New member Husband has stage 4 pyriform sinus ca. in the epic study at U of C-besides Fire 34 are th

Fire34 said:

Erbitux Sudy
Doug
Which arm of the study were you in? I was in Arm B with the twice daily radiation. How did you handle the Erbitux? I looked worse than a teenager LOL. I had the rash on my right side that looked almost like shingles. The doctors to me there at U of C couldn't have been beat, they prescribed an antiiotic ointment for the rash that helped a little.
During induction I had an allergic reaction to one of the chemo drugs and had to spend that week in the hospital. But all went well after that.
My concurrent chemo/radiation was a little bit different, The 5FU side effects that affected my mouth were a little hard to deal with, magic moutwash & diflucan helped there. My third week I lost my voice completely and had to use pen/paper to talk to the nurses. After the second week when I couldn't swallow they had to crush the hydroxyurea and put it in my tube.
I had numerous complications that ended me up inpatient for 3 of the five weeks I should have been home.
I am now 8 months post and still have a little trouble eating, my voice seems to have taken a turn for the worse. I finally gained my appetite back after about the 4th month. Taste & saliva are slowly making a comeback.
I have also had 2 CTs & 1 PET which have been negative
I wish you & your husband the best in recovery and am hopng it is speedier than mine. Best Wishes Dave

Erbitux - duration of treatment?.
Hello there
MY wife had hyperpharingial squamus cc and was operated twice. She has a condition called Fanconi Anemia, which predisposes her to malignanat tumors. F.A. patients have hypersensitivity to Chemo Therapy , which can be lethal and RT is generally considered equally bad.


Because of this she has been given Eerbitux only and she is on her thirteenth week.
(Most on this site have been given a cocktail or combination of CHemo + Erbitux or RT and erbitux, so sometimes i dont know what effects come from what).
The effects for my wie have been very difficult - all the achne form rash effects etc. from scalp-face-chest- arms- and painful cracks and swelling on toes(which makes it difficult to walk sometimes).

Her last PET, was neg, and the Onco recommended continuation of erbitux for another 7 months!
But, her cant really justify to us why for this period of time!! I might be wrong, but my understanding is that noone really knows how long to treat with erbitux and what the effect of stopping its use for a period of time is .

She has gone through a "fortune" of suffering over time (see profile) and though the docs underplay the Erbitux efects (which is really annoying!), my wife has daily burney face, arms and overall sensitivity sensations from it. It drives her nuts and she has decided to stop the erbitux as she feels her quality of life has been severely debilitated.

To this day we havent found a cream to deal adequaltely with the dryness and she has decided against taking antibiotics when there is no infection present.

Im sure that with all the aesthetic difficuties of skin effects, if she were to be without the constant burning she might consider continuing. So the next PET in about two months will be critical.

Fire ,Im glad your results were negative, My wifes voice went form high to low and had its ups and downs and eventually got better.Did u use L glutamine ? (search glutamine posts on this site) for mouth sores etc

Why did you have CT & PET? I thought the PET is more conclusive?

THANKS & I WISH YOU BOTH well
Heartfelt Sincerity
Clear.

Douglas08 said:

Erbitux Study
Dave
My husband was in the outpatient arm which I though was the B group. He had erbitux every week throughout his Rx. His induction in the fall included Taxol and carboplatin. He had a reaction 3 times when getting Taxol. They were able to correct it with meds in chem. It wasn't a true allergic reaction--more a sensitivity to the drug. He was always able to complete his Rx. and go home.
His first cat scan was at the end of Dec. when he completed the induction chem. At this point the ca in his throat was gone!!! So far the best day of my life! The worst day of my life was when he was diagnosed in Oct. The nodes in his neck were reduced.
In Jan he started his 7 weeks of chemradiation. His chem drugs were Cisplatin the first and 3rd week. He had radiation twice a day for the last 2 and a half weeks.Your allergic reaction was more serious if you hsd to be admitted.
The rash was never a real problem. He also looked like a teenager. I had gotten benadryl for the rash but he never took it. The real problem was his neck. The skin was so burned. It bleed and was raw. We used neosporen and then bacitracin. I came up with aRx plan which got his skin back to normal.
Another hugh problem was the mucocitis. It made it difficult to swollow. He refused to have a gastric tube put in afterlosing 20lbs. He also lost his voice--strted to talk again--then lost it again. He talks ok now but will sound a little foggy occasionally.

Thanks for the Reply
Doug
What helped the burns on my neck was aquaphor. My wife then put the aquaphor on and then wrapped it with saran wrap to keep the moisture in. After about a month of that the burns were healed pretty well. While inpatient we used Domoboro soaks that seemed to get the dead skin off.
Did your husband do the swallowing exercises that ENT prescribed? Dr. Macracken was great with all her help for me. My swallow studies were hard with all of the complications. How were your husbands?
Radiology gave me the recipe for the baking soda salt water which helped my mucocitis a lot, too bad they didnt do it while I was inpatient. LOL
How was/is your husbands appettite? Mine was terrible
Are you from Illinois? If so where, I am south of Joliet. Ratface is up in the burbs and Kent is from around the Quad Cities
Best Wishes & Prayers
Dave

Fire34 said:

Not Sure Clear
Clear
I was part of a clinical trial. I do not know whether the trial is timing the scans or not. I had my first CT about 2 months out and the PET 3 months out. It seems like they are timing the CTs every two months, as I have my third in August. I had ten weeks of Erbitux.
Sorry to hear about your wife not tolerating the Erbitux too well. I believe my antibiotic was just neosporyn, which helped minimaly. Mine didnt burn as much as itched. I find it hard to believe that her Docs dont have someting to help her side effects, U of Chicago was great in that aspect.
My skin dryness was from my RT and aquaphor helped a great deal there, just in my neck area of course. Best Wishes & Prayers
Dave

Fire and Douglas
Hi there
Thanks for your posts.

What are treated gloves?

Im gonna go for a long shot.
Fire , do you have a name of anyone who i can possibly contact at U of Chicago?
wishing you both well and everything youd ever want for yourself
i really appreciate you responding to me
Clear