Hi all,

we had had all sorts of good news after Joe's most recent round of chemo/rt/surgery this past spring. But bad news can't stay away. They thought he had an infection on his incision site, took a biopsy, cancer in soft tissue of the neck. Our doctors are telling us nothing can be done (seems a little early for them to say this since we haven't had the PET done yet).

I am trying to remain positive, at least until we see what the PET says, and we are thinking of trying to get into MD Anderson. But he says the pain is sort of in the back of his head and neck - I am so afraid. What if it is days, not weeks or months? He has this weird snore so now I feel like his airway is getting blocked.

What does the end look like? What on God's earth do I do with my boys? They are 3 and 5. I have already told them, but I am not sure I want them to see the ravages of the end, and then, I don't want them to miss even one second with their amazing dad.

my eyes are literally sore from crying.

Angie, I am so sorry to read your post. My heart and prayers go out to your and your family. Your children are so young that you will need some help while going thru more treatment. Several members have been thru this awful part of OC and Im sure they will respond to you.

Please go to the cancer center immediately. Recurrances move very quickly so you must be aggressive in how you handle this.

Im saying prayers for you, Joe and your children.

Get to MDA ASAP and see what they say.

Angie, my heart is breaking for you.

Angie if you need to talk or ask questions then pm or e-mail me and i am here whenever you need an ear.

love liz

Yes...Go to MD Anderson ASAP

Hi angie- Very very sad to hear of this recent development.
Maybe there is a test chemo he can try via MD Anderson.

My heart goes out to you. I wish that you weren't going through this.

We are here for you! Don't give up hope yet.

XOXOX k

Geez angie,, go do anyhting possible but get him to the best as soon as possible. It;s bad enough christine had a reoccurenec again and now your man too, there just isn't justice in this world.

Thanks so much everyone. Our onco changed his tune a bit once he saw Joe - told us not to give up hope. Joe cannot have any more surgery or radiation in his neck, but chemo is still on the table. So although we have lost two important weapons, we still have one left.

We do not know how far this has spread - we are afraid because Joe has a lot of pain not only in his neck but in the back of his head. The scans are on Monday, and hopefully by Tuesday or Wednesday we will know more. The oncologist couldn't give us odds or his thoughts on how long Joe will be around without seeing the scans.

So today - he is back in the cancer center, getting chemo (taxotere this time -- may also add Erbitux). The oncologist said that this drug should hopefully extend Joe's life and improve the quality of his life by keeping the cancer from growing. He also said that he himself had one patient who had a very similar situation to Joe, who was down to doing only chemo, and the cancer actually went away for good. And he has another patient right now with the same cancer which spread to his bones and lungs, and he has been able to go about his life for the last 2 and a half years as normal, treating it almost like a chronic condition. So there is still hope. Also, the oncologist is very much in favor of sending us to one of the big cancer centers to see if we can get Joe on a trial. We are leaning toward MD Anderson since they have a lot of cutting edge gene therapies that look promising. We have to wait until the scans are in, and then they will get everything together for us and send it down. So right now, I am just sifting through all the trials at all the major cancer centers, to see what I can find.

Thank you so much for all of your thoughts and prayers!

Angie

Ask your doctors at Anderson about CyberKnife radiation. I too was told at first that I could have no more radiation to my neck after getting 40 IMRT at the "maximum" of 72GY. It averaged out to a little less than 2 GY a day. So I had the surgery when the cancer came back but the pathology report was so bad, they said it would come back a third time. The CCC radiation team suddenly changed their tune and said CyberKnife. So I went in and got a full 5GY a day for a week for another 25GY. It was not easy, but I am proof that more radiation is possible, just as long as it's not more IMRT.
As my radiologist put it: we need all the help we can get.