Hi again,
I have only posted a couple times here, mostly reading and learning so much I wished we knew during treatment. We have just been told my husband, John, has 15 cancerous lung spots that have metastasised from his BOT SCC which was cleared up with Tx. How can this be???? The PET scan that was ordered at 3 mo. post Tx we thought was more a formality, since the ENT said his tumor was gone and we should celebrate. Then the lung biopsy confirmed the spots were indeed cancer, incurable and inoperable. We are still in denial, I know, and I am mad, scared and shocked there is nothing to eradicate this evil cancer that was supposedly gone from the torturous radiation and chemo he endured. I still refuse to believe they have told us he could have 2-3 years to live!
We are going this Thurs to start a 4 mo. round of chemo, to try to shrink, or stop it from growing.
This is wrong and impossible for my 'big, strong healthy guy' husband of 34 yrs!!! I am numb.
Bonnie

Bonnie, I am so sorry to read your post. You and your husband must be devastated!!! Cancer unfortunately for a small few can and will come back. Have you gone for a second opinion? I dont want to give you false hope but having a second opinion could make a difference. Call a cancer center immediately and insist on an appointment this week. I will keep you and your husband in my prayers. Wishing you both all the best.

Here is a link to the nations best cancer centers.
http://oralcancerfoundation.org/resources/index.htm#centers

How devastating! I agree with Christine go get a 2nd opinion at a cancer center. You will be in my prayers as well.

Thanks Christine and Angelia, but we are already going to one of the best in the nation (so I've heard), U of MI CCC. That's where he had his first treatment this past spring. We are reading all we can on adjunctive therapy and nutrition. If anyone has any info that may help please advise asap.

Bonnie

I'm truly saddened by this news and will keep your husband and you in my thoughts. And please be careful of heartless scammers trying to sell you on alternative treatments.

Bonnie

Terrible news. I wish I knew of any effective adjunctive therapy or nutrition to share, but I do not. Don't give up hope on radiation or further chemo treatment. My understanding is that if oral cancer spreads to the lungs, the cancer cells in the lungs are actually oral cancer cells. That's why it's metastatic oral cancer, not regular lung cancer. If the radiation and chemo worked on the primary tumor cells, it could very well work on these tumors in the lungs. I hope so.
Charm

Bonnie,

I'm so sorry. Must have been horrible to hear this news. I hope that they can get the cancer under control so he can beat the odds. I think there are clinical trials for new experimental drugs that could help. Tell your doctors that you are interested. I will keep you both in my prayers.

K

John' MO is awaiting approval on a new clinical trial that he said will be excellent for John to participate in. Meanwhile, he is starting traditional chemo this week.
Prayers are truly appreciated.

Bonnie

Bonnie - My prayers will certainly be with you and John and hoping for some of the possible positive outcomes such as Charm's comment about the the chemo and rad working on the tumor since the cells are not really lung cancer cells, but metastic oral cancer cells. It makes sense to me that since the treatment worked on the oral cancer cells, they should work again in their new location. Also, even though you are already at an excellent Cancer facility, I can't help but feel that maybe a 2nd opinion may just have something to add that could help in some way even if it's just to know that they agree with the first opinion. I have heard of lots of people having their tumors shrink or disappear with chemo treatment so "beating the odds" is not out of the question here. I know it must be so devastating to hear a diagnosis with a time limit on life. My older 1/2 sister had breast cancer and was told when she was only 29 with three small children that she had 3 months to live but she went on to live until she was 87! So, anyway, my prayers will be concentrating on all the good stuff that could very well happen. And hopefully the new clinical trial will be another plus in John's recovery.

Bonnie, you certainly have my prayers, warmest thoughts and wishes for a recovery.
My husband's cancer was also clear at his PET for BOT and we were totally thrown to hear that it was in his axilla. Especially since there was no sign of it on any previous PET.
They removed the cancer surgically but for good measure are doing radiation(and possibly chemo). They are still discussing the plan.
I know it's not the same as mets to the lungs. But we were told what other people mentioned. They are doing the radiation/chemo because they know he responded well to the treatment already. Keep in mind not everyone does. So, there is a treatment possibility that your husband has already responded well to. That's a good thing.

I also think that 2-3 years while sounding shocking and is also 2-3 years that can bring incredible advancements to the cancer field. As you now know, new trials and options are regularly being found.
My dad died of pancreatic cancer 6 months after diagnosis. While still a very serious cancer there is an excellent chance he would have lived longer with better quality of life had he been diagnosed more recently.
Keep your attitude of fighting back and you have us all here to support you.