Mother needing help and support post OP
My mother in law, underwent EC surgery in May of this year (2010). She did wonderfully. She is currently taking post OP chemo, and here is where she is having trouble. Her weight is becoming alarmingly low. The nutritionist and hospital have told her that if she gets down to 118 lbs that she is goign to have to have a feeding tube. She is adamant about not wanting one, as the very thought of it scares her almost as much as the EC did, if not more.
I love Nancy very much, she is truly a second mother for me. We have tried several different methods of getting her weight up. She starts building her weight very slowly, then when she undergoes her chemo treatment(every 2 weeks), she loses what she's gained and a little more each time. Currently she's 4 pounds from the point to which she has been told she needs a feeding tube and has already told us, her family, that she will not do it. She has 5 more chemo treatments then she will be done with everything, other than the quarterly / annual check-ups.
If there is someone out there that could help, whether to encourage her about the tube (we(family) just don't know enough about the tube process), or possibly to offer some ideas on how to help get her weight up I would appreciate it very much.
Thank you
Keith
Comments
-
j tube can help
Hi,
I had the j tube after surgery for 3 months and had post op chemo too but don't think it was as extensive as your mom in law's. Mine was 3 cycles of taxotere every 21 days but it did set me back even with the j tube I lost weight but don't know what I would have done if I had not had it. I lost weight before surgery so there was no other option for me but the j tube and to keep it in till after chemo. It is a lifesaver as many on the board can testify. Also there is a Nestle's product which is 560 calories which helped me gain weight but you have to drink it in small amounts to avoid the dumping syndrome. I am just amazed that your mil did not get a feeding tube during surgery. Most people have it then and the drs determine if it stays in and for how long. It is not that bad and better nutrition means better healing. I would urge her to try the high calorie drinks and see if she can gain weight but not be afraid of the j tube. It is worth it in the long run just to get your strength back. take care, hope she cooperates.
Donna700 -
Thank you very much, I willDonna70 said:j tube can help
Hi,
I had the j tube after surgery for 3 months and had post op chemo too but don't think it was as extensive as your mom in law's. Mine was 3 cycles of taxotere every 21 days but it did set me back even with the j tube I lost weight but don't know what I would have done if I had not had it. I lost weight before surgery so there was no other option for me but the j tube and to keep it in till after chemo. It is a lifesaver as many on the board can testify. Also there is a Nestle's product which is 560 calories which helped me gain weight but you have to drink it in small amounts to avoid the dumping syndrome. I am just amazed that your mil did not get a feeding tube during surgery. Most people have it then and the drs determine if it stays in and for how long. It is not that bad and better nutrition means better healing. I would urge her to try the high calorie drinks and see if she can gain weight but not be afraid of the j tube. It is worth it in the long run just to get your strength back. take care, hope she cooperates.
Donna70
Thank you very much, I will pass on the information. I agree with you, as does the family that the tube would help her a ton. I think it's more a matter of her fear of it, than anything else. The nestle's product I will definitely see if i can find it. Thank yo so much for your response, and I hope you are doing well.
God bless,
Keith0 -
J tube is okay
Keith,
Tell your mother in law to read this board, the J tube is not even noticeable, its inserted around your stomach area but on the side, it is not even noticeable out in public or anything the only people that see it is family. Its not bad at all, and she can do her feedings at night while she sleeps, and undo it in the mornings. trust me if she got one she wouldn't even know its there.
I am glad she is healing so good. Donna70 had hers for awhile and she said if she hadn't had that she wouldn't of progressed as well as she did.
Remember your MIL is from the old school probably and very private and scared. I hope she is eating several meals a day if not she should
If we can help futher please ask
Lori/MOE580 -
Here are some suggestions
Keith,
It sounds like your mother in law is having issues similar to many of us who have post surgery chemotherapy. I lost 20 pounds from the EC surgery and then an additional 10 pounds during chemotherapy. I would gain some weight during the second and third week after an infusion treatment (I was on a 21 day cycle) and then lose it the week of the infusion treatment. I did not use a feeding tube during my chemotherapy although I had one (a j-tube) inserted along with my EC surgery and used it for a few weeks after surgery.
A j-tube can be a great help for maintaining nutrition and hydration during chemotherapy and has minimal problems if inserted and maintained properly. Many of us have had one. Once Nancy gets used to how to position it under her clothes and keep it clean and flushed it is “invisible” to people around her. Most of the feeding happens during the night when she is asleep so it does not take a great deal of her time to complete feeding that way. It is very helpful if she has a caretaker to help her with things like setting up the feeding pump, flushing the tube with water periodically, and keeping the area where the tube enters your abdomen clean, but all that can be done by the patient if necessary.
More importantly; lets see if we can make some suggestions to help Nancy maintain her weight without the assistance of a j-tube
First, during chemotherapy hydration is important to maintaining weight and physical well-being. Not only do we lose weight because of the loss of moisture in our body but dehydration has a number of symptoms that make eating difficult. Examples of these symptoms include: nausea, difficulty swallowing, and fatigue.
I found that if I scheduled a session of IV fluid replacement two days after my infusion (I received Cisplatin and Epirubicin every 21 days along with 5 FU via portable pump continuously) I not only did not lose as much water weight during that week, but I also felt better physically and found it easier to eat the six meals a day I needed to get enough calories into my body to maintain my weight.
Second, I found that I needed to eat at least six small meals a day. It was difficult for me to eat a large amount at any time so I needed to eat small amounts frequently. I tried to make what I ate count in terms of nutrition by eating things that were high in protein and complex carbohydrates.
I am going to include a web site reference to two documents that may be helpful. One is a post esophagectomy diet that suggests foods to use and foods to avoid.
____________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf
Many of us have issues with “dumping syndrome” after EC surgery and chemotherapy just exacerbates those issues so please find a “dumping syndrome” diet to help with those issues.
_____________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf
Third, it is good to augment calorie intake with supplements that are high in calories such as products like BeneCalorie or Carnation Instant Breakfast.
________________________________________________________________
BeneCalorie
http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=f5f4d29a-d26e-4152-85a4-31ba79059fd0
You can also find BeneCalorie at Walmart
_________________________________________________________________
Carnation Instant Breakfast
http://www.activeforever.com/p-1829-carnation-instant-breakfast-la
ctose-free.aspx?CMPID=Froogle_carnation-instant-breakfast-lactose-free
__________________________________________________________________
A caveat with these high calorie supplements; suggest to Nancy that she drink them slowly a few sips at a time or they could cause dumping. One of our family here, Donna, suggests that you keep it in the refrigerator and drink a few sips every half hour or so during the day between meals.
I am also including a recipe for a high calorie shake designed by another of our family, Sherri, that contains close to 1000 calories and tastes great:
______________________________________________________________________
1 packet carnation instant breakfast.
About 4 large strawberries or other frozen fruit.
About 8 ounces of milk
2 scoops of vanilla ice cream (or frozen yogurt)
2 scoops of whey protein
3 large tablespoons of vanilla yogurt
Then throw into blender and if needed add more milk.
_____________________________________________________________________
Fourth, have Nancy try to get some exercise if she can. I know it sounds counterproductive to exercise and burn off the calories she tried so hard to put in her body but exercise mutes the symptoms of chemotherapy and increases the appetite. So if Nancy can get some exercise, particularly outside, and something she enjoys that will help as well.
I hope this helps. We will be thinking of Nancy and hoping her chemotherapy ends quickly with minimal side effects, and positive outcome.
Best Regards
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 – Stage IIB
12/03/2009 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED0 -
Great infopaul61 said:Here are some suggestions
Keith,
It sounds like your mother in law is having issues similar to many of us who have post surgery chemotherapy. I lost 20 pounds from the EC surgery and then an additional 10 pounds during chemotherapy. I would gain some weight during the second and third week after an infusion treatment (I was on a 21 day cycle) and then lose it the week of the infusion treatment. I did not use a feeding tube during my chemotherapy although I had one (a j-tube) inserted along with my EC surgery and used it for a few weeks after surgery.
A j-tube can be a great help for maintaining nutrition and hydration during chemotherapy and has minimal problems if inserted and maintained properly. Many of us have had one. Once Nancy gets used to how to position it under her clothes and keep it clean and flushed it is “invisible” to people around her. Most of the feeding happens during the night when she is asleep so it does not take a great deal of her time to complete feeding that way. It is very helpful if she has a caretaker to help her with things like setting up the feeding pump, flushing the tube with water periodically, and keeping the area where the tube enters your abdomen clean, but all that can be done by the patient if necessary.
More importantly; lets see if we can make some suggestions to help Nancy maintain her weight without the assistance of a j-tube
First, during chemotherapy hydration is important to maintaining weight and physical well-being. Not only do we lose weight because of the loss of moisture in our body but dehydration has a number of symptoms that make eating difficult. Examples of these symptoms include: nausea, difficulty swallowing, and fatigue.
I found that if I scheduled a session of IV fluid replacement two days after my infusion (I received Cisplatin and Epirubicin every 21 days along with 5 FU via portable pump continuously) I not only did not lose as much water weight during that week, but I also felt better physically and found it easier to eat the six meals a day I needed to get enough calories into my body to maintain my weight.
Second, I found that I needed to eat at least six small meals a day. It was difficult for me to eat a large amount at any time so I needed to eat small amounts frequently. I tried to make what I ate count in terms of nutrition by eating things that were high in protein and complex carbohydrates.
I am going to include a web site reference to two documents that may be helpful. One is a post esophagectomy diet that suggests foods to use and foods to avoid.
____________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/Esophagectomy.pdf
Many of us have issues with “dumping syndrome” after EC surgery and chemotherapy just exacerbates those issues so please find a “dumping syndrome” diet to help with those issues.
_____________________________________________________________
http://www.upmc.com/HealthAtoZ/patienteducation/Documents/DumpingSynDiet.pdf
Third, it is good to augment calorie intake with supplements that are high in calories such as products like BeneCalorie or Carnation Instant Breakfast.
________________________________________________________________
BeneCalorie
http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=f5f4d29a-d26e-4152-85a4-31ba79059fd0
You can also find BeneCalorie at Walmart
_________________________________________________________________
Carnation Instant Breakfast
http://www.activeforever.com/p-1829-carnation-instant-breakfast-la
ctose-free.aspx?CMPID=Froogle_carnation-instant-breakfast-lactose-free
__________________________________________________________________
A caveat with these high calorie supplements; suggest to Nancy that she drink them slowly a few sips at a time or they could cause dumping. One of our family here, Donna, suggests that you keep it in the refrigerator and drink a few sips every half hour or so during the day between meals.
I am also including a recipe for a high calorie shake designed by another of our family, Sherri, that contains close to 1000 calories and tastes great:
______________________________________________________________________
1 packet carnation instant breakfast.
About 4 large strawberries or other frozen fruit.
About 8 ounces of milk
2 scoops of vanilla ice cream (or frozen yogurt)
2 scoops of whey protein
3 large tablespoons of vanilla yogurt
Then throw into blender and if needed add more milk.
_____________________________________________________________________
Fourth, have Nancy try to get some exercise if she can. I know it sounds counterproductive to exercise and burn off the calories she tried so hard to put in her body but exercise mutes the symptoms of chemotherapy and increases the appetite. So if Nancy can get some exercise, particularly outside, and something she enjoys that will help as well.
I hope this helps. We will be thinking of Nancy and hoping her chemotherapy ends quickly with minimal side effects, and positive outcome.
Best Regards
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 – Stage IIB
12/03/2009 Ivor Lewis
2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
Keith,
First may I say I wish your MI and your family the very best. I am a newly initiated caregiver to this and I am not as familiar with everything as the others here. Several years ago my sister in law had cancer, I won't go into detail but she had a J-Tube. I wasn't privy to the maintaining of the device but I do remember that she had no problems at all with it. It was the only way for her to get nourishment and to maintain her strength through the treatments. You might ask your doctor if he has any patients that she can talk to that have or have had a J-Tube so she can see exactly what is involved and maybe it would clear up any misunderstandings she may have about it. I hope things go well for your mother in law.
Paul,
Great information. I am printing off a few copies of your post for future reference. That shake sounds pretty good. I'm sure my brother will need it at some point in his treatment. Thank you for taking the time to post that. I hope that Keith's MIL will benefit from that and who knows, it might be just what she needs to put on a little weight and gain some strength. Everything I have read over the past month says nourishment is the most important factor in the treatment of this disease.
Best Wishes to all,
Rob0 -
My thanks to allunknown said:This comment has been removed by the Moderator
I want to say thank you all for writing, I am definitely taking notes and I do believe a lot of the problem, if you will call it, is a lack of information and fear. Nancy is one of the strongest women I know and I know that when it comes down to it, she will do what she needs to. I am certain of that. You all are amazing people and the information and support (even the "get a grip on yourself" kind) is appreciated more than words can express. We will continue to persevere, and again, I can not thank you enough for all of your suggestions and help. I will write again as things progress.
My thanks to all
Keith0 -
mother in law
This is Nancy. I appreciate Keith writing to all of u and your advice. I was mantaining my weight until the second round of Chemo. I no longer have a stomach as a resut of the surgery. AT first the surgeon thought he would be able to leave a small amount but because of where the cancer was he could not.Yes I THANK GOD daily that I am alive and that he has gotten me this far and I will beat this. I am 5'5 and weighed 170lbs when this started now I weigh 126. I was maitianing 133 before the the second round of chemo. I am getting Oxplatm every 2 weeks with a pump of Sodium cloride and Fluoruracil fot 48 hrs every 14 days. I am taking the nausa medicine they gave me as I am suspose to but i still feel nausated when I eat. I eat asw much as I can get down but when I start gagging i have to guit. I do not think in would help to eat and then throw it back up. I normally lose 4 pound the first week of the chemo then gain it back the second week.The dr said that as long as i can keep doing this I do not need the j tube. I will get it if I have to but only if I have to. I am not going to depend on a J tube of I can maintain the 126. When I talked to the dr yesterday before my treatment she said that as long as I can keepm up what I am doing I am ok as we all agree that i will gain some of the weight I lost back after the chemo is over. I have 4 more treatments to go. I have only refused the tube so far due to my conversations with the dr. In am also having allergic reactions to the chemo with hives and all. they are having to give me bendrial and steroids before the treatments to stop the allergic reactions. My body is starting to reject the chemo. I think making myself eat and getting as much exercise as I can is my best option and as long as the dr agrees I am going to continue. I am talking to a nutrictist and have changed what I eat as I was always watching my weight before since I was over weight and I am having to change my deit. Hard to do after being overweight my whole life. I am 57 and I am at the weight the drs said I should be for my height and build.
Yes I am worried about my weight and having to get a J tube but i will do what I have to do to stay alive and see my great grandbabies grow up. god willing I have a long time yet to live. I am stuburn and nothing has beat me so far and this cancer is not going to either.
I want to thank all of you for you input and suggustions I do appreciate them even the ones fussing at me as they do help me keep focused when I do get down. Keep up please and God bless all of you.
Nancy Minshew0 -
Jumping to conclusionsnancy1169 said:mother in law
This is Nancy. I appreciate Keith writing to all of u and your advice. I was mantaining my weight until the second round of Chemo. I no longer have a stomach as a resut of the surgery. AT first the surgeon thought he would be able to leave a small amount but because of where the cancer was he could not.Yes I THANK GOD daily that I am alive and that he has gotten me this far and I will beat this. I am 5'5 and weighed 170lbs when this started now I weigh 126. I was maitianing 133 before the the second round of chemo. I am getting Oxplatm every 2 weeks with a pump of Sodium cloride and Fluoruracil fot 48 hrs every 14 days. I am taking the nausa medicine they gave me as I am suspose to but i still feel nausated when I eat. I eat asw much as I can get down but when I start gagging i have to guit. I do not think in would help to eat and then throw it back up. I normally lose 4 pound the first week of the chemo then gain it back the second week.The dr said that as long as i can keep doing this I do not need the j tube. I will get it if I have to but only if I have to. I am not going to depend on a J tube of I can maintain the 126. When I talked to the dr yesterday before my treatment she said that as long as I can keepm up what I am doing I am ok as we all agree that i will gain some of the weight I lost back after the chemo is over. I have 4 more treatments to go. I have only refused the tube so far due to my conversations with the dr. In am also having allergic reactions to the chemo with hives and all. they are having to give me bendrial and steroids before the treatments to stop the allergic reactions. My body is starting to reject the chemo. I think making myself eat and getting as much exercise as I can is my best option and as long as the dr agrees I am going to continue. I am talking to a nutrictist and have changed what I eat as I was always watching my weight before since I was over weight and I am having to change my deit. Hard to do after being overweight my whole life. I am 57 and I am at the weight the drs said I should be for my height and build.
Yes I am worried about my weight and having to get a J tube but i will do what I have to do to stay alive and see my great grandbabies grow up. god willing I have a long time yet to live. I am stuburn and nothing has beat me so far and this cancer is not going to either.
I want to thank all of you for you input and suggustions I do appreciate them even the ones fussing at me as they do help me keep focused when I do get down. Keep up please and God bless all of you.
Nancy Minshew
Nancy,
I for one am very glad you took the time to explain your situation. You clearly are listening to your doctors, you are making decisions that are not detrimental to your health, and as you said yourself, you will do what you need to in order to stay alive. You should be commended for your conviction, not chastized. All too often we jump to conclusions that are about as far from correct as they could possibly be and we call it advice. Nobody has the right to pass judgment on you.
If I have learned anything in recent weeks reading everything I can find about EC, I have learned that every person is different and there are no cookie cutter treatments for this disease. What worked for someone yesterday may not work for someone else tomorrow.
This is supposed to be a place where we can all can come to ask questions, and we hope in turn we will receive compassionate, supportive answers. I can say this, in the future I will do my best to not jump to conclusions, to weigh the facts, not what I think is between the lines.
You keep doing what you're doing Nancy, I know you will do what you believe is best for you, and with the full support of your doctors and your family. Keep fighting the good fight.
God Bless you and your family.
Rob0 -
amenJimsBrother said:Jumping to conclusions
Nancy,
I for one am very glad you took the time to explain your situation. You clearly are listening to your doctors, you are making decisions that are not detrimental to your health, and as you said yourself, you will do what you need to in order to stay alive. You should be commended for your conviction, not chastized. All too often we jump to conclusions that are about as far from correct as they could possibly be and we call it advice. Nobody has the right to pass judgment on you.
If I have learned anything in recent weeks reading everything I can find about EC, I have learned that every person is different and there are no cookie cutter treatments for this disease. What worked for someone yesterday may not work for someone else tomorrow.
This is supposed to be a place where we can all can come to ask questions, and we hope in turn we will receive compassionate, supportive answers. I can say this, in the future I will do my best to not jump to conclusions, to weigh the facts, not what I think is between the lines.
You keep doing what you're doing Nancy, I know you will do what you believe is best for you, and with the full support of your doctors and your family. Keep fighting the good fight.
God Bless you and your family.
Rob
GREAT WORDINGG ROB AMEN TO IT ALL !!!!!!!!!!
LORI0 -
Hello Nancy, I had surgerynancy1169 said:mother in law
This is Nancy. I appreciate Keith writing to all of u and your advice. I was mantaining my weight until the second round of Chemo. I no longer have a stomach as a resut of the surgery. AT first the surgeon thought he would be able to leave a small amount but because of where the cancer was he could not.Yes I THANK GOD daily that I am alive and that he has gotten me this far and I will beat this. I am 5'5 and weighed 170lbs when this started now I weigh 126. I was maitianing 133 before the the second round of chemo. I am getting Oxplatm every 2 weeks with a pump of Sodium cloride and Fluoruracil fot 48 hrs every 14 days. I am taking the nausa medicine they gave me as I am suspose to but i still feel nausated when I eat. I eat asw much as I can get down but when I start gagging i have to guit. I do not think in would help to eat and then throw it back up. I normally lose 4 pound the first week of the chemo then gain it back the second week.The dr said that as long as i can keep doing this I do not need the j tube. I will get it if I have to but only if I have to. I am not going to depend on a J tube of I can maintain the 126. When I talked to the dr yesterday before my treatment she said that as long as I can keepm up what I am doing I am ok as we all agree that i will gain some of the weight I lost back after the chemo is over. I have 4 more treatments to go. I have only refused the tube so far due to my conversations with the dr. In am also having allergic reactions to the chemo with hives and all. they are having to give me bendrial and steroids before the treatments to stop the allergic reactions. My body is starting to reject the chemo. I think making myself eat and getting as much exercise as I can is my best option and as long as the dr agrees I am going to continue. I am talking to a nutrictist and have changed what I eat as I was always watching my weight before since I was over weight and I am having to change my deit. Hard to do after being overweight my whole life. I am 57 and I am at the weight the drs said I should be for my height and build.
Yes I am worried about my weight and having to get a J tube but i will do what I have to do to stay alive and see my great grandbabies grow up. god willing I have a long time yet to live. I am stuburn and nothing has beat me so far and this cancer is not going to either.
I want to thank all of you for you input and suggustions I do appreciate them even the ones fussing at me as they do help me keep focused when I do get down. Keep up please and God bless all of you.
Nancy Minshew
Hello Nancy, I had surgery in May 2008. I had pre op chemo, and post op: but had to stop it my first round because of complications. I have been disease free since Oct. 2008. I only started losing weight after surgery. It was expected at first, but I continued even though I ate well and enjoyed it. The drs. and nutritionist worked with me, but nothing helped. The one thing all my dr's said was that I am healthy and I feel good. All total I lost 98 pds. Two months ago I started gaining ,and have now gained four pds. I am so excited and hope this will last. I am 5'6 and am now a skinney 114.Hoping to gain 30 more; but the main thing is I'm healthy today!!!
I know your case is different because you're still on chemo, and the drs don't want you to lose. Keep in touch. There is a lot of good information from a lot of knowledgeble people.
Sandra0
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