I decided to start a new thread since the other one was getting so long. We had an appointment today at UW-Madison, and our fears were confirmed. Ron's cancer is back already (his 2nd salvage surgery was just 8 weeks ago). I knew something was going on because last week was my spring break from work and we went to my sister's in MO. and he slept anywhere from 14-16 hours a day without even realizing he was sleeping that much. He just noticed this new nodule in his right cheek about 10 days ago. The Surgeon did a punch biopsy and sent it to path right away and we heard within the hour that it was positive for malignancy. We won't get the full path report for a couple of days but are assuming it is again SCC.
We were then sent immediately to a Radiation Oncologist there, where he discussed the use of brachytherapy. I was glad to hear that we even had a radiation option left. First we will get another PET/CT to re-stage the cancer. Hopefully, there will be no mets. The RO seemed to think that if this is localized to the right buccal area the brachytherapy should take care of it. He did not think that Chemotherapy would help at all. Do any of you agree with this position? I don't. This is the 3rd occurence of cancer since July of 2008, 4th in total since 2005. I feel like we are running out of options since it is recurring so quickly each time. I want to throw everything we can at it right now. We see our Medical Oncologist tomorrow morning, and I am hoping that he will want to do further chemo. He had discussed using Erbitux this time. What do you think? I don't want to continue to be so passive. I feel like I need to go in and pitch a fit for Ron to have the best chance. Thanks for your opinions, you are all the best judges for treatment to me.
Lori

Lori,

Sorry for the news and you are certainly right in not being passive so lets see what the MO says.

Remember chemo is poison to the body and it's really not credited with being able to rid our bodies of this cancer so they try to weight the risks vs the benefits.

None of this is easy. Even trying to develop a Tx plan for a first timer is not all that cut and dry and often we tell patients to get multiple opinions even at that level. Your husband's case is far from that level but you may still benefit from another set of eyes. Perhaps there is some trial out there that may fit his profile?

Remember, none of us here have that magic bullet and none of us are cancer docs so please listen to what the experts say.

Lori

I wish I did have the answer. I don't even know what to do in my own case, where the ENT surgeon recommends cyber knife the RO says okay with no enthusiasm and the MO says chemo but not the ENT or RO. Why do I tell you this? Just to show that even the professionals don't know once it recurs so I don't think you can really go wrong no matter what you decide here Like you I am leaning towards hitting it with everything and the kitchen sink.
I did have Erbitux the first time around so this time they are thinking carboplatin. Good luck, It's so hard.
Charm

Lori,

So sorry to hear what you are going through. I think we can all agree the doctors can be frustrating sometimes. I think you should do some research on your own and see what other people have done. Which doc do you like the most, which one do you connect with? Tell them what you are thinking and see what they say. They have to understand that hearing 3 different things is hard for the patient. Please let us know how you are doing and I will be thinking of you and Ron.

My thoughts are with you. My daughter had treatment at U of W. also, we ended up at U of Chicago where they Aggressively treated her, finally. However, it was too late.....too much time without prompt agressive care. I know how difficult, painful, heartbreaking and frustrating it is....... Maybe, you would feel better with another opinion at another institution. We even traveled to MD Anderson, Texas. I would not hesitate here in the midwest to encourage treatment at U of Chicago (not U of Ill, U of Chicago Head and Neck Center, Dr. Kerstin Stenson, Dr. Haraf, and I can't remember the oncologist, however the Chief of the Head/Neck Oncology is Nationally recognized. shoot, sorry I can't think of his name, but most patients are seen by his associates and overseen by him as well. My prayers are with you. (My daughter and her husband lived in Rockford area.)

Hey Linda nice to see you.

I have not advice of any use for you - just wanted to know you are in my thoughts and prayers. I watch threads like this very carefully (selfishly - in case it comes back for me - again) - such a learning experience for all of us.

Stay strong - you've been through so much already. You can get through this again.

Donna

Lori

Sorry to hear about the recurrance. Sounds like it was caught very early. Im amazed at how fast you got the results from the biopsy, even if it wasnt the full results. Its nice they gave you the malignancy news so you can start a treatment plan.

I was told that chemo alone wont kill this type of cancer. But in combination with radiation it helps to make the radiation more effective.

Best of luck with everything you both are going thru right now.

Thanks, Cookie. I peek in here often.....
I am so glad that so many of you 'veteran survivors/caregivers' are here for others. They need you......
This site helped Christa(aka Jordan:) and I so much during her disease.
It is wicked, we know. I think of you often.....

Sorry to here that's Ron's cancer is back also Lori. You are a very strong woman and your attitude is helpful to all of us.

Patty

Thank you all...
Ron will start Erbitux on the 23rd. Depending on the result of the PET scan from the 16th he may also get Cisplatin. We were told he would have chemo weekly that could last months, I guess. He is already sleeping so much, I am worried about what the chemo will do to him. I will keep everyone updated on his progress.
Lori

Hi Lori,

I hope everything went ok today for you and Ron. I am thinking about you.

Thanks Suzanne,
His first Erbitux session went very well today. It was long, about 3 hours, but they do it very slowly the first time. The PET scan results were not so good. He doesn't have any distant mets, but the main cancer in the cheek is growing quickly (went from less than 1 cm. on April 9 to 5 cm. today). He also has active areas in the left neck and left trachea. There is a possibility that he may have a brain met. He will have an MRI soon.
We talked briefly about adding Carboplatin and Taxol to further sessions, but the Dr. said that the benefit would probably not outweigh the side effects, and would do more harm than good. So we will stick with palliative Erbitux for now. We also got Fentanyl patches to add to the pain meds. He is just so exhausted all of the time. I just hope he can withstand the treatment.
Will update again soon.
Lori

Lori

Thinking of you and Ron. Ron and I always seem to be in the same spot in the road.

Patty

Hi Lori,

I'm sorry to hear about the PET results. Just take it one day at time and use us here for support whenever you need to. Keep us posted.

Lori- Sending prayers your way for strength and hope.

Sue