Down to 104 pounds. Help

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AppleTree
Posts: 223
Joined: Fri Mar 18, 2016 8:16 am

Down to 104 pounds. Help

Postby AppleTree » Wed Sep 05, 2018 9:42 pm

No matter what I do, I can not gain weight. I am 104 pounds and 5'8".

I have terrible diarrhea issues...much worse than pre chemo. I went all through chemo without a bag. I finished chemo in April and really thought by now I would be bouncing back nicely. Currently I get 1x month Sandostatin and have been given the ok to take up to 8 Lomotol a day. In addition, I often take 1-2 Oxi codone during the day due to radiation pelvic pain.

I complained to my oncologist and she mailed me a medical release that I can do a cancer workout program through the hospital for strength training. One issue is by the end of the night my head feels very heavy. She has not even seen me for 2 months!

I have had 2 appointments with a dietician. All month I have been on a low fiber diet. She was horrified today about the gym program. She says I can not afford to loose any more weight. She is leaning toward IV food (TNP) for a bit. I have an appointment at Mass General to explore that next week.

Fecal incontinence is extremely painful. I have good days, then horrible days. So it makes it extra hard to plan anything. For example, I must have had the runs 30x today and I have 2 more weeks to go for my shot. I am left raw and sore, weak and drinking tea and Gatoraid. But last week I was able to enjoy a day about town (I just brought my own food!)

Any thoughts, ideas? Anyone else have this TNP? I think it stands for Total Nutrition Plan.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper right lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July PET...CLEAR!

NHMike
Posts: 1723
Joined: Fri Jul 21, 2017 3:43 am

Re: Down to 104 pounds. Help

Postby NHMike » Wed Sep 05, 2018 10:46 pm

I'm sharing your journey and have had a rough time too but I've focused on getting help from products. I took two Imodium today and they have helped. I still had many trips to the bathroom but had some fairly long periods of peace. I used Cavilon Spray as well and this decreased irritation substantially. I've ordered three types of creams as the spray is clumsy to apply down there but I have a few bottles left over from ileostomy days. It provides a barrier so that waste doesn't sting so much.

I'm using diapers and pads to avoid messes and a Peri Bottle to clean up with less friction and I use wipes when there's more mess than the bottle can deal with.

I have some idea as to what you're going through as I dropped a fair amount of weight and wound up in an ambulance to the ER for dehydration and probably too little food. It did a number on my heart rate. I saw the cardiologist today just to be safe and he said I could drop the heart medication. I can eat and put on weight but I will probably pay for it. I'm hoping that the Imodium can improve quality of life - maybe a good sleep and the ability to sit and work for more than 25 minutes.

I have very firm stools now - maybe too firm and was thinking of something to soften them. The diarrhea cleared up in about two weeks for me. If you still have it, then you should be talking to your surgeon.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Swirdfish
Posts: 287
Joined: Sun Jun 19, 2016 3:57 am

Re: Down to 104 pounds. Help

Postby Swirdfish » Wed Sep 05, 2018 11:40 pm

AppleTree wrote:No matter what I do, I can not gain weight. I am 104 pounds and 5'8".

I have terrible diarrhea issues...much worse than pre chemo. I went all through chemo without a bag. I finished chemo in April and really thought by now I would be bouncing back nicely. Currently I get 1x month Sandostatin and have been given the ok to take up to 8 Lomotol a day. In addition, I often take 1-2 Oxi codone during the day due to radiation pelvic pain.

I complained to my oncologist and she mailed me a medical release that I can do a cancer workout program through the hospital for strength training. One issue is by the end of the night my head feels very heavy. She has not even seen me for 2 months!

I have had 2 appointments with a dietician. All month I have been on a low fiber diet. She was horrified today about the gym program. She says I can not afford to loose any more weight. She is leaning toward IV food (TNP) for a bit. I have an appointment at Mass General to explore that next week.

Fecal incontinence is extremely painful. I have good days, then horrible days. So it makes it extra hard to plan anything. For example, I must have had the runs 30x today and I have 2 more weeks to go for my shot. I am left raw and sore, weak and drinking tea and Gatoraid. But last week I was able to enjoy a day about town (I just brought my own food!)

Any thoughts, ideas? Anyone else have this TNP? I think it stands for Total Nutrition Plan.


I believe you mean TPN? TPN is intravenous or IV nutrition. Think of a big 5L milk bag. I was on that for 2 weeks while I leaked out 2L of lymph fluid daily. I was still allowed to eat on TPN though.

Sorry ive got no more info. Wish you well.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

erins
Posts: 26
Joined: Sun May 27, 2018 12:41 pm

Re: Down to 104 pounds. Help

Postby erins » Thu Sep 06, 2018 1:28 am

I can’t help with the pain medication—I get nausea when I take opiates, so I didnt end up taking them beyond the first week. I also didn’t have chemo or radiotherapy, so my experience is limited in usefulness, I’m afraid.

That said I’m about your height, naturally thin and I dropped a scary amount of weight as well (about 25 pounds) though I was lucky to have my symptoms dissipate before I got too low. If I’d dropped much more they’d have put me on protein shakes. I got down to about 110, which was pretty scary—I had constant diarrhea and cramping and just couldn’t keep enough down to stay healthy.

My doctor told me to eat anything and everything I could, reguardless of “healthiness” I found that for a while plain noodles (no sauce) and plain chicken was all I could handle, so I had every variation of that for several weeks (my local Ramen place was a godsend). Baked potatoes (plain, without skin) were a good comfort food too. I also ate frightening amounts of plain ice cream (Because how many times does your doctor tell give you a free pass to indulge, really?). I avoided anything with seeds or nuts and avoided most fruit (which was the hardest thing to give up). Bananas and Avocados worked well for me, though some folks have had trouble with them. Smoked salmon was also doable. You might check out the BRAT diet (with some of the modifications they mention at the end) https://www.firstforwomen.com/posts/bra ... ers-157833

My doctor recommended against heavy exercise because of how fast I lost weight. I could walk for fitness, but no running or weight training. I’m still on those restrictions for another month or so.

You might ask about probiotics—I found that probiotics helped immensely—I used Yakult which is just a yogurt drink, but others may have more potent suggestions. If I’d been taking a probiotic regularly, I’d likely have not lost quite so much weight. I have a feeling that getting the gut bacteria back into balance is more important than we know—my surgeon actually recommends it to all her patients, and it made a huge difference. I’d ask first, though—my situation was rather different from yours...

Good luck, and I hope some of this helps.
38 yr old female
Rectal bleeding for 1 month—>
5/4/18 colonoscopy found mass in sigmoid colon
5/21/18 LAR
stage 2a, 0/17 lymph, clean margins
T3N0M0 G1
LVI neg, PNI neg, MSS

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: Down to 104 pounds. Help

Postby O Stoma Mia » Thu Sep 06, 2018 3:20 am


jep
Posts: 80
Joined: Sun Jun 11, 2017 7:45 pm

Re: Down to 104 pounds. Help

Postby jep » Thu Sep 06, 2018 8:02 pm

Hello, and I'm sorry that you are having so much trouble gaining weight back...my husband was on TPN post surgery for at least a month...it may have been longer....it was very good for him because it took away some of the pressure to eat more solid food for nutrition....the solid foods were very difficult for him and I think the TPN was a blessing. He was still eating a low fiber and pretty smooth diet, and also getting the vitamins and calories from the TPN....it was a good thing for him....let me know if you have any questions about the process, as I set him up for each session....I was nervous at first but once you do it a few times it's pretty easy...
Jep
Husband DX Stage IV CC on May 16, 2017
47 years old
Tumor Location: recto-sigmoid
Tumor type: Adenocarcinoma
Tumor size: 7.4 cm
Tumor grade: G3
TNM code: T3N2M1
Positive lymph nodes: 8 out of 20
Baseline CEA value: .9
LVI: present
Perineural invasion: present
Surgical margins: clear (w/in microns)
Primary surgery type: LAR
Folfox (August 2017-January 2018)
Scope June '18 - CLEAR! - 2 polyps removed

Pyro
Posts: 14
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Down to 104 pounds. Help

Postby Pyro » Wed Sep 19, 2018 12:37 pm

This is not a joke or sarcasm, start smoking or ingesting weed, not CBD, but THC. It will get you through the day, and the munchies will make you eat like you haven’t since puberty.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MD Anderson liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe removed, PVE
May 2016 - 70% of liver removed
Jun 2016-Radiation
Jan 2017-permanent colost @ MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Radiation for 1 chest tumor

User avatar
susie0915
Posts: 847
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Down to 104 pounds. Help

Postby susie0915 » Thu Sep 20, 2018 7:05 am

I lost 40lbs during all my treatment. My doctors kept telling me to gain weight. I also went through chemo without a bag and always had diarrhea. After finishing treatment I could not gain weight either. Because of having to go to the bathroom all the time I either just would not eat, or if a did it never stayed with me. I was not able to gain weight until I started doing daily tap water enemas to empty my lower bowel every morning. I an free of bathroom trips until I do an enema the next morning again. It takes about 30 minutes in the morning, and I have been able to gain 15 lbs, and I am not afraid to eat anymore. This was recommended to me by the doctors at the University of Michigan bowel control clinic. Not all doctors are onboard with rectal irrigation(enemas), but there are many on this site that use them, and others that have has low anterior rectal resection. It is becoming a more accepted solution the what is called low rectal anterior resection syndrome. I have been using them daily for over a year and a half, and 98% of the time it's works beautifully.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change


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