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.
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?
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?
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?
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?
@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
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?
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?
@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 have had four different oncologists and am presently seeing Dr. Henry<br>Pitot. My previous doctor had been researching NET for his specialty but he<br>retired shortly after I started seeing him :(. He believed in MRI over CT<br>scan because it shows more detail. I have never had an octreoscan - have<br>you? The new medication is something of an offspring from the 60 mg. dose<br>of Sandostatin. Do you get the Sandostatin injection? Gayle<br><br>
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?
I, too, get Sandostatin injections every 28 days or so and have since my<br>surgery in 2008. I try to stay optimistic but it can be hard at times -<br>like right before I go for my 6-month checkups. Two weeks before I am a<br>"bear" - brought on by nerves. It is a comfort to have someone else to<br>share feelings with - something I have not done til now. Stay positive,<br>Gayle<br><br>
@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!
@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
Connect
Connect
Like
Helpful
Hug
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?
-
Like -
Helpful -
Hug
1 ReactionHello @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,
M.
-
Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
1 Reaction@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 have had four different oncologists and am presently seeing Dr. Henry<br>Pitot. My previous doctor had been researching NET for his specialty but he<br>retired shortly after I started seeing him :(. He believed in MRI over CT<br>scan because it shows more detail. I have never had an octreoscan - have<br>you? The new medication is something of an offspring from the 60 mg. dose<br>of Sandostatin. Do you get the Sandostatin injection? Gayle<br><br>
When were you diagnosed and how old are you? Gayle<br><br>
I, too, get Sandostatin injections every 28 days or so and have since my<br>surgery in 2008. I try to stay optimistic but it can be hard at times -<br>like right before I go for my 6-month checkups. Two weeks before I am a<br>"bear" - brought on by nerves. It is a comfort to have someone else to<br>share feelings with - something I have not done til now. Stay positive,<br>Gayle<br><br>
@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
-
Like -
Helpful -
Hug
1 Reaction