Thanks Dinah for your information. I am wondering if it is sensible for me (despite not having any symptoms)to ask my oncologist to perform bonescan and tests you mentioned. I am lucky to have a very considerate oncologist who always listens to patients' concern. Last time when I told him about blood in the mucus, he immediately arranged a chest X-ray for me and when I talked about thyroid problem, he immediately had a blood test for me. I am on a bi-montly medical check up now and each time I have blood test for tumor marker.I don't know how useful this is to detect cance cells. Would like to hear advice from anyone here.

Dinah, Did you every have a panendoscopy procedure done on you? If so, wouldn't this procedure have cought anything if there was any cancer spread through the aerodigestive system? How are you doing now and what are the doctors doing to treat you with these new tumors? I wish you all the best and hope things get better for you real soon.

HI Donnajean,

When they were trying to determine the cause of the swelling they did (in order)Blood test, ultrasound, CT Scan, MRI, Ct Scan with biopsy (while being scanned they put a big needle into the tumors. (and give you the equivalent of a couple of margaritas to keep you calm.)

Due to the size of the tumors (largest was 3 1/2" - everything is bigger in Texas) the prognosis was not good. Surgery was out since the multiple tumors covered too much of the liver there wouldn't be enough to regenerate.

I am being treated at Cancer Therapy Research Center in San Antonio. (not to be confused with the place that advertises) - Luckily enough they do more clinical trials than any other place in the US. (wish I would have gone there first go around)

They have a clinical trail right now for people with SCC that have had very little or no chemo. I fit since I had no chemo before. So I got in the trial and this week will be my 6th treatment. My treatment is a combo of carbo/taxol and the investigational drug; which are two pills I take daily. All of my scans are of chest, abdomen, and pelvis. As of the last ct scan my tumors have shrunk to 25% of their previous size. Cool huh!!!

In another 3 weeks I will have another ct scan and then we will decide what the future holds.
And yes with the tumors shrinking my stomach now has more room. I've gained 5 pounds!!!

Take care,
Dinah

Alright Dinah!!! Way to go! So happy to hear that the tumors are shrinking....25% is quite a bit, and I'm very glad for you! And the fact that you gained back 5lbs. is great!! Every little pound helps...and when a person has cancer, that's not always an easy thing to accomplish. It sounds like you are getting good care at the place you are going for treatment, and thank God for clinical trials too...they literally can be a lifesaver. May I ask what kind of cancer you have as far as the primary site? Was it diagnosed at a later stage? My husband's doc said he gives him a 40 - 60% chance of recovery from this, or as he put it "middle of the road". He told my husband that there is always a greater risk of recurrent cancer, even if this is treated successfully. It's so overwhelming at times. Anyways- good luck and continued success in your treatment - and let us know your progress, tell me when those tumors have gone down 50% or more!!! Take care.

DonnaJean,

My original diagnosis was SCC of the left tonsil with neck mets. Once I found OCF board I called (after treatment was through) and asked what stage I had. They said 2, but from what I have read they were wrong from the beginning. (when I started with the current docs, needless to say I was a 4)

After radiation, I had both my ENT and my oncologist pat me on the head and tell me I was going to be just fine. (There are more details about my original treatment under the survivor stories.) No one ever mentioned the true statistics to me.

And; I need to clarify my tumor statement (with good news) They had shrunk 50% in 3 weeks. Then they shrunk more the next 3 weeks. That put them at 25% of their original size. Those bad boys are just fading into the sunset. Can't say I'll miss them.

You just keep up being the positive force for your husband that you are. Although it's scary to learn so much, it also makes you the best thing that could happen to him. You know what to expect, and what to ask, and when something just isn't right...

Trust your instincts...
Dinah

Hi Dinah:

Maybe the tumors weren't all bad boys...instead, I like to think you may be just too much woman to handle!

Keep up the good work!

We're pulling for you!

Kim

Dinah - That's great news again! That's amazing and wonderful to hear. You keep up the great work and get some of those pounds back on too, ok?! As those nasty tumors get smaller and smaller - you gotta keep getting stronger to give those bad boys the one-two punch they need!! Take care and keep us posted on more encouraging news.