Hi,
I am Don and I am new to these Forums.
I have SCC. Two lymph nodes with SCC were removed from my neck 6/23/08 along with the tonsils (benign). Despite a PET Scan and numerous biopsies, a Primary tumor was not found.

I expect to begin TomoTherapy radiation treatments and Chemotherapy in a week or two.

Due to complications of somewhat diminished renal function the Chemotherapy drug has not yet been selected.

Due to the unknown Primary I am told I will need more areas treated with greater radiation intensity.

I am having difficulty dealing with the PEG - primarily psychological (Borg Implant).

Hi Don:

Welcome to OCF. Sorry that you are here. Feel free to ask questions or to vent. There are so many kind caring people to help you thru this journey.

Im not familiar with a Borg Implant PEG tube, what is that? Are you able to eat at all right now? I have a PEG tube, and hate it more than anything. But I also understand I need it at least for a while til I can eat properly again.

Christine

Don -

I hear you on the PEG tube! I hadn't thought of it as a Borg device, but love that! (Christine, the Borgs were a race of beings in the Star Trek series that 'assimilated' other species and were covered in various implants and devices. They were quite evil.)

My PEG tube site got infected about 5 days after the procedure and was incredibly painful. A course of antibiotics cleared it up, but it was really unpleasant. The site no longer hurts but like you, I just hate that its there. I think I'll appreciate it much more when the time comes that I need it.

I guess my point is, hang in there. In the scheme of this illness, and its treatment, the PEG isn't so bad.

- Margaret

Wow did that one go over my head! I guess you can tell, Im not a big Star Wars fan.

Christine

Star Trek, not Star Wars . . . ;-)

Hi Margaret & Christine
Well it looks like we got past the Borg device
Now if I can just learn to tolerate it before ignoring it ends me up with an infection like Margaret had
Anyway, tomorrow I go to PEG school (aka Borg School) so lets hope I don't flunk out!

I really need help with some of these unpleasantly new acronyms. Like; Tx, Dx, T?N?M? IMRT and I have no idea what stage of cancer I have. The doctors are probably afraid I will even ask

I guess it is time to stop setting meekly in the doctor's chair like a wounded rabbit and start asking some questions.

I was trying to search for other with "Unknown Primary" but not a lot of luck figuring out how to search for compound terms (Unknown Primary = Unknown + Primary??) Instead seemed to get lots of known Primaries and Unknown other thing!

I guess in a few day I will be the "old pro" instead of today's "new guy"

Don

Don:

If you have questions about the PEG just ask. It took me a long time to get adjusted to mine. Finally the third formula I was given I could tolerate. Also there are 3 different feeding methods. Ask if you can get the feeding pump. I use it overnight, its very easy. It runs by itself and is slower than the other methods, so its easier to tolerate.


If you are still able to eat. Do it now, eat everything!!!!! Dont be concerned about gaining weight or calories, just eat. Do try for nutritious foods, not just a few bags of chips.
After you start treatments it could be a long time before food tastes like it should again.


Under FAQ there is a post of abbreviations that you will find helpful. Im not the best with them either. Dx is diagnosis, TX is treatment, IRMT is radiation, and the T?N??? is something with staging. If you have had a PET scan then your doc should be able to tell you the stage. The lower the number, the better.

Keep asking questions on here, you will get lots of help.

Good luck at 'school' tomorrow.


Christine

Don,

Definitely ask questions! Bring a note pad and write down the answers. If you can, bring someone with you and have them write things down too. Two sets of ears are almost always better than one. Also, don't hesitate to call the doctors when new questions come up.

As someone with pet rabbits, and a former rabbit rescuer, I can say without hesitation that wounded rabbits don't always do so well

- Margaret

Don,

I was almost a Unknown Primary (UP since you like initials) but they were able to find my primary at my BOT and I assume they checked there for yours? I have one comment on the statement made by your RO re treating more areas w/ greater intensity and that is most of us receive the maximum amount of rad they think they can give us during our treatment, primary found or not, so you may want to ask what exactly that statement means.

Tell me more about you. Did tobacco play a role on your cancer? Where are you being treated? Age?

I had mets to 2 nodes and I was told that because of that I was automatically a Stage IV.

As others have said eat like there's no tomorrow because before long nothing will taste remotely good and then you may also have swallowing problems. Avoid using the Peg until you absolutely need it. Keep swallowing throughout the entire Tx. Keep hydrated and get the recommended calories EACH AND EVERY DAY. Do not miss a water or food feeding or it will come back to haunt you.

Ask any question you may have. remember there are no dumb questions....

You are very fortunate (other than the cancer of course) to have hooked up with this site as it will prove to be the most valuable non medical "member" of your cancer eliminating team.

Hi Don,

I would like to confirm the advice you have been given by the others. I am 3 1/2 weeks into my treatment and am now at a stage where I am very restricted with what I am able to eat and drink - and only half of my mouth and neck is being radiated. I also have weekly chemo (Cisplatin)which I am told amplifies the effects of radiation. I have to say that my whole mouth and throat has been affected, not just the areas getting direct radiation.

Eat all your favorites while you can. I have not lost too much weight - only a couple of pounds - but that has been through perseverence and sheer hard work. I don't have a PEG or a gastric tube and am determined to get through this without a 'borg' - if I can do that without effecting my overall health.

I too don't know what stage I'm at. I have had two primaries = both determined to be Stage 1 (T1N0M0) - but then a lymph node popped up six months after the second primary, with extracapsular spread. I then had a neck dissection, followed 5 weeks later by treatment. I did ask the question but got a fairly non-commital answer from both my RO (radiation oncologist) and my ENT. I think I'm probably Stage 3 but could be a 4. It doesn't really matter at this point. My focus is to get an outcome like David's!

In 12 month's time I hope to be posting that I am 'Cancer Free' and fit and healthy! That's my goal!

Good luck Don! And don't forget to eat and drink whatever takes your fancy while you can!!

Best Wishes

Sue