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Neuro Endocrine My husband was sent home to die

lakemtg
Posts: 11
Joined: Aug 2009

I need help. My husbands tumors are in the liver he has been through 6 chemos already not one of them worked. Today they told him they cannot do anything now. They told him to get a transplant but he is to risky to do so due to the clots in his portal vein.

Wow what can I say the emotions we are dealing with right now are really hard worse then when we found out he had cancer. For the first time this cancer has really shown a threat to our family we thought all this time there was hope we were positive and thought something good would happen now all hope was taken from me and him. He broke down and cried so hard and I never saw him like that he stated he was afraid, and worried, he has changed and it is the worst thing I have witnessed in anyone.

Can anyone out there help me give me advise what they went through, what I should do next, any suggestions that has helped them with the cancer? Anyone who was given the same advise from their doctor that is willing to tell me what my husband is going through. I am desperate for answers right now and how will I survive through this. The worst fear on both of us is the end and how badly it will be

any suggestions advise etc will help especially on what you think I can do to comfort him more? That is what I want to do more then anything.

Thanks
Kelly

nancyj_pa
Posts: 20
Joined: May 2009

Please go on the Johns Hopkins Pancreatic Cancer discussion board. They have answers to many of your questions and suggestions on how to proceed. Just Google it. My husband recently had a Whipple done for pancreatic cancer. Your case is different, but many people on that board have the same problems. Good luck.

renalcarcinoidguy's picture
renalcarcinoidguy
Posts: 14
Joined: Aug 2009

See my blog I was dying with carcinoid and went to Germany to get PRRT treatment. I have a new lease on life as others are.

My blog is http://www.renalcarcinoid.com/
Search for Dr Baum video in Singapore conference presentation on PRRT and Gallium imaging. It is his last hope and they can save him if his tumors are postive.

Write me and I will get you in touch with DR Baum but look at the video

smm2367@gamil.com.....

Dont let it happen go home and die....that is BS!

debbidoo
Posts: 2
Joined: Aug 2009

I understand the pain you are feeling. It's almost impossible to express the pain you are experiencing. Only God can give you peace and comfort. I would research every avenue with regard to treatment. At the same time, you must accept the diagnosis and prepare for what may come. Don't give up until you have to.

echos93
Posts: 1
Joined: Aug 2009

I just returned from Cancer Treatment Center of America in Zion IL last week, have the very same where the cancer started in the pancreas and spread to the liver, had surgery the 14th of July and the doctor seen me for follow up 3 wks after surgery and said I'll see you in six months for test to see how fast the cancer is growing in your liver. Went to CTCA and seen a Dr. Levin, he gave me some papers on chemo that I may have further down the road but he stated that he would like to see my body heal from surgery and continue to test and watch the growth but he seemed so much more up to date. However Dr. Levin has treated some people with the same cancer that has been to Mayo and no luck, Dr. Levin has helped them and one man that had a 12inch tumor on his liver is now showing a very small tumor remaining on his liver. Call them and they will walk you through the whole thing, they had all my arrangements set up within just a few days (called on Thursday & was there the next Tuesday). They even pay for you to get there. Please call them, I believe that they may be able to help, also look them up online, they treat you great and they go over everything from mind, body, meal planning, weight goals, most complete blood work up I have ever had, ct, pets scans, everything you can think of, it is a whole body approach not just the cancer.

nametag
Posts: 2
Joined: Sep 2009

Kelly,I understand your feelings and fear. I have been through several cancer scares, not myself, but members of my family. My husband is now recuperating from an enormous surgery to remove a 7"X3" tumor from that had attached itself to the back of his colon, totally encased his coccys (tailbone) and was growing up his spine and was imbedded in several nerves. He took 36chemo/radiation treatments and MD Anderson in Houston was the only hospital that had the skilled Oncologists and equipment to do his surgery. We were both told there was a 50/50 chance he wouldn't make it through the surgery, but we had no choice but to try. Talk about being a nervous wreck. I "lost it" several times. We spent the whole month of March 09 at MDA and he came through the surgery and is now home recuperating. He lost a lot of bodily functions, but at least he is still alive. I said all that to say, don't give up. I don't know where you live in the USA, but I would most definitely recommend MDAnderson in Houston, Texas. They have a website on the internet, www.MDA.com Try their site andsee what you think. We will keep you and you husband in our prayers. We had plenty of people praying for us and I truly belive that God honored those prayers. If I can answer any questions or if you just mneed to talk, email me. I am a good listener.

mr steve
Posts: 286
Joined: Sep 2009

My wife was dx 3-08 with net in the pancreace, with met to the liver. We went to Ohio State Univ. and saw Dr Thomas. We had surgery in April 09, after 2 Chemo Embolations, She had the left lobe of the liver, gallbladder, lg instestine resection, part of the pancreace, and spleen removed. every time we have been to the James we have had wonderful care and had all of our questions answered so far. you might want to give them a call.

Keep up the HOPE!
steve

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