After a PET scan on Friday we just found out that the metastasis to my husband's lungs is spreading. The Erbitux did not work and things are getting worse. Our oncologist wants to try a different chemo. He also suggested a second opinion from a cancer center in NY that might be willing to get him on a trial since he is young. They also suspect the cancer has returned to base of tongue. All this after surgery, chemo, radiation and the Erbitux. I can't even ask "what next" because I'm afraid of the answer. I just keep thinking of Brenda.
Thanks for letting me vent, Sue

Sue- My heart goes out to you. I can't imagine how you must feel. Devastating. I pray that your sweet husband will get another shot at fighting this with another kind of chemo. I'm so sorry.
Please keep coming here for support. I know this isn't easy.

K

Sue,
I see you are from NJ. Where is he being treated? If the doctor is saying go to NYC, I would do it. I assume he is sending you to Sloan-Kettering. Your doctor should be able to get you an appointment there fairly quickly considering his condition. Second opinions are always good ideas anyway.

Take care,
Eileen

Oh Sue - I am just speechless. Everything in my head seems so inadequate. This is just heartwrenching. I will pray for your strength for your husband.

Sue,

I am so sorry. I can't even imagine where you mind must be going. I will pray that the doctors you see have some new insights for treatment. I will also pray for you and your husband to have peace and that you can get rest.

Cindy

Sue,

I hope the next chemo does the trick. Can't they operate and remove the part of the lung that has the cancer or is it to wide spread? Keep getting opinions.

Thank you all for your kind words. The doctor did suggest Sloan. He is being treated at JFK in Edison.NJ now but the doctor told us he is limited in what he can do. He doesn't have access to 2nd generation drugs that may help. As to removing the part of his lung- if it has spread to both lungs from the original floor of mouth it is probably running through his system and another operation will not stop the spread. He is being so strong and the respect I have for him now is more than I have ever had for anyone. I know that is what I need to hold onto because I am at the bottom of my own emotional strength.
Sue

Sue I am so sorry to hear the Erbitux did not work for your husband. If he is strong and being young, another chemo regime would be worth a try if your husband wants to go for it. His doctor must feel it worth while to want to refer him for a second opinion. It sounds like your husband has a strong will to live and will fight hard to make it happen. Strength and courage to you both as you continue to fight the beast that is oral cancer.

Sue-
I'm so sorry this is happening. There are other chemo drugs and it sounds like the doctors are on top of it. You are in my thoughts.
Melissa

Sue,
I am so devastated for you and understand that you must be at wit's end and as you say, bottomed out. Hugs and prayers that you and hubby have the strength to face the coming days and all the decisions that you are facing.

He is so young and I am so mad at this disease......

Deb

Hi All- I just put a call into Sloan Kettering to see if my husband is eligible for a trial. I'm not sure I would do it but he wants to try-God Bless Him. They will be getting back to me shortly. Keep us in your thoughts.
Sue

Sue,
I am so sorry. I can only imagine your feelings of despair. We are all no strangers to the anxiety and the unknown. Check out the website on a wonderful survivor. Just key in Randy Pausch. He is a former professor at a university that is winning in the face of adversity his fight with cancer. His attitude is so uplifting.
I will pray for you.
Debbie

Sue,
Even if he is not eligible for a trial, I would still go to Sloan for a second opinion. I don't believe the hospital that he is being treated at is a major cancer center and thus maybe Sloan would be able to do more for him since they see more patients with these problems. Keep us posted.

Take care,
Eileen

Sloan called back today and the nurse gave me a list of results/tests to fax over to them. She said Neil may be eligible for a trial or a the very least a second opinion(thanks Eileen). Here's to our next challenge!
Sue

Oh Sue that sounds promising!! and also sounds like something that will help with Neil's spirits since he suggested it. Alot more on you - I know - I hope you have some friends and family around to help and give you the occasional break. We continue to pray for you guys.

My thoughts and prayers are with you both. This is an evil, if not most evil cancer. Go to Sloan and see if they can offer more choices in his treatment. From experience, I think it is so important to exhaust any possibility of help. My daughter also had lung involvement that occured rather rapidly.

Linda- Your daughter was so young. It seems like the lungs cultivate this cancer faster than the original site. I'm so sorry for your loss. Thank you for your response. We are trying to get an appointment for Mid-April. I'm in the process of getting all the necessary reports over to them.
Sue

Sue,
I am so glad you will be able to get an appointment at Sloan. Here is hoping they have something in their bag fo tricks to beat this beast. Keep us posted.

Take care,

Sue,

Neil's courage and determination are amazing. My prayers are with you for successful treatment at S-K.
Malka

Sue: No matter what happens, we'll be here for you! Keeping you close in our thoughts and prayers.....

Lois & Buzz in NC