Hello all,

My 57 year old mother, living abroad, was diagnosed with SCC in her right cheek in October 2009. Since then I have been following this board through her surgeries, recurrences, and radiation treatments. Your stories have been a huge help and comfort. Many thanks.

In December, we were told of another recurrence in her right and left cheeks, as well as the spread of cancer to her lower jawbone. Due to the unavailability of immediate surgical options (reconstructive surgery), she started chemo in January, and has made it through 3 rounds. At the moment she's pretty weak and battling severe pneumonia.

Today we received some bad news. After reviewing her latest CT scan, the doctors are saying that the chemo hasn't been effective and that the tumours have grown. They are recommending that treatment be stopped altogether, and she be put on morphine. It's hardly been over a year since the initial diagnosis of a very small tumour, with a very optimistic prognosis from the doctor. I would appreciate any advice on where we should go from here. We don't want to give up like this...

This cancer can be very aggressive - my advice is to get her somewhere where she can have the surgery she needs - which sounds like a mandiblectomy and likely reconstruction of the affected areas - then possibly a follow up with chemo. There is always the option for a second opinion. She is very young to just give up! Plus if it hasn't hit her lungs or vital organs then it seems crazy to stop the fight.

I with is could suggest more but it seems like she really needs the surgery. Has she had a neck dissection? Best of luck with your mom... My prayers to you and your family.

Maybe the rad seed implants would help her. After everything else helped, I was given Radiation seed implants . This was supposed to prevent any more cancer from rearing it's nasty head. I have been thru hell and I think it was from the implants. From under the chin, while you are put in a coma, they insert the implants thru the chin into your tongue and leave them for a few days. You are kept in a sleep and quarantined with only the Dr or nurse to get near you to check on your condition, as you are radioactive. The after affects are severe and I would hate to see your mom go thru more pain but if it would do the job then it's worth it.

Thank you very much for your replies and well wishes. We really needed someone to give us some hope for continuing the fight after hearing the doctor say that my mother has a month and a half left.

The tumor in the left cheek has increased in size during chemo, and is causing her a lot of pain. However, the neck dissection and all of the CT scans so far have shown no sign of disease in the lymph nodes or the lungs.

My mother's current doctor never gave us the option of a mandiblectomy, and advised us towards chemotherapy alone. While she was about to start chemo, we got a second opinion from another doctor in the US who said that the mandible should be removed within a month, and that having chemo would make the operation difficult, if not impossible to perform. Just arranging to bring my mother to the US was a process that was realistically taking very much longer than a month. We could find no other surgeon willing to take the case. Therefore, on the advice of my mother's doctor we decided to begin chemo, hoping to stall things while we worked to figure out some better option.

Based on your suggestion, we have made an appointment to find out if radiation seed implants would be available in this case.

I just want to clarify one question we have - can a mandiblectomy still be performed after chemo?

I also want to look into another option that is available. There is this treatment machine called Cytogen. It is originally used for arthritis treatments, however, it is also claimed to be used in focused burning of tumors. Upon my searches, I have found that this is experimental, and has not been approved. If we exhaust all other options, I was wondering if anyone knows anything about Cytogen in cancer treatment?

Once again, I would like to thank you from the bottom of my heart for your kind replies and know that my prayers are with you as well.

I don't know anything about the machine I'm sorry. Chemo works on blasting ones immune system and working to kill the cancer cells. It's a poison. Usually healthy cells will recover, cancer cells not so much. I am ot sure what kind of chemo she's on, and I am by no means an expert - but. Think the reason it's hard to do surgery after chemo is because of the chance of infection... Compromised immune system and all, but I would ask an expert. It is the same with operating on radiated skin. Apparently this is also is hard. The radnseeds may help her. She sounds healthy - otherwise. Is there no place perhaps another country nearby that she could go to for her surgery?

Best of luck.

JB,

There's a lot here so I'll answer as many questions as I can with the information you've provided, I'll share my personal opinions and thoughts however please know I'm not a medical professional so take that as it is.

A mandiblectomy is a very big surgery and yes it can be performed after chemo. Unlike most OC patients I had rads/chemo first to try and shrink my tumors in order to make surgery a possibility due to the shear size of them. I responded well to treatment and then had my surgery performed at one of the top programs in the states (UWMC ranked 12th in ENT at the time by US News). Between the neck dissection and mandiblectomy I spent 17 hours on the table. Understand, a mandiblectomy is an advanced procedure, especially if the tumor is large or in a bad spot and not every surgeon will be able to do it.

A patients overall health going into that surgery is one of the determining factors on if they will perform it...I'm assuming they believed that your mom wouldn't be healthy enough to survive the procedure. There are a lot of questions I have though as to her care anyway as to me it doesn't make sense.

Chemo generally isn't used as a stand alone tx with OC, it's normally used in conjunction with rads to enhance the effectiveness of RT. Where Cheryl is right, it's a poison but it only attacks fast growing cells in the body. Standard of care with advanced stages of OC is surgery then rads + chemo, deviations are generally made for tricky cases and are done by tumor boards where several medical professionals are given a chance to study and weigh in on the best treatment protocols.

As far as the Cytogen machine goes, I've never heard of it nor could I find it in a quick search. My personal opinion would be to get your mom stateside and try and find a surgeon as really surgery or rads or the combo of both are the only proven ways to beat this disease.

Best of luck

Eric

Welcome to OCF! I also have had a mandibulectomy done. It is a big operation! Mine was not as extensive as Eric's but I was on the table for 10 hours. I was then kept in a medically induced coma for 3 weeks, after some complications my hospital stay lasted for 2 months. It is not a simple surgery. I had mine done after going thru radiation with chemo and having 2 recurrences. The mandibulectomy was my only option to survive my third bout of oral cancer.

I do not understand why chemo was given as a treatment. Chemo alone will not kill this type of cancer. It is usually given with radiation to make it more effective or in pallitive care situations. Other countries do things differently than what we normally are used to seeing around here.

No info about the Cytogen machine. Never heard of anything like that before.

The best thing to help your mother would be to get her to a large cancer treatment center where they are familiar with oral cancer. She needs a team of doctors all working together as soon as possible.

Best wishes to both you and your mother!