First round of FOLFOX today -Advice?

[Marylandmaniac]

Yes jburke9283 - You are So right when you say:
" like everything else, you never get the full story about stuff until it hits you in the face."
Steroid Induced Hyperglycemia sure 'hit' my hubby hard. He ended up needing hospitalization 3days - he is now on Insulin

I had read it was good to drink a lot of water before & after chemo - hubby had NO problem doing that!!! And we thought the fatigue & loosing weight was chemo side effects ... Sigh.

Later (of course.. ) I found this info:
" Glucocorticoid-induced hyperglycemia is common in patients undergoing cancer treatment ... We recommend that all cancer patients receiving gc be screened for hyperglycemia at least 4–6 hours after gc administration." 2013 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3851349/ .

So my recommendation to you Marylandmaniac is to Please make sure You & the medical staff check your glucose!!

Good Luck to You /LPL

Sorry to hear about your husband and the hyperglycemia. I know my oncologist checks my blood every time I go in for an infusion and then the following week in between treatments. I have been very happy with my team so far but I will bring this up to make sure they are looking at glucose. Hopefully your husband won't need insulin forever. I know that must be hard to deal with on top of everything else.

[ANDRETEXAS]

I recommend exercise (even with the pump). I walked 3 miles a day. It helped my attitude immensely. Buy some Pellegrino when the taste of water becomes disgusting. Hoping it goes by quickly...and remember - one day at a time ! Andre

[BeansMama]

Maryland,

Glad to hear your first round is going well! I truly hope it continues through all of your rounds.

Definitely stay hydrated! I made the mistake of not drinking enough because I was nauseous during one of my early rounds. I felt awful! As soon as I started getting the fluids in i felt so much better. You need to drink lots to flush the chemo out of your system.

I usually sleep a lot while I have the pump connected. After disconnect is when I really don't feel well.

I am keeping you in my thoughts and prayers.

[Marylandmaniac]

I recommend exercise (even with the pump). I walked 3 miles a day. It helped my attitude immensely. Buy some Pellegrino when the taste of water becomes disgusting. Hoping it goes by quickly...and remember - one day at a time ! Andre

Thanks Andre,
I think the issue I am having is I am getting sick of drinking things room temperature. I wonder if that is why water is not as appealing? I think the cold sensitivity is gone now. I ate some yogurt out of the refrigerator and didn't have an issue. The only thing that is lingering is the feeling in my mouth and tongue that I ate something hot.
So I am going out today and getting some Pellegrino and some lemon heads/drops (someone else mentioned that on here and I like that idea).

[Marylandmaniac]

Maryland,

Glad to hear your first round is going well! I truly hope it continues through all of your rounds.

Definitely stay hydrated! I made the mistake of not drinking enough because I was nauseous during one of my early rounds. I felt awful! As soon as I started getting the fluids in i felt so much better. You need to drink lots to flush the chemo out of your system.

I usually sleep a lot while I have the pump connected. After disconnect is when I really don't feel well.

I am keeping you in my thoughts and prayers.

Hi Beans,

Yes from what I have heard on here it seems like things are going okay so far. The cold sensitivity is going away thankfully. Now I just have the burnt mouth issue. I go in Monday afternoon and they will check my blood. Hopefully the white blood cells and platelets are ok. A nurse friend of mine called me and said they have cases now of the flu in Maryland. I was shocked that it is here so soon. She just warned me to be very careful. I am glad she said that because in the past I have never worried about getting sick.
I think of you so much and wonder how you are doing. You are in my prayers. I like to imagine that a year from now we are both going to be doing great and we are going to have to arrange an East Coast celebration of life party I see wine involved.

[BeansMama]

Maryland,

Glad to hear your first round is going well! I truly hope it continues through all of your rounds.

Definitely stay hydrated! I made the mistake of not drinking enough because I was nauseous during one of my early rounds. I felt awful! As soon as I started getting the fluids in i felt so much better. You need to drink lots to flush the chemo out of your system.

I usually sleep a lot while I have the pump connected. After disconnect is when I really don't feel well.

I am keeping you in my thoughts and prayers.

Hi Beans,

Yes from what I have heard on here it seems like things are going okay so far. The cold sensitivity is going away thankfully. Now I just have the burnt mouth issue. I go in Monday afternoon and they will check my blood. Hopefully the white blood cells and platelets are ok. A nurse friend of mine called me and said they have cases now of the flu in Maryland. I was shocked that it is here so soon. She just warned me to be very careful. I am glad she said that because in the past I have never worried about getting sick.
I think of you so much and wonder how you are doing. You are in my prayers. I like to imagine that a year from now we are both going to be doing great and we are going to have to arrange an East Coast celebration of life party I see wine involved.

Glad it seems to be going ok. I hate the mouth pain!! It seems like just as it is getting better I have another round scheduled. I use the baking soda and salt mouth rinse faithfully but not sure if it really makes a difference.

I am hanging in there, hopeful with the new doc things will go a little faster. They already have me scheduled for my sigmoidoscopy and have an appointment with the liver surgeon the week after next (hooray!!).

I'm a little worried going into this next round of chemo because of the switch from Folfox to Folfiri. Hoping the side effects aren't too bad.

I keep you in my prayers also, hopefully in a year we can have that party. I want both of us to be able to declare we kicked Cancers butt!

[ANDRETEXAS]

I recommend exercise (even with the pump). I walked 3 miles a day. It helped my attitude immensely. Buy some Pellegrino when the taste of water becomes disgusting. Hoping it goes by quickly...and remember - one day at a time ! Andre

Thanks Andre,
I think the issue I am having is I am getting sick of drinking things room temperature. I wonder if that is why water is not as appealing? I think the cold sensitivity is gone now. I ate some yogurt out of the refrigerator and didn't have an issue. The only thing that is lingering is the feeling in my mouth and tongue that I ate something hot.
So I am going out today and getting some Pellegrino and some lemon heads/drops (someone else mentioned that on here and I like that idea).

------------------

I didn't get cold sensitivity until about round 3...Agree with the lemon heads....agree with Biotene, especially if you get any mouth sores. (I only had one early on.) I couldn't stand room temperature liquids (except the Pellegrino or Perrier), so since cold was out....it was hot coffee, hot tea, soup.......spicy things helped me too....especially Chinese and Mexican foods.

[Annemiek]

Fellow engineer here,
first few rounds were ok for me, cold sensitivty ( getting bread from the freezing became annoying) and warm lemonade, feeling ill, but getting back up. Most difficulty is becoming the repeating sequence of the two weekly circle of pump, feeling ill, feeling better and as soon as you think, yah! Someone's ready with your next pump.
I ate mashed potatoes,p because nothing tasted the same, applesauce to prevent mouthsores and after a few days after infusion, chocolate icecream with lots of whipped cream was the only cold stuff I could handle!
I lost a lot of weight, so my hubby prepared me a caramel machiatto each morning ( lucky me) to get some full fat milk into me and coffee kick.
The last rounds were the worst as I didn't get better in between and was just sick and weak all the time.
It's a mental thing. Keep your rhythm of exercising daily, even if it's just a walk around the block. Schedule some special me time in the week off to spoil yourself, even if you think you won't need it, it will keep up your spirits. I had massages and the beautysalon and apart of the one time she used oil that gave me a rash, it was wonderfully relaxing and mentally strengthening.

Do what works best for you, cause now, you are all that matters for now at least!!

Good luck, you can do this!!

Annemiek

[Marylandmaniac]

I recommend exercise (even with the pump). I walked 3 miles a day. It helped my attitude immensely. Buy some Pellegrino when the taste of water becomes disgusting. Hoping it goes by quickly...and remember - one day at a time ! Andre

Thanks Andre,
I think the issue I am having is I am getting sick of drinking things room temperature. I wonder if that is why water is not as appealing? I think the cold sensitivity is gone now. I ate some yogurt out of the refrigerator and didn't have an issue. The only thing that is lingering is the feeling in my mouth and tongue that I ate something hot.
So I am going out today and getting some Pellegrino and some lemon heads/drops (someone else mentioned that on here and I like that idea).

------------------

I didn't get cold sensitivity until about round 3...Agree with the lemon heads....agree with Biotene, especially if you get any mouth sores. (I only had one early on.) I couldn't stand room temperature liquids (except the Pellegrino or Perrier), so since cold was out....it was hot coffee, hot tea, soup.......spicy things helped me too....especially Chinese and Mexican foods.

I started using baking soda and water to swish my mouth after eating and that seems to be helping. Chinese has been good. The other thing that seems to settle my stomach is fatty foods. The day after my infusion I really wanted a cheesesteak sub. I never usually eat that. A friend brought me one and it did the trick. SO for now I am not going to worry about the types of food I eat.

[Marylandmaniac]

Fellow engineer here,
first few rounds were ok for me, cold sensitivty ( getting bread from the freezing became annoying) and warm lemonade, feeling ill, but getting back up. Most difficulty is becoming the repeating sequence of the two weekly circle of pump, feeling ill, feeling better and as soon as you think, yah! Someone's ready with your next pump.
I ate mashed potatoes,p because nothing tasted the same, applesauce to prevent mouthsores and after a few days after infusion, chocolate icecream with lots of whipped cream was the only cold stuff I could handle!
I lost a lot of weight, so my hubby prepared me a caramel machiatto each morning ( lucky me) to get some full fat milk into me and coffee kick.
The last rounds were the worst as I didn't get better in between and was just sick and weak all the time.
It's a mental thing. Keep your rhythm of exercising daily, even if it's just a walk around the block. Schedule some special me time in the week off to spoil yourself, even if you think you won't need it, it will keep up your spirits. I had massages and the beautysalon and apart of the one time she used oil that gave me a rash, it was wonderfully relaxing and mentally strengthening.

Do what works best for you, cause now, you are all that matters for now at least!!

Good luck, you can do this!!

Annemiek

Thanks Annemiek. Always nice to hear how other people handle things. SO far the only thing is the burnt tongue feeling. I worked out yesterday and today and feel pretty good. Yesterday after I came home I did feel tired so I just rested on the couch for a bit and then felt better. I think the key is just listen to my body. I am realistic enough to know that each round will most likely get tougher but I am going to hope for the best. I am trying to keep it in my head that chemo is my ally in this fight and I need it to kill this tumor and any scragglies in there.
And I like the idea of ice cream!! I may have to treat myself to some later this week. I haven't tried anything super cold yet but figured I should be okay in the second week.