| 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 | His he swallowing normally some during the day?
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: 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 | Weight gain wont happen for a long time. For example, during my recovery I took in anywhere from 4000-7000 calories daily for several weeks and never gained an ounce. Of course everyone is different. Its very rare that we ever see a patient gain much weight before about one year post rads. The patients body goes thru so much during treatment that it takes an incredible amount of calories to rebuild itself.
Whatever speed your husband tolerates is the right speed. I used a feeding pump that I controlled the speed and had it run overnight while I slept. Just make sure to flush the feeding tube good after every feeding.
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: 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 | I had over 4,000 cal/day for a year with no weight gain. I just did that again the past 16 months with a 10 lb gain.
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: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Yes he's lost more weight than I thought I just hope if we keep the feedings up and the right amount of calories that he won't loose no more that's what I'm hoping Today is a bad day the worst out of all the weeks we have been going trough this he fills week he's really having it hard he don't fill good at all I pray we can get trough this next week I'm not sure he can stand the last week I'm going to ask for hydration like Christina mentioned hoping this will make him fill better And yes David he is still able to swallow he takes some formula and jello by mouth I give what he can't trough the peg he's always got water in hand he uses the water to wash down the jello or pudding I'm not sure why he's doing this I'm guessing the neck is raw from rads .
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Sorry my writing seems rushed I think we're always at rads or I'm home rushing to get done we have two boys one is a teenager and my husband takes care and over sees his first handicap cousin that has now turned to me so I have a lot going on right now just so glad this site is here to help along the way ..
We're in rads Dr. Office as if now next the two hour drive back home I'm blessed to have legs and health to keep up with it all
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | 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 | A Caregiver's job is not to be wished upon anyone. You are our angels and without you we could not focus on our job of fighting this beast with all our might.
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: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | That's very true David I didn't know going into this how hard it was going to be on me as a caregiver it's almost round the clock care and more so with the peg ... I give my all with two kids to care for too sometimes it can be trying but it's all with it ... I have a big heart when it comes to people in general if I see someone sick I want to offer Advise and mostly a helping hand ... But when it comes to a family member or someone close it's sad Hurtful and lots of emotions along with worry and sleepless nights
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
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