Carcinoid/Neuroendocrine Cancer

Hi my name is Sherry and my husband of 10 years has carcinoid cancer.  It has been a tough fight.  It has progressed to the point that the Dr.'s can no longer do anything for him.  But, I want to share some information regarding a medical trial happening at UCSF with Dr. Alan Venook.  He is a specialist in carcinoid/neuroendocrine cancer and there is an experimental drug.... sorry unsure of the name.... that they are testing with patients now.  My husband did not qualify due to his cancer being so advanced.  Dr. Alan Venook is at the Mt. Zion University of California San Francisco Comprehensive Cancer Center.  I believe the trial is still open.  My husband has been told he has 6 months to 1 year and we are trying to make it the best times we have spent.  Tho, I am trying to keep down a job, take care of our son and help with him.  He is in constant pain with blood clots in his legs, leg cramps, hand cramps.  He has lost 75 pounds and is down to 125 pounds.  But you know what????  He has a smile on his face everyday.  I want to be a good wife through this but am finding difficult to maintain my composure as time goes on.  Does anyone have any suggestions to help me?

God bless and thanks~  Sherry 

 

 

On 9/30/2007 Sherry loves Richard wrote:

Hi my name is Sherry and my husband of 10 years has carcinoid cancer.  It has been a tough fight.  It has progressed to the point that the Dr.'s can no longer do anything for him.  But, I want to share some information regarding a medical trial happening at UCSF with Dr. Alan Venook.  He is a specialist in carcinoid/neuroendocrine cancer and there is an experimental drug.... sorry unsure of the name.... that they are testing with patients now.  My husband did not qualify due to his cancer being so advanced.  Dr. Alan Venook is at the Mt. Zion University of California San Francisco Comprehensive Cancer Center.  I believe the trial is still open.  My husband has been told he has 6 months to 1 year and we are trying to make it the best times we have spent.  Tho, I am trying to keep down a job, take care of our son and help with him.  He is in constant pain with blood clots in his legs, leg cramps, hand cramps.  He has lost 75 pounds and is down to 125 pounds.  But you know what????  He has a smile on his face everyday.  I want to be a good wife through this but am finding difficult to maintain my composure as time goes on.  Does anyone have any suggestions to help me?

God bless and thanks~  Sherry 

 

 

Sherry, I'm not an expert, but I have several relatives and friends who have cancer now so I have been "researching" a lot for several months- in books,magazines, and the internet. [It's late, and I have to get up early for church tomorrow so I may not get to tell all I would like to. My email is --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--. if you want to contact me later.] Suggestions: Look up cancer topics on the net, and always add, or choose, "alternative". There are several very successful clinics in Canada and Mexico (especially in Baja California). (Look up Issels.com, Dr. Mathias Rath, and maybe "bloodroot".) Also, there are 3 locations of Cancer Treatment Centers of America (one is in Tulsa) that is a combination of conv. & alt. treatments. While looking for those possibilities, check at your local health food store or LOCAL, not chain, pharmacy to see if they have, or know a certified nutritionist (also they may know of local doctors who are very good in your area.) A nutritionist may be able to recommend a combination of supplements and enzymes that can at least be preventing a worsening of symptoms and maybe even improving them. If you don't find someone very quickly, or even if you do, please at least consider getting some of the following supplements which I have read good research about: Wobenzym N, CoQ 10, alpha Lipoic acid, the amino acids N-Acetyl-Cysteine, Lysine and Proline, **Cellfood** (drops you put in your filtered water), milk thistle, and of course, LOTS of Vitamin C. Also, read about Nattokinase for blood clots. (A good balanced way to get that is in an enzyme formula from Theramedix for immune function support called PRX.) There are some others, but that's all I have time for now (I type very slowly). Starting several things at once could give him a big "healing" or "cleansing crisis" (while harmful things are being cleaned out all at once) but he may not have time for spreading them out. (Remind me to talk about parasites.) God bless you. I'll pray for you. We don't know the purpose of this trial, but we know there is one, and that God will be with you, working His sovereign purposes for your benefit and for His own glory. Makeitright

Thank you so much!  I will email you!!  I will show Richard your email and I will look these thing up!! Thank you so much for the response and enjoy church.

Sherry

Sherry my husband also has carcinoid cancer and he is being treated by a group of doctors in Kenner Louisiana - Dr. Eugne Woltering, Dr. Boudreaux and Dr. Wang.  Please keep fighting.  I saw the email the other lady left you - please please research.  Look up information on Poly MVA - it is a natural supplement that works miracles with cancer.  Also look up Dr. Lorraine Day - she is a surgeon in San Francisco - who is a cancer survivor herself and she overcame it with no conventional treatment - no chemo and no radiation. Where is your husbands primary and has it metastasized?? If so to where?  How long has he been diagnosed?  What treatments has he had?  Is he on Sandostatin injections?  My heart goes out to you both.  We will keep you in prayer!!

Keith and Kay

 

On 10/12/2007 Live4him wrote:

Sherry my husband also has carcinoid cancer and he is being treated by a group of doctors in Kenner Louisiana - Dr. Eugne Woltering, Dr. Boudreaux and Dr. Wang.  Please keep fighting.  I saw the email the other lady left you - please please research.  Look up information on Poly MVA - it is a natural supplement that works miracles with cancer.  Also look up Dr. Lorraine Day - she is a surgeon in San Francisco - who is a cancer survivor herself and she overcame it with no conventional treatment - no chemo and no radiation. Where is your husbands primary and has it metastasized?? If so to where?  How long has he been diagnosed?  What treatments has he had?  Is he on Sandostatin injections?  My heart goes out to you both.  We will keep you in prayer!!

Keith and Kay

Hi Kay,

You wrote to me shortly after your husband's surgery and I'm just wondering how he is doing. My husband was diagnosed 2 years ago with neuroendocrine cancer (undiagnosed primary) and I am just about to contact the same docs that are treating your husband to see if there is anything they can do for us. There is another woman who wrote to me as well, and she also highly recommended a second opinion from the very same group of doctors. They must be very good at what they do! I am praying they will be able to help my husband. 

Thanks so much for reaching out to me, and for your messages of support to all on this board. I wish you and your family all the best!

Jodi 

 

Hello,

My husband is doing great - thanks for asking!!   We are going to be in Louisiana on Monday and Tuesday for his followup appt.  He is back to some of his normal exercises - bike riding and walking.  He has not started back on his running program yet - we just want to make sure he doesnt do too much too fast.  I cannot say enough good things about these doctors - they were truly an answer to prayer for us.  I truly hope that your husband will see this group of doctors.  Dr. Woltering is the oncologist and the other two doctors were his surgeons.  I guess what I am so impressed with is that they are on the cutting edge of what is available to treat carcinoid - and they only treat Neuroendocrine tumors.  Our local doctors were very comfortable with not knowing where the primary site was, but these doctors stressed the importance of locating and removing the primary.   I wish you the best of luck.  Also there is a lodge called the Patrick Taylor Hope Lodge that is about 11 miles from their office - all you have to do is ask the doctors office to fax a referral for you to this lodge and you are able to stay there for free anytime you are in Kenner for followups, treament, surgery or whatever the case is.  During his surgery his parents stayed at the lodge with our 7 month old daughter and it was absolutley free.  I was able to stay on third floor of the hospital (an unused part of the hospital) in my own private room during his hospitalization - also absolutely free. We were there about 12 days - so that really saved us alot of money!! They really seem to be there for the patient and the family to make things as easy and comfortable as possible.   I wish you both the best of luck and I will pray for you guys!!  All I can say is that God is faithful!!  Stand strong on His word and God will guide and see you through this - just as He did for us!!  Our battle is not over, but we know that God is bigger than any problem we could ever face.  God Bless!!  Please keep in touch and let me know how things are going!!  Kay

My husband also has neuroendocrine carcinoid with metastis in his lung, 3 in the liver and lymphnode in abdomen, what can you tell me about Sandostatin injections, as they just started him last week on them, but no other treatment at this point.  We live in the Atlanta area, 1hour North of the City.  He is 58, and they are telling us there is not alot of treatment for this type of cancer.  Did you experience the Sandostatin Injections?

Gail & Garrett B. 

--Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

                                                                                                    

We were basically told the same thing by Houston doctors.  I encourage you to seek another opinion- if nohting else just have consultation with a true specialist that deals with Carcinoid Cancer.  There are several throughout the state.  My husband is being treated by a group of doctors in New Orleans - Dr. Eugene Woltering and Dr. Philip Boudreaux.  They are wonderful and have given us so much more hope than the other doctors.  Please resear the Carcinoid Foundation Website - you will find a lot of information there.  I wish I could be more help but all I can tell you is please research and seek help somewhere else.  There are a lot of treatments for carcinoid and research and techonology increasing daily.  Best of luck to you God Bless

I forgot - yes!!! He was started on Sandostatin right away and is on the long acting injections now every three weeks.