Happy Spring sunshine -off to Hawaii!

What a beautiful spring day it is! I am getting ready for my trip to Hawaii. It turns out I need to take some Octreotide short acting injectable with me for the last 10 days. When I was first diagnosed in October 2011 I had to give myself 3 shots per day in the tummy. I did this for 6 weeks until they could tell that I was tolerating the medication well. Then we went to the LAR 30 long acting shots that I get once every 28 days in my hip area (alternating sides). So for the last 10 days I'm in Hawaii I'll be giving myself the injections again. Only this time I have lost all sensitivity in the area where I get the shots due to the surgeries so I shouldn't even feel the injections. :-) It is a very tiny needle and I tolerated the shots well. The every 28 days shot is a very large needle. I have to bring the viles of Octreotide and syringes on the plane in my carry on along with a letter from my doctor. Octreotide has to be refrigerated so I have to take a cold bag with me and ask the flight attendants to put it in the fridge on the airplane. This will be interesting. As long as they understand I'm not a security threat. :-)

I got a massage this morning and have Paityn and my friend Louise over for the day. We are going to walk the 3 mile Seward Park Loop. My yard is full of color and blooming spring plants. This makes me really cheerful every time I see and smell it. I've got wonderful little Easter baskets for the 3 grandkids all ready to give since I won't be here on Easter. There are a lot of good bunny and spring books for little ones. I got a Grandma Loves You book that is so darling.

My darling husband is finishing up our taxes and the kids tonight before we leave for Hawaii. There are many benefits to having a Corporate Controller husband when it comes to budgets and taxes.

Below is an interesting email I got today from the company that distributes Octreotide.

Happy Spring!!!

Love,
Caryn





Dear RealSupport Member,

As a person living with the challenges of metastatic carcinoid tumors (carcinoid syndrome), it is important to know that you are not alone. There are many others who face the same challenges and have the same questions that you may have.

In response to your request for additional support, I am pleased to welcome you to RealSupport, a new program exclusively for people who are coping with the daily challenges of living with carcinoid syndrome. Your doctor may have told you about Sandostatin^® LAR Depot (octreotide acetate for injectable suspension). Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarrhea and flushing associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in who initial treatment with immediate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined. Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor. Please see additional Important Safety Information below.

I have learned a lot since my diagnosis with carcinoid syndrome. As a retired school teacher, I have a strong belief in the value of education and support. RealSupport offers you a chance to learn about the challenges of carcinoid syndrome and about the experiences of other patients.

While RealSupport does not replace the guidance you receive from your health care team, it will serve as an additional source of information about carcinoid syndrome.

Through this program, you will receive:

• Patient Webcasts that give you a chance to view brief videos hosted by experts who can provide real insights into living with carcinoid syndrome
• Podcasts (ie, audio programs) via e-mail, featuring stories of real people with carcinoid syndrome
• A Treatment Journal designed specifically for people living with the severe diarrhea and flushing associated with carcinoid syndrome

If your doctor prescribes Sandostatin LAR in the near future, you will have the opportunity to update your information and receive appropriate support materials.

IMPORTANT SAFETY INFORMATION
Warnings and Precautions: Treatment with Sandostatin^® LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.
Before taking Sandostatin^® LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include: back pain, fatigue, headache, abdominal pain, nausea, and dizziness.
Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms.

INDICATIONS AND USAGE
Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarreha and flushing episodes associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in whom initial treatment with immeditate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined.

Smooth Sailing for now!

Hello everyone,

Following up on the last post I have had very good news. It has been determined that tumors have not grown, some have shrunk and that there is no cancer in my thyroid as previously thought. I will have another CT Scan in 6 months and labs done in 3 months. I will continue to have the Octreotide shot every 28 days. I am feeling much stronger and ready for more exercise and some weight loss. So far I have been consistently gaining weight which is good but you know there is a limit to how "big" I want to get. :-) As my choice of pants to wear each day became more and more limited and the scales were headed toward 160 I decided it was time to course correct again. I'm still trying to do the vegies and fruit primarily with no sugar, dairy, carbs, salt or alcohol but you know the better I feel the more I feel like celebrating, being happy, getting together with friends and treating myself. Its been difficult to stay disciplined even though I believe my good diet played a role in the tumor shrinkage.

My wonderful Uncle Jerry and Aunt Liz have generously given me there condo on the big Island to stay at for almost a month. I'll be gone April 3-30. I'm really excited. Peter will come from the 3rd to the 15th and Shari from Hood River will come the next week. I'll have a glorious week to myself there at the end. I'm looking forward to boating trips this summer, perhaps a kayaking trip to Utah to visit Wanda and a Ramero/Jamero family reunion in California in June. I'll be eating good and swimming in Hawaii and I hope to continue daily swimming when I return at the Lake Ridge outdoor swimming pool near my home. It opens on Mothers Day. I love being a mother and having a mother in my life and a daughter and son and 3 grandchildren.

This last March 15 was 29 years since my sister Cindi died in a car accident. I still think of her and miss her. My mom and I spoke of her on the day and I took Paityn, now 5 months old, down to Olympia to spend the day with her Great Grandma, in celebration of Cindi's life. Paityn was born on Cindi's birthday, October 18.

I was thrilled to spend happy time with Kimani, my oldest grandchild, who turned 4 on March 5th the same day my nephew turned 16 over on Vashon Island. I love all the family milestones and celebrating with loved ones. Everything about life seems more precious now. I spent an afternoon visiting with folks at CDSA while I had Ayana (9 months old, 2nd grandchild). Rhonda, Brianna, Liz and I shared laughter and as always it was great to see Maile, Nick and Flow. The team at Madrona CDSA continues to amaze me with their excellent preschool program where Kimani is a happy participant in joy filled days.

I'm heading off to yoga now and will walk around the Seward Park Loop afterwards if the sunshine stays around. If it pours down rain I'll ride the exercise bike and watch the nightly news then take a sauna. There is always a good choice and an option or possibility waiting I've noticed. The reason I can take off to do fun things in the afternoon while having Paityn over is that my loyal and fun friend Louise is here spending time with Paityn today.

Happy thoughts to you all during this glorious spring!