Welcome to Connect Lisa.
I have a few members I can introduce you to. Please meet @mrsjhagen18 who has squamous cell carcinoma of the tonsil, @sylviapf whose husband has salivary duct cancer and @lzzie who has squamous cell carcinoma of base of tongue. While they don’t have the exact same cancer as your husband, I’m sure they can offer thoughts about side effects of treatment.
@mrsjhagen18 @sylviapf, have either of you had proton beam radiation?

@rossam @audrapopp have had proton beam radiation for brain cancer.

Lisa, you may also be interested in this discussion “Mouth sores, no taste and no saliva and other side effects” http://mayocl.in/2bGXo9g

We look forward to getting to know more about you.

We have not had surgery nor radiation. Ken completed 6 months of chemotherapy..Pacliitaxel and CARBOPLATIN. While his response was excellent, we still have 3 tumors with little to no response. Considering the PET scan in January, we are thrilled, and praising the Lord for this response. We have 3 months off; the second line of treatment will be Nivolumab. As of April, FDA approved this line of treatment for head and neck cancers. We will have scans the end of September to determine when this treatment will begin. There is no cure for salivary duct cancer, but these treatments are giving us hope for more time and quality of life. Prayer support is essential to maintain a positive attitude.

Welcome back @sylviapf and thank you for responding so quickly to give us an update on Ken. Enjoy your 3 months off.
By the way, I will be opening a new group just for Caregivers this weekend. I’ll be sure to let you know when it is ready.

@colleenyoung

Welcome to Connect Lisa.
I have a few members I can introduce you to. Please meet @mrsjhagen18 who has squamous cell carcinoma of the tonsil, @sylviapf whose husband has salivary duct cancer and @lzzie who has squamous cell carcinoma of base of tongue. While they don’t have the exact same cancer as your husband, I’m sure they can offer thoughts about side effects of treatment.
@mrsjhagen18 @sylviapf, have either of you had proton beam radiation?

@rossam @audrapopp have had proton beam radiation for brain cancer.

Lisa, you may also be interested in this discussion “Mouth sores, no taste and no saliva and other side effects” http://mayocl.in/2bGXo9g

We look forward to getting to know more about you.

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I have had 2 chemo treatments and will not start any radiation until after a 3rd treatment is completed so not much help from me…sorry.

@sylviapf

We have not had surgery nor radiation. Ken completed 6 months of chemotherapy..Pacliitaxel and CARBOPLATIN. While his response was excellent, we still have 3 tumors with little to no response. Considering the PET scan in January, we are thrilled, and praising the Lord for this response. We have 3 months off; the second line of treatment will be Nivolumab. As of April, FDA approved this line of treatment for head and neck cancers. We will have scans the end of September to determine when this treatment will begin. There is no cure for salivary duct cancer, but these treatments are giving us hope for more time and quality of life. Prayer support is essential to maintain a positive attitude.

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sylviapf, thank you for responding. The oncology said my husband thoat cancer is curable since it is HPV (Human papillomavirus) positive. He will start 7 weeks of proton radiation and chemo next week. We are praying for a good outcome even though the treatment journey will be difficult. I read several articles on the Internet, radiation and chemo have many side effects such as mouth ulcer, dry mouth, swelling, difficult swallowing, and fatigue etc. I am sorry sick about his upcoming treatment.

Lisa_sj99. The journey for your husband will be tough but you will definitely get a good outcome. I was diagnosed in September 2015 with SCC of the base of the tongue stage II and III. Had chemoradiation and my last three weeks of treatment was double radiation, which was radiation in the morning then again in the afternoon every day. I did get mouth ulcers and loss of saliva glands but if your treatment team are really good they will certainly help your husband through this. I am now seven months since treatment and I am now at my new normal. Your husband will have to listen to his body and just take it easy and rest plenty of rest. Good luck and you are both in my thoughts

@sylviapf

We have not had surgery nor radiation. Ken completed 6 months of chemotherapy..Pacliitaxel and CARBOPLATIN. While his response was excellent, we still have 3 tumors with little to no response. Considering the PET scan in January, we are thrilled, and praising the Lord for this response. We have 3 months off; the second line of treatment will be Nivolumab. As of April, FDA approved this line of treatment for head and neck cancers. We will have scans the end of September to determine when this treatment will begin. There is no cure for salivary duct cancer, but these treatments are giving us hope for more time and quality of life. Prayer support is essential to maintain a positive attitude.

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Be sure to tell your dentist about the treatment. My husband uses a special toothpaste with more fluoride.

@lzzie

Lisa_sj99. The journey for your husband will be tough but you will definitely get a good outcome. I was diagnosed in September 2015 with SCC of the base of the tongue stage II and III. Had chemoradiation and my last three weeks of treatment was double radiation, which was radiation in the morning then again in the afternoon every day. I did get mouth ulcers and loss of saliva glands but if your treatment team are really good they will certainly help your husband through this. I am now seven months since treatment and I am now at my new normal. Your husband will have to listen to his body and just take it easy and rest plenty of rest. Good luck and you are both in my thoughts

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Thanks! Sorry for not responding. It has been relatively hectic trying to settle in our new rental apartment in San Diego. My husband just completed 2 weeks of proton radiation and chemo. He seems to be fine other than minor fatigue. His taste buds have changed since bottled water now tastes like salt water. We manage with favored water for now. The radiation oncology said he may not experience radiation side effects until week 4 or 5 due to lower radiation doses. With proton radiation, the doctor was able to avoid the saliva gland and tongue on the right. The left side of the saliva gland will be impacted since his cancerous tumor was hiding inside of the voice box. Anyway, I am keeping my fingers crossed and hope he will ride this out without major long term side effects.

@lzzie

Lisa_sj99. The journey for your husband will be tough but you will definitely get a good outcome. I was diagnosed in September 2015 with SCC of the base of the tongue stage II and III. Had chemoradiation and my last three weeks of treatment was double radiation, which was radiation in the morning then again in the afternoon every day. I did get mouth ulcers and loss of saliva glands but if your treatment team are really good they will certainly help your husband through this. I am now seven months since treatment and I am now at my new normal. Your husband will have to listen to his body and just take it easy and rest plenty of rest. Good luck and you are both in my thoughts

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Hi
That seems a good outcome and hopefully there is no major side effects for him. When I first finished treatment I totally hated bottled water it had such a horrible taste but I did not like anything with flavor either. Now seven months out from treatment that is all I drink is bottled water. I also find that hot water is quite soothing. Wishing your husband all the best for his recovery on this journey

Hi @mrsjhagen18 @sylviapf @lisa_sj99 @lzzie,
It’s been a while since we’ve been in touch. I thought I’d check in.

Lisa, how is your husband doing? Any new or challenging side effects lingering?
Sylvia, has Ken restarted chemo yet?
MrsJHagen, How is the radiation treatment going? 35 treatments must be exhausting.
Izzie, how is the underactive thyroid? What did the blood tests in September indicate?

I look forward to hearing from all of you.

@colleenyoung

Hi @mrsjhagen18 @sylviapf @lisa_sj99 @lzzie,
It’s been a while since we’ve been in touch. I thought I’d check in.

Lisa, how is your husband doing? Any new or challenging side effects lingering?
Sylvia, has Ken restarted chemo yet?
MrsJHagen, How is the radiation treatment going? 35 treatments must be exhausting.
Izzie, how is the underactive thyroid? What did the blood tests in September indicate?

I look forward to hearing from all of you.

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I appreciate your checking in with us, Colleen.  After three months off chemotherapy, the cancer was growing again.  Instead of another round of chemotherapy, Ken was approved for immune therapy using Pembrolizumab (Keytruda)   He has an infusion every 3 weeks.  Between the third and fourth infusions, we will have scans to assess results.  There are many benefits:  more time between appointments, no side effects so far, and only one hour to complete the infusion process.  From just a physical touch, we can no longer feel the tumors, so we are very encouraged and hopeful.  By mid-December, we will have scan results which will determine if we will continue into 2017 with this immunotherapy.  

@colleenyoung

Welcome to Connect Lisa.
I have a few members I can introduce you to. Please meet @mrsjhagen18 who has squamous cell carcinoma of the tonsil, @sylviapf whose husband has salivary duct cancer and @lzzie who has squamous cell carcinoma of base of tongue. While they don’t have the exact same cancer as your husband, I’m sure they can offer thoughts about side effects of treatment.
@mrsjhagen18 @sylviapf, have either of you had proton beam radiation?

@rossam @audrapopp have had proton beam radiation for brain cancer.

Lisa, you may also be interested in this discussion “Mouth sores, no taste and no saliva and other side effects” http://mayocl.in/2bGXo9g

We look forward to getting to know more about you.

Jump to this post

My husband has salivary duct cancer.. no cure available now. Treatment options :
Chemo (carboplatin & paclitaxel) for 6 months. We had good results. After 3 months off, the tumors grew again. We are now on immune therapy..pembrolizumab. Soon scans will tell us if this treatment is working. We are hopeful! Radiation is not an option since the cancer has spread.

@colleenyoung

Hi @mrsjhagen18 @sylviapf @lisa_sj99 @lzzie,
It’s been a while since we’ve been in touch. I thought I’d check in.

Lisa, how is your husband doing? Any new or challenging side effects lingering?
Sylvia, has Ken restarted chemo yet?
MrsJHagen, How is the radiation treatment going? 35 treatments must be exhausting.
Izzie, how is the underactive thyroid? What did the blood tests in September indicate?

I look forward to hearing from all of you.

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I have last cisplatin chemo tmrw. 8 radiation left. Body is pretty worn down but i am trying to power thru!! Exhausted but using full arsenal of meds, pain patches, etc. I will get thru it!!!

So good to hear from you Sylvia and MrsjHagen!

Sylvia, I can almost here the spring in your step. I think we’ll all be interested in following Ken’s experience with immunotherapy. Has he had 2 infusions already? Please do keep us posted. And how are you doing?

MrsJHagen, doing both chemo and radiation simultaneously (or as the medical lingo says “concurrently”) must be exhausting and compounding. The last leg is in sight. I admire your determination to power through and am glad you’re pulling on all available resources. All the best with the last cisplatin treatment today. We’ll be thinking of you!

@colleenyoung

So good to hear from you Sylvia and MrsjHagen!

Sylvia, I can almost here the spring in your step. I think we’ll all be interested in following Ken’s experience with immunotherapy. Has he had 2 infusions already? Please do keep us posted. And how are you doing?

MrsJHagen, doing both chemo and radiation simultaneously (or as the medical lingo says “concurrently”) must be exhausting and compounding. The last leg is in sight. I admire your determination to power through and am glad you’re pulling on all available resources. All the best with the last cisplatin treatment today. We’ll be thinking of you!

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He has now finished 3 infusions. We really feel blessed this therapy was approved for head and neck cancer. I made a big decision for my own health. I have been suffering with an arthritic big toe joint for the past few months. The only cure is to fuse the joint. I had this procedure done on my right big toe in 2013, so I am well acquainted with the process. With an uncertain future, we decided I should have the fusion surgery for the left toe now. I need to be in good shape to take care of Ken. I am two weeks post-op now and healing well….so glad I have only two feet! Family and friends are such a blessing to help!