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follow up from Ioana re Matthew

ipetrou
Posts: 33
Joined: Apr 2004

how much weight did you/your loved ones lose from surgery? Matthew is down almost 25 pounds in the last two weeks and it is really freaking me out (no, he was not at all fat to begin with). we're seeing the surgeon tomorrow but I was curious about your experiences.

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

I was 125 prior to my whole ordeal, and got down to right around 100 by the time I was through everything. At one point, the nurse who worked for the doctor who handled my radiation made me meet with a nutritionist because she was concerned. If he's able to take products like Ensure, that might help. I am back to my old weight, but my chemo was just about 3 yrs ago. It took a good 18 months to be back to normal. Although in some areas, people would argue that I'm not back fully to normal, but there wasn't a lot to work with in the beginning!

Keep up the good fight, failure is not an option!

Stacy

mikew42
Posts: 113
Joined: Mar 2004

I lost 25 pounds during the week of my surgery. That was in February and now have put 11 pounds back on. It took a good two to three weeks before I got my appetite back and started putting on weight. I was not fat to begin with either as I am 6'5" and wighed 205. Went down to 180 after surgery, now at 191 and holding steady (even with chemo).

bsrules
Posts: 296
Joined: Mar 2004

Ioana, Hello I also care for my hubby as you are doing!! I haven't been on lately but have read your messages. HANG IN THERE!!!!!! I know exactly how you are feeling. Sometimes the rough patches are very tough to get through. All of you friends here will help you through those times as they have helped me!! My husband Bob was diagnosised in Sept. of 2003 with Stage 4 with 60 % liver involved. He started out at 210 1b. and lost a total of almost 70 lbs. by the time he recovered from the surgery and then recovered from throwing blood clots. He was very bad off and I was beside myself with worry but with the help from my new friends here and my husband's drive to survive we both got through it one day at a time. They didn't start chemo until Nov. so my husband could recover to a point enough to handle the it. He is now just finishing his 13th treatment some good some bad. He weighs 188 lbs. now he is still thin but he has been working very hard to get his strength back. It will take time, your husband is a strong willed person and he has you and your daughter to get better for. Just remember to take care of yourself as he will need you. Just let him know that you are there for him in every way. Smiles and laughter are the best medicine. Just take one day at a time. We are all here for you and Matthew!!! Keep in touch and let us know how all of you are doing!! Best Wishes!!! You are in my prayers!! Sue

KrisS
Posts: 232
Joined: Apr 2003

I was wondering if your husband's difficulty is a result of lack of appetite, common post surgically or whether he vomits or has severe pain when he tries to eat. Nutrition is very important for wound healing as well as to maintain weight. If it is a result of lack of appetite, it is frustrating, but small meals freqently are helpful. I sat at the table 8 hrs a day post op, with my sister bringing out little bits of food at a time. That helped a bunch. If the problem is nausea, cramping and vomiting, things are made quite a bit tougher. I am glad to hear that you are getting a nutrition consult as well as a wound care nurse to see your husband.

It might help to show the nutritionist a list of what your husband has been able to eat, and the problems he has if he tries to increase his intake. Otherwise you often get told the standard suggestion of eating small meals frequently for a few weeks before becoming more agressive. After reading what others have been through I am amazed. I would have been in serious panic.

I lost only 3-6 lb weight after a major surgery, however I had what I considered major problems with weight loss prior to surgery during administration of radiation therapy and chemotherapy for neoadjuvant treatment to shrink my rectal carcinoma. I have always been thin to begin with- 5'6 and 118 lb. Vomiting and having severe intestinal cramping, from what ultimately proved to be a radiation induced stricture of a small segment of small intestine, prevented me from taking in more than 450 cal and I lost 14 lb in 4 wks (12 % of my body weight). My oncologist had thought it was a transient result of the treatment, and would get better as soon as I was off chemotherapy in a couple of weeks. However I was desperate. I figured in another 2 wks I would be down over 20% of my body weight. I could feel the pressure on my skin from my bones when I laid down, and was terrified I was going to develop bed sores.

I bought an egg crate foam mattress cover. I BEGGED my oncologist for TPN (total parenteral nutrition) since I had to have surgery 6 wks after completing the presurgical treatment. Although my oncologist was reluctant to order this because it does carry some risk ( infection if not handled carefully as well as metabolic problems if not monitored carefully) he finally agreed to it. It does require an IV line in a large vein for administration. I had already had a port in place so this was not a problem. Within days I was feeling better.

TPN gave me 1400 calories a day in addition to the small amount I was able to eat myself. I gained a pound a week, enabling me to go to surgery at a reasonable weight- 113 lb 8 wks later. They placed a temporary ostomy at that time after determining the radiation damage as well as finding additional metastatic disease.

Aggressive nutritional support prevented weight loss during my second surgery to remove peritoneal mets, and strictured intestine as well as my primary tumor and subsequent treatment with intraperitoneal chemotherapy. I could not eat anything for 14 days. My surgeon anticipated this however, and had the nutritionist start TPN the day after surgery. It was continued until I proved to him I could eat 1200 cal/day. I walked out of the hospital at 117 lb down 3 lb from when I walked in (I figured they cut 3 lb of tissue out of me!). I lost only a couple of pounds subsequently.

I hope that the nutritionist and wound care nurses have some advice. It does sound like others have had pretty major post surgical weight loss, but have ultimately managed to bounce back. Additional nutritional support may be helpful to help get those wounds to heal more quickly and get him in good condition to allow him to start chemotherapy at an optimal time for best results.

Best wishes for a sucessful outcome during this scary time.

Kris

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