Diagnosed with aggressive NET. Happy to see this group!
I was diagnosed in May with aggressive NET, which started in the colon and had already spread to the liver with a 6 inch tumor. I started in the ER at Rush University Hospital in Chicago where I received my first infusions inpatient, but have since moved to Northwestern, which is the best in Illinois. As soon as I switched, I was given the sandotatin injection along with daily dexamethasone. Between those two my quality of life has really improved. I know many say that chemo is worthless with this cancer but both oncologists I have had insist it be given a shot with how large my tumor was, and I certainly haven’t done any oncology residencies myself to argue.
My legs are like Jello most days and I’m fairly certain it’s caused by the chemo (as leg weakness is an occasional side effect of carboplatum (and it gets a little worse after each set of infusions). I’ve noticed ankle swelling for the first time tonight (though am not feeling any cardio/breathing issues and I have been on my feet most of the day) and I’m fighting chronic diarrhea. However I actually feel really good–far better than before I was diagnosed, unquestionably! I’ve continued my MBA through all of this and will graduate in December, and still work pretty normally with the exception of my infusion week.
I would certainly go to Mayo if they were closer but I can’t justify it at the moment. I have a couple more rounds of chemo in the original treatment plan and if I feel I’m getting nowhere at that point I’ll probably consider it but I really do love my treatment team and feel they are giving me loads of attention and help. I have a lot of confidence in them.
I’ve learned from this experience that attitude is everything, and really do value each relationship (work, spouse, friends) so much more now. I’m far more aware of the responses I give daily in reaction to petty nonsense. My perception of what matters has changed, for the better!
Anyway, I just wanted to introduce myself. I don’t know how long I have left on this earth but I was delighted to read about many of your experiences and it has given me what I needed most; hope! Thank you! There’s so much old information out there online that gives me an abysmal chance at three years so I already love this group! I’m not so worried about when I will pass on; but it’s really great to to see that it might not be over just yet! 🙂
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
Hello @somefan and welcome to Mayo Connect,
As a NET survivor myself (3 X) I’m sorry to hear of your diagnosis. NETs tend to be a very slow growing malignancy so it is somewhat unusual to hear of an “aggressive NET” but then there is always something new to learn. I’m happy to hear that you have faith in your oncology team and they are interested and supportive of you. I also appreciate the fact that you say, “I’ve learned from this experience that attitude is everything, and really do value each relationship (work, spouse, friends) so much more now. I’m far more aware of the responses I give daily in reaction to petty nonsense. My perception of what matters has changed, for the better!” I wish we could market that attitude for all of those dealing with difficult chronic illnesses. We have a number of members who have had NETs in the liver.
I would like to introduce you to some of our Members in the NET discussion group, @mollie59 @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 @junebug15 @tomewilson @gman007. I’m sure that they will come around and welcome you to the group and share their experiences.
It sounds like your symptoms are better controlled now and that is good.
We look forward to getting to know you better. Please share with us, as you feel comfortable, a bit more information about yourself. You do not mention having had surgery, is that planned for the future? What type of symptoms were you having that led to the diagnosis?
Welcome to the group and I hope you find encouragement and helpful information here. You are definitely a newbie with just being diagnosed in May. As you explore and read more, you will find that everybody’s journey can or may be different from another’s, but we all have something to share.
I’m in my ninth year of treatment, diagnosed in late 2008. I’ve had no surgeries to date, which bothered me in earlier years, but I’ve since learned that
for some people “wait=and-see” may be an accurate treatment course. I’ve been on sandostatin since January 2009, with a dosage change here
and there based on my numbers. A few years ago, my oncologist prescribed Afinitor (pill version of chemo) and I tried it for six months but my body
did not tolerate it well so he took me off of it. The sandostatin alone has been working very well for me in keeping the tumor growth at bay and helping
with the diarrhea and flushing.
You mentioned you suffer with chronic diarrhea. The FDA approved a drug, Xmerlo, this year that helps with controlling diarrhea when the SSA injections fails to do so. You may want to ask your doctor about this.
When I was diagnosed and told that carcinoid is a slow growing cancer, I began my research for information. At that time I learned that I would probably only have 4 – 5 years left. How wrong that information was. I now know people can and do live a lot longer — the moderator for our Michigan carcinoid support group has been living with it for over 20 years and I met a woman at a seminar that was also past the 20 year mark.
May I recommend a book entitled “But You Look So Good……Stories by Carcinoid Cancer Survivors” by Maria J. Gonzalez. The book starts with good information from some of the leading carcinoid doctors in the country, however the rest of the book deals with actual stories of carcinoid survivors (some sad, but most are informative, encouraging and hopeful).
I, too, stay as positive as I can along this journey. My glass is always half full…sometimes three-quarters full. I agree, too, that attitude plays a significant part in dealing with this rare disease. I count my blessings, treasure my family and true friends and try to keep stress to a minimum.
Please stay informed and keep in touch.
Thanks for sharing these encouraging words and talking about the book, “But You Look So Good……Stories by Carcinoid Cancer Survivors” by Maria J. Gonzalez. It sounds like something we should all read.
Super sorry for the delay everyone! It’s been a hectic work week and school week as well!
@hopeful33250 Thanks for the kind welcome and introductions! Having a negative attitude doesn’t do anything but sour the days we have remaining, however many that might be! I’m still very young in this process I suppose. I have gone through 4 rounds of three visits of chemo (total of 16 infusion visits) so far, once every three weeks (with a slight delay between the 1st and 2nd set due to insurance issues). No surgery, and no talk of it yet until after we get a grasp of how I have responded to the current treatment plan. My initial symptoms were severe abdominal pain, dry heaving, and blood in my stool. I started by going to my primary care provider whom put in a referral for GI, but the soonest I could get in was two weeks. The pain got to be too much. On the day I broke down and went to the ER (while still waiting for my GI appointment) I also having severe liver pain as well. It was VERY swollen, apparently, along with a 6” tumor. I went from no symptoms to essentially stage IV cancer in a matter of a couple of weeks, in terms of my awareness of the situation. I assumed I was going to be going to the ER to have a gall bladder removed or something. I was wrong, obviously. I went to bed that night pretty sure of the diagnosis and my colonoscopy with biopsy confirmed it the next day.
In the last few days Neuropathy has really gotten pretty bad, along with some ankle/foot/finger swelling. I’m really hoping that it doesn’t continue to get worse. I can live with it at this level but not much more. I’ve had some leg weakness as well that seems to be worse over the last couple of days. I got called in for a potassium infusion on Friday, prior to my chemo on Monday as I was low with that. This hasn’t really been my greatest week since diagnosis so I do have some concern for the future with regards to quality of life. When I go in tomorrow morning I am certainly going to address these concerns.
@tresjur Thank you! Wait and see, combined with chemo and my monthly injection seem to be the pla right now, which does seem to coincide with what the experts are saying is the norm (based on what I’ve seen online at least) considering the state of severity on my liver at diagnosis. My doctor is on vacation at the moment so I am meeting with a PA tomorrow before infusion, but I’m going to ask about Xmerlo for sure. Thanks for letting me know about that, as well as the book recommendation! I certainly hope that I outlast the life expectations I’ve read about. I worry some because of how aggressive mine has started out. Both oncology teams I have worked with informed me that the more aggressive strains respond better then chemo; I know this form of cancer doesn’t historically respond well to chemo so I’m very curious as to what will show up when we check the progress.
Wishing you well as you have your infusion tomorrow and talk with the PA. Praying for you as well! Please stay in touch and let us know how you are doing.
Hello Justin (@somefan), I would like to add my welcome to Connect along with the others in this group. I have no medical training or background and do not have any experience with NET but I do have peripheral neuropathy (20+ years) and only had a formal diagnosis last year when I decided I needed to know more about why my legs were going numb and if there was anything that will help. I had several MRIs and an EMG and met with a neurologist who diagnosed that I have idiopathic small fiber peripheral neuropathy. Fortunately I am one of the few that has no pain with the neuropathy, only numbness. Mayo Connect was the first connection in my journey and it started me on my way to finding some answers for my health concerns. One of the things I learned along the way about neuropathy is that there are many causes. One of those causes is unfortunately chemo therapy. It is a powerful tool to fight cancers but it’s not without it’s side effects, one being that it can cause neuropathy. Mayo Clinic offers some information that may give more insight:
By being my own advocate, I found something that works for me. Hopefully it may be something that could work for you also. You can read my story in an earlier post here:
Hoping you find some answers that will work for you. Keep asking questions and learning as much as you possibly can about your health concerns – you are your best advocate. Don’t give up!…and please keep sharing as much as you are able.
Hello Justin @somefan
I was thinking about you and wondering how you are doing. Are you feeling OK since your last infusion?
Thanks for the response and I am embarrassed by the delay. I need to remember to check this site daily!
The last infusions hit me pretty hard admittedly which was probably part of the reason. My neuropothy has definitely hit harder and I have some pretty significant blurring in my left eye that hasn’t yet gone away. I am going to schedule an ophthalmologist appointment on Monday per my oncologist’s suggestion. I have to wink to effectively read text on my computer and I feel like I’m looking at the world through a sheet of plastic with a slight distortion…..Very annoying!
This all kicked in on the first infusion day, which is the day I get the carbopatin so I’m going to blame it on that. I felt pretty terrible after that infusion, but not so different on day 2 and 3 when I just got the etoposide.
I too am a new to NETS, just being diagnosed in late May. My Carcinoid cancer attacked my heart so I am preparing for open heart surgery in 3 weeks to replace 2 valves. I had my injections of Sandostatin last Thursday and am feeling much better now. My liver is full also.
I bought the book “But You Look So Good” as well. The beginning is very informative and resourceful, the personal stories reinforce the importance to stay focused, and how staying positive is the name of the game. We all have doubtful days, but we do need to learn to quickly shake it off and find our smiles.
Best of luck to you, stay strong, ask questions, and find a doctor you really trust.
Hello Justin @somefan
I appreciate your checking in with us and letting us know how you are doing. I’m sorry to hear about the increased neuropathy and vision symptoms. I am glad to hear the you have an appointment with an opthamologist. I suppose you already know this, but you can increase the size of the words on your computer screen by pressing the Shift and the + (plus sign).
Does your oncologist say that the vision problem is related to the infusions?