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nicki74 Offline OP
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hello the nightmare of this vicious disease has returned, although did it really every leave? ENT and pathologist confirmed on thursday that dad's cancer is back.. they said we can give him next week off and bring him back in the following week to speak with the medical oncologist and surgeon.. surgeon did say that the only thing that can be offered is the Erbitux, of course it wont cure it but can make a difference in size of tumor and give dad some more time and less pain.. any thoughts would be greatly appreciated.. God Bless
Nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Nicki, I was afraid of this! I just had a bad feeling from everything you have written about your father. I am very sorry! Please take him to a cancer center for a second opinion. It could make all the difference!

((((HUGS))) and prayers to you and your father.


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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Agreed please get a second opinion... Hugs!


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
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nicki74 Offline OP
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hello christine and cheryl.. do you really think we should get a 2nd opinion? he has been in bed for about 2months, and pretty much only gets up when he has to and to use the washroom.. i plan on calling his medical oncologist on tuesday after the holiday.. the biopsy results from other areas of concern are not back yet either.. i just feel bad tugging him around from place to place.. and with him completing the chemo/radiation pretty much just one year ago, and the salvage surgery in december, how much more could they do, and could he take?.. im torn :-(..
thank you both again..
nicki :-(


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Was he originally seen at a cancer center? If not take him there for a second opinion. There is always quality of life to consider. I agree - but cancer centers are used to dealing with tricky and aggressive cancers. Do hear what the surgeons have to say. Did they tell you it's in his lungs? Are they sure it's back - even without the biopsy results? Where is it? There are a few questions to be answered if you and he decide to just do the Erbitux as palliative then that's fine - it's a hard personal choice to make but just make sure you have all the information first. Hugs to you and your dad!!


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
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Nicki, if there is a chance your father will recover then take him to a top notch cancer center for a whole team to evaluate him. That might be his only chance to beat this. It cant hurt by getting a second opinion. It is probably the hardest decision you and your family will ever have to make.





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
Joined: Nov 2010
Posts: 128
nicki74 Offline OP
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hello, dad's cancer is back on the left side of what is left of his tongue.. he also has perinual invasion which i think makes it a double whammy! we went ahead and decided to do the chemo, which he will start on Wed., as anyother person he will respond or he will not, if he does they will come up with a "protocol" does that make sense? i feel my dad is strong enough to keep on trucking and do what he needs to do, but I do not feel in my heart trucking him around to a different team of doctors would be beneficial.. am i wrong for this? :-(.. you are absolutely right this is the hardest decision we have ever dealth with.. i want him here with us always, but i cannot stand to see him struggling like this.. we just increased his patch to 75, and now he is taking less norco, which is good.. so i can only hope and pray to that powerful man above that he does respond to this chemo, and worse case scenario just "live with cancer"... thank you all you so much for being here for me and living as heros for others..
xoxo nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Nicki, you are in such a difficult situation. I understand what you are going thru. Of course you only want the best possible outcome for your father. You are a great asset to him and a wonderful advocate. Keep up the good work. If it were me, I would go to another cancer center and hear what they can do for him. It doesnt hurt to try and if they cant do anything differently with different results then you will know. Good luck!!!!


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
Joined: Nov 2010
Posts: 128
nicki74 Offline OP
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thank you Christine.. he starts chemo this wednesday, i would really hate to push it back any, because of how aggressive this cancer is with the nerve invasion, that part scares me.. eeek.. i wonder if it is possible to get him in for an appt while doing the Erbitux? ugh not sure.. im going to call now.. thank you again!
nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Good luck sorry to hear it's back... Do try for a second opinion. Hugs and I'll say a prayer foe you and your dad!


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
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nicki74 Offline OP
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hello, well we did decide to go ahead with the Erbitux.. first treatment was friday.. took him for that, then to eyedoctor, which is also at the same facility.. very long day for dad.. get to my parent's house after a 9hour day.. let our dog out, she barks once and collapsed! stroke.. 11 years old, best dog in the world! she ran around every day with a stick or ball like she was a puppy.. she's gone now.. i cannot believe this! my poor dad doesnt even know what's going on.. what's next.. i cant take much more.. horrible..


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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My wife and I have 2 3 yr old dogs, 7 cats (8 to 20 yrs old) and Marvin the bunny. I can't imagine what we will do when one of the dogs die. My heart goes out to everyone that loved that dog.


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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Nicki, Im so sorry about losing your dog! Pets are such a comfort and huge part of the family.


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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Posts: 531
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Awww so sorry bout your pup. That's weird how that happens. My brother had a Golden Retriever and he was bout 10 or so, night before they went on vacation, they let Jake out around 11pm and called him to come in, nothing, they called again, pulled on his runner and felt it was tight but he didn't come. He had died just like that too. I had to put down my 16 yr old mini pin a week before Ron's 2nd surgery last month the 25th. So I know how you feel.


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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nicki74 Offline OP
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Thank you both :-(.. she was a huge part of the family.. i just dont understand much of anything lately.. i just think about my poor mother, the dog that consoled her at night and layed by her feet is just one day gone.. thanks for listening.. dad has been in bed since first round of Erbitux, but he actually got up today and walked around which never ever happens!
God Bless you all..
nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Time for a new puppy!! There are so many sad pups needing good forever homes I hope your parents feel up to it. That's what I always did when I lost a pet, I'd give myself a couple months or so and start looking at Petfinder.com to see what pups were looking for a good home. I got my cockatiel from that website from a rescue here in my area. Nothing like a new dog to brighten up your day with new antics!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
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Yep pleanty of rescue dogs out there in need a love. All of our cats and dogs and even Marvin were throw aways.


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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I have been involved with Rescue of Mini Schnauzers for 10 years. If I can assist in any way PM me and I will give you my phone. Once you go Schnauzers you never go back smile But if you are going through a rescue group of any type we all seem to work more or less then same way and knowing what to expect will make it easy.


55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
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nicki74 Offline OP
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aww thank you all so much.. as of right now, my mom can't bring in a new pup.. poor dad said he did see the dog the other day, i am assuming it was a dream.. i still cannot believe it myself.. my sister has worked at the Animal Welfare League for about 15 years, that's where we got little Gizmo :-(, my dog and my cat, so i am sure she will be on the lookout.. haha.. but with my dad going tthrough treatments now again, and my mom as his caregiver, she probably isnt ready for a dog just yet, BUT eventually she will.. i will keep all these websites fresh in my mind though.. i know those pooor babies need homes.. ugh i cannot even watch the commercials! haha.. thank you all again for your support... this week will be round 2 of Erbitux for dad, he seems to be hanging in there.. still in bed, but still here.. so i pray that he responds well..
God Bless
Nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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I'm so sorry to hear about your dog. It is never easy to lose a beloved pet. Glad to hear your father is tolerating the Erbitux well. I hope you and your mother are doing well, too.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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nicki74 Offline OP
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hello, 2nd dose of Erbitux for dad today.. he seemed to have a bit more energy today.. still very long days for him..he has been talking about the dog we just lost quite a bit.. saying that he hears her and sees her.. ugh so sad.. has anyone heard about people hallicinating on Erbitux.. and he is still on fentanyl and norco.. thanks so much!
nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Nicki - I don't know about hallicinating on Erbitux, but I have heard of people seeing/hearing their passed on pets. So maybe your Dad really is seeing and hearing her and she's just trying to comfort your Dad. You could ask the doctor about the Erbitux in case it's important that he know about what seems to be hallucinations, but if seeing the dog is helping your Dad to cope, then maybe that's a good thing.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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It could also be the pain meds causing him issues... Good luck with treatments glad your dad is feeling better - hugs and prayers to you!


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
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My husband had hallucinations while on Erbitux but he is off that now and they are continuing so I don't think they were entirely due to Erbitux but that is when his started.


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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nicki74 Offline OP
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thank you all for your responses.. i think the dog is comforting my dad.. maybe this is my dad's way of processing it, the shock of it all.. so hard to tell.. the dog was a huge part of our family, she was almost like a person..haha.. well she thought she was.. lol.. i am deefinitely going to ask the doctor on Monday.. thank you all again..


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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Nicki, pallative treatment with Erbitux is probably because he has already been treated with Cisplatin for his concurrent chemo-radiotherapy. Recurrent cancer becomes immune/resistant to Cisplatin.

Your dad's onco might be looking at controlling the disease progression wth Erbitux, if your father responds well - which I am hopeful. The treatment may be followed up with Total glossectomy and re-radiation (to take care of PNI).


Father; 67 yrs; RIP: 2012/05/26

TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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Wow thanks Eshwar! yes, that is exactly what they are doing.. We just had his first visit after only 2 treatments and oncologist is very pleased with his response so far.. dad has been in bed for the last 4 monhs and the last week he has been up a lot more.. I am not looking for a miracle, just some comfort for dad and a better quality of life.. he is a trooper and he will do what he has to do even though he is probably exhausted, mentally and physically..

Thank you all again for your continuing support and words of encouragement and knowledge..

xoxo
nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
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So glad your dad is responding!!!:) take care!


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
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Glad to here the treatment is helping - best wishes for some really good days together.


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Hi guys! yes, i am so happy he is responding too, he is writing his notes that he wants to be back on his bike (motorcycle).. haha God Bless him! its great to see him up and about after 4 months! he doesnt even remember the last 4 months.. he wants me to put more minutes back on his phone so he can txtd again.. makes me happy for him.. thank you all again.

nicki


Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux..
Painfree and rested 6/19/12
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