MD Anderson and squamous cell carcinoma

Metastic SSC Unknown Primary
Hi Jan,

I am a 30 y.o. female and was diagnosed with Metastic SCC Unkown Primary (stage 4) just before Christmas 2009. Originally my doc thought I had head/neck cancer since we first found lumps in my neck. However, additional scans showed that it was also in my chest/underarm and abdomen areas. Since it is spread below the clavical, they no longer can make the head/neck diagnosis without knowing the primary.

We wasted no time for treatment and I have already had 3 rounds of chemo (cocktail of cisplatin, taxotere, and 5-FU) and have my 4th round coming in 2 days. I have new PET/CT scans tomorrow and we are hoping for some good news. I am not going to MD Anderson, but am at Northwestern Memorial Hospital in Chicago. I will let you know what we find in the coming days if you are interested. I too have thought of going to MD Anderson, but as of now we are awaiting the results from the scans.

Good luck!

Angie

wmjnt said:

Hi Angie,
We sure hope you
Hi Angie,

We sure hope you received good news from your scans. We are hoping for positive indications of tumor shrinkage for you. Is there any plan for radition? Are you having many side-effects from the chemo cocktail? Gosh, you are so young. We pray you will get better soon. This is such a mysterious disease and it seems little is known about it when it is not in the head and neck region.

Do you have any history of skin cancer? Bill had a small skin cancer removed from his back about seven years ago and some of his docs are now thinking there could be a connection between that and the SCC. The pathology and clincal notes for the skin cancer excision have been requested from the dermatolgist that removed it.

Bill just had his third weekly treatment of Taxol and will have a week off coming up before starting the next round. The problem is that it seems the cancer is advancing through the chemo and he may now actually have a new tumor in the radiation field. He won't have another Pet scan until the first week in April. Things are not going well just now. He had to have a blood transfusion Monday and has fallen several times. He is so weak that we had to tell them we would have to put the trip to Houston on hold for now.

Please let us know how you are doing. We wish you all the best.

Jan

Lil update
Hi Jan,

I apologize I haven't had a chance to get back to you. This past round of chemo really knocked me out. My scans came back with as good as we could have hoped for at this point. The PET scans showed that there was "no activity" and the CT scans showed that there were still a few enlarged lymph nodes (2 in abdomen and 1 in neck), but that they were much smaller than the previous scan. So, it seems as if many of the lymph nodes in my neck, chest and abdomen are either gone or small enough that they are undetectable. We are very happy with the news, but know we still have quite the road ahead.

At this point, my doctor has planned that I will have 2 additional rounds of chemo (total of 6) since the chemo has shown to be working well, have additional scans and go from there. He has talked of possible radiation (hard to say though since they still don't know the exact type of cancer I have) or a possibility of going on some drug (can't remember the name, but more of a preventative to keep the cancer away). I would have to go into the office once a week to get the drug indefinitely. Still so much up in the air with me though. My doctor apparently sent out one of my tumors to a place in CA that helps find primary tumors and helps with a diagnosis. I should find out what their report finds hopefully soon.

As far as my side effects go, I've been extremely tired, nauseous (but controlable with the meds) and have gotten terrible mucositis 2 of the rounds. It's not fun, but once I'm able to get through the first 8 days from treatment I'm usually pretty good until the next round.

I hope that things are looking better for Bill since it sounds like he is having a difficult time. Please keep me updated. I will be better at responding Not sure if I mentioned this earlier, but I have 2 young children (9 months and 4.5 years) so often they keep me busy and away from the computer until the late hours.

I wish you and Bill the best.

Angie