Head and neck cancer

Posted by lisa_sj99 @lisa_sj99, Aug 26, 2016

My husband diagnosed with hypopharyngeal cancer in late June. He had a tonsillectomy and the right tonsil was removed. He will be ready for radiation and chemo treatment next week. Based on our research, we have decided for him to be treated with Proton Pencil Beam radiation in San Diego. Have anyone has the similar cancer and treated with proton radiation? I heard there are still many side effects (I.e. Dry mouth, swelling, skin irritation and fatigue etc.) with proton treatment. What do you use to alleviate the side effects? Thanks!

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.

@colleenyoung

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.

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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
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
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.
and they MRI the wrong place.  Now I will see this doc. in the same office.
What can be done with a large amount of dysplasia under one side of tongue from back to front.  WHAT??????

The doctors don’t seem to aware of clinical trials.  No doctors know anything about clinical trials anywhere. Is this what we have come
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
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.

@colleenyoung

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.

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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

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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Thanks for your information. I had partial tongue removal due to cancer stage one. I have severe dysplasia in the area of surgery
and time is of the essence for some type of treatment. I was told by John Hopkins that chemo does not work on this area,
not sure. I am very interested IN IMMUNE THERAPY , COULD YOU TELL ME MORE OF YOUR EXPERIENCE,
GREATLY APPRECIATE!!!!!!!!

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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My husband has stage 4 cancer with no cure available.  The immune therapy, Keytruda.(.Pembrolizumab) has FDA approval for head and neck cancers.  Ken has a 30 minute infusion once every 3 weeks.  We just had his first scan between the 3 rd and 4th infusion.  We had significant shrinking of most tumors.  The only negative side effect has been a rash which is easily handled with medicated lotion.  It is my understanding that this expensive therapy is a second-line treatment.  Medicare approved it, so we are thrilled!  We wish you luck as you seek help.Sylvia 

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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Immune therapy is a targeted cancer therapy. Through a complicated process, the T-cells are activated to attack the cancer cells. The drug uses your own immune system to fight the cancer.

Hi @elizabethbryant,
I hear the frustration in your messages. I’d like to offer some resources for finding clinical trials. The best place to start your search is the clinical trial registry that the U.S. National Institutes of Health maintains. Go here: https://clinicaltrials.gov
I put in the search terms “oral epithelial dysplasia” and got these 52 results https://clinicaltrials.gov/ct2/results?term=Oral+epithelial+dysplasia&Search=Search
As you can see from the list some of the studies are still recruiting participants while others are completed. Each trial lists the the eligibility criteria. Your doctor can help you determine which trials you may be eligible for. You can also read more about clinical trial eligibility here: https://clinicaltrials.gov/ct2/about-studies/learn

Interestingly, I received an email from a colleague about a trial here at Mayo Clinic for people who have had oropharyngeal tumors removed. You have to be a Mayo patient to participate. It’s not specifically about treatment for dysplasia, but I thought you might be interested in reading about it and to research proton-beam therapy.

– A Study of Using Proton Beam Therapy Which Spares Mucosal Tissue Following the Removal of Oropharyngeal Tumors http://www.mayo.edu/research/clinical-trials/cls-20200701

What was the result of your appointment with your doctor on Tuesday?

My doctors appointment is on Tuesday Dec. 27 and he is in the same office with the doctor that did the biopsy, don’t know what he can do than
to order the third MRI. One was done John Hopkins (not clear) couldn’t use, second one done Oct. 30 at UVA and after 2 hours didn’t scan the
area under the tongue. No doctor has heard of a trial anywhere. Thanks for checking on trials and so forth. I have puddling under the front and
right side of tongue and this is where the surgery was done and it was the cause of the errosive condition that lead to cancer. That was
never addressed by a doctor and still is not to this day. Whatever I eat salvia puddles up taste and burns, this is not acid reflux, I had all the test
it was something that was puddling and eating up the tissue in the right side of my mouth which finally led to cancer. Now Severe Dysplasia
and the pain causes the doc. to believe they may be some cancer cells in the affected area.

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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I had tongue cancer on the right underside of my tongue. then it stayed painful and I was told (just before
the surgeon left John Hopkins that I needed a resection and cut more out and graft skin from my arm.
I had the lst surgery April 6, with graft from my leg.
I am asking if this immune system treatment would be something that could be used on my Severe
Dysplasia and I continue on not knowing if there are cancer cells in the Dysplasia that starts from
the front underside of my tongue all the way to the back only on the right side.

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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These are good questions to bring to your cancer care team, Elizabeth.

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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I have and each doc. acts independently of everything else. Getting no where fast. I am praying that the doc. on Tuesday
will come up with something. I will review the good information you sent and present it to him also. Thanks

@elizabethbryant

Thanks for your information. I have severe tongue dysplasia and have had part of my tongue removed. I have been told by John Hopkins and UVA
that chemotherapy does not work well on this area. So I am a little puzzled. This gets more confusing. What is immune therapy???

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Hi Collen I did see an ENT doctor at UVA and there is no treatment for Severe Dysplasia and I was told John Hopkins took out the area
(I had Severe Dysplasia on the right side under my tongue and the area in the front was cancer and then dysplasia extend under
the right side of tongue all the way to the back) The doctor said taking out only the area that was cancer and not all the way
to the back under side of tongue he was concerned would lead to what I am facing now (I hope this is not confusing)
The raw inflamation in the front of tongue is chronic pain. He told me to make an appointment with Palative (sp) care for pain
med. I can’t believe this, like third world country medicine. I hope you can make some sense of all this. Should I be
doing something with steriods or any anti inflamatory med. or what? Where should I go, should I have more surgery….WHAT?

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