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Any one with Neuroendocrine tumors getting the shot once a month?
I have heard there is side effects to the once a month shot( unsure of the name) what has any one experienced?
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@maeve115: Many NET peers are more long-time survivors than me, but I just passed my 5 yr since diagnosis. I continue my monthly Lanreotide injections but have to give credit to 6mo treatment of Lutathera PRRT radioactive infusions. This treatment stopped all tumor progression, shrank all but one tumor (all are stable) and has given me back the quality of life I missed as being a cancer patient.
My days I fill with “living a better life than EVER”. I enjoy my hobbies (deliver handmade afghans to Loma Linda Veteran Hospital for inpatient distribution), choose to be helpful to several Mayo Connect patients and look for laughter & happiness in every day. I know this sounds kinda “Polly-Anna”, but life is good! My diagnosis is Stage 4 due to prior metastasis to liver, so I have accepted my medical NET prognosis is an unknown; however, ALL humans live in an impermanent condition forcing thinking people the truth that we only have this moment… our futures can dissolve at any time. Why not live every day thinking positive of ourselves, our friends and neighbors?
Be well. Be happy. dbamos1945
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4 Reactions@dbamos1945
Your words resonate. I have been dealing with Cancer diagnosis for twenty years and have been able to live a full life of purpose and people. I enjoyed reading all that you appreciate and achieve living in the present moment to the fullest. Appreciate the practicality!
In my post I was answering nicknfl question of ""I was curious if anybody has any insight into dealing with this cancer, emotionally as well as physically and mentally." I think your response is a helpful example in finding one's way through the NET maze which adds another dimension to answering that question. Mutual zebra support is such a positive plus. Grateful.
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5 Reactions@maeve115
Are you comfortable sharing how it helped you personally? Even one example could give us a clearer picture of what Wellness Coaching is all about.
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1 Reaction@hopeful33250
I was helped personally: A competent compassionate NET -aware coach accompanied me as I gained a deeper ability to live with NETs.
I cannot think of one particular example to write about but as a result I felt lighter and more resilient.
This personal take might be helpful:
“Health (Wellness) Coaching helped me move through a very difficult time in my journey with cancer. It was the support I needed to regain my energy and motivation. I recommend Health (Wellness) Coaching to anyone who wants to build physical, mental and/or emotional strength while struggling with illness.”
https://www.ncf.net/healthcoaching
— Mary Zoeller (NET patient)
Another person wrote about their personal experience :
"The coaching process was remarkably beneficial! When my cancer load increased, and the painful and disruptive symptoms undermined my resiliency and quality of life, my coach helped me set new goals and manifest them one by one. From exercise and meditation to dietary changes, these lifestyle corrections vastly improved my health and well-being during a difficult time.
I could not have accomplished so much without it! "
— NM (NET patient)
https://www.ncf.net/healthcoaching(for more explanation)
Hope this helps a bit more..
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2 ReactionsI was found to have neoindicrine cancer after a tumor was discovered blocking my small intestine. I had a dotatate scan after the tumor was removed and it was found to have metastasized to my liver, bones, and lymph nodes. I was started on lanreotide to and after 4 months of those injections I had another dotatate scan which showed the cancer had progressed significantly. I was then started on prrt which I finished a few months ago . My scan post luthera showed my cancer was stable and some of tumors showed shrinkage as well. Although being on lanreotide didn't help, I continue to get those injections as my oncologist can't say it didn't do anything at all and those injections don't cause me any side effects. Now it's just watchful waiting... hopefully the prrt treatments will keep the cancer stable as long as possible. Due to other medical issues, I am not a candidate for any of the other treatments available for nets.
All of this was started 6 months after I completed 2 years of maintenance treatments for lymphoma which is in remission. I am really enjoying this time of minimal doctor appts after a long time.
Unfortunatly during all of this, I lost my wife suddenly and unexpectedly about 2 years ago as well. It's been a really rough road, and i thank God for kids and grandkids as they are the reason I get out of bed each day and continue to move forward.
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8 Reactions@thunderdad5
What a difficult NET journey especially with the loss of your wife .
I like your moniker "Thunder Dad" and recognize your gratitude for kids and grandkids as so motivating. I feel similarly. And oh, appreciating, those reprieves from some Doctor appts.
Thanks for your input. Helpful. Relatable.
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2 Reactions@thunderdad5: It sounds like your NET Specialist Oncologist is spot on with your cancer treatment.
My journey is very similar to yours and I continue with the 28day Lanreotide injections as this is designed to control disease progression and the many side effects our cancer cells produce (I had constant diarrhea, headaches, stomach pain, etc.). Over the last 5 yrs since receiving the Lanreotide injections I know this treatment is working to improve my quality of life.
I wish you best days ahead…
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4 Reactions@dbamos1945
I wish you peace and good times ahead
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4 Reactions