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@sylviapf Welcome to Mayo Connect. I'm pleased to hear that your husband (and you) are tolerating the treatments and that you are looking forward to traveling. While I have not had the same type of cancer as your husband, I also have a rare form of malignancy, Neuroendocrine Tumors (NET), also called Carcinoids. I believe there is an added stress to dealing with something that is rare. You have to search for experts in the field and become your own patient advocate. I'm so happy that you have a supportive family and church support group. That means a lot. Best wishes to you both and keep in touch. Even with rare disorders there are folks here at Mayo Connect who can relate to these problems. Teresa
Replies to "@sylviapf Welcome to Mayo Connect. I'm pleased to hear that your husband (and you) are tolerating..."
@sylviapf I agree that research does not favor the minority and in this case the folks with rare disorders have a more difficult time finding the best treatments. I have recently found a doctor at Univ. of Michigan who specializes in NETs and I'm grateful for his experience. We also have a NET support group in the western Michigan area that provides info and support. The group is a three hour drive from where I live but I've gotten support and info through emails and literature that has been mailed to me. I'm planning on starting a support group at my church for folks with chronic illnesses. I'm looking forward to that as well. We just have to stay positive and hopeful. No doubt you agree! Best wishes, Teresa
Teresa, God bless you for your efforts in forming a support group in your church. Chronic illness can drain one in so many ways. The power of prayer and sharing these experiences brings peace like no other.<br>Blessings! Sylvia
@sylviapf Thanks, Sylvia. I believe you are right about that. Several years ago I read the book, Doing Well at Being Sick, by Wendy Wallace, and after reading the book, I realized how great a need there is to allow people to talk, share and pray in a faith-based group. Based on what you've written, I believe that this would be a good book for you and your husband. It is available on Amazon. Teresa
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Teresa, thanks for your words of encouragement. I agree that the rare cancers add to stress. Drug companies don't invest in research that affect a smaller population. With fewer studies, our options become fewer. My best wishes to you as you continue to hope. Sylvia<br><br>