Mayo Clinic Connect
I would like to be in voplved in carcinoid cancer only as that is what I have
I am a new member (aged 84) even though my cancer was discovered in 2007 during an emergency operation for a twisted bowel. Transpired I had a carcinoid tumor which was removed and subsequently my oncologist discovered I still had rogue cells. It was not the end of the world because a treatment existed for this cancer and while not a cure it restricts its development. Every 4 weeks I receive a sandostatin injection and have just received number 100. The outcome for me has been the ability to get on with my life and thereby devote what time I left to my family.
It would be great to hear from others who have carcinoid syndrome.
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Hello @derekd. It has been a while since we have heard from you. How are you doing? If you care to share about your treatment, I was wondering if you are still taking the sandostatin injection. @gaylejean just mentioned that her doctor told her of a new medication soon to be available. Have you heard about that?
Liked by Colleen Young, Connect Director
Welcome to Connect @amyh2439.
We have a few members in the Connect community who have experience with carcinoid tumors. Please meet @joanney @hopeful33250 @lucci50
Ruth Ann, we look forward to getting to know a bit more about you. When were you diagnosed? How are you doing today?
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?
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@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.
Liked by Teresa, Volunteer Mentor
@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’d like to add my welcome to you @tresjur. Thanks for joining our Carcinoid group here.
Good to hear from you @hopeful33250 and @joannem
@joanney @amyh2439 @lucci50 @derekd @gaylejean it would be great to get an update from you all. How are you?
I have had four different oncologists and am presently seeing Dr. HenryPitot. My previous doctor had been researching NET for his specialty but heretired shortly after I started seeing him :(. He believed in MRI over CTscan because it shows more detail. I have never had an octreoscan – haveyou? The new medication is something of an offspring from the 60 mg. doseof Sandostatin. Do you get the Sandostatin injection? Gayle
When were you diagnosed and how old are you? Gayle
I, too, get Sandostatin injections every 28 days or so and have since mysurgery 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 toshare feelings with – something I have not done til now. Stay positive,Gayle
@gaylejean I have had 4 octreoscans over the last 7.5 years, however it’s been about 2 years since the last one. I currently take 50 mgs of sandostatin every 28 days. Originally I was given one shot of the 50 mg, but
for the last 2 years the shot is broken down into 2 shots (25 mgs in each hip). With the one shot, the injection
shot was sore for 3-4 days after. I rarely have soreness with the 2 shot procedure. The downside is if the
needle jams, then it takes more attempts to give the 2 shots. My last shot was 9 days ago. It took 2 attempts
to administer the shot in my right hip and 3 attempts in the left. Ouch!
Ouch is right! Over the years, I have had about four different nurses give me the shot. Only one nurse has ever had a problem with the needle jamming (happened two times) and having to retry. I get excited when I see any nurse other than her is working that day. Gayle
@tresjur and @gaylejean. Thanks for sharing your stories about the sandostatin injection problems. As I have never had to have these injections, I’d be interested in knowing what makes them so difficult. Has anyone explained that to you? If so, I’d like the information. Teresa
@derekd Hi Derek: It has been awhile since we have heard from you. I hope you had a good summer. How are you doing? Anything new in your treatments or care? We look forward to hearing from you. Teresa
@amyh2439 I’ve been thinking about you. You mentioned that you were having some genetic testing. Did you receive any information about that? How is your daughter doing? I wish you well. Please keep in touch! Teresa
@hopeful33250, a simplified explanation is the Sandostatin treatment comes in a kit that requires mixing the drug with a reconstituted solution, then inserted in a special syringe which contains another solution. This mixed product sometimes settles and create a sedimentation that can clog the needle. Novartis, the pharmaceutical for Sandostatin, does provide training for mixing and administering the product and upon request from the patient, will send someone out to the doctor’s office. Once it took six attempts
to administer one injection and the nurse was so distraught that I felt bad for her. Thank God I’m not needle-phobic and the injection really doesn’t hurt that much. When I was getting a 50mg shot in one injection, though, I would have pain at the injection site the following 3-4 days after. That is no longer an issue now that take the 50mg in 2 injections instead of one.
Thanks, @tresjur, the sedimentation explains why it is so difficult to administer. You are certainly brave to keep at it for six attempts. You are certainly made of sturdy stuff!
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