I have never really posted on the forums before but I'm asking for your prayers. I was diagnosed with Carcinoid Syndrome/NET (Neuroendocrine) Cancer on July 1, 2015. There is no cure, no treatment, nothing....except shots to help with symptoms. There are only 5 doctors in all of the USA that specialize in this cancer. Luckily I was able to to get into one last June who is in Iowa City. When I was there last year they couldn't find my main tumor (this is normal - it's very tiny and could be anyplace in my body). I will be going back for my 2nd appointment this coming Wednesday and they are going to do a ton more bloodwork and another Octreoscan (a 2 day nuclear scan) hoping the main tumor has grown enough to be seen so that they can remove it. They are also going to start me on Sandostantin, which is supposed to help with the crappy symptoms I have. I'm asking for prayers because I tend to be allergic to almost every drug I'm ever given so I am praying hard that I won't be allergic to this one for a change. There is good news to this - I was approved yesterday for the $25 copay for the Sandostantin shots that I will have to have monthly. Otherwise they run around 16K each! How insane is that?! It's an 8+ hour drive each way which is really hard on me. Thankfully we found a whole house to rent via AirBNB for a very reasonable price so at least it will quieter than last year at the motel. Thank you all in advance for any thoughts and prayers.
I'm so sorry for all you're going through, Joyce! Hope it all goes well at your appointment. Will keep you in my thoughts and prayers. Hugs!!
Joyce. So sorry to hear about the challenges you have been facing. My family will be praying for you. Sending hugs to you. Please keep us posted,
Kimber
I used to be indecisive; now I'm not sure.
I used to be indecisive; now I'm not sure.
You totally have my sympathy and my prayers!!!
You absolutely have my prayers and hopefully you will not have an allergic reaction.
I am so sorry about all you are going through. Many hugs to you and I hope you are not allergic to the meds.
I'm so sorry for all you are going through! I will definitely agree with you in prayer that the shots will work for you. And that is a blessing also that you got the $25 copay. Sometimes it is just insane what they want to charge for medicine.
kerp us updated on how you are doing!
kerp us updated on how you are doing!
Susan
Thank you so much ladies for the prayers. It means so much to me. I'm usually not anxious or upset about having this cancer until it's a few days before having to travel to Iowa to see the oncologist. Counting down the days til the 1st now. Hugs to all of you sweet ladies.
Lots of prayers coming your way. Keep your chin up!!!
Mildred - Mom to 2 girls and a husband (I tell people that I am a single mom of 3. Ages 59, 37 and 31) lol. And a proud Grandma to Orahn (7) Sawyer (5) and Mazie (3).
Thank you all again for the prayers. You are a wonderful group here on ACOT and I hope to be posting more after I get back from IA. Hugs to you all.
You certainly have my prayers. You just stay strong, and know God is looking over you. How scary that they have no idea where the tumor is, and that you have to pray it has grown enough to find it! I hope God lays His healing hand on you, and also gives you peace.
I would just like to say a HUGE THANK YOU to everyone for the prayers for my trip to the University of Iowa last week to see my Oncologist. The trip itself was uneventful, They did another scan and still cannot find the tumor. But my oncologist was very very happy with my bloodwork and my diabetes control. He said he has never ever had a patient turn their numbers of everything around so fast and so good. The only bad thing is now my thyroid is low and I"m on medication for that. I was also started on a new medication for the symptoms so I'm hoping I'll be able to tolerate it. I started this today. We made such good time going to IA that we stopped at the American Pickers store in LeClaire IA and on the way home we made even better time so a trip to IKEA was in order - I now have everything except one Alex set of Drawer to finish my scrapbook room with! I go back to IA for a new test in November but it is just for one day and I will be making reservations at the Hope Lodge this week for that appointment. Again, thank you to everyone for the thoughts and prayers. God Bless You All <3
What an AWESOME report Joyce!!! God is so powerful!! I hope you continue to feel better!
- joannie
I'm Im so happy things went well.
You'll be in my prayers.
You'll be in my prayers.
Last edited by JillinIN on Tue Mar 07, 2017 8:55 am, edited 1 time in total.
Jill
Jill
Jill
Prayers that all will go well, and that you will be comfortable and peace through this whole process. Hugs to you!
Susan
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