Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Feb 2008
Posts: 341
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
Ok - I'll try to make this concise because I know I have a tendancy to go long. Dan is over-weight by about 50+ pounds. He has been struggling for a while to improve that number and we had started eating more healthy and he has started exercising. Since the cancer dx and surgeries that has pretty much gone out the window and he took to heart the "bulking up" advice and ate like a fiend. He has been pretty fatigued, but the exercise has continued - just not as intense. This Tuesday as I told you guys in another thread - he lost 5 pounds at his weekly check-up. I know this is because eating is now a chore and he is only eating because he knows he has too so no more extra portions, snacks, etc. And of course because his body is now working so hard. Today I tried to convince him to try one of the Boost Plus or Ensure Plus drinks I have in the fridge. I asked him to use them to supplement his diet with extra calories betweeen meals. He said no. I said why and he said because I want to lose weight. He doesn't think the 5 pounds is a big deal at all and is not worried. I know my husband and took the approach that typically works best with him. Calm - so I went through the whole spiel - reminded of all the doctors have said, what I have read, what you guys have said, etc. the gist of it being this is going to get worse still and you don't need to be flippant about the weight and this is NOT the time to be concerned about a diet - right now we need to be concerned about cancer butt kicking. I also told him that his symptoms will get worse and his hearing could take longer if he doesn't take in enough calories for energy.

The help I need from you guys is reference info or links or actual legitmate data / studies that talk about this and show that what he is doing is detrimental to his health. The antedoctal convversations don't seem to be working. I've searched around for several hours, but I am struggling. I think I just can't get the right keyword combination because everything I try just brings up all the stuff about what you need to do, not what happens when you lose weight.

I love him, but this is when I want to beat the hell out of him!! blush

Thanks in advance for the help.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Tell him he doesn't have to try - he WILL lose weight. If he loses too much then it can slow the healing process considerably. He really doesn't want to extend his suffering does he!?!?!


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
I can tell him first hand what happens. In one week I lost 17 pounds from nasuea, diariha (bad spelling), and fatigue. I basically got up took a shower went to radiation, went home and back to bed. Since I was without a caregiver, Im lucky to be here at all. I ended up in the hospital for a week. This was at about my 6th week of treatment. Again, at 2 weeks after treatments ended from nasuea I ended up in the hopsital this time for 5 days. My mindset was similar to your husbands, (it wont hurt me to lose a couple pounds), boy was I wrong. Luckily I had some weight to lose, but not so rapidly as it made me feel so much worse. Im 6 months out and still dont eat properly, so still I struggle with keeping weight on. This is something your husband needs to not worry about, he needs to get as many calories as possible for his strength.


Christine
SCC 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 smile
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Tell him to just listen to what we say because we have been there and frankly he has no idea what he's up against. I tried to do the daily calorie thing but like many I couldn't keep up when the tough period came and I lost 30% of my body weight and I was at my ideal weight when Tx started.

It most likely will get much worse than it is now and believe me he will loose weight and it just doesn't stop when the rad is completed. It took me well over a year to start gaining weight back.


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 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jul 2007
Posts: 939
Michelle,

Perhaps some of our posters (Brian, Gary, Marcus, others??) can chime in with more technical info regarding the importance of nutrition or the negatives when it is not optimal during treatment. If not, you just may have to "beat the hell out of him!" mad

Bill had at least 40 pounds to give as well and he lost that even with me feeding him religiously 6 times a day thru his PEG.
His most significant loss was post treatment. The weight loss will happen without any work on Dan's part.

Sorry he is being so "muley headed" as my grandmother would say. I was so thankful for Bill's sweet and compliant
nature when he was sick...thanks for reminding me.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
I have nothing technical to tell him, but I lost50 lbs and was doing my best to eat,Man, get some food into you and try some of the Carnation VHC, it's loaded with calories and is the only thing keeping me moving. Give your wife a break , she has enough to worry about. Hell Man, I wish I had one worrying about me and my health.


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: Feb 2008
Posts: 341
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
Thank you guys very much and Jim thank you for putting it in perspective!! Today is our long day with chemo and radiation and I play to have a serious talk with him as I'm sure the docs, nurses and dietician will do as well!!!!!!

I printed these post out so I will be sure to have my "ammo" with me when we talk wink


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
Not to "one up" anybody but I lost 61 lbs - I looked like a Nazi holocaust death camp survivor. It's pretty weird when you don't recognize yourself in the mirror.

5 years+ and I have put about 40 back on.

I have to turn the Ensure and Boost commercials off when I see them on TV - makes me want to puke. If I ever have to go back on a liquid diet again I'll shoot myself... I got by with Carnation Instant Breakfast. They didn't have the VHC stuff when I was treated. That other crap just gagged me. I did much better with the powder mix in milk, I would add Hagen Daz to it for a little extra caloric bump.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
It may be "cool" to be able to drop weight that easily. But as Gary said, you do not have to try it WILL happen. .. and you may get more than you bargain for.
The idea is to support your battle and starving yourself at this point just makes you weaker.

M



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Feb 2008
Posts: 341
Platinum Member (300+ posts)
OP Offline
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
Thanks everyone for what you've told me so far. I've been sharing this with him throughout the day and I had his chemo nurse talk with him about it too. It sparked a good conversation between us. He feels like he's doing great because even though his throat is killing him and he has no taste he is still eating 3 normal meals a day. His snacks consist of V8, an apple or orange or jello. He thinks that is enough calories and if the weight still comes off, it still comes off and he won't be upset about it. I told him yes I was very happy and proud of him for still eating the 3 meals, but I want him to have more calories. Even though he's eating 3 meals a day since it is now a chore or just fuel and there is no enjoyment his portions are a lot smaller than pre-tx and he has no interest in things like the salad or bread or dessert. He's still walking on his treadmill about 1/2 an hour every other day and running the business (hands-on not office work) so he's pretty active. I'm going to start sneaking them in where I can with more cheese, butter, etc. Another thought I had (since he won't drink the supplement drinks yet) is I have some regular Carnation IB that I use for chocolate milk for David if he's not eaten well that day. Maybe I can trick Dan into drinking a glass of "chocolate milk". I had hoped to make milkshakes, but ice creat tastes horrible he said. It's odd to me how somet things have not taste and some actually taste bad.
Anyway thanks for listening and I still welcome any words of advice, etc. I read him all these posts!!!


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
iMarc845, amndcllns01, Jina, VintageMel, rahul320
13,105 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,933
Members13,105
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5