Dear all,

my name is Sarah from Germany. I come to you, because we are urgently looking for help. My fiancé is 27 years of age, HPV-negative, non-smoker, non-drinker, lived sporty and healthy all the time. He suffers from an very aggressive oral squamous cell carcinoma under his tongue since August 2014. Since then he underwent operations (e.g. an extended glossectomy), chemotherapies (e.g. with the EXTREME protocol - Cetuximab, 5-FU and Carboplatin), radiotherapies (up to 102 Gray) and an immunotherapy with the PD-1 inhibitor Pembrolizumab/Keytruda from MSD. But all treatment options failed so far. The last thing that was recommended to us was Giotrif/Afatinib, but even that failed. His tumour is visibly growing (and his pain of course) from day to day!

During the last weeks we did a molecular diagnostic investigation, that showed that he got 7 somatic mutations (in the following genes: PRKDC, PTCH1, POLE, PALB2, 2 times in TP53 and in BRCA2). But the institute told us, that the result does not lead to any therapy option for him.

As you all got a lot of expertise and knowledge in the field of cancer treatment, I would like to ask you, whether you could think of anything that could be of help for him. Or do you know anyone else we could address for help?

We are very much looking forward hearing from you, because we actually planned to celebrate our wedding, not his funeral… .

Thank you very much in advance!

Best regards, Sarah

Sarah, welcome to OCF. Im so sorry to read about what your fiance is going thru! At 27, he is very young to be dealing with so much. Oral cancer (OC) had always been a disease older people who have histories of smoking and drinking got. Now many younger, active, otherwise healthy patients are being seen, almost all are HPV+. Since your fiance is a nonsmoker and nondrinker plus he is HPV-, he falls into the 'no known cause' group. Regardless of what caused his illness bottom line is it needs to be eliminated.

From reading your post, I see you are well educated about OC and its treatments. I have to admit, as a non-medical professional I am unfamiliar with some of the things you mentioned. Its probably because other options are available in different countries. Here in the US, the FDA (Food & Drug Administration) has very strict rules and regulations in bringing new medicines and procedures to the public. At this time the only options to eliminate SCC cancer is thru surgery or radiation with/without chemo. Here in the US, at this time there arent any chemos alone that will completely kill the cancer. Chemo by itself is only used for palliative care. The new immunotherapy chemo Opdivo (nivolumab) was fast tracked thru the FDA to bring it to market and that still took years.

How I wish I had other options your fiance could try. Here in the US patients can go for second or even third opinions at another hospital. Is this an option where you are? Another opinion at a top cancer center may give additional options available to your fiance which arent available here in the US.

Best wishes!!!

Dear ChristineB,

thank you so much for your quick reply! The hint with a second or third opinion is a good one. Actually, since months I am constantly on the web, searching for experts around the globe to contact them. Still, the outcomes are really disappointing...

Do you know anyone else with that special type of cancer with such a young age? Its very difficult to find anyone - and someone that survived. Because the doctors in Germany told us, that they have around 3 people like him a year within Germany with a similiar type of cancer. But they all passed away after quite a short period of time.

Is there anything - besides the conventional medicine, that you got experience with and that goes against cancer of the tongue/ oral squamous cell carcinoma (like alternative/ complementary things)?

Thank you so much for all your help!

Best regards,
Sarah

Hi Sarah, I, too, welcome you to the forum. I am sorry you need to be here, but we will try to provide the support that you might need.

Here at OCF we put our trust in medication and medical procedures which have undergone rigorous testing and years of research. If you are thinking of medication that's not part of "convention medicine," may I suggest that you first take a look at the website www.quackwatch.org. There you will find listed all kinds of bogus claims commonly found on the internet. These have been shown to have no effect on cancer patients despite the wild claims that are made.

I would support a second or a third opinion at one of the comprehensive cancer centers. It may be that a doctor there may have a different take on your fiancé' so condition and has a slightly different approach.

I wish you all the very best in your journey. If you have further questions, please post as often as you like. Somebody among us might be able to answer that question.

Sarah, I do know quite a few OC patients/survivors who were diagnosed with SCC of the tongue at under 30 years old with no known cause. Please understand even if you take 5 patients all with the exact same age, diagnosis, sex, no risk factors same height/weight, etc that all 5 will have different experiences, no 2 patients are exactly the same.

What you told me when you said the current facility sees only 3 cases like your fiances a year tells me enough... get another opinion!!! Obviously that facility doesnt specialize in treating OC patients so they may not be as up to date with the correct treatment for someone in this situation. I would avoid looking for Dr Google for help. As far as alternative things go, they dont work! There are way too many false claims and fake cures online and eventually one will sound like it will work but in reality its only wasting your time by delaying the right medical treatment. Put enough info into internet searches and even an 80 year old man will be diagnosed with PMS. (LOL) Only surgery and/or radiation with or without chemo will work on eliminating SCC. I suggest searching for a top surgeon who is very experienced in OC patients as that may be the only available option after already having so many rads.

Best wishes with everything!!!