Wow, she looks great!

thank you. she was very weak eyed this evening. they almost looked foggy. and shes developed a cough. im trying to be optimistic but in my heart i feel its not right. im still going to exhaust every avenue before this damn thing is over

Emily, you remind me of my daughter. She is 27 and just getting started in her adult life. I remember when I was in the heat of my 3 surgery's to remove the primary tumor and even though I couldn't and didn't feel like company or visiting she would come at least once or twice a week and just sit with me... She didn't expect anything, she just wanted to be with me and it meant so much to me to have her with me. Your mom is so lucky to have you there for her. At the time, I couldn't figure why she wanted to come and I almost felt like I had to entertain her or talk, but she just sat and held my hand and we would just watch tv or she would clean up a little for me. But what a blessing. So I just want to thank you for being there for your mom. And to let you know how much it means to her.

Lucky for us, I just live one town over. Her house is only 20 minutes away. I teach Kindergarten at a charter school and we are out on our summer break (6 weeks). Needless to say, I plan to be here at her house for a while. My husband is so good to us - hes been here right along with me, making the extra commute to work..going to Dr. appointments with us. She told me last night as I lay in her bed with her to go back home this weekend..that I needed to feel some normalcy. But to me, this is my 'norm' now. I couldnt imagine being at home - Id only be thinking of her anyway and worrying how she is doing.
At the same time it is bittersweet because I feel like I can see every little change in her. Sometimes I think it's better and sometimes it's something getting worse. It's maddening

Hi emily
I was intrigued by the diagnosis of dermal metasteses so i did some research and came up with this article.it would seem as though the prognosis may be poor,but there are some options.
[quote] In most cases, cutaneous involvement is the result of a direct extension of extranodal carcinoma into the dermis and the dermal lymphatics. This is not an uncommon finding in patients who do not respond to comprehensive treatments. However, metastases to the skin from a primary tumor in the visceral upper aerodigestive tract are quite rare, occurring in fewer than 2% of all visceral carcinomas. The scalp is the most common site of metastasis, but because examination of the scalp can be difficult, many of these lesions are diagnosed late. They usually present as multiple, firm, painless nodules. The presence of dermal metastases signals a poor prognosis because the lymphatic distribution in the skin is poorly understood. Wide local excision is often combined with adjuvant radiotherapy (i.e., external-beam or implant therapy) in an effort to eradicate tumor spread or palliate symptoms.

Suggested reading

Marioni G, Doro D, Marino F, et al. Skin and eye: Uncommon sites of distant metastasis from tongue base squamous cell carcinoma. Acta Otolaryngol 2003;123:1110-

O'Donnell M, Whitaker D. Clinical evaluation of tumors of the skin. In: Thawley SE, Panje WR, Batsakis JG, Lindberg RD, eds. Comprehensive Management of Head and Neck Tumors. Vol. 2. Philadelphia: W.B. Saunders, 1999:1222-43.

From the Head and Neck Cancer Center, Cedars-Sinai Medical Center, Los Angeles, and the Department of Otolaryngology, Charles R. Drew University of Medicine and Science, Los Angeles [/quote]

yes i know what it is. he made sure to clarify by telling us to set up hospice asap. i guess we're just hoping by seeing a different doctor this week we'll get some more hopeful news

the dr at duke told us he could do surgery but theres only have a 20% survival rate - assuming she really does have dermal metastases. our thoughts were, "AND?!" if there is an option for surgery to remove this we are gonna take it. someone has had to of survived for there to be the 20%

Hi Emily,

Try to be positive, I've had 3 seperate OC cancers (5 if you count my lymph nodes seperately) and last time around I was initially told my bilateral lymph node tumours (6 in total) were inoperable. After going to the tumour board they decided that a combination of surgery (to reduce the size of the tumours together with radiation & chemo to both sides of my neck may offer me a slim chance - about 10%). Because they re-radiated areas that had already received maximum greys they were reluctant to do this and I had to sign numerous disclaimers.

While I have some significant side effects I have beaten the odds so far. I was told without treatment I would not have seen last Christmas! Although I am going through some tough personal times I am grateful for every extra day!

If she has a 20% chance go for it! I am proof that the odds can be beaten!

Wishing you and your Mom all the best!

Sue

sue, thank you so much for sharing that. we needed to hear something like that his morning. we have an appointment in a couple of hours to see what her dr thinks. i hope he doesnt give up on us

Anxious to hear from you re this am appt. You are in my thoughts and prayers.

Hi Dodie! We actually had a somewhat positive appointment this morning - I guess as positive as can be. Needless to say her Dr couldnt believe the manner in which we were treated at Duke. He absolutely didnt believe it was dermal mastatases. He says the tumor is in the right mandible and jaw line..same place it always seems to come back at. He said this surgery will cause her face to be very disfigured - practically losing half of her beautiful face. We are prepared for that. I just want her to live.
He felt confident in doing the procedure himself but was totally onboard for us going to Houston and he set us up with all of our records and faxed everything over.

He also sent us to an oncologist that we LOVED. She finally got on the pain patch (only 25 mcg right now so its not doing much) morphine and something for the shooting pain in her nerves - I cant remember the name of it. As of now none of it seems to be working although she went from 9am to 4pm with NO PAIN MEDICINE. Shes exhausted and cant go to sleep. Hopefully the stuff will kick in soon.

Anyway I am much more hopeful today and excited about going to Houston. Thank you for thinking of us!!