Hi all -

After the little peg-falling-out excitement Thursday we are pretty much plugging along. Barry has 7 more radiation treatments (and one chemo) and two other folks here are at same stage so they all felt pretty happy yesterday -- TGIF and light at the end of the tunnel! All three look pretty good externally (skin etc.) which is a credit to the nurses who are at the patients about using the creams and they are all talking and walking but of course getting pretty fatigued and ready to be finished!

The Ethyol make Barry nauseous again yesterday despite trying Anzemet so he will not do it again next (his last) Friday. In fact, he has just 3 more amiphostine treatments as we are running out of Zofran and don't want to buy any more if we can help it! (Expensive!!) I think by the end he will have done 22 or 23 treatments which is apparently some sort of record at Hopkins but I think Nelie did the same #.

Barry's throat (soft palate and uvula area) are pretty darned sore and red, no open ulcers but painful to swallow food or liquids (hence he takes pain-killers or a numbing swish before eating) but doesn't hurt just sitting around. The thrush is still there as white patches which come off on a q-tip, in fact, the infection is in one of its "waxing" modes do he has to step up nystatin rinses this weekend. The front of his oral cavity looks amzingly good, actually a fairly sharp demarkation from the back (which reflects the tomo plan we saw) but it is a bit puffy. Mouth saliva amount OK, but definitely thicker -- still clear however. He has some phelgm in throat and (he thinks) chest, which looks like the stuff you cough up when you are recovering from a chest cold -- but using the guafenisen syrup at night and also, sleeping with 3 pillows and humidifier have made this more of an annoyance than a serious issue. Food-wise he is pretty much restricted to juice, smoothies, soups with soft ingredients, eggs, noodles, mashed potatoes, jello and puddings, ice cream, etc. -- I have been eating a lot of the same and admittedly am a bit sick of it so am sure he is as well! (Too guilty to sit down and eat a steak or chop in front of him!). He's lost maybe 11-12 pounds (all of which was weight he gained post-dx) and I have lost 5-6, the only positive thing from all of this. The peg stoma is already closed up and I assume eventually will fade away.

We have an appointment with Dr. Maura Gillison (assume it's OK to mention her name, Brian has posted often that she's the human papilloma virus/cancer expert at Hopkins and is on OCF board) next week to discuss Barry's participation in her current HPV trial and also, future research (which might involve trialing a vaccine) -- will let everyone know if any of this sounds feasible and what long-term implications might be.

Friday Barry told our radiation nurse (whom we are very fond of) -- "no reflection on you, Marian, but I will be very good to see the back of this place!"

Amen!

Gail