| | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Nov 2012 Posts: 58 | There are only 3 RT's remaining and we will be so happy.
I know that many people on this board emphasize nutrition (good for them!).
My husband lost more than the 10% the Oncologists recommend. We were told today that his recovery will be much longer because he lost too much weight. The fatigue will last longer and the recovery time from the RT will also be longer.
Thank you for this board and the supporters.
Stacey (Caregiver to Husband)
Lymph Node Removed 10/12
Dx SCC MET 10/12
No Primary Tumor Found
IMRT x 33 (Started RT late 11/12)
CT Scan and PET Scan Clear 4/13
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Best of luck with the rest of the treatments, and recovery phase.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 |
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: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Stacey - make sure that you keep the nutritions no matter what it takes as the 2 weeks POST-tx are the most difficult.
If you haven't already got a PEG or nasal gasteric tube, do it now as it will ensure that your husband is able to get his nutritions without the pain from swollowing food.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | 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 | Hang in there Stacey!
Im sure you are doing your very best with this horrible situation. Im so glad that your husband has continued to get treated and will be finishing very soon. No doubt my mind that months, maybe years down the road Mr Stubborn will look back at this and say to himself "I should have....." or "I wish I had.... ".
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: Oct 2012 Posts: 1,275 Likes: 8 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 8 | Almost there! You have worked so hard to get him through TX, give yourself a pat on the back!
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: 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 | Stacey,
Congrats on almost being thru BUT don't listen to the docs re a very long and hard recover as if he is the only one. Geeezzz everyone, regardless of weight loss (which BTW almost everyone does) has a long and hard recovery. Two years is the norm with the first year being understandibly the worse so just prepare him (and you) for his body and mind taking the next 2 years to find his new normal. I was weak as a kitten for the first few months PT and then winter came and by spring I was back to riding my bike with the big boys and with my weight loss was actually faster and a better climber. Unfortunately I conbtinued to "recover" and "age" so my new found speed slid back by the next biking season.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Stacey
What DavidCPA said is so true. Recovery is long and hard regardless. I'm always amazed how oncologists ignore body mass index but then they are just parroting something they have been told rather than recounting any valid studies. Actually the one clinical study I could find did not support the theory that weight loss alone mattered, rather it was reduced food intake after the TX was over. It was for pancreatic cancer however not oral cancer. Many patients are much more than 10% overweight going into TX. If his doctors were right then everybody who goes on a weight loss program is wrong. Of course many doctors are overweight themselves so they are biased. I lost a lot more weight than your husband and I bounced back pretty fast the first time. Just saying.
We can't change the past, so focus on getting your husband the best and most calories and food going forward. That has been shown to be the real factor in recovery, not some old doctors' tales based on arbitrary weight loss percentages. If you can get your husband to eat and exercise, those will determine how fast he recovers. Glad for you that this is almost over
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Good advice here, Stacey. We all lose weight. I was 188 when I started and about 157 at the end of RT. Push the fluids and the calories, whether it's soft foods or liquid nutrition by mouth or some kind of tube.
It's gonna be tough for awhile - how long is unique to each of us but David CPA and I had similar courses - but you'll get him through it.
Courage.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Stacy
You mentioned:
"My husband lost more than the 10% the Oncologists recommend. We were told today that his recovery will be much longer because he lost too much weight. The fatigue will last longer and the recovery time from the RT will also be longer."
That's not very helpful, is it! My husband also lost more than 10%, but was back to a week after TX ended, and back to riding his horse about a five weeks after that. It took at least a year to get all his stamina back to par, but the combination of good nutrition/hydration, gradually increasing activity level, and good rest to recover from the activity all helped him come back quickly (in grand scheme of things).
As it turned out, getting enough rest was the hardest for him - between dry mouth and coughing, and frustration at being in bed longer than he though he should, the first few weeks were rough. He initiated the activity, but I had to remind (nag) him to go to bed earlier and rest, and even nap on the weekends.
Best wishes!
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | |
| Forums23 Topics18,252 Posts197,147 Members13,335 | | Most Online1,788
Jan 23rd, 2025 | | |
|
