Hypopharyngeal cancer: Anyone treated with proton radiation?

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.  

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.

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!

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!

I had tongue cancer with a partial removal on April 6 at John Hopkins my physician moved to Boston. I never healed and the pain never topped
within the time frame I was told that radiation would help. I now hove Severe dysplasia under the right side of my tongue to the back and it really
hurts, don't know where to go for help, My options at UVA are to remove the Severe dysplasia, but the doc. says where do I stop remove
half your mouth, radiation, or look for a clinical trial, I am in constant pain and don't know where to do.

Sorry I am having problems with my PC jumping letters all over the place..........Elizabeth

Hi Elizabeth,
I'm glad you were able to find your way to the Head & Neck cancer discussion. Thank you for telling us a bit about you. Am I understanding correctly that you have ongoing growth of abnormal cells (dysplasia) which is not only painful, but is stopping your mouth from healing properly? Have you considered a second opinion? If you would like to consult experts at Mayo Clinic, you can call the Rochester number here: http://mayocl.in/1mtmR63

Did your surgeon offer to help find a clinical trial for which you would be eligible?

@mrsjhagen18 @sylviapf @lzzie @lisa_sj99 I hope you'll jump into the conversation. I think our newest member could use your understanding and thoughts.

I can't seem to get anywhere.  I will see a new doctor on Tuesday afternoon .  I spent 2 hours in a closed MRI and the technichian didn't MRI<br>the area needed for comparison as the report states.  Sooo there was nothing to compare it with.  I had the last MRI at John Hopkins<br>and it was unclear so it was no good.  This was the second MRI and I thought for sure this would be a clear one 3 mag. pull.<br>and they MRI the wrong place.  Now I will see this doc. in the same office.<br>What can be done with a large amount of dysplasia under one side of tongue from back to front.  WHAT??????<br><br>The doctors don't seem to aware of clinical trials.  No doctors know anything about clinical trials anywhere. Is this what we have come<br>to in medicine in the USA.  It was recommended that I leave the country for good medical care.  This is sad, so much of this country<br>is in a back slide.  I will keep you posted if I hear of anything that could help someone.  I would appreciate if you would do the the same.<br><br>

We receive excellent care from Vanderbilt in Nashville, TN.  My husband has salivary duct cancer...very rare.  He received a good response from chemotherapy.  We are on the second line of treatment with immune therapy.  After 4 treatments, his scans showed good shrinkage.  Clinical trials are available.  Good  luck to you.Sylvia Faries