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CherylR Offline OP
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H given loading dose of Erbitux on Wednesday - by Thursday or Friday it looked like he had reaction to the tape used to hold the filter in place. Tried some calidryl on those spots - nothing. Tried some Benadryl ointment thinking it may be a reaction to the tape. Now H's arm has slight rash from wrist to elbow - light pink. Nothing to panic about. Anyone have early reaction to Erbitux - I'm having a hard time believing this is the tape now. Also having "windburn" feeling across nose and cheeks. Hasn't been outside so that's not possible. Normal, abnormal? Worry, don't worry? We'll see docs late tomorrow afternoon but wondering if this is the norm. Thanks.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Hi Cheryl,

I had a reaction to the Erbitux pretty quickly too - mostly dry, irritated skin around my mouth after just a few days. The good news is, this means the stuff is working. (Or at least that's my understanding of it.) Couldn't tell you if this is 'normal' but its not unheard of.

- Margaret


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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CherylR Offline OP
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Thanks Margaret - Always makes one feel better to know they aren't the only one crazy


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Hi Cheryl, I'm in a trial with several men. It was my understanding that most of the men broke out in the "acne-like" rash right away. I was feeling pretty darn smug about it not happening to me. Then it hit me at the worse possible time. The rash came after my last of the 35 radiation tx when I was severely burned. I was a real mess. I oozed for weeks. So much for Karma and being smug, eh? Anyway, this side effect is so common, I think it's rarer not to break out. Just my opinion. Best of luck to you both, Carol


DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
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Cheryl

I had the rash on my face from the first treatment and always had more after each treatment. My Oncologist also said that the people with more rash seem to have more success with the treatment. I vote for as much success as we can get. smile

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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CherylR Offline OP
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so...off we go to the hospital today...stopped in chemo first to check on the rash as now it doesn't look like just where the tape was for filter. Now it's from wrist to elbow and hot. And today the "normal" rash started on face and neck. Seems the arm looks like cellulitis and the rest is just normal rash so H has a week of Cipro and balance of Erbitux he takes doxycycline 2 x daily. Also had first RT today...he hasn't made friends with the mask yet. H is still debating on asking for something to lessen anxiety or seeing if this just kinda grows on him. He says there's a red light of some kind on the ceiling so he looks at it and sings Highway to Hell in his head..........so much for visualization....


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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I got the ctscan results today for Jim. Some nodules have increased slightly, but no new masses, thank god.....But, there is a new mild left hilar lymphadenopathy with lymph notes measuring 1cm.. I suppose I should google this, but I'm so stressed right now that I don't need another thing to worry about. I didn't mention anything to him yet. No use having both of us worrying. I'll tell him before our next drs. appointment. As I said before, I always ask for a typed copy of the report before we go to the doctor as I would rather digest everything before we go . Oh, one more thing naturally. We own a beautiful secluded cabin which sits on the Allegheny River and every bit of construction was built by Jim. We find out that the pipes froze and we had water damage all over the place--and he is unable to attend to anything (so sad)...he spent most of his days there after retiring. Sorry for all the chirping, but you folks seem to be my dearest friends. Love to all. Claudia


Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
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Claudia

The scan was good news that there arent any new masses. Sorry to hear the scans werent clear and had some small increases. Very sad news about the cabin your husband built. Such a shame when something happens like that. It sounds like its a beautiful place to go for relaxation. Its been so cold this winter alot of people are dealing with frozen pipes. Hope you can get someone to fix it for you.

Im on my second round of frozen pipes myself this winter. The heating registers have frozen, at least they are plastic so they wont burst. Just an inconvenience having no heat upstairs.

Hang in there, we are here for you. Caregivers are very special people who have a very difficult job.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Cheryl,

Don't they play music in there for him. I was allowed (encouraged) to bring my own CD's and I wanted it played as loud as they could stand it. I immersed myself in loud music which really took my mind to different places and memories.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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CherylR Offline OP
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Hmmm...hadn't thought of that but will grab a cd before we leave today and ask about it. Thanks for the tip! The tooth fairy (after full extractions done) brought him a Zen so he has 4 gb of music or pics/videos he can plug into while in chemo. That has helped some and of course there's a tv but he's more into the music anyhow and can fade in and out since they give him Benadryl with the chemo.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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