New Path report--, my cancer is back again, at Primary site.

Hello Curt, Stephanie, Suez39, and All.

How I wish I had good news from today in seeing my Medical Oncologist in clinic, but I do not..

She told me that the Radiation Re treatment will give me just a few weeks more, at most I might have a few months. I'm Stage IV terminal now.

Since last week, I have completely lost my ability to Speak, and my swallow is gone. When I try to swallow, the liquid comes pouring out of my nose. They have told me to Stop swallowing and instead to tube everything which I started doing days before, over the weekend. I knew instinctively what I had to do.

My surgeon told my Medical Oncologist this morning that this New Primary cancer is much too large and extensive for any surgery. It begins in my Soft Palate ( involves that whole structure) and goes down the side of my throat to include the epiglottis, hypopharynx, and upper voice box, right now. Its why cannot produce Speech now.

My weight today clothed was 68.5 pounds. At home, I'm 66- 67 .

She said, again, No to Immunotherapy. She said the Risk of Death to me, from the treatment is much too high. Also, my Lymphocyte counts are so Low, that its highly unlikely to even work ( AND, she said its effective in only about 40% of HNSCC patients. I already knew that fact)

She was emotional several times and apologized, saying she wished she had something to offer which could halt the progression

Keep in mind, I have no way to Speak right now and as always No One went with me, for this planning appointment.

Anyway its time for me to begin getting my affairs in order, soon.

Here's a big question though which I may need to put as a separate post::: Does anyone have any experience with ERBITUX? Its used in Colon cancer and in HNSCC as well.

It has some nasty side effects. She offered it to me today, and if I give the go ahead, I would start next week with the loading dose infusion in the hospital.

Again, she said #1. If I tolerate it #2if it even works against this aggressive cancer that it Might give me " a few more weeks". Maybe.

Well, question is do I want to spend my last Weeks, Months, in treatments Sick, just as my Randal did before he died..??

I just don't know.

Sorry to lay this on you guys, but having tis cancer combined with my Primary ( genetic) immunodeficiency, is a recipe to allow my invasive SCC to go where utwsnts, do what it wants and my immune system completely ignores it. There isn't enough immune system to take care of my Infections ( right now, Lungs and sinuses ) much less of cancer.

Crystal

Wow, I can say I'm really moved, and grateful for the genuine concern and caring . and u know its because every one of you has also been through this cancer at least once, and some multiple times like me. That's where the real bonding takes place. It comes from knowing that you, and you and you, have all been there and walked this road, to some degree.

Yes, too bad we all can't get together for a Pajama Party !! At least we can think about it. Plan it?? Assign what everybody will bring ?

Okay, so today I was in the Cancer center hospital All Day, just for my usual once every 28 days, infusion of Immunoglobulin. The brand they give me is called Private and its made by CS Behring.

I had to give this News, in written form ( because I have no distinguishable speech)--- and because this is my 30th YEAR at this hospital ( in November)-- lots of people know me and the word spread like wildfire.

Everyone wanted to help in some way, including my nurse John, who jumped up every time I went to the restroom, to help get that huge heavy pole over the threshhhold, instead of me pulling the pole over onto me.... This was an infusion suite with 4 patient recliners and a shared bethroom. I guess this room was older, because none of the newer rooms even have a threshold .

To compare, my 2 Poles at home are set to my height ( I'm 4'10") and mine are very lightweight. I can lift and carry mine. Not the huge heavy poles and pumps in the hospital. ( inbOctober, I had 3 pumps on one pole, Andi could barely roll that big contraption!!)

Anyway, I had to get a ride today because I am too weak to drive. Then I had to get a Volunteer, who knows me, to carry my too heavy pink & black duffel bag, on the long walk from main hospital to Cancer Center hospital.

My nurse said my Lungs sound very " Junky". Full of " junk", phlegm, infection and fluid...etc. My regular breathing is Noisy and readily heard. My oxygen saturation varies, and the nurses would Stanly there watching my numbers!

We already know that the Carbon Dioxide in my blood is very high.

Well, my admitting doctor today ordered a chest x ray but it was never communicated to me clearly when im to get it?

If its as bad as they think, then that will throw off my treatment schedule next week.

Its late, and I'm tired so I need to get to bed... But again last night, I got maybe 3- 4 hours of sleep because I'm awake coughing and coughing and struggle to breathe, through the tumor now in my throat and all the secretions its creating. Its truly awful. Can get scary too, trying to get my breath.

And I cannot get anything up!! I used to expel it but now there so much swelling in there, or filling up, that its not functioning the way it should. I can barely even Gargle. But I keep trying.

I So want to sleep tonight, hoping I don't cough and struggle all night yet again.

Hey, is there a difference in a Slumber Party, and a Pajama Party ?! Let me know !

Meanwhile, I'm going upstairs to see if I can drift off to drreamland, peacefully hopefully .

Thank you, everyone for the wonderful loving thoughts. It really means a lot !

Crystal