I Need Advice About My Carcinoid Cancer

It’s my 2 year blog-o-versary. So, I want a gift. <<joke>> 🙂  I need advice. Yup. I’ve hit a number of dead ends, done tons of research, spoken with many doctors (some of who were part of carcinoid teams), been on message boards and now. I need advice about my carcinoid cancer.

My Situation

I have stage IV carcinoid cancer. It is in my G.I. Tract (hind end – colon area), my bones (femur, ribs, sternum), and my liver. The tumors in my liver are huge. 12 cm is the largest. The tumors are spread throughout my liver and I think about 40% or more of my liver is tumor.

I am currently taking everolimus (afinitor) and it has held back most of the tumor growth…although some have grown a bit. My oncologist is suggesting embolization of the liver which seems like a good choice considering that I cannot have a de-bulking surgery.

My Request

If you know of anyone who has or has had this sort of tumor load and has fought it successfully then please leave a comment or email me. 🙂  I am currently looking into DCA but I would like to know if anyone else has been successful or knows of somebody who was successful in slowing or reversing tumor growth.

I have one request. I know that there are plenty of alternative therapies out there and I am sure that there are some that have worked on various forms of cancers. My request is that if you know of something that works on carcinoid cancer (it is non-active, hind end) then please send it along but not unless you’re sure it has worked. Links would be great or emails or blog referrals. Thanks 🙂

Spread The Word

If you would be kind enough to share this request on your social media pages I would be eternally thankful. Even if you only leave a link on some other blog it would be great. I don’t have a twitter or facebook account but if you would re-post or re-blog this it would help so much. Maybe, if you have time, you can just leave a comment and let me know as well so that I can say thanks.   🙂

Stay Strong & Keep Fighting,
Ed – To find out how to use my images on your blog for free –
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62 Comments

  1. Ed, do you mean hind gut, as in rectal? Inactive? Don’t know that term. Obviously, your tumors are actively growing. Do you mean asymptomatic?

    From my own experience, I can only tell you black raspberry powder has anti-angiogenic properties. That means it can slow the development of blood vessels carcinoid tumors typically make.

    I saw mention of a clinical trial based on raising body temperature to slow tumor growth. Not sure if it was successful but might be worth researching. They weren’t talking about a hot shower. They were raising body temp for two hours at a time.

    Just my two cents but whatever will help you is most likely to.be something new or at least experimental in the US. Possibly one of the new gene-based therapies will be worth the risk.

    I’d put lots of effort into clinicaltrials.com and similar sites. I question whether liver-directed therapy will do a lot for you. side-effects can be bad.

    If Afinitor is working at least somewhat, that’s great. Only other thing I know is Multiple Visceral Organ Transplant. Dr. Vianna’s (Vee-ah-nah) in Miami is go -to guy.

    Keep us all posted , OK?

    • Hi Lucy!

      Hey, I cannot comment on your blog.
      I don’t have all of those social media accounts so, I cannot post.
      How are you feeling? I read your post and wanted to ask.
      Is there a way to post using name and url like on Beth’s Mcgivern’s blog?

      Any way, yes – rectal and not active (I don’t have carcinoid syndrome). Did I use the wrong term?
      They won’t do the surgeries on me because of the cancer in the bones….but I will look into it.

      Thanks for such great advice. 🙂
      BTW – I’m going to put your blog in my links section.
      I’m trying to compile a list.

  2. I’ve been respecting your privacy and haven’t even mentioned your fight on my Facebook page. Do you want me to share this? I would be happy to.

  3. Please look into phoenix tears. It has cured a number of cancers including yours. It is non invasive, fairly fast acting and completely natural. Do you live in Washington? I can give you a referral.

    • Hi. I live in NC. I did call them and they explained that each type of cannabis only works on certain cancers. They said that the chances that it would work on me were only 50-50 because it was so rare and never been studied by them. So, I went with the odds and have been trying other things. Thanks so much for the advice. Maybe I will call them again.

    • Yes I agree check into Cannabis oil…I was Pancreatic Neuroendocrine cancer with extensive mets to the liver stage 4…I am now in remission do to Cannabis oil, Wheat grass , carrot juice and supplements…I did not get the clear scan until I got to 1 gram dose of CO.

      • Really? Would you tell me where you got it or did you make it yourself?
        I’ve never heard of a neuroendocrine patient using cannabis oil and it working. I know that it has worked on other cancers and diseases. I live in NC and they are legalizing it I think so, any added info would be great. You can email me privately if you need to. 🙂

  4. Ed – I just replied to Lisa on the Carcinoid Cafe site…I did not ask this on that post…but am curious as to who has been guiding your battle with NETS. As you said…and you know….you have a significant tumor burden. I am a bit surprised that you’ve seen Dr. Woltering and Dr. Liu and you are in this situation. Since you know nothing about me, if interested go to thehealingnet.org. My story with NETS is posted there under patient stories. My suggestion to Lisa was to look into PRRT. If you’ve seen Eric Liu, then I would think you would know about PRRT. Dr Woltering is not a PRRT fan, so I would not expect that of him. Would like to help if I can. Best regards, gary murfin

    • Hi, thanks for replying.

      Well, I have had a bit of bad luck with doctors, jobs and moving from state to state which has all led to this “perfect storm”.

      First I was in NY and got consultations from Stonybrook Cancer Center (that was a waste of time).

      I moved to NC for a job went to Duke and saw a doctor listed as a carcinoid specialist who did nothing for me. I was diagnosed with cancer, had to quit my job and moved back to NY to be with my family. During this time I went to Sloan Kettering which was another waste of time. I saw a renowned specialist during this time at Mt. Siana but that did not work out. He was, all over the place and I think his age had to do with his lack of focus. (I am being gracious) He never forwarded my medical records after multiple requests. It was very upsetting.

      Then my wife got a job and we moved back to NC. Yes, we moved again!!! I am back at Duke and feel confident that my current oncologist is doing his best. I am still with him. We went to Nebraska to see the carcinoid team and that was literally a disaster and to Georgia to Cancer Treatment Centers of America which was unfruitful. They have no specialists. I knew this but they paid for everything and so I went. Only 4 days of my life.

      I have not seen Dr. Woltering yet and Dr. Liu was in between hospitals when I contacted him. Are you still with me?!!! 🙂

      Thanks for the tips on doctors. I will look at your blog and put it in my links section. I’m trying to make a list for everyone to reference. I was told to avoid PRRT but will still look into it. My current doctor is suggesting embolization of the tumors.

      Thanks,
      Ed

      • There may be some clinical trials still running, but you have a 50/50 chance to get the real treatment. Check out Excel Diagnostics in Houston. They have been doing trials but may have recently been approved to do the PRRT without a trial. Dr. Delpassand is the head there.

          • Ed — there is no PRRT without Lu-177 — at this point you either get Lu-177 or you get the alternative which is the stronger Y-90. There is another flavor that is not commonly found…I only know of it in Heidelberg and that is the use of Bismuth 213 which is an Alpha emitter rather than Beta like the Lu and the Y. I would ask just what Doc is saying get PRRT without Lu-177?

          • I haven’t fully researched everything.
            It’s going to take me a bit of time to sort through it all.
            Thank you so much for the information!!! 😀

  5. There’s a Dr. At Oregon State named Pommier who does impossible liver surgeries on Stage IV carcinoid. Look him up. There’s another surgeon in Gainesville FL named Allison Growl who does heroic saves with terminal liver cancer patients. Worth a second & third opinion. Keep fighting. Liver embolizations worked for me 50% tumors reduction no new tumors.

  6. Ed, there is also a team in Lexington Kentucky…Dr. Wolin and Dr Anthony…both outstanding. I saw Dr Wolin when he was at Cedars Sinai in Los Angeles. Are you taking the sandostain LAR shot? Did they get your primary out?

    • Hi Mara,

      They have not removed my primary as it will leave me with a colostomy bag AND the afinitor seems to be working right now. This is what my doctor has said to me so far. You know I did hear of somebody in Kentucky….I will have to look into this. If I told you the ridiculous story on the sandostatin you would die. My oncologist when I was in NY did not establish a base line, treated me with sandostatin 2x, scanned me again, saw tumor progression and stopped using it. Now every doctor I see rules it out. There were months where I had NO treatment but they will not listen. It drives me crazy. OK….I got that out of my system. 🙂 My current doctor is considering either lanreotide or somatostatin with the afinitor (everolimus). Thanks for the comment!!!!

  7. Hi Ed. I know you are probably overwhelmed at this point. My husband was diagnosed 9/2013, stage four, appendix with many mets in liver, lymph nodes, sterum and shoulder. He had debulking 12/13 took out 18 lymph nodes (8 positive) 30% colon, 3o% small intestine, gallbladder, appendix and part of his duodenum, all positive for carcinoid cancer. He began octreotide 10/2013, max dose but still severe syndrome. June of 2014 had Y-90 to the right side of liver with expectation of doing the left side in 6 weeks. Went in to have the left side done, blood counts were critically low. In the process of trying to get the blood counts back up, we found out he had carcinoid heart. He had open heart surgery in December 2014 to replace his tricuspid. All this time, even on the octreotide, he had severe syndrome. He just had the left side Y-90 done 3 weeks ago, he has not flushed one time since then and his diarrhea has gone from 10-12 times a day, to once, maybe twice a day. I am far from a professional, but have been to see several professionals, all of which have different opinions. I am sure you have so many things to consider, but do what your gut tells you, do not second guess what you have or are doing (been there, done that) and live life. Stay positive and know there are so many people that are so educated on this on Carcinoid Coffee Cafe it is unbelievable. They have been a life saver to many and give comfort to us all.
    Good luck and if there is anything we can do, please feel free to let us know.

  8. Just an FYI — Dr. Rod Pommier is at Oregon Health Sciences University hospital in Portland OR. He is a surgical oncologist who is well known in the NETS community. Good Doc.

    • Thanks…..not sure what to actually do now but at least I have choices. Surgery seems like it’s out but I can always get another opinion, PRRT, Y90, Embolization…probably missed something. All of these doctors have such varied opinions…..it’s hard to make heads or tails of it. 🙂

  9. Ed, I live in NC also. I was seeing Dr. Wolin at Cedars Sinai until he moved to Kentucky. You could try Dr. Wolin and Dr. Anthony in Kentucky. Or Dr. Woltering . Dr. Eric Liu is now at Rocky Mountain Cancer Center in Denver, CO Good luck with your journey.

    • Thanks so much for the referrals. Yes, I am trying to figure out what is the best move for me. My current oncologist thinks embolization. There is also PRRT, Y90 and some are suggesting I see another surgeon. So many decisions to make……all of the docs disagree…..ug!!!! 🙂

  10. I just got a response on my original Post in the Carcinoid Cafe group on Facebook, Ed. She was advising that if you try again to join FB with the intention of joining the closed groups that I should email the admins of the groups to let them know what you’re doing. She was saying that the new accounts that request to join are usually the scammers. Let me know if you decide to try joining again, and I’ll be sure to contact the admins to lay the ground work for you!

  11. HI Ed,
    We have a great chat room on ACOR.org that Dr. Woltering in Louisiana responds to questions. It’s a great community of patients asking questions and giving experiences. They can suggest drs. in your area.
    Dr Thomas O’Dorisio is excellent in IA. You can call and talk to either of them. They are awesome!
    Good luck, you have lots of resources out there, promise!
    p.s. MPLS is having a NET Cancer Patient Conference on June 20th. If interested call. 2 of those dr.s will be there.
    Maryann Wahmann
    Neuroendocrine Cancer Awareness Network
    866-850-9555
    netcanceraware@aol.com

    • Hi Stephanie,

      Thanks, I am a member of the ACOR message board. In fact, I posted some information about afinitor last night. Thanks for all of the doctor info…..I seem to have a lot more choices now. 🙂

      • I have just been in hospital again and met my second neuroendocrine patient that has responded to Luteium radiotherapy treatment. There could be more these were sharing a kitchen with me. First was male, colon primary, secondary liver; very bad liver had a large piece removed. Luteium has shrunk his tumours. Second this week, female liver, bowel, pancreas and I think ovarian or uterine. Her tumours have shrunk. Don’t know about mine but time will tell.

        You should consider it. This is one hospital which has only 2 rooms available for this treatment and they are shared with other groups like thyroid patients. This is remarkable. I heard from a doc the London hospitals were having a good sucess rate. As you know any sucess is rare for us.

        Lanreotide is worth having as palliative care even if the tumours don’t respond. It helps a number of my symptoms and I can do a lot more as a result. I feel like a wet rag the couple of days before its due, no sleep, flushing, sweats, bowels, exhaustion. Every one in England with neuroendocrine seems to take it as routine.

        Keep up your spirits go with your gut feeling. Christine

  12. Ed — suggest again that you visit the website that Josh Mailman and I created several years ago. It is all about PRRT. Note that PRRT is a treatment and that treatment is often given with either Yettrium-90 isotope and/or Lutetium-177 isotope. There is no Luteium. There are also variations in the peptide used. Most of the time octreotide is used to attain the uptake to tumor cells, but these days, new research has identified a number of other peptides that may work better — as in get better uptake to the cancer cells. The website I am talking about is prrtinfo.org Let me know if you have other questions.

  13. Hi Gary,
    I actually have the website listed in my links section. 🙂 I haven’t had the time to research PRRT yet so forgive my ignorance. Does the site discuss Lutetium because 2 out of 2 sounds GOOD! I want to look into this. Maybe it will be of benefit to me? 🙂

    I just found this so, I am a little onfused.
    I read a comparison study of the various isotopes used for PRRT and it was obvious by 2005 that Lu-177 was the best available treatment and thus I decided against Indium. Lu-177 has two things going for it. First it has a smaller range of just a few millimeters compared with Y-90, which acts over almost a centimeter. And second, the gamma radiation it produces can be used for imaging. http://e-patients.net/archives/2010/05/it-takes-guts-to-be-a-neuroendocrine-patient-a-story-of-participatory-medicine.html

    Talk soon,
    Ed

    • Yes. Our site discusses the use of Lu-177 and Y-90 which are the key isotopes used in PRRT. FYI — there are no dumb questions…it is just that you are going to receive…as I believe you already have…a whole variety of suggestions / recommendations for places, docs, treatments and diagnostics…it is just that some people do not really know exactly what they are talking about and this can send people down the wrong path and waste a lot of time. You have probably done this already, but I would suggest laying out a spreadsheet that lists all the various treatments or whatever that you now know about…then I would identify for each one…the Risks and the potential Benefits. Under benefits you will want to research the TTP or Time to Progression for each treatment. This is the span of time between when a treatment is done and when tumors come back. This is a given with this cancer. One of the reasons I choose PRRT when I did, was because the known TTP for PRRT was 40 months. For most other treatments the TTP is 18-24 months. At this point in time I am 45 months out from my second (and last) treatment. So far so good. Let me know if I can be of further help.

  14. Hi Ed, just to add to all your suggestions above, I live in Sydney Australia where there is cutting edge treatment for carcinomas. Dr Karoush Haghighi at Prince of Wales Hospital Randwick is the absolute guru surgeon in this area. He has operated on me to remove multiple mets in small colon, peritoneum, half my liver, appendix, gall etc. Major surgery with all sixteen biopsies grade III. Other doctors refused to operate. He trained at the Mayo clinic.
    Also, since then I did 5 rounds of chemo as I have a really unusual carcinoma where it is both fast growing and slow growing. The fast growing, ill-defined part is what the chemo targeted. Now that’s under control I may have lutetium treatment again. It is not as vicious as chemo and worked well for me. I am also using cannabis resin. Have been for about 4 months now. And the results speak for themselves. I cut the chemo short and still have had almost complete resolution of mets except for three lesions in the liver. I don’t care what kind of cancer you have. Everything is worth a go. Have you heard of Genostics Personalised Cancer Testing? Its based in Germany and costs a fair bit but I’ve had it done and the information it empowers you with is priceless. http://www.genostics.com.au
    I’ve been silently and distractedly reading your blog. I appreciate your journey as I’m on the same one. And everything you’ve written about medical treatment and treaters i’ve experienced in one way or another too. Or experienced even greater travesties. So thumb your nose at them and keep your campaign going Ed. Good work and thanks for sharing with all.
    L

    • “Thumb your nose at them and keep your campaign going” – great advice and thank you. Also, thanks for the medical information. It looks like PRRT and LU-177 is a great option. I will have to look into it more. I think I might take a day or two…or maybe a week….try to relax and let my mind rest for a while. My brains are starting to hurt with all of this information! 🙂

        • Ha! True!!!! ha ha ha!!!!! Made me laugh. Yes, gonna do that – good advice. If you find that spread sheet it would be great. My email is up a few messages.

    • Hi Elizabeth, I will be looking into seeing Dr Haghighi. At stage 4 Pancreas 2.5cm in the tail which, liver has lesions and multiple enlarged lymph nodes adjacent to head of pancreas. Funny thing is health wise in very good health but stage 4 nonetheless (just received the Radiology report from another Sydney Hospital).
      Do you think he would take on a case like this?
      P

  15. Ed, I wish I could do more for you but there is some great advice above. PRRT and LU-177 as Gary and others mention and Dr Pommier is a legend in NET surgery. I continue to read your blogs so keep us up to date please.

    • Thanks Ronny! Confirmation is a GOOD thing.
      There’s wisdom in many counselors, right?
      I read your blog as well.
      I find it frustrating that each doctor is so different.
      One doc suggest surgery, one suggests chemo, one suggest PRRT one with and one without Lu-177.
      I guess it’s all a gamble in the end.
      One treatment may or may not work….depends on the body.
      I wish there was a more scientific way to decide.

  16. Ed,
    I have been on octreotide since diagnosed 4/2015 major tumors in Liver 9,4 &2 cm… primary was in small intestine removed 4′ of intestine 8/12 at university of Kentucky wolinfromm Yale university, Stanford, cedar Sinai, surgeon Dineen from MD Anderson… Liver found to be inop during surgery currently tumors in liver are shrinking from octretide discussion of targeted embolization of liver tumors… Currently staying course holding off targeted therapy… Good luck stay strong My brother …..Wolin is the man he is moving to NY

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