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Ruth Ann (@amyh2439)

Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 7 1:15pm | Replies (93)

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Welcome to Connect @amyh2439.
We have members in the Connect community who have experience with carcinoid tumors. Please meet @joanney @hopeful33250 @lucci50 to get you started.

Ruth Ann, we look forward to getting to know a bit more about you. When were you diagnosed? How are you doing today?

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Replies to "Welcome to Connect @amyh2439. We have members in the Connect community who have experience with carcinoid..."

I was diagnosed in July of 2014 and have been in Hospice now for 2 weeks (at home) but its due to my COPD not my cancer which enables me to continue my sandostatin shots ,I am still learning about Hospice as they have some hard to understand rules .Otherwise doing ok as well as I can!!! lol

Hello to all — I am new to the group and interested in connecting with others diagnosed with NETs. I was diagnosed in December 2008 and have been on sandostatin injections every 28 days since 2009. I live in the SE Michigan and the closest support group is in Grand Rapids, about 150 miles away. Even though I know better, sometimes it feels that I’m alone with this rare disease, so I welcome friendly and informative connections with others that are living with Carcinoid. I’m in my 92nd month of treatment, no surgery to date and doing well except for occasional flushing with itching and fatigue. I’m extremely thankful for my doctors that work together to ensure the best care possible and for my progression to date. I stay as optimistic as I can in view of my condition. Even in bad situations I look at what is good and positive in my life. This attitude keeps me going — my glass is always half full.

Hello – sounds like you are doing well. I was diagnosed in May 2014 and on sandostatin shots every 28 days. I have had surgery – a hemicolostomy, They removed a little bit of my small bowel at the bottom end, my appendix, cecum, illium and any other plumbing in that area , plus all of my ascending colon , 1/3 of my transverse colon, a small piece of my lower stomach and some more small bowel at the top. It took a long time to heal and my body to adjust to the removal of my insides, but I am doing well. I was glad to hear that the only treatment you have needed is the sandostation as that is what I am hoping for. I am expecting to need my gall bladder out as I now have stones and thickening of the wall of gall bladder and pain but that should be a piece of cake compared to what I have already been through

Hello @tresjur and welcome to Mayo Connect. I appreciate your attitude and the “glass half-full” approach to life! I also live in SE Michigan and U of M has become my source for carcinoid treatment. I would love to attend the support group in GR, however, it is a distance for me as well so it is good to have Mayo Connect. Carcinoids do produce a sense of “aloneness” in that very few people have ever heard of it and because traditional chemotherapies and radiation are not used, it also leaves you feeling on the outside of the traditional cancer spectrum. I have had three surgeries for carcinoids, but no other treatment have been needed as I don’t have the symptoms of the carcinoid syndrome (flushing, diarrhea, etc.). If you live in SE Michigan have you tried Gilda’s Club? It is a cancer support group. Their main office is in Royal Oak, however they also have meetings in Farmington Hills at Beaumont/Botsford. They offer yoga classes, art therapy, Look Good, Feel Better, etc. It is good to have you join our group here at Mayo Connect. Keep in touch!

Many thanks to all who have responded and welcomed me into the community. I look forward to
receiving and sharing information and experiences as I travel this slippery road of Carcinoid. Blessings,

Hello @hopeful33250, I’ve registered with Gilda’s Club in Royal Oak a few years ago but only attended a few of their sessions.
I’m only a few minutes away from Botsford and just started looking into the Wellness Group they have there. I also just received
a brochure from St. Mary Mercy in Livonia and it seems they have a lot of programs going on over there too. Look Good, Feel Better —
I’ve attended twice and really enjoyed those sessions.

About 5 years ago I attended the very first retreat hosted by a non-profit, named Hearts2Love. Linda, the founder and two-time breast cancer survivor, wanted to create an environment where women either in or out of treatment could go to relax, connect, express and enjoy themselves. At the time I attended the cost was only $20 which covered 2 nights lodging and all meals in a beautiful. serene area, and included yoga, drumming, dancing, massages, journaling, workshops and more. We were a small group of 12 women and it was
a delight to see Linda’s dream come to fruition. I believe the cost is now $35 for the entire weekend. This retreat is held in Brighton,
Michigan. I have not yet been approved by this site to post URL links, but if you google Hearts2Love and/or Linda D’Antonio, you should find information about this retreat.

Although ten of the participants were breast cancer survivors, it was at this retreat where I finally met another “NOID.” We shared information, phone numbers and addresses and I hoped a friendship would occur. Unfortunately, after the retreat, she never responded to my emails or snail mail and although I was disappointed, I respected her decision. I pray all is well with her.

Looking forward to hearing more about the new medication @gaylejean just mentioned in her post. Does anyone have any additional information or name of this med? Also, please excuse my ignorance, but I have no idea what “blue bowels” is. Can some explain?

Be Blessed,

@tresjur Thanks for all of the good information about the retreat, etc. I just attended the Look Good Feel Better this month and was surprised at all of the cosmetic companies who donated products. I will look into the retreat that you mentioned, it sounds wonderful. We must live in the same area if you are going to the Farmington Hills Gilda’s Club. I was not familiar with anything going on at St. Mary’s in Livonia. Hopefully, someone else will come up with the name of the new medication. May I ask who your doctor is? Keep in touch and stay well! Teresa

I reside in Redford and I see Dr. Michael Berkovic at Beaumont/Botsford Cancer Center.

@tresjur We are almost neighbors! I’m glad to know that you are connected with a good doctor nearby. I’m looking forward to getting to know you! Teresa

I, too, get Sandostatin injections every 28 days or so and have since my
surgery in 2008. I try to stay optimistic but it can be hard at times –
like right before I go for my 6-month checkups. Two weeks before I am a
“bear” – brought on by nerves. It is a comfort to have someone else to
share feelings with – something I have not done til now. Stay positive,