I am still so confused. I thought a metastasis would be closer to the source...lung or head/neck. My husband's is to the pelvis and he is having different protocol of chemo to see if the cancer responds. I recently read on a very old post that you could have radiation to the bone and that has not been mentioned. Help clarify somebody!

Scc dx 1/11
Surgery: removal of tonsil bot w/ clear margins 2/11
Radical neck dissection 2/11 70 nodes removed (14 positive)
Imrt rad 35/cisplatin 3 cycles
6/11 pet scan - dx metastasis to pelvis & femur
Current treatment: carboplatin, erbitux, 5 Fu
Currently in chemo

Ki owish I could hel. As far as I know you can have radiation to bone - I'm sure someone who knows for Aurelius will be along soon. Take care! I'm sorry you're going through this!

Seems like Andy is in uncharted waters...not typical to have such a distant metastasis. Been in touch with Brian and he confirms that this is unusual.
Andy had his pet scan Tuesday and we meet with his oncologist next week to find out if the mets are responding to new chemo regimen. Waiting is so hard as you all know.
The saying "expect the best, but prepare for the worst" is a hard one to balance.
just gotta get through the weekend. Thank goodness for glorious weather, some live music, and Alabama football. Also, the movie "50/50" is coming out tomorrow...anyone planning to see it?
Appreciate any words of wisdom from those of you who have dealt with recurrence.
Sincerely, robinleigh

Robin, please add a signature. It will help get more responses, people will understand the situation easier.

Click on the 'My Stuff" tab. On the drop down menu select "Profile". Scroll to the bottom and type in the white box, hit "Submit".

Recurrences are not easy to go thru. One thing to remember, you both are now much smarter about cancer. You know all the jargon and understand so much more than the first time. Have faith that everything will be ok.

Im a huge movie buff but no, I will not be seeing that movie. I am not able to watch things like that, it bothers me seeing comedy made out of tragedy.

Hi there - I think recurrence is something we all fear... The distant mets is scary but should be treated with the same effort that the first cancer was. Do the one foot in front of the other thing and live for the now. I know it feels a little like his body has betrayed him in some way, but (because I've thought about this a lot) you both need to ask yourselves did I do everything I could? Am I? Part if the reason I went through chemo and rads and had radiation bilaterally was for this very reason. So if the answer is yes then continue to fight do what you can on your end to maximize the effects of the chemo and by trying to stay healthy. Don't live for the cancer - it is a part of your life but not your life so despite cancer being in the back ground - do what you can and what you like. So as I said live in the now - not going to see 50/50 and I don't watch the big c - a little to close to home for me right now! Hugs! Have a good weekend and hoping you get great results next week!

Bone mets have progressed so this chemo regimen was ineffective.
I hope none of you face a recurrence but, I wanted to pass on the site that registers all clinical trials. It is www.clinical trials.gov and is very easy to navigate. Andy is eligible for a phase 3 trial so that will be our next step. He may have some radiation to the bone first and then we will wait 28 days before starting the trial. That is one of their criteria.

Meanwhile, we are going to embrace the blessings we have in life...especially on a 28 day break from chemo!

Robinleigh
Caregiver to husband, Andy 57 yo
Dx scc Jan.2011 tx tonsil/bot surgery - radical neck dissection - imrt radiation
concurrent with cisplatin chemo
Dx metastasis to pelvis/femur june2011 tx carboplatin/erbitux/5FU
Dx disease progression in bone October 2011 tx pending decision

Hugs to you and good luck with the trial!.

New to forum. Diagnosed squamous cell carcinoma under tongue in 1990. Removed surgically. No radiation or chemo needed. Reoccurence in 2005 under tongue much deeper. Surgery completed and did not do free flap but were close margins. Three lymph nodes positive for squamous cell carcinoma. 31 doses of high radiation given. Cannot taste anything and mouth very dry. Reoccurence in 2009 squamous cell carcinoma of tongue and left jaw. Radical neck resection completed. Titanium bar put in to rebuild jaw. Free flap surgery. Trach and feeding tube after surgery. Fall 2009 started carboplatin every three week Sept thru Nov. February 2011 started on Erbitux and Taxol weekly. Went off Taxol in May2011. Second week of Jun 2011. Severe pain in jaw.
Went to different doctor was put on Erbitux weekly starting July 2011 to see how it would work.Not responding so added Taxolto the weekly treatment of Erbitus. Have had three treatments. Experiencing ear pain and severe jaw pain. Last pet scan showed little increase while cat scan showed cancer spreading deteriation of bone and implant hardware. Fistula has developed at sight cancer metasticized on skin. Fistula is getting larger and opening is larger than the size of your thumb nail. Opening looks angry and is constatntly draining. Am keeping it packed w gause. Through previous surgeries Ted rarely took any pain medication. He is taking his pain medication regularly just to be able to try and eat. It is getting more difficult for him to open his mouth and harder to come up with things he can eat. He has no taste as the radiation six years ago killed any taste buds. Any suggestions would be greatly appreciated. His last surgery was April 12,2009, on his birthday. It will be two years in April 2012.

Thanks
Debbie C

Have the tried removing the titanium... A lot of people have a bad time with it... Maybe they can rebuild his jaw out of his leg bone? That woul eliminate some of the cancer - and maybe reradiation. A few here have had more than one round with it. Good luck. Wish I could offer more help.

Debbie and Ted are very brave! its a story like theirs however that if I should have a recurrence I will not even consider anymore treatments. One and done Im not the one. Hopefull my post will not spark a fire storm of anger.

Stick, it's easy to speculate on what you might do when the thing isn't actually back. It's surprising what you can do when your life is about to end if you don't do anything. I've had a couple of cancers, and each time I couldn't believe how bad the treatments were, and how they brought me physically and emotionally to my knees. I wanted to quit a couple of times� really tough guy huh? But with the support of friends and family I got through it. After the first time I said the same thing. But when my life was about to be lost to it, I let the docs do whatever they wanted to get that crap out of me.

Nevertheless, this is always a personal decision, and I suspect if I had been older, led a full life, etc. etc. has other conditions that compromised my quality of life significantly, I might have let things go. But I would have arranged to die by some other means. Death by oral cancer is particularly harsh, and I'm too much of a pussy to go that way.

TED, Welcome to the forum and thanks for posting. Now that you have, just a quick lesson in forum courtesy. You should start your own thread (choose the new topic button, not the reply button) This start you a thread/discussion of your situation and thoughts, unique to you, that people can follow and comment on. When your posting is in the middle of someone else's thread it gets lost, and often not replied to as a result. In web parlance it's called hijacking a thread, but we have it happen a lot here with new posters.

Cheryl, I don't think that removal of the titanium would change much, though it is taken out when the device, implant, plat etc. starts to go south. Titanium is totally biocompatible, which is why many implants including the oral implants I made in my company were made of cp titanium. The bone has a natural affinity for it, and there is actually an ionic bond formed between the titanium oxide and the osteoblasts of the new bone forming around it, that bond it so firmly in place, that if a good implant has to be removed for some reason (poor placement angles in the mouth are too common preventing proper post implant placement restoration), they have to be cut out with high speed burs and much bone can be lost in the process. So titanium as an element itself is never a problem in osseointegrated implants or fixtures.

I have sent Ted a PM with very info about beginning a new post. Glad Brian wrote on this or I never would have seen it.

Ted, I hope you are going to be seen at a top cancer center for help with your recurrence. Best wishes with everything!

Stick

No firestorm, no anger, just a suggestion that you also consider the many stories of those of us who have had the cancer come back and who still have a fulfilling life. It's not always a horror story with a tragic ending. My wish for you is that your "resolution" remains hypothetical. Our recurrence club does NOT need any new members.
Charm

Very well said, Charm!

Stick, I hope you never have to go thru being diagnosed with cancer a second time. The first round was bad enough. Charm is right, the recurrence club sure has had enough patients that it does not need any more. Wishing you continued good health!