Hello,

It wasn't too long ago where I my family felt we had won the battle. My mom was diagnosed in August 2008 and underwent mandible reconstruction. We were worry free for a while. Earlier this year she had an enormous growth in her neck area that was also removed. Yesterday, I found out that the cacner has spread to lungs and lower spine. Will have an appointment with the doctors soon. Thoughts on how to handle this?

Hello Nick,

I'm sorry to hear about the new cancer. Has it been diagnosed as recurrence since you mention spreading? Cancer treatment option are influenced by prior cancer diagnosis and treatment.

Since you have already been through one of the common treatment plans - surgery/chemo/rads, you know much about the processes which will guide you along.

Having two sets of ears helps during all medical meetings and keep good notes and write questions down to ask.

If you can post more specifics of the diagnosis that would help get more specific replies.

Don

I would be asking if they're cetain it's oral cancer related. If it's not then oerhaps there is another chemo that this type of cancer reacts to. Rads to the neck area depending on location can also help. (She can be reradiated) but I would also want to know for sure that this is definitely OC related - dr.s automatically concluded it is but that's not always the case. A friends husband had HPV related BOT cancer. They treated it, they found a nodule in his lung... Assumed it was SCC spread only to find out it was early stage lung cancer (small cell) he was treated for lung cancer and is is now NED.
Also there is a place in California that does tumor testing to see the best chemo to treat this with. Hugs.

here's the update on where it has spread. My mom is now considered terminally ill:
-15 mm lymph node
-2.3 cm posterior left upper lobe (left lung) which is adjacent to two smaller nodes measuring 7 mm
-Focal lystic lesion in the L2 vertebral body

We have two option with treatment:
option 1: doing a three combination therapy involving f5-u and cetuximab, pros: this therapy has a better result, cons: there is no alternative therapy

option 2: doing a two combination therapy and if it fails doing cetuximab, pros: there is a second option if first therapy fails, cons: lower results than the first option

Please advise for those who are familiar because I don't know.

I don't know if it would help, my husband who is in a similar situation with mets to the lungs is receiving taxol and carboplatin. The side effects seem to be less severe than when he had cisplatin. He has diarrhea for a few days (takes Imodium to help with that), joint pains for a couple of days (takes Tylenol) and that is about it. We are waiting for the CT to find out if it has worked.

Let me know if I should ask for more information in reagrds to the two options. thanks and please help as I have no idea as of yet

I would ask if there are clinical trials that your mom can participate in at some point, perhaps not now but when and if she runs out of options.

[quote=Cheryld]I would be asking if they're cetain it's oral cancer related. If it's not then oerhaps there is another chemo that this type of cancer reacts to. Rads to the neck area depending on location can also help. (She can be reradiated) but I would also want to know for sure that this is definitely OC related - dr.s automatically concluded it is but that's not always the case. A friends husband had HPV related BOT cancer. They treated it, they found a nodule in his lung... Assumed it was SCC spread only to find out it was early stage lung cancer (small cell) he was treated for lung cancer and is is now NED.
Also there is a place in California that does tumor testing to see the best chemo to treat this with. Hugs. [/quote]

hey thanks. Do you know the place in CA? Also, wouldn't it depend on the chemo she has had in the past?

No it depends if on what works against the tumors she has presently - look up cocopops posts she mentioned the name of the center.

Can't find anything for cocopops using the search tool

Nick, its actually Caco. Here is her profile where you can view her posts....


Caco's profile

Sorry about the misdirection

[quote=donfoo]Hello Nick,

I'm sorry to hear about the new cancer. Has it been diagnosed as recurrence since you mention spreading? Cancer treatment option are influenced by prior cancer diagnosis and treatment.

Since you have already been through one of the common treatment plans - surgery/chemo/rads, you know much about the processes which will guide you along.

Having two sets of ears helps during all medical meetings and keep good notes and write questions down to ask.

If you can post more specifics of the diagnosis that would help get more specific replies.

Don [/quote]

Test is on Tuesday to determine whether it is OC related or a new lung cancer. Mom has been feeling a lot of side effects from the cancer in the lung and yesterday it was determined that this cancer has grown. If this cancer is lung is not OC related (which we are praying for), we will have more treatment options.

Yup..
Lung cancer actually responds remarkably well to chemo.

Unfortunately it is not lung cancer...Chemo has not been effective either

I am so sorry to hear this Nick. Are you able to get another opinion. Try another type of chemo?
Thinking of you and your Mum.
Tammy

Sorry to hear the news, Nick_V. I hope the medical team finds some options for your mother.

Sorry to hear this, Nick. Is there any possibility of joining a drug trial where you are?

I was going to suggest the same thing, a potential trial drug? See what is available at your cancer center. It's not news you wanted to hear, and sadly scary as hell (been there with my mom - who did have lung cancer) but please try to stay positive - see if they are willing to send her tissue out for matching, I have mentioned it before they have a place in california where they compare her cancer to different chemos to see what works against her/his specific cancer. Hugs and stay strong.

[quote=Cheryld]I was going to suggest the same thing, a potential trial drug? See what is available at your cancer center. It's not news you wanted to hear, and sadly scary as hell (been there with my mom - who did have lung cancer) but please try to stay positive - see if they are willing to send her tissue out for matching, I have mentioned it before they have a place in california where they compare her cancer to different chemos to see what works against her/his specific cancer. Hugs and stay strong. [/quote]

What is a trial drug?

I went through some of Caco's posts but found nothing on a place that does this in CA. Tried Google as well.

A drug trial is a clinical trial where patients are given new not-yet-approved for general release drugs. The intention is to study the toxicity, or the appropriate dosage, or the drug's effect compared to drugs which are already approved for you. I would think the first person to talk to is your mother's medical oncologist. My husband was in an immunotherapy trial for three months. It didn't help him but some other patients in the trial saw some reduction in tumour size or their tumour stopped growing. It is a way of buying time.

You can search for clinical trials, both U.S. and international, at clinicaltrials.gov. You can narrow the results by disease, location, age, gender and other criteria.

Hi there - with regards to CA - I'm listed on facebook friend me coco pop's daughter is my friend she can give you some information on CA. Hugs...