17 May 2017 at 5:36 am #54568
My name is Pete. I am 54 and am kind of new to this. I have NETs that started in my small intestine and has spread to my liver. I was wrongly diagnosed about a year and a half ago with lymphocytic colitis. I went to doctor a few months ago with kidney stones and when they did the ct scan they saw tumors in my liver. I have had 2 treatments of Lanreotide so far. The first one didn’t go so well as i had severe abdominal pain for several days (cramping?) The 2nd one went better but still had 1 real severe bout of same pain about a day after treatment. I am learning as i go about this kind of cancer. I was told that surgery was not a good option for me because i have too many tumors in my liver. I am hoping that Lanreotide will keep the tumors from being productive for a long time. I am currently getting my care in Mpls Mn at the Piper cancer center at Abbott Northwestern Hospital. I live about an hour away from The Mayo Clinic in Rochester Mn which is considered the No. 1 Hospital for NETs in the whole world. I might consider going there for a 2nd opinion in the future but for now i am happy with the care i am getting and the hospital i go to is also a highly regarded hospital. So far my main concern is that my body will get used to the Lanreotide. Also my 24hr urine test has been around 100 which doesn’t seem to bad but my Chromogranin A has been 1,450 then 1,465. That seems really high and am not sure exactly what that means. Just found this site and am looking forward to making some friends.17 May 2017 at 8:30 am #54569
Good morning Pete, and a very warm welcome to you. Yes, I am sure you will make lots of friends on our forum. When someone new comes on our forum, the first thing we now always ask is, are you being treated at a specialist net centre, many are not, I wasn’t, to start with. I am not sure about how the system works in your country, but you say you are only one hour away from The Mayo Clinic in Rochester, which you say is considered to be the no 1. hospital for nets. so I am bound to say, go there! I would, because I feel we need to have the best care and expertise we can possibly get with this cancer – you deserve to. I am sure someone will chat to you soon, who has nets similar to you – me, I have mine in the pancreas, and the nets were debulked, so I receive the monthly injection, I have Sandostatin LAR and have done for more than a couple of years, but I still get all sorts of side effects, which there is still not a pattern to, but certainly many do get cramps, diarrhoea etc. also an acute fatigue seems to be very common. Hope to chat again soon, Carole.17 May 2017 at 1:42 pm #54573
I don’t know whether you are on Facebook but there are several groups on there which support patients in the US and Canada and they have lots of information about who to see (specialist and hospitals). If you are not on FB then I can get some info for you and post it on here.
I too have tumours in my liver – so many it makes it inoperable. I was diagnosed in 2012.
Pat17 May 2017 at 2:29 pm #54574
Good to hear from you if you know what I mean for help or assistance.
I am no expert but have a long period of NETS that is eleven years now and I am still here so don’t think that you are not going to survive. It is not easy and I and my family have had some rough times but some good too. You just have to keep going and never give up fight it all the time. It is classed as a chronic illness where you will suffer some hiccups that need dealing with along the way but that is where you keep going. There are sad cases in all walks of life but You cannot get away from that point, however many people are now living longer and survival is increasing because of all the research and teams working together with experience and a massive drive for success and understand this nasty and sneaky disease.
I am sorry to hear about your situation. I think all our NET Patients are in the same boat and it can be scary and worrying because what is NETS etc., It is a lesser known cancer that used to be rare but is now lesser known because awareness of every one including, GPs, Oncologists believe it or not. They are being located more and more and having listened to a number of lectures on You Tube and other information. It is very informative and I have learned a lot from it.
My personal advice and experience would be to stay on the Lanreotide for now and give it a chance because there are side affects that sometime take your body time to become terms with the treatment.
If this is not working a while longer then go back to your Specialist and see what he or she can do to limit or stop the effects or if they may have something Different?
I found that they had other treatments in the bag that may help you.
If this Specialist has a good knowledge of NETS then stay with them for now.
It is you prerogative but in the meantime see who is available at the other hospital and check their background?
If it is possible you are in my opinion better off with a NET Specialist who knows how complicated the situation can be.
Then you can try and get transferred to the other Specialist. I was fortunate during my time to have two good Professors who had a knowledge and did their best for me and I cannot complain and would never do so.
My best way to help you is to post my up to date story on the site. Some people may find it repetitive but having been updated can give you my story. There is one foot note the drug PRRT L90 is off the list provided by the NHS but enthusiastic people with real evidence of successes at limiting the disease can be proved and we need it re-stated soon and that is a real possibility.
If you need anymore please come back to me as I don’t mind one bit. All I want to do is help you as much as possible.
Very Best Wishes
Hull.17 May 2017 at 2:29 pm #54575
Sorry to mention,
This is a great site the NET Patient Foundation and is now a Centre of Excellence so if they don’t know the problem they will get an answer for you. The ladies in the office are a great bunch and full of knowledge especially the CEO Catherine Bouvier.
They have all been great to me over the years and don’t stray too far away from them as they know vast amount of information and NET Specialists. There are only a few centres like this across the country.
You will find many nice people on the forum who are willing to help you.
I would advise getting the NET Handbook off the site. It is minimal cost for a great book on NETS.
My advice is don’t stray too far from the site and with help and answers you need and may help you. The staff are really excellent and I do not have the words to describe them.
Andy Norris.17 May 2017 at 2:32 pm #54576
Good to see you on here Pat xxx – just been talking to Sheila, it seems you have her e mail address wrong, but `I have forwarded your new one, so she now has lots to read this afternoon, but I will e mail everyone shortly to update them, take care Pat, must have been the porridge! xx Carole.17 May 2017 at 3:05 pm #54577
Don’t forget about me dorro -Andy. I’m here to help and assist others.
Andy xx17 May 2017 at 5:59 pm #54579
Welcome to our forum. It’s my husband Dave who has Nets and he was diagnosed in 2009. He too cannot have any surgery due to other serious medical problems but also the tumours in his liver are in both lobes and there would be too little left if they attempted it. So he has for the past 8 years been having the monthly injection of Sandostatin LAR which works the same as Lanreotide. The injections can take a few months to fully take effect and side effects do vary from person to person so keep positive about them. They will help and they have kept my husband stable for 8 years, a far different story to what we were first told by doctors who were not familiar with Nets, giving my husband a prognosis of 6-12 months. Nets are so variable between patients and some patients have remained relatively well for many many years. There is a good website in America called http://www.carcinoid.org which may be helpful for you as different countries have different protocols but you are still welcome here too. I would say that if you have a Net Centre that you can go to then do so because they will be the experts and we always recommend patients see the experts. It’s one of the most important things you can do for yourself. The readings you are getting are pretty normal for someone who has just been started on the injections, so don’t worry too much about that and you will probably find they will decrease over the coming months. There’s lots of information under Support and Information on this website too if you want to find out more.
Meanwhile, I hope your symptoms settle down once the injections progress but please don’t hesitate to return should you need to.
18 May 2017 at 4:56 am #54581
- This reply was modified 1 month, 1 week ago by jennyl.
Thank you Carole for the warm welcome. I am sure I will be around from time to time. Hi Pat, it seems like we may have a lot in common and I look forward to getting to know you better. I am not on FB yet. Maybe someday. Wow Andy 11yrs and still going. That’s great and thanks for the encouragement. I am encouraged by what you wrote also Jenny. I am very grateful to have met you all. I am very blessed to know that there are others who are in this battle with me. I put my hope in God and find great comfort in knowing I have eternal life.
18 May 2017 at 6:48 am #54583
- This reply was modified 1 month, 1 week ago by Pete.
Good morning Pete, so glad we have helped, if you have faith and hope, then yes, you are indeed very well blessed. Staying positive is so important, speak soon, Carole.20 May 2017 at 8:19 pm #54593
Hello Pete. I’m relatively new to the forum but I’ve found everyone really kind and helped me with ideas for dealing with some of the symptoms of this cancer. One of the first things my consultant told me is that carcinoid tumours are slow growing and that the average life expectancy is 12 years. He has personally worked with people for longer than that. I had the primary tumour removed last year. After months of diarrhoea and treatment for IBS, I ended up in A&E because of sever vomiting and pain, luckily I was seen by a surgeon who thought I should have a ct scan. He was certain I had cancer in my small intestines. He operated and removed it all, that same day. Tests showed it was a carcinoid tumour and I was transferred to a NET specialist. An MRI showed that I have between 40 and 50 functioning metastases on my liver. I am having sandostatin LAR every 3 weeks. It does upset my stomach, diarrhoea and cramps, the severity varies. I was advised to take Windeze tablets as soon as I’ve had the injection. It does help. Also it helps me if I move around after the injection, it seems to get into my system better and helps with the discomfort.
I echo what the others have said, it is really important to see a NET specialist.
Good luck with everything.
Elaine25 May 2017 at 5:08 am #54605
Thanks everyone for your advice. I have an appt. with a specialist at the Mayo Clinic in Rochester Mn. next Thursday. I also found a support group that meets every other month about 10 miles from my house. I will be joining in on that support group and also a local online support group. God bless you all.
Pete25 May 2017 at 6:45 am #54606
Good morning Pete, you have done well! and I am sure you will make many new friends at the support group, we have lots of support groups and they are just great, and many friendships are formed, and you will also feel ‘not alone anymore’ God bless you too, Carole.
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