| Joined: Jul 2012 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 28 | I'm just a normaly "quite" person to begin with. My wife could talk the ears off an elephant. My reluctance to comunicate with her is the result of experience. She tends to over analyse the smallest of details. On here I can turn the computer off if I don't like the way the conversations going. At home I'm stuck with it.....lol.
I feel ya Eric on the legality of comfort in a bad situation such as cancer treatment. For now though I can't risk my income. My wife got terminated a week before the baby was born from a company she had been with for 12 years. She can't draw unemployment until the doc's release her and from what I am hearing on here, I should prepare for at least 6wks of leave from my work. I have short term disability but its only 60% of my regular pay. We are soon to be facing serious financial difficuties. The least of my concerns right now but a real concern non the less.
Age 35, Former smoker/drinker HPV+ Ear Ache 5/12 GP for ear ache 6/18 ENT for ear ache 7/12 CT shows cancer 7/12 Biopsy 8/12 diagnosed SCC Base of tongue right side Barely crossed midline Nodes involved PEG 9/12 35 IMRT start Sept 6th Cisplastin x3 1 down 2 to go
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Not to be a downer, but Kevin was off work 6 months and that was pretty fast from what our Drs told us. I guess it depends on what you do though. He works on the Artic Slope in Alaska 3 weeks at a time, so he had to have some stamina before he could go back. I know there are others that have worked through some of tx and gone back shortly after because they had a position that allowed for that. Don't forget to have the social worker at your cc help you apply for ss disability. It won't start for 6 months, but if you're approved you have that to fall back on. We were approved 1 month from applying. I really think it is because it went to them from the Cancer Center. We did it online but she put her name in as the person doing it for Kevin and then she mailed all the records for us too. I know others who have to fight like crazy or just don't get it. Just something to think about. It's worth asking about. Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | Hi there.. I second that - I was off for 6 mos as well, though I felt ready to go back about 2-3 mos out but I had it easy treatment wise. I had pretty much the same treatment as everyone else, surgery (I'm non HPV), chemo (3 large doses) and rads 33 - but I just seemed to tolerate it better than some - I think there a whole lot of factors as to why - physiology, diet, overall health etc... So it would plan for a potential 6 mos, To answer one of your first questions, HPV + cancer seems to respond better I believe because it's the result of a virus... Someone will correct me if I am wrong. Also quitting smoking and drinking is your best chance - there was a study on the survival rate of people who continued to smoke during and after treatment - and it was poor- walking during treatment - and quitting smoking will help - there a long explanation as to why but I'll skip it. cigarettes are a poison bottom line and alcohol is an irritant. I still have trouble with fruit juice (burns like crazy!) I can't imagine trying a beer, wine or liquor. I sincerely hope you don't have anything serious... 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
| | | | Joined: Jul 2012 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 28 | I am having the biopsy Friday. Any idea how long it would be before I get the results? Its going to be horrible waiting all weekend but I don't see them getting them to me Friday. Monday? Tuesday?
I have seen on here to expect 1 month recovery for every week of treatment. I have short and long term disability where I work. Would this prevent me from SSI.
I was hoping to never have to use them. I know the short term is 12 weeks but I have not discussed long term with my emplyer yet.
With my wife unemployeed I need to work as much as possible. I have a job where I could be put on light duty for as long as needed and I'm fortunate to have a friend close by I could ride with if driving was a problem.
Getting pretty scared. The pain is still stealing my focus right now.
Age 35, Former smoker/drinker HPV+ Ear Ache 5/12 GP for ear ache 6/18 ENT for ear ache 7/12 CT shows cancer 7/12 Biopsy 8/12 diagnosed SCC Base of tongue right side Barely crossed midline Nodes involved PEG 9/12 35 IMRT start Sept 6th Cisplastin x3 1 down 2 to go
| | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | Good luck with your biopsy on Friday! I know the waiting is such a hard part, even a few days feels like forever. In my experiences with my mom's biopsies, they told her she would hear from them within 3-5 business days. Unfortunately anything from Wednesday onward doesn't usually come back until the following week. Some take longer than others, but most of my mom's were back on the shorter end so hopefully you won't have to wait too long. Try to keep yourself occupied with things that make you feel good, I know it is going to be difficult but you don't have much of a choice but to wait so may as well do something good for yourself. If the weather is good, maybe take a walk in a park or nature center, have a picnic with your friends or family... I find reading is also a good way to keep my mind occupied.
I can't give any advice on the disability insurance unfortunately, but I'm sure there are a lot of people here that can.
Hang in there, and let us know how everything goes! Come back as often as you can/need. We will all be thinking of you and your family as you make your way through this journey. Hoping everything comes back ok!
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | 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 | Results will take a week to come back. Try to stay busy to keep your mind off worrying.
You will learn that with cancer, every person is different. Everyone responds in their own way to treatments, medications, etc. Some of us have worked right thru radiation while others have been home from work before we even started. Some people have surgery and will miss 2 weeks of work while others need 3 months or even more for extensive surgeries. You may be fine with having 12 weeks off from work. Try not to get ahead of yourself with this, take it one step at a time and when you get your results back and have a treatment plan in place then its time to plan for taking time off from work. You are young and should have an easier time of it than someone say in their 60s.
Right now, make the most of every single day. Eat like crazy, go out and have fun with your family. You do not even know if you have anything serious yet so dont let cancer win by keeping you down. Take some pain meds and think positive. If anyone asks what they can do to help you write their name and number down in a book and tell them you will let them know when the time comes. If that time does come and you need a hand dont be afraid to call every single person who offered to help.
Hoping its not cancer! Good luck!!! 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 | First off it's not cancer until a path report says so, so try and keep that in perspective. I was told my biopsy would be rushed and it still took me almost 2 weeks to get a call back. Let's hope yours will be less.
BTW what is being sampled?
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: Jul 2012 Posts: 28 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2012 Posts: 28 | At this point all I know is lesions at the base of my tongue.
Hoping for the best, preparing for the worst.
I guess posting on here makes me feel at least like i'm trying to be proactive. I've kept my spirits up until today. The ear pain is turning into an all day everyday headache. Hard to be cheery with that much pain going on.
I'm ready for whatever if it is going to relieve the pain.
Age 35, Former smoker/drinker HPV+ Ear Ache 5/12 GP for ear ache 6/18 ENT for ear ache 7/12 CT shows cancer 7/12 Biopsy 8/12 diagnosed SCC Base of tongue right side Barely crossed midline Nodes involved PEG 9/12 35 IMRT start Sept 6th Cisplastin x3 1 down 2 to go
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | That's why we're here. We all need that boost now and then. We really do get it!! Let us know how it goes!! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | After my FNA came back positive for SCC Moffitt still wanted to find my Primary so they put me under and told me they were going to bio my BOT and probably take my tonsils but they said they were determined to find my Primary. Here's the point of this post...they told me that they would look at my bio while I was still under to determine if it was cancer. I don't know how they could do that but that's what they told me going into the surgery room. As it turned out they found my Primary at my BOT and stopped before taking my tonsils. Ask if they can get premliminary results while you are under?
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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