Mikenh and Surgery

Mikenh

Hopped on the scale and I'm

Hopped on the scale and I'm about 4-5 pounds lower than the infusion date. I'm not eating much and not getting much nutrition from what I am eating. I am ordering a few pizzas to leave around the house if I get some hunger back. Not clear that I'll eat them. I need a new toaster oven too. Everything has to be warm or hot. My wife has offered to make coconut rice and chicken curry. Not sure if I can handle it.

airborne72

Citrus Fruit

For whatever reason, I found citrus fruit to be appealing and it even stimulated my appetite.  When the situation presents itself, store up for the famine.  Eat as much as you can in preparation for the next infusion cycle.  After number three was when my weight bottomed out at 128 and I could not stay the course.

Anyway, eat some tangerines, or oranges or even a salty sour = lemon with lots of salt.  That might help.

Jim

Mikenh

airborne72 said:

Citrus Fruit

For whatever reason, I found citrus fruit to be appealing and it even stimulated my appetite.  When the situation presents itself, store up for the famine.  Eat as much as you can in preparation for the next infusion cycle.  After number three was when my weight bottomed out at 128 and I could not stay the course.

Anyway, eat some tangerines, or oranges or even a salty sour = lemon with lots of salt.  That might help.

Jim

I enjoy citrus and we have a

I enjoy citrus and we have a lot of grapefuits at home but grapefruits exaggerate the effects of various drugs and I'd rather not do that with chemo. The nausea seems to be fading now or I just really feel like pizza. My wife informs me that we do have lemons and I'll add that to hot tea.

abita

Mikenh said:

I enjoy citrus and we have a

I enjoy citrus and we have a lot of grapefuits at home but grapefruits exaggerate the effects of various drugs and I'd rather not do that with chemo. The nausea seems to be fading now or I just really feel like pizza. My wife informs me that we do have lemons and I'll add that to hot tea.

I too have had a craving for

I too have had a craving for citrus. I have been eating organic cava cava oranges. I am embarrassed to say that my appetite has been fine, and in fact I have gained a few pounds. I want to cut back, but the doctor, nurse, and nutritionist said no, that I need to keep eating my protein and veggies and such. I think the gaining is because I get no exercise. I am going to be careful though, and start eating just enough to maintain. I don't know if I just haven't gotten far enough along to be nauseous yet though. The contrast did make me sick to my stomach. And if I don't eat, I get a little sick, eating solves it. Have you tried pasta? That is my go to on days I don't feel so great. I eat with marinara, but maybe if you tried with just light olive oil, that would be more palatable. I have been eating a lot of seitan because they say protein helps. 

Mikenh

abita said:

I too have had a craving for

I too have had a craving for citrus. I have been eating organic cava cava oranges. I am embarrassed to say that my appetite has been fine, and in fact I have gained a few pounds. I want to cut back, but the doctor, nurse, and nutritionist said no, that I need to keep eating my protein and veggies and such. I think the gaining is because I get no exercise. I am going to be careful though, and start eating just enough to maintain. I don't know if I just haven't gotten far enough along to be nauseous yet though. The contrast did make me sick to my stomach. And if I don't eat, I get a little sick, eating solves it. Have you tried pasta? That is my go to on days I don't feel so great. I eat with marinara, but maybe if you tried with just light olive oil, that would be more palatable. I have been eating a lot of seitan because they say protein helps. 

The nausea is at bay now. At

The nausea is at bay now. At least as far as pizza is concerned. Now I have to worry about gaining too.

I have not been able to exercise since the infusion. I will see if I can do something tomorrow. One thing I don't like is eating simple carbs that go straight to liquid in the bag as they seems to wear down the barrier spray more quickly than firm output. The bag rules my diet. Yes, pizza results in liquidy output. I'll have to eat potatoes tomorrow.

plsletitrain

Ileostomy and lack of sleep

My output has also been heavier this month (I had the bag on March 2017) but it was only this month that my output started to get plenty at night.  And that interrupts my sleep because I have to empty it.  Add to that the feeling of starvation (owing to Xeloda probably consuming much of what I've eaten during dinner), I get up at wee hours of the morning and then I can't return to sleep anymore.  Sigh.

Mikenh

airborne72 said:

Citrus Fruit

For whatever reason, I found citrus fruit to be appealing and it even stimulated my appetite.  When the situation presents itself, store up for the famine.  Eat as much as you can in preparation for the next infusion cycle.  After number three was when my weight bottomed out at 128 and I could not stay the course.

Anyway, eat some tangerines, or oranges or even a salty sour = lemon with lots of salt.  That might help.

Jim

I had grapes, a few orange

I had grapes, a few orange slices, a few grapefruit slices and two slices of lemon in hot water. The grapes gave me indigestion (might be the skins). I hope everything comes out. I'll have to be careful with them in the future. The output of the citrus is all liquid. So this won't work for me outside of a little as a treat.

Mikenh

I spent 30 minutes talking to

I spent 30 minutes talking to McKesson (actually most of the time was on hold) and they told me that they completely dropped the ball on my stuff. I've been trying to get supplies for December since the middle of December and they had delays verifying with the surgeon and dropped the ball. I called again and gave the the surgeon's name a number and they dropped the ball. I called again and asked them to ship to my office but they shipped to my home so supplies sat in -15 degree weather for a couple of days. Called and they said that replacement would take care of it. Today they read through everything and saw that nothing had been done so they promised that they'd ship the order out tomorrow night for next day delivery. I will call tomorrow asking for a tracking number. I used up my samples and am back to the old supplies so I can manage but I hate having to spend about five hours on the phone to get an order processed. And lose a month of insured supplies in the process.

Mikenh

The Burt's Bees Hand Salve

The Burt's Bees Hand Salve arrived and I tried it out. It has a funny smell (not unpleasant) and it makes my hands very slippery. But I think that it may have something in it like menthol that makes your skin feel warm. And it helps with the cold sensitivity. I bought three tins so will be trying them out at home and in the office. I found them at Whole Foods too - if I knew WF carried them, I would have bought them at the store.

My Ostomy supplies arrived too! I haven't opened the box but I assume that they're good and I should be fine for the next two months.

Ruthmomto4

Mike

Are you taking anything for the nausea? Besides the steroids and injection meds during infusion? My husband takes zofran every single day even if he doesn’t need it and has had almost no nausea. He also says eating is must even if you don’t want to to keep it away. He also takes liquid ginger twice a day and two supplements the homeopathic dr cleared through the oncologist. He swears those are making making him sail through the chemo. They are a bit pricey but his normal cheap self thinks they are worth it. They are Host Defense Cordycep immune support and host defense cordycep energy support 

i get them cheapest on amazon but Whole Foods has them as well

Mikenh

Ruthmomto4 said:

Mike

Are you taking anything for the nausea? Besides the steroids and injection meds during infusion? My husband takes zofran every single day even if he doesn’t need it and has had almost no nausea. He also says eating is must even if you don’t want to to keep it away. He also takes liquid ginger twice a day and two supplements the homeopathic dr cleared through the oncologist. He swears those are making making him sail through the chemo. They are a bit pricey but his normal cheap self thinks they are worth it. They are Host Defense Cordycep immune support and host defense cordycep energy support 

i get them cheapest on amazon but Whole Foods has them as well

I bought crystalized ginger,

I bought crystalized ginger, ginger snaps and ginger ale to help. I will ask the nurse next time about drugs. The ginger products do help.

Mikenh

I found a couple of pages on

I found a couple of pages on natural hand/foot salves for cold sensitivity and might try my hand at making some of these or just buying them if they are convenient. I think that most of these wind up in cream form. I can just use the Burt's Bees Hand Salve for now. The ingredients in some of these salves is interesting - peppers, oils, etc.

Mikenh

I’m taking a break from this

I’m taking a break from this forum as I’m quite busy at work and am also quite tired. I will catch up when I can catch up with life.

plsletitrain

Mike, your posts have been

Mike, your posts have been very informative.  I learn a lot reading your posts but as much as I want you to be here everyday, sometimes we also need a break.  I hope the tiredness you feel will be overcome soon.  I know having to juggle work, family, cancer, chemo, and the anxiety, worries, etc. takes a toll on our body and sometimes we just want to silently scream.  Looking forward to your return.

Canadian Sandy

Thanks for informing us of

Thanks for informing us of your journey so far. It will also be helpful to a lot of people In the future.

Trubrit

Breaks are always good

Many of our freinds have taken breaks from the forum at one time or another; some never return, but we're hoping that you do, of course. 

It can get all a bit too much. At one point, we were having active forum members dying by the week, at the worst, we lost three regular members in one week. We lost many members during that time, because the pain of losing someone you've met online is equal to the pain of losing a loved one. The forum is running allot slower these days and thankfully, our members are surviving, and moving on. 

Take good care of yourself  and we will look forward to your return, be in one week, three, thirteen......

Tru

Mikenh

I sent a note to my

I sent a note to my oncologist detailing side-effects and how long they've lasted and requested that the Oxaliplatin be dropped by 30% and the Xeloda from 4000 mg to 3,500 mg/day.

I am currently tired a lot and I think that it's something to do with insomnia or losing sleep when getting up to deal with the bag. It also might be working a lot of hours. I'm 16 days out from the infusion and still have cold sensitivity, some arthritis in my hands, the brown spots and I still have to drink warm or hot drinks. So not as miserable as a week ago but not doing great either. I think that another round at full strength would put me in bed most of the time.

I'm also not really working out due to time pressure and the weather. So it's not a good time.

Mikenh

Oncologist liked the idea of

Oncologist liked the idea of taking tests and waiting a week to see if things get better.

Tunadog

I couldn’t work during Oxaliplatin and Xeloda..

That stuff is tough. I actually retired soon after I was diagnosed. I don’t need to work so I decided not to.

The worst part for me was the Peripheral Neuropathy which got worse two months after my last infusion.

I’m 17 months out and my Neuropathy is very closed to being resolved, maybe another month or so.

I’m still cold sensitive but not at all as bad as before.

Good Luck!

 

airborne72

Mikenh said:

I sent a note to my

I sent a note to my oncologist detailing side-effects and how long they've lasted and requested that the Oxaliplatin be dropped by 30% and the Xeloda from 4000 mg to 3,500 mg/day.

I am currently tired a lot and I think that it's something to do with insomnia or losing sleep when getting up to deal with the bag. It also might be working a lot of hours. I'm 16 days out from the infusion and still have cold sensitivity, some arthritis in my hands, the brown spots and I still have to drink warm or hot drinks. So not as miserable as a week ago but not doing great either. I think that another round at full strength would put me in bed most of the time.

I'm also not really working out due to time pressure and the weather. So it's not a good time.

Chemo effects...

Mike:

Your situation is just as mine was.  The only difference is that I am stage II and you are stage III, so I was able to say with some level of confidence that I was not going to do any more chemo.  It was killing me.  YHowever, you are in a different position.

I am confident that you are both knowleable and strong, which will enable you to make a decision and withstand the effects.  I wish you luck.

Jim