END STAGE OF CARCINOID

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RE: END STAGE OF CARCINOID

by lloyd1 on Mon Mar 24, 2014 01:55 AM

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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!

RE: END STAGE OF CARCINOID

by shrnkrap8 on Mon Mar 24, 2014 04:04 AM

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I was able to rouse my husband long enough to talk about his condition and options. He has decided not to pursue further treatment.I ended up calling the oncologist's office to determine the purpose of the visit, and, oddly enough, she was on call. I reviewed what was occurring with my husband and told her that, though I'm no medical professional, I feel like he's actively dying. She concurred, and said that she just wanted to tell us face to face that she felt hospice was the next best option for Tom. She will arrange a referral tomorrow morning.thank you, God, for allowing these decisions to be made for me. And thank you all for your kind support. God bless and good luck to you all.."..

RE: END STAGE OF CARCINOID

by lloyd1 on Mon Mar 24, 2014 12:26 PM

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Best of luck and may God bless both of you!

RE: END STAGE OF CARCINOID

by Danette1963 on Wed Sep 16, 2015 11:28 AM

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Miss Geri,

I hope you are able to reply to my message.  I am currently going through with my husband almost the same thing you are going through with your husband.  The only difference is he has just been diagnosed with stage 4, colon & liver but is ONLY able to take Octri. Surgery is not an option and chemo has very little to no effect so that is not an option either.  We do not know what to expect and there is not a whole lot out there with this being so rare, as you put it (Zebra Cancer).  My husbands diagnosis came in only after I took him to ER with stomach pains which we now know it was Carcinoid Crisis.  I think my husband has had this a very long time just from what little info I can find on the internet.  Is there any information you can share with me now, especially since you have been going through this since 2008?  I would really appreciate any information that could help him and I at least know some kind of a direction.  Sincerely,

Danette 

RE: END STAGE OF CARCINOID

by NoraB on Thu Sep 17, 2015 08:03 AM

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Wow, you sound like me. I live in Atlanta ga. I am trying to get my disgnosing physician to order an octeo scan but he said it could still miss depending on right receptors. I am going for an ultrasound next week for 3 mo old pain in lower rt and. So far I have lesions liver both lobes, spine, lt adrenal, kidney cysts that showed on MRI w/wo contrast. I have Carcinoid syndrome. Suspicion began by doc the first of 2012 and he is past the suspicion stage as first of 2015. I am feeling so bad and I am in so much pain...is this the end? Thinking back I've been like this for years and years. He saw me go through an episode in his office in 2012, lesions have multiplied, syndrome is constant, hense the firm diagnosis. What can you do? 

RE: END STAGE OF CARCINOID

by NoraB on Thu Sep 17, 2015 08:13 AM

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On Sep 17, 2015 8:03 AM NoraB wrote:

Wow, you sound like me. I live in Atlanta ga. I am trying to get my disgnosing physician to order an octeo scan but he said it could still miss depending on right receptors. I am going for an ultrasound next week for 3 mo old pain in lower rt and. So far I have lesions liver both lobes, spine, lt adrenal, kidney cysts that showed on MRI w/wo contrast. I have Carcinoid syndrome. Suspicion began by doc the first of 2012 and he is past the suspicion stage as first of 2015. I am feeling so bad and I am in so much pain...is this the end? Thinking back I've been like this for years and years. He saw me go through an episode in his office in 2012, lesions have multiplied, syndrome is constant, hense the firm diagnosis. What can you do? 

Hello...I sent a post and was replying to Yankee fan. My post was at 4:03 am by norab

RE: END STAGE OF CARCINOID

by avilan7 on Mon Oct 12, 2015 03:01 PM

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Hi, I am also a carcinoid clubber and am seeing Dr. O'Dorissio at the Univeristy of Iowa.  He is running a clinical trial using the same medication treatment they use in the Netherlands.  If you have the money, you could also get this treatment in Houston, TX.  It certainly isn't as exciting as going to the Netherlands, but I don't have the energy for that type of excursion right now.  

Facts about my carcinoid: After 15 years of complaining and having doctors think I was crazy, because all my  tests were "normal"  ... the cancer was found in a metasticized state on my liver, during a CT for kidney stones.  When they looked at a CT scan from 5 years earlier they noted the lesions on the liver were presented but missed by the radiologist.  UGH!  Thankfully, a week after having the octreotide scan, I had a small bowel obstruction! Ouch!! The local and very respected surgeon thought it was unrelated, but I went for a second opion anyway.  Thankfully, that saved me!  The second surgeon KNEW it had to be the primary tumor and ran the bowels.  She took out two tumors from my small intestine and 13 lymph nodes; one turned up cancerous.  Now I am working with my thrid medical instution and Dr. O'Dorissio believes I will qualify for the trial in the spring.  We just need to get my serotonin levels down, which means self-administered shots 3x a day and once a month shots, as well. 

I am also 47 and sending you and your hubby the strength to keep fighting and the audacity to go elsewhere for treatment!

Blessings,

Karen

 

 

RE: END STAGE OF CARCINOID

by akdixon5 on Wed Oct 14, 2015 11:11 PM

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I'm so sorry your husband has suffered for so long with carcinoid. I'm going to be realistic in my reply. Your doctor has not been treating this cancer very aggressively if we can take your message at face value. Did he have an octreocide scan at least yearly. After his surgery did he have monthly Lar or sandostatin. Were the monthly markers for the rise of serotonin taken in the lab. Has he had CTs and MRIs all through this to check for new progression and to find the primary. Please read more on this site to assure yourself everything that should have been done was done. I'm now seeing Dr Woltering in Kenner LA at the Oshner Center. Ask your doctor if he is familiar with his protocols.

RE: END STAGE OF CARCINOID

by akdixon5 on Wed Oct 14, 2015 11:20 PM

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Thank goodness you are in a great program at Iowa. Good luck with your progression to wellness.

RE: END STAGE OF CARCINOID

by Danette1963 on Fri Oct 16, 2015 11:41 AM

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Karen, thank you so much for replying to my message and I must say.....YOU ARE AMAZING!!!  Well? we had our second opinion yesterday at the University of Michigan and basically they said, the treatment (octreotide) is the same treament they would be doing and they only suggest our current doctor increase the dosage to the max.  They also did suggest that later on, some of the tumors can be shrunk down with a laser type procedure of course will not cure but eliminate some of the tumors which will bring down high levels of carcinoid hormones.   One thing I forgot to ask is if there is a fusion of some sort to put nutrients into my hubby to increase energy level.  One of the guys here at work said his father had colon cancer and through IV they gave him a bag once a day loaded with nutrients and it really helped alot.  Im not sure how or IF this will help with this type of cancer.  I will ask his doctor next weeks visit. 

I hope you have family and friends that are helping you stay positive Karen.  Stay tough and God Bless YOU!

Sincerely,

Danette

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