, but bear in mind it may not work on all cancers (mainly the ones that acidify the body) and must be taken with potassium.

To add to all of this - black cumin oil, hemp leaf oil (mosty illegal) DAILY, juicing with wheatgrass, spirulina, brocolli and berries DAILY. Add cod liver oil, turmeric and black pepper DAILY to aid absorption. Eliminate sugar, simple carbs, maybe even complex carbs & wheat in general (DAILY). 15 MINUTES SUNSHINE PER DAY. Mild to moderate excercise if possible - DAILY and you are well on your way to beating cancer!!!

Healthy people need good nutrition. Sick people need EXCELLENT nutrition - that's where superfoods come in. Natural medicine is more powerful than people think, but remember when you have cancer that "eating healthy" isn't enough. There are foods, and then there are super foods. There are even foods to avoid which you may think are healthy, like soy (or, soya).

Hemp leaf oil and black cumin oil - nature's own chemotherapy!!! Consult a naturopathic doctor (ND) if you can afford to and get some personal guidance in the area of natural medicine. Liquid Cesium chloride has been very effective in late stage cancers and when used with potassium it is non-toxic.

Unfortunately after chemo and radiation the chances of being cured with natural medicines is reduced - but not impossible. Cesium chloride mentioned here is NOT the radioactive type of cesium. The cesium chloride is excellent for reducing pain within days and reducing tumour size and spread. Make ginger tea from fresh ginger and boiling water - soak in boiling water for a few minutes then strain - NO sugar if possible. Ginger helps with nausea.

Try coconut oil, or desicated coconut for the fatigue tiredness. Avoid caffeine and sugar - even if they help with the fatigue. Cancer grows faster with any type of sugar as cancer cell need more glucose (sugar) to fuel their faster growth rates, normal cells need far less.

There is a type of new, oral vitamin C that is encapsulated (with an oil based substance I think) that I have read about that some say is as good as intra-venous vitamin C for cancer. Google search it as I don't remember where I read it and bare in mind it might conflict with other therapies. Do your research starting with the website I recommended above.

RE: Disappointed with this site!

by cpmty on Sun Jul 07, 2013 07:41 PM

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CoQ10 WILL help with fatigue and tireness also you should check vitamine B12 levels. but check before with your doctor. 

CHECK 'salvestrol'  forum or board here... they may & can help you with questions ... there are very helpful and understandble and can advise you or gave ideas.  If you check youtube, even though many things are not very reliable, they have some protocols from some doctors with good treatments. You must check the ones you think are good and disregard the others. 

you also can get good info. from some webinar organizations and holistic healers that you can choose or ignore 

canceranswers.tv /   // cancercleansecamp.com  //  etc. I only can say that if you have cancer you must choose several treatments and protocols (and be careful that one treatment does not go againts the other). Good luck. 

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