As I mentioned two weeks ago (Cardiac Concern), I had to wear a Holter Monitor for a week because of a low heart rate incident. I did that and turned it in and waited for week. There was no call from the cardioligist, so I called them on Friday. They were confused because they had intended to order it for me to wear for the monitor 30 days but instead it was ordered for 7 days.
I had two incidents of atrial fibillation symptoms during that time. Those symptoms had not occurred since long before my surgery last year. I was working on installing ceiling lights in a kitchen and apparantly working with a heavy fixture over my head brought it on. The cardioligists did not seem concerned about that. However, there was at least one event that I did not detect but the Holter Monitor did detect when my heart rate fell to 35 again. They still don’t know why or what to do.
They have decided that I must get fitted again tomorrow for the monitor and wear it for 30 days this time. I hate that because going to the gym is embarrassing with the electrodes on your chest and the wires hanging down and also I wouldn’t get to use the therapy tub or steam room. Oh well, maybe we will figure it out this time.
Again… More will be revealed. Maybe.
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Dear Cy It’s just the nurse in me but don’t go in the steam room. You have atrial fibrillation the heat is not good for your heart or the equipment. Check with your doctor about your exercises with atrial fibrillation. I ‘m on my 3rd month of Sandostatin LAR 30
mg. I have liver neuroendocrine liver cancer mets after having pancreatic cancer 5 years ago. Well so far I have lost 9 pounds and have been miserable with diarrhea ,severe cramping and fatique yuk. Just started on Viokase enzymes that help but not completely . Good thing I’m chubby , not for long I think. Any advice. .
Hope they find out the problem for yourself.
Thanks shelley orr,
The usual afib symptoms occur rarely. I have bradycardia which apparently is not the same thing. My cardiologist says don’t do things that are unsafe if you pass out from low heart rate. They are trying to figure out what to do about it.
I started on LAR 30 and it did not help a lot during the first 3 months of treatment. The dosage was increased to 40 and I felt a lot better and had fewer symptoms for a few months until the disease started progressing again. Then, last June I had the liver surgery which removed the largest tumor. I have had very few symptoms and not so severe. The diarrhea and cramps and even fatigue and some depression rarely ever bother me. The afib and bradycardia quit also until recently and I believe they are somehow related to the carcinoid tumor, so the bradycardia may be a signal that the carcinoid is progressing but I still have no diarrhea, constipation, cramps or fatigue. I very much recommend surgery if possible and every talk by every NETs expert I have heard recommends surgery even if it only debulks the know tumors. That is why I worked until I could convince my HMO to do it.
For the day to day diarrhea, imodium usually controlled it for me in the past. I often alternated between diarrhea and constipation. Usually colace helped with that.
May you have the best possible outcomes,
Cy
Why haven’t they considered a pacemaker since I sincerely don’t know how your managing with a heart rate of 30bpm. A second opinion? By the way I will pray for you if you pray me. Well. I’m still learning to pace myself as you are I’m sure. Take care. Shelley
Hi Shelley,
A pacemaker is part of the consideration right now. I really only have a rate in the mid 30’s quite rarely. They are also considering taking me off flecainide.
We have another couple weeks of wearing the event monitor and see whatever there is to see. I will certainly keep you in my thoughts and meditations.
Thanks,
Cy
I had a tumor in the cecum colon and was diagnosed with Carcinoid Cancer. After surgery, my surgeon and Oncologist both felt like they removed everything and after an Octreoscan, the results were very positive. However, I had “episodes” of atrial fabillation that my Oncologist said was probably gas or over exercising.
The episodes have decreased, but there is still some concern. A Holter Monitor was never mentioned, but I hope it will work for you to find anything wrong with your heart. It would seem that 7 days wouldn’t be long enough, but that’s just my opinion.
I wish you the best and please keep in touch. I always read your updates and appreciate the effort you give to everyone!
Thanks Joanne,
My oncologist is still convinced that the Sandostatin may cause or aggravate the afib. I believe that both the Sando and the Carcinoid Tumor do that. I also believe that the bradycardia is separate from the afib and my cardiology team seems to think the same. It does seem to be related to carcinoid however. As I mentioned in an earlier post, my latest echo cardiogram shows no sign of Carcinoid heart damage.
Cy