Any advice

fredswilma

Hi all
It is fantastic to be able to come to this site and ask for help, these are only small things but maybe some of you have come across these problems along the way. Mark is once again losing weight 4kgs in less than 2 weeks, I am feeding him up with protein shakes filled with ice cream and fruit, last night he enjoyed a hearty lamb curry filled with real cocunut cream, he eats really well(mushy stuff) if I ate what he did I would be the size of a house, but he's still losing weight does anyone have any ideas as to why?. Also I have been looking on the internet and there does seem to be a correlation between EC and a hoarse voice, by midday Marks voice is all but gone, no sore throat no thrush any ideas again? and lastly he is always really cold is that just because he is so skinny or is it circulation?. I know these are little but they are worrying expecially the weight loss. Any ideas will be greatly appreciated. Thank you all in advance.
Ann

preacherchad

Ann;
I am not familiar with
Ann;

I am not familiar with your and Mark's story but I assume Mark has had surgery. I did not maintain my weight until I started chewing Flinstone vitamins. I took one in the morning and one in the evening. I started eating all meat and vegatables, tons of green beans. My weight did level off, at 15lbs lighter than when I left the hospital after surgery. I came home from the hospital April 18th and weight leveled off 4 weeks ago. (Our bodies process foods so much differently now, so what use to put weight on may not work now. I know protein and B12 are a big key in health and weight. Vitamins are so big, so I chose the Flintsone Chewable route and it is better than none at all. Oh, even though I was not using it, I continued to lose weight until I had the J-Tube removed, I started the vitamins the same day I removed the J-tube.

I did not experience a hoarse voice, but several on here have. I also read that it is common and usually corrects itself after about 3 months. There is a chance it does not and no one can seem to fully explain it.

I stayed cold, I mean freezing until 2 weeks ago. It is your body adjusting to it's new life. I had a heating blanket on my bed. I am in South Carolina and it is not cold here, but I was wearing long sleeve shirts and light weight jacket. I forced myself to get use to temperature, i quit wearing jacket and long sleeve shirts. (My wife likes the thermostat set on frost bite). I am back to normal now, but talked to others who just kept wearing long sleeves and they are 5 years out and are still cold. Is what I did make a difference, not sure, but it is worth a try. It only took about 3-4 days of doing this to get back to normal.

What Mark is experiencing seems all normal. I know every little thing makes you worry or anxious. I stayed on the phone and e-mail with Paul from this site and with another person that is not on this site trying to figure all this stuff out. I am sure someone else will post their symptoms and how long it took them to recover soon and hopefully it will help you.

If you would like, your are welcome to contact me anytime, you can message me and I will send you my telephone number if you would like.

God Bless

chad

fredswilma

preacherchad said:

Ann;
I am not familiar with
Ann;

I am not familiar with your and Mark's story but I assume Mark has had surgery. I did not maintain my weight until I started chewing Flinstone vitamins. I took one in the morning and one in the evening. I started eating all meat and vegatables, tons of green beans. My weight did level off, at 15lbs lighter than when I left the hospital after surgery. I came home from the hospital April 18th and weight leveled off 4 weeks ago. (Our bodies process foods so much differently now, so what use to put weight on may not work now. I know protein and B12 are a big key in health and weight. Vitamins are so big, so I chose the Flintsone Chewable route and it is better than none at all. Oh, even though I was not using it, I continued to lose weight until I had the J-Tube removed, I started the vitamins the same day I removed the J-tube.

I did not experience a hoarse voice, but several on here have. I also read that it is common and usually corrects itself after about 3 months. There is a chance it does not and no one can seem to fully explain it.

I stayed cold, I mean freezing until 2 weeks ago. It is your body adjusting to it's new life. I had a heating blanket on my bed. I am in South Carolina and it is not cold here, but I was wearing long sleeve shirts and light weight jacket. I forced myself to get use to temperature, i quit wearing jacket and long sleeve shirts. (My wife likes the thermostat set on frost bite). I am back to normal now, but talked to others who just kept wearing long sleeves and they are 5 years out and are still cold. Is what I did make a difference, not sure, but it is worth a try. It only took about 3-4 days of doing this to get back to normal.

What Mark is experiencing seems all normal. I know every little thing makes you worry or anxious. I stayed on the phone and e-mail with Paul from this site and with another person that is not on this site trying to figure all this stuff out. I am sure someone else will post their symptoms and how long it took them to recover soon and hopefully it will help you.

If you would like, your are welcome to contact me anytime, you can message me and I will send you my telephone number if you would like.

God Bless

chad

Hi Chad
Thanks for that, I
Hi Chad
Thanks for that, I should probably have put in that Mark is Stage 4 so no surgery for him, he has just started a second round of Chemo, Taxol but the weight loss and voice etc started before that, Mark is also on vitamins etc the doctors allowing him to continue with these even with the Chemo, so different to the first round. Any way thank you again, hoping everything is going well for you.
Ann

cher76

fredswilma said:

Hi Chad
Thanks for that, I
Hi Chad
Thanks for that, I should probably have put in that Mark is Stage 4 so no surgery for him, he has just started a second round of Chemo, Taxol but the weight loss and voice etc started before that, Mark is also on vitamins etc the doctors allowing him to continue with these even with the Chemo, so different to the first round. Any way thank you again, hoping everything is going well for you.
Ann

Same problems
Ann, my husband is also stage IV (you can see our story on "about me" page by clicking on my name to the left of this post) and is having a lot of the same problems. He continues to lose weight even with a feeding tube. He still eats by mouth as well, and sometimes I think he is not getting enough. He usually only takes 2 to 3 cans a day through the tube. He will eat a bowl of cereal first thing in the morning, followed an hour or two later by a scrambled egg or two with an English muffin with butter and jelly, then a can of formula in feeding tube, maybe some soup for lunch or leftovers from the night before, and then whatever I fix for dinner, and around 10:30 a can or can and a half of formula again. Throughout the day he tries to drink plenty of water. He is now on a chemo regimen of erbitux and Irinotechan every three weeks. Two days after chemo and for about 5 days he feels bad and does not eat as much as he should. Last week was a chemo week so he is down to 142 from 150 the week before. I have been trying to get the weight back on him, but it always seems like one step forward and two steps back. He also has had problems off and on with his voice. In the winter when he was in a clinical trial it got really bad, but once he started on these drugs it seemed to come back. In the last week or two it seems to be getting bad again. he is still having problems swallowing, or I should say with mucous, and that prevents him from getting a full meal many times. I am beginning to think that these are all just part of the condition. Other than that he has been feeling pretty good. Before this he never had any other health problems other than sleep apnea, and was in good physical condition other than weighing around 275 lbs. He was physically very strong and I think that has helped a lot. He also is constantly cold. We live at the very southern tip of Texas down near the Mexican border, so our weather now is extremely hot with very high humidity. I am burning up and he is always cold! It was always the other way around before. As it gets warmer I am hoping he will get use to it again. I think it just has to do with the weight loss. When you lose over 100 lbs I am sure your body has to adjust.
Don't guess this help much, but might make you feel a little better to hear someone going through the same things. Will keep you all in my prayers.
Cheryl

jojoshort

cher76 said:

Same problems
Ann, my husband is also stage IV (you can see our story on "about me" page by clicking on my name to the left of this post) and is having a lot of the same problems. He continues to lose weight even with a feeding tube. He still eats by mouth as well, and sometimes I think he is not getting enough. He usually only takes 2 to 3 cans a day through the tube. He will eat a bowl of cereal first thing in the morning, followed an hour or two later by a scrambled egg or two with an English muffin with butter and jelly, then a can of formula in feeding tube, maybe some soup for lunch or leftovers from the night before, and then whatever I fix for dinner, and around 10:30 a can or can and a half of formula again. Throughout the day he tries to drink plenty of water. He is now on a chemo regimen of erbitux and Irinotechan every three weeks. Two days after chemo and for about 5 days he feels bad and does not eat as much as he should. Last week was a chemo week so he is down to 142 from 150 the week before. I have been trying to get the weight back on him, but it always seems like one step forward and two steps back. He also has had problems off and on with his voice. In the winter when he was in a clinical trial it got really bad, but once he started on these drugs it seemed to come back. In the last week or two it seems to be getting bad again. he is still having problems swallowing, or I should say with mucous, and that prevents him from getting a full meal many times. I am beginning to think that these are all just part of the condition. Other than that he has been feeling pretty good. Before this he never had any other health problems other than sleep apnea, and was in good physical condition other than weighing around 275 lbs. He was physically very strong and I think that has helped a lot. He also is constantly cold. We live at the very southern tip of Texas down near the Mexican border, so our weather now is extremely hot with very high humidity. I am burning up and he is always cold! It was always the other way around before. As it gets warmer I am hoping he will get use to it again. I think it just has to do with the weight loss. When you lose over 100 lbs I am sure your body has to adjust.
Don't guess this help much, but might make you feel a little better to hear someone going through the same things. Will keep you all in my prayers.
Cheryl

Stage IVb wife
My husband was cold with the chemo. Still chilly now tho the chemo stopped over a month ago. I do believe the chemo is what is causing him to be cold--maybe the effect on his nerves. But since he doesn't get up and move around as much, that also will affect how chilly they feel. Plus his food intake is down, and "food is fuel". I have read how others keep their weight up by sprinkling whey protein powder on everything. Have you given this a try? Unfortunately my husband saw the whey protein packet and almost ran for the hills. I may get another shot at it when I mix up something in the blender, now that he's got a stent and has to be on a full liquid diet for the next few days. I've got a nice packet of chocolate flavored whey protein powder I'm just itching to try on him.

Also, his voice became hoarse too, when he was doing the chemo. That has cleared up since he's stopped chemo.

cher76

jojoshort said:

Stage IVb wife
My husband was cold with the chemo. Still chilly now tho the chemo stopped over a month ago. I do believe the chemo is what is causing him to be cold--maybe the effect on his nerves. But since he doesn't get up and move around as much, that also will affect how chilly they feel. Plus his food intake is down, and "food is fuel". I have read how others keep their weight up by sprinkling whey protein powder on everything. Have you given this a try? Unfortunately my husband saw the whey protein packet and almost ran for the hills. I may get another shot at it when I mix up something in the blender, now that he's got a stent and has to be on a full liquid diet for the next few days. I've got a nice packet of chocolate flavored whey protein powder I'm just itching to try on him.

Also, his voice became hoarse too, when he was doing the chemo. That has cleared up since he's stopped chemo.

Whey protein
The nutritionist at MDAnderson suggested Jay Robb whey protein, and I have to say of the several brands we tried it is the best. It comes in several different flavors, but my husband prefers chocolate the best. The biggest problem with these drinks has been trying to keep the volume down. He just can't ingest too much at once. I try to only use about 1 cup of milk and then add peanut butter and chocolate syrup for added calories and a few ice cubes in the blender to make it like a shake. This is the only way I have been able to get him to eat the stuff.

Daisylin

cher76 said:

Whey protein
The nutritionist at MDAnderson suggested Jay Robb whey protein, and I have to say of the several brands we tried it is the best. It comes in several different flavors, but my husband prefers chocolate the best. The biggest problem with these drinks has been trying to keep the volume down. He just can't ingest too much at once. I try to only use about 1 cup of milk and then add peanut butter and chocolate syrup for added calories and a few ice cubes in the blender to make it like a shake. This is the only way I have been able to get him to eat the stuff.

Chills
My husband Lee had the chills pretty bad during chemo, but then again, it was February..... in CANADA! He found that long, hot baths helped greatly. Also he would drink green tea, which helped a bit as well. (just the small matter of getting him to drink it

We have not experienced the other things you posted about, his eating is still going well, there is a lot of pain and trouble swallowing, but he is too stubborn to switch to a softer food diet. He drinks a lot of water with his meals, to push the food down. So far we have not had any weight loss, praying that that continues.

Wishing you all the best,
Chantal

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