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Joined: Oct 2011
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samkl Offline OP
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I've been lurking for a few weeks and thought it was time to introduce myself. This forum is a wonderful source of information and support and I'm glad I happened upon it.

As you can see from my signature, my brother has recently been diagnosed withh tonsil cancer, and although I am not his carer (we're on opposite sides of Oz) I speak to him several times a day and am one of his main support people.

He has chosen not to research too closely his diagnosis, and is very anxious, not least because he is father to 4 small children. I will encourage him to join the forum as well.

Last edited by samkl; 10-03-2011 05:16 AM. Reason: Adding information to signature

Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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So he is finished with Rad and chemo except Erbitux which we usually don't see post Tx with an HPV+ Dx. Hope everything went as well as could be expected and tell him that his recovery can be lenghtly so to be patient.


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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Hi there!!! Dave I think he's still doing the rads it looks like sept - nov - which puts him near week 3. Tell your brother to hang in there it gets worse but it does get better!! See if he van join there are a lot of HPV+ survivors here - it might ease his mind! Good luck. And hope he's eating enough ( even if it's liquid nutrition) and drinkin enough - it really helps with healing. 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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samkl Offline OP
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Thanks David and Cheryl. I am strongly encouraging him to join the forum. I know how helpful it has been for me over the last few weeks.

Cheryl is right, David. I outlined his treatment plan, but he is only at the beginning of week 3. He had the Erbitux with the 2nd lot of chemo. It was the first of 6 lots of Erbitux, which will continue fortnightly until 28/10.



Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Welcome, Samki! Im happy you have found OCF to help your brother. There are several members from Australia. Never know, he could have a very knowledgeable OCF member in his area. We will help your brother get thru this! I hope to see him as a member soon. It is a rough disease to battle but it can be done! I hope he has a good support system where he is and that he forces himself to get extra calories and hydration every single day. That will make a difference in how he feels. est wishes to your brother with his treatments!


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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Hi Sam,
Welcome to the OCF forum from another Aussie who is also in NSW. I saw you register and was wondering when you might post. I am so sorry to hear about your brother especially with 4 young children. In which state does your brother live? We have people here from all over Australia.
My treatment was very different to his however there are so many knowledgably people here who will be familiar with his situation and able to help with your queries.
It appears you are off to a flying start already with your research and questions in your posts that I have read so far.
It is understandable that your brother is anxious and with time he may be more inclined to join when he realises what invaluable information there is to be found here.
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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samkl Offline OP
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Hello Gabriele,

My brother is in Perth and I am on the Central Coast of NSW, but I have spent 3 weeks with him and his family returning home 6 weeks ago. Another sister is in Perth now for 3-4 weeks helping out.

What was your treatment, Gabe? From your signature you seem to have had a very torrid time. I hope you are well at the moment.

I wonder if anyone on the forum is from Perth?



Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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I have answered some of your questions especially about location and Perth with a PM wink
As for me, yes it was a torrid time however I am doing really well with only a few minor issues.
Last month I passed and celebrated my 5 year anniversary (I use my main surgery date).
I am hoping that you, your brother and family will celebrate the same milestone and beyond.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: May 2010
Posts: 638
klo Offline
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Hi Samkl

Sorry to chime in so late, have been off the boards for a few weeks and only just seen your post.

Alex and I are in Sydney (friends of Gabe) and may be able to help as Alex possibly had a similar type of diagnosis and treatment. Your signature suggests that your brother had 2 or 3 different types of chemo in 3 cycles,3 weeks apart (more or less - looks like the Erbitux was done on different days to the other 2 chemos) before starting daily radiation (exc weekends) plus Erbitux once a week. Is this correct? Sorry if someone else has clarified this elsewhere as i have not read all of your posts.

Alex and I are probably in a good position to help you with questions if what I have interpreted above is correct. Alex underwent a similar therapy although our chemo drugs were different. By the way, Erbitux is not strictly chemo but I call it that as the results are the same and the differentiation makes no difference to those of us undergoing treatment and suffering the effects.

Have a look at my signature below, think about what we can do to help and if you would prefer to talk, just send me a private message and I will respond with my phone number.

Best of luck to you and your brother.

Karen
PS Alex and I are 14 months beyond last treatment, and over 18 months beyond start of treatment with no evidence of disease (NED)at last check up in Aug


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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samkl Offline OP
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Hi Karen, I've sent you a private message. As soon as I work out how to check for new posts (as opposed to PMs) I should be able to manage my OCC life a bit more efficiently. At the moment I'm going through all my posts to check if I have new responses!! I'm also finding it a challenge checking back on who I've "spoken" to. I'm thrilled that Alex is clear. How wonderful for you and may you have many many wonderful times together. If I could work out to put one of those little icons in at this point I'd give you two thumbs up !! It's kind of you to continue posting and responding.
Cheers,
Linda


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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