| | 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 | He is just plain asking for this cancer to come back if he continues to smoke. In my 8 years on this site I don't remember one patient that lived when they did not stop smoking.
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: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Apr 2014 Posts: 40 | Thanks for being so blunt David and yes, he was made aware of it by oncologist and surgeon. But what can you do?
If this wasn't a wake up call than I don't know what is.
I used to get worked up, stressed out and angry about it but for my own sake had to accept it and try not to think about it.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear
| | | | | 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 | Heike, you are doing a wonderful job.
Really hope the next weeks of recovery go smoothly.
Being the Caregiver is the most difficult Job. Simon is so lucky to have you.
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | It's a tough place to be, Heike, and no matter what anyone says, some people decide the stress of quitting is more than they believe they can handle. Just know, no matter what, you can't be their behavior police. Try to not let it bother you too much. You have enough things on your plate that you can direct the outcome. Keep focused on what you can do, not what you can't do.
Your husband is very fortunate to have you by his side during this journey.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Apr 2014 Posts: 40 | Thank you Tammy and Uptown.
Yes, very true to focus only on things that one can do and can change. It's frustrating though to see someone not taking care of themselves.
Never thought how much impact cancer diagnosis and treatment has on caregivers and family. Well one day at a time. First week in 3 months without any appointments. Yeah. Better make the most of it.
Thanks again. I wouldn't have been able to care for Simon in the way I do hadn't it been for the members on this board.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I check now and again to see if you have updated as I read all your posts.
There is nothing I can add that has not already been said. However your comment below reminded me that I had read here once that if one person in the family has cancer everyone has it!
[quote=Heike]
Never thought how much impact cancer diagnosis and treatment has on caregivers and family. [/quote]
Best wishes to your family and to you with your tough job as caregiver.
Beste Gr��e 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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey there - congrats on getting through it you've done wonderfully. You do the best with what you have - 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
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Good to know that you have made it through treatment; wishing you smooth sailing from now on.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Heike - Glad to hear that your husband and you made it through treatment. Hope improvements keep coming your way for both of you. You have been such an awesome caregiver!
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.)
| | | | | Joined: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Apr 2014 Posts: 40 | Hallo Gabriele, Thank you for your lovely lines. Being German and reading just a few words in German brings some joy.  Having to learn all these medical terms in English was a challenge. Yes, it's so true cancer has impacted on all of us. The kids had their friends over for a long time. It's nice to have some 'life' back in the house. Hope you are doing ok. Alles Gute Heike
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear
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