Kris-appetite

[Guest guest]

Kris,

I meant to ask you if your appetite improved when you were on the

oxali. The Dr. says that if it works, the appetite will improve.

Jerry (my husband) says everything is bland and tastes like chalk.

He says he has an idea in his mind of steak, or spaghetti etc. and

when he eats it, it is tasteless. Sweets seem to taste pretty much

the same and we spice up everything, but it would be nice if he could

at least get some pleasure out of food. As far as the iv is

concerned, no one had mentioned to us that it might be uncomfortable

for him (out of the ordinary discomfort, I mean). The Dr. just said

that they can now administer it through iv , but nothing about the

burning. I would hope that he wouldn't be in more discomfort than

usual, because if he is he will stop the treatment. He is due to go

back to the Dr. a week from this coming Thursday. As I had

mentioned, he is seriously thinking of STOPPING treatment--it is his

decision, of course. No one wants someone they love to have to keep

being in pain or discomfort. BUT if there is an outside chance that

the oxali can help him and improve his standard of life, then he will

go for it. I know for sure that if that iv is extremely

uncomfortable, he will not go for it again. Only time will tell at

this point.

Thanks so much for your input.

Barb

[Guest guest]

Barb- I have a good appetite most of the time, fair for the first 4

days post treatment, and have gained weight on chemo since June. My

taste though, is not good. Having had my appetite die for a week or

so after my first surgery, however, I think a good appetite is more

important than taste. It still feels good to have a full stomach.

I know what your husband means about the disappointment when a

favorite food is suddenly tasteless. After many months I have

adjusted to it, although I still cruise the grocery store buying

small amounts of new stuff to experiment with how it might taste.

For me the biggest change was for sweets . Godiva chocolate might as

well be cheap stale dimestore chocolate. Ice cream tastes like

cotton even when I am not cold sensitive. For me, veggies taste as

good as usual, pumpkin pie tastes good, tart stuff, like cranberry

sauce and citrus stuff tastes good. Might have to be careful with

some of that citrus stuff if you have a bit of a sore mouth. Tuna

stuff, and salmon cakes taste good, as do fairly sharp cheeses.

Does your oncologist know how close your husband is to stopping all

treatment? Perhaps he would have some suggestions of someone to talk

with one on one with who had been through this.

I would ask the oncologist about discomfort during injection, and

explain how important this may be to your husband's decisions. They

may have some different infusion techniques to prevent it. Most

oncologists repeat CT scans after 4 treatments. it would be so nice

to be able to give it a trial of at least that long to see if it is

working, before giving up.

Although I am responding well to oxalipatin, it is great to hear of

someone else with Stage IV disease who has had such sucess over the

long term. Thanks for the story.

Take care,

Kris

> Kris,

> I meant to ask you if your appetite improved when you were on the

> oxali. The Dr. says that if it works, the appetite will improve.

> Jerry (my husband) says everything is bland and tastes like chalk.

> He says he has an idea in his mind of steak, or spaghetti etc. and

> when he eats it, it is tasteless. Sweets seem to taste pretty much

> the same and we spice up everything, but it would be nice if he

could

> at least get some pleasure out of food. As far as the iv is

> concerned, no one had mentioned to us that it might be

uncomfortable

> for him (out of the ordinary discomfort, I mean). The Dr. just

said

> that they can now administer it through iv , but nothing about the

> burning. I would hope that he wouldn't be in more discomfort than

> usual, because if he is he will stop the treatment. He is due to

go

> back to the Dr. a week from this coming Thursday. As I had

> mentioned, he is seriously thinking of STOPPING treatment--it is

his

> decision, of course. No one wants someone they love to have to

keep

> being in pain or discomfort. BUT if there is an outside chance

that

> the oxali can help him and improve his standard of life, then he

will

> go for it. I know for sure that if that iv is extremely

> uncomfortable, he will not go for it again. Only time will tell at

> this point.

> Thanks so much for your input.

> Barb

[Guest guest]

Hi Barb -

You didn't direct your question toward me, but since I had oxali I

thought I would give you my thoughts. Oxali did make me lose my

appetite for about a week after treatment, but then it came back. As

soon as I finished treatment it came back, and I have no long term

problems with food tasting bland. I did experience this a bit during

my 5fu (and I was extremely sensitive to smells), but don't recall

this happening with the oxali.

Good luck to your husband.

Best,

Jodi

> Kris,

> I meant to ask you if your appetite improved when you were on the

> oxali. The Dr. says that if it works, the appetite will improve.

> Jerry (my husband) says everything is bland and tastes like chalk.

> He says he has an idea in his mind of steak, or spaghetti etc. and

> when he eats it, it is tasteless. Sweets seem to taste pretty much

> the same and we spice up everything, but it would be nice if he could

> at least get some pleasure out of food. As far as the iv is

> concerned, no one had mentioned to us that it might be uncomfortable

> for him (out of the ordinary discomfort, I mean). The Dr. just said

> that they can now administer it through iv , but nothing about the

> burning. I would hope that he wouldn't be in more discomfort than

> usual, because if he is he will stop the treatment. He is due to go

> back to the Dr. a week from this coming Thursday. As I had

> mentioned, he is seriously thinking of STOPPING treatment--it is his

> decision, of course. No one wants someone they love to have to keep

> being in pain or discomfort. BUT if there is an outside chance that

> the oxali can help him and improve his standard of life, then he will

> go for it. I know for sure that if that iv is extremely

> uncomfortable, he will not go for it again. Only time will tell at

> this point.

> Thanks so much for your input.

> Barb