| | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | OP  "OCF Down Under" Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 60 | I know there are a lot of things associated with oral cancer that cause fear and I hate to add one but feel people should be aware of the risk of anaphylaxis (severe allergic response) and cetuximab ( Erbitux). Up until now I have not posted of my husband's oral cancer recurrence and his grim prognosis. Because the cancer had spread to his pulmonary lymphatics, the only course of treatment was chemo for symptom control. The triple cocktail of cisplatin, 5FU and cetuximab was to be used. He was to receive standard antihistamines prior to his infusion. Yesterday during his first infusion ever of cetuximab he experienced a severe allergic reaction which closed his airway and led to cardiac arrest. It all happened very quickly. He was able to be intubated but only with great difficulty. Given the amount of time he was without circulation, at our request the tube was removed and he died this morning. A quick internet search reveals that allergic reactions are a well known side effect. Epidemiological data also point to a higher incidence in certain parts of the US and may be related to a history of tick bites. Though in Australia, my husband worked in the bush and regularly came home with tick bites. A cruel twist to cruel treatment for a cruel disease. I have been blindsided and feel totally unprepared.
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 188 Likes: 4 | I am so sorry for your loss. I do not think words can ease the pain. Having been on Erbitux that is a potential side effect.
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | I am so sorry for your loss, I know that these words are meaningless to you at this point but I wanted to say them anyway. This is the most horrific thing that I have seen so far, I usually share things with my husband about what I encounter here on the site. But If I told him this story he would stop me from starting a new chemo med that was prescibled to me today. I thank you for the courage to post this, I always here tell of the chance of severe allergic reactions but now I see they are very downplayed.
This is a travesty. I am so sorry, Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Laura,you must be so shocked and reeling from this. It is just awful.
Unfortunately I do recall another member of this site who reported the same thing happening to her husband. I think she posted as Johnswife.
I am so sorry that this has happened to you too. There is nothing I can say to comfort you, but please know that you and your family are in my thoughts and prayers.
Take care,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im so very sorry! This must have been a terrible shock to you losing your husband so quickly. I know words are of little comfort right now. Keeping you in my thoughts and prayers.
PS...I also remember the same incident happening to another member.
ChristineSCC 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  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | So so sorry but I'm glad you are able to share this with us.
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.
| | | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | I am so very sorry to hear this. It must be really horrible. Keeping you in my thoughts.
36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm very sorry for your loss.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | I am soooo sorry to hear this. I know it's tragic, and want to thank you all the more for the warning. Maybe I can share something that may be of small comfort to you.
My mom was a good person to many. Her friends looked a lot like refugees from the very hardest of life's difficulties. Most of them were infirm or had something that severely impeded their lives. As amazing and big hearted as she was she wasn't without her vices - she was a heavy smoker, former drinker (though by the time she passed she hadn't drank in 25 years) and she was a big caffeine addict. My mom was diagnosed at 56 with terminal lung cancer. She went through treatment and we had three great years with her before she passed at 59 (a month shy of her 60th birthday) A few months before she died we were told the radiation they had given her as preventative a few years earlier, hadn't worked and she had 6 tumors in her brain - of various sizes - the biggest being the size of an egg. It looked like it was going to be a long horrible and painful death facing her. (I lived through my friend passing last year at the age of 48 - from peritoneal cancer - its a special kind of horror to say the least) Less than a month after getting this news, my mom had a bowel perforation - her intestine was blocked and it had burst. She became septic and passed peacefully within the week. As painful as it was to lose her, I was also grateful she passed so quickly and relatively painlessly. She was a good person and didn't deserve to die a slow and painful death. I am not a super religious person, but I do believe in god and have found comfort in the belief that he took her home to him before she really had to suffer. Hugs
Last edited by Cheryld; 10-22-2013 08:04 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Thank you for sharing during this time of grief. It is just so sad and sudden and shocking. First the recurrence and then the fatal reaction to the chemo. Please know you are in my thoughts and prayers. don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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