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

Douglas08
Posts: 18
Joined: Jul 2010

My husband was diagnoised with advanced pyriform/hypopharangeal HNSCC with mets to the lymph nodes. He's a T4N3MO. The epic study is being conducted to test the efficacy of erbitux with other chemo drugs. He started with chemotherapy in the fall of 09 and started chemoradiation in Jan. He completed his RX in Feb. He had 2 Cat Scans and 1 Pet Scan with no sign of recurrance. After a few bumps in the road he's doing and has done very well. It's so comforting to hear how many peole are doing well and surviving Ca. Are there other people who have been in the first or second epic erbitux study as well as FIRE 34. I would be interested in your progress and experiences. It's so great how all those envolved in this difficult journey are willing to share their experiences and give aid,comfort, and hope to others.

Doug

Fire34
Posts: 352
Joined: Feb 2010

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

Clearblue
Posts: 188
Joined: Apr 2010

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.

Fire34
Posts: 352
Joined: Feb 2010

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

Douglas08
Posts: 18
Joined: Jul 2010

Clear and Dave,
I ranout of space? when responding to Dave. Clear my husband also used aquaphor for the dryness and cracking skin on hands and feet. I also found treated gloves at Kohls which he would wear to bed after putting on aquaphor. Same co also maked treated booties. I also happen to see them at TJMAX. You might want to try benadryl for the rash.
Clear it sounds as though you are faced with a massive challenge. Hopefully you'll come up with aplan which will work for you. you are part of a hugh group of people all of whom are pulling for you with their thoughs and prayers.
Dave I guess I got too wordy in my response. I don't know why I ran out of space. You are the first person I responded to. I can totally relate to your expeiences and wish you had an easier time of it. I feel you and my husband were in the right place at the right time undergoing the right RX. I do have more questions.
Best regards and mant prayers.
Doug

Clearblue
Posts: 188
Joined: Apr 2010

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

Douglas08
Posts: 18
Joined: Jul 2010

Clearblue
The gloves I refer to come with lotion in the gloves. They may not be available now because most people have difficulty with dryness in the winter. The gloves are washable and come in different colors. My husband would liberally apply the aquaphor and wear the gloves during the night.
However, I hunted everywhere for white cotton gloves after the ones my brother-in -law who is a retired fireman gave us wore out and after I bought the Kohls gloves I discovered that the dollar store had them for a dollar apair.
Also for open cracks on his fingers we used liquid bandage. Cracks healed and dryness disappeared.Also I got generic benadryl at walmart for the erbitux rash and was able to return it after several month since he never used it.
Good luck with your decision-my heart goes out to you.

Best Regards and Prayers.

Douglas08
Posts: 18
Joined: Jul 2010

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.

Fire34
Posts: 352
Joined: Feb 2010

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

Douglas08
Posts: 18
Joined: Jul 2010

Dave
We are in the La Grange area. Recieved your message. I replied in the affirmative but I keep getting a red message saying the receipiant doesn't exist??!! Obviously you do. I don't know what I'm doing wrong.I'll keep trying.
My husband did not do the swollowing therapy. He did not want to deal with another group of people. He's doing well with the swolling. Not perfect but eating all solids and getting down about 3000 calories a day. The mucocitis is gone.
Like you his neck was healed after about a month. Very clever of your wife with the saran wrap. We put ointment on and left it unbandaged during the day. At night we soaked with saline solution to clean it and then I put ointment on teflon bandages and wrapped his neck with gause to protect his neck during the night.
Appettite good now but it was really tough during radiation thearpy for him to eat.
I'm also having trouble logging on with my password. But I keep trying and finally get on.
Doug

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