| | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Love that calculator Gary. We need to it put on the freqently aksed questions board. I just calculated mine and it came out to 1460 calories a day which is about what I took in during radiation. I only lost 4 or 5 lbs. If I had ever tried to consume David's 3000 calories, I would have gained a ton. The most my RO wanted in me was 1800.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Jan 2006 Posts: 43 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 43 | I know that for me that this was something i had to constantly fight against. I would feel good and then go and do something and then pay for it for a few days. Try not to push yourself too hard in the first little while, pace yourself and your stamina will grow.
Erik
Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sandy, even mashed potatoes with lots of milk and butter in them are like rough sand on my tongue and in my mouth. Tis is after 2 years so as you can see,by the other posts, we are all different.A drink with every bite helps. I keep milk beside me and a bottle of water when I eat.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jul 2009 Posts: 4 Member | | Member
Joined: Jul 2009 Posts: 4 | I'm 10 weeks post treatment. Radiation and chemo. Am using tube during day, saving throat and mouth to eat late afternoons and dinner. Throat so painful I literally have sweat beading on my forehead when I eat. Also, get white boil like thing that shows up sometimes after five bites of food on the side of jaw behind molars next to tongue. Have almost no saliva. If not talking or moving about I can keep my mouth moist, but never enough to swallow, so have to sip water and use sprays constantly.
Have a lot of fatigue. Winded if I climb a flight of stairs and I have to hold onto something because I get light headed.
This is my first post. It's nice seeing that it's normal for recovery to take a long time, but it also sucks to see that. During treatment, I thought 3-4 weeks post-treatment I would be eating like normal.
Feb. 09. SCC Left tonsil and lymph nodes Stage IV.
HPV 16+. No Surgery.
Cisplaten 6, Rad. 35
6/24/09 PET-Negative
Finally eating all my food, 2/2010.
PEG tube removed 6/2011
| | | | | 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 | Frank, welcome to OCF. Im glad you found us to help you and at the same time Im sorry you are here due to having OC. Im sure you will be able to help others with your experiences.
It can take several months to recover to the point where you feel 'ok'. After about a year to 1 1/2 yrs is where most people say they are pretty much back to normal. Everyone is different and still can experience improvements up to 2 years post tx.
Everything you mentioned is completely normal to go thru. Your body was beat up pretty badly and needs time to heal. Keep up your hydration and nutrition just like hwile going thru tx.
When you want to post, please start a new one so we can better address your concerns. Sometimes when you add on to someone's post it doesnt get the attention it deserves.
Best of luck with your continued recovery.
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 | Frank,
I was just like you except I didn't have the lingering pain issues to deal with and I never had a Peg. I kept a bottle of water in every room of the house I normally visited each day just so I didn't have to carry one with me. I always had at least one in my car and after leaving so many behind in stores, I started carrying back ups in the car because even if I was only a mile from home I would need to take a sip. I also was weak for a long time post Tx. I did try riding my bike in my 4th month post Tx and by then the weakness was better but the dry mouth was still a burden.
Yes the recovery can be long, slow on results and drawn way out but you will improve. My first year recovery was not as noticeable as my 2nd year.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2008 Posts: 16 Member | | Member
Joined: Aug 2008 Posts: 16 | Charm: Thanks so much for the suggestion of starting a new thread. I've had a hard time figuring out how to use this site.
Is there any way to transfer what I've written or do I just have to write it again? Had my Pet and the cancer is back so I have a biopsy when my doctor gets back in town on 7/28. Watch for my new thread! (When I read the directions about the threads I understood them to be very anxious for one to use existing ones.) Nancy
Nancy F 66 Tongue cancer T4 N1 M0 Completed 2 3 week sessions of chemo. Shrunk tumor 40%. Then Cisplatin only, 2 weeks on and 1 week off during 7 weeks of radiation.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | The "People In Red" can do that but other than copying and posting each post into a new post, I don't know of a way.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Frank, welcome to our lil home. Sorry to have you here but this is the place when you need one. You willlearn as time goes on that every once in awhile, you will get knocked backward from this stuff and have to repeat a few of the steps to get moving forward again.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | John just completed his radiation treatments 7/14. I know he was hoping to start feeling better within a few days but reading here, that's not likely. I/we just got news yesterday that a house I'd put an offer on 4 1/2 months ago was finally accepted and now escrow can be opened. We are hardly even excited b/c 1) it took so long that we soured a bit on it and 2) it's not great timing b/c of his tx/recovery. He was so sure that we could be packed and out in no time (he's very efficient that way) but that was before rad tx started and wiped him out w/the constant nausea, fatigue, pain. Looks like it'll take a while to start feeling better, let alone being able to deal w/a move. WFC, hope you're feeling better soon!
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
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