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sylviapf
@sylviapf

Posts: 17
Joined: Jul 14, 2016

Salivary Duct Cancer

Posted by @sylviapf, Jul 14, 2016

My husband was diagnosed with stage 4 salivary duct cancer. After 6 months of chemo, all but one tumor has responded. We are currently on a 3 month break from treatment. Our second line of therapy might be Opdivo. I would like to connect to other patients/families that are traveling this road.

REPLY

Welcome to Connect, @sylviapf.
I’m tagging @hopeful33250 @predictable and @dawn_giacabazi in this discussion. While they don’t have salivary duct cancer, they all have first-hand experience with cancer as a patient or caregiver. I’d also like to include @lynnkay1956 who has had treatment with Opdivo, and @burrkay who is caring for his wife who has lung cancer.

We look forward to getting to know you Sylvia. Maybe you can tell us a bit more about yourselves. What side effects is your husband dealing with? I’m sure the 3-month break is welcome. How are you doing?

@colleenyoung

Welcome to Connect, @sylviapf.
I’m tagging @hopeful33250 @predictable and @dawn_giacabazi in this discussion. While they don’t have salivary duct cancer, they all have first-hand experience with cancer as a patient or caregiver. I’d also like to include @lynnkay1956 who has had treatment with Opdivo, and @burrkay who is caring for his wife who has lung cancer.

We look forward to getting to know you Sylvia. Maybe you can tell us a bit more about yourselves. What side effects is your husband dealing with? I’m sure the 3-month break is welcome. How are you doing?

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We have a wonderful support group within our church, and both daughters are loving and supportive. Ken is receiving treatment at Vanderbilt Ingram Cancer Center in Nashville, TN. We are very pleased with our oncologist and all the associated professionals. The diagnosis was in late December with treatment beginning in early January. Ken has tolerated the chemo of Paclitaxel and Carboplatin extremely well. Fatigue has been the only significant problem. Our doctor indicated that Opdivo has recently been approved for head and neck cancer, so it now becomes an option. This cancer is extremely rare, so I am reaching out in the hopes of connecting with someone.
In the meantime, our doctor has encouraged us to live life to the fullest. We are taking her literally: we leave for a river cruise in Europe shortly. With a 6 week window of freedom, we choose to fly!

@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

@hopeful33250

@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

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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

@hopeful33250

@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

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@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

@hopeful33250

@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

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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.
Blessings! Sylvia

@hopeful33250

@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

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@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

Teresa, thanks for the suggestion. I am the QUEEN when it comes to Amazon! Love the convenience! Blessings! Sylvia

@sylviapf I agree!

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