My treatment ongoing-start 1/20/15

[jjinmd]

I hope getting rid of the strep makes things easier to tolerate! I felt the same way about getting the chemo over with before surgery (did 4 rounds, though it wasn't really up for debate). But now, I'm kind of wishing I had done 6 before so I had less to do after. Chemo was much easier for me before surgery than it has been after. Not sure if it is FOLFOX vs. FOLFIRI, ileosotomy-related, or just chemo build up after being knocked down 10 pounds by surgery (or more likely, a combination of the three). I hope you're feeling better soon!

[Nik Colon]

I hope getting rid of the strep makes things easier to tolerate! I felt the same way about getting the chemo over with before surgery (did 4 rounds, though it wasn't really up for debate). But now, I'm kind of wishing I had done 6 before so I had less to do after. Chemo was much easier for me before surgery than it has been after. Not sure if it is FOLFOX vs. FOLFIRI, ileosotomy-related, or just chemo build up after being knocked down 10 pounds by surgery (or more likely, a combination of the three). I hope you're feeling better soon!

Thanks jj,
I hope it doesn't get any worse at least. So how many after do u have now, 8? The plan for me right now is the 6 now and 6 after. I just looked, it looks like 6?

[KWT]

So let me get this straight, you had chemo Tuesday and disco dancing on Thursday?

Did you ask about calcium and magnesium?

[Nik Colon]

So let me get this straight, you had chemo Tuesday and disco dancing on Thursday?

Did you ask about calcium and magnesium?

Lol, .....I don't remember now, I will ask tomorrow when i go in for tx. My brain is scattered lately.

Actually I will call right now so I don't forget

[Nik Colon]

The Nurse said only if needed or low. I can still ask when I go in tomorrow.

[KWT]

It really worked for me or it was a huge coincidence. Why would neuropothy lessen the further one gets into treatments?

[jjinmd]

I hope getting rid of the strep makes things easier to tolerate! I felt the same way about getting the chemo over with before surgery (did 4 rounds, though it wasn't really up for debate). But now, I'm kind of wishing I had done 6 before so I had less to do after. Chemo was much easier for me before surgery than it has been after. Not sure if it is FOLFOX vs. FOLFIRI, ileosotomy-related, or just chemo build up after being knocked down 10 pounds by surgery (or more likely, a combination of the three). I hope you're feeling better soon!

Thanks jj,
I hope it doesn't get any worse at least. So how many after do u have now, 8? The plan for me right now is the 6 now and 6 after. I just looked, it looks like 6?

I did 4 of FOLFIRI before, and the plan is for 6 FOLFOX after (I have done 3 so far). We were debating 8-12 total between before and after surgery, and I picked the middle (though my oncologist assures me it was more scientific than that!) At this point, I'm taking them one at a time, and will be happy if I get through that 4th FOLFOX since that was his minimum target. After that, if we have to lower or drop the oxi, I won't be quite as stressed.

[Ceebo]

My husband had 6 rounds of FOLFOX. He always kept his fluids room temperature and kept an insulated glove next to the fridge. Fortunately he had the treatments during the warmer months here in Michigan. He doesn't know how he would have managed in the cold winter months.

[Nik Colon]

Just had my 3rd tx today at 11. Same reactions as last time pretty much. Kicked in at end of tx. Started with the slight dizziness and twitching in hands and eyes and little slurred speach. Went to wait for valet and started getting the weird delayed/gagging sound cough which was not as bad this time cuz it's getting better. The car ride home is when the muscle tensing in legs hands started again and where it was hard to talk. Could breath ok if not talking but had to talk really slow or I would lose breath, but even if I wanted to I couldn't really speak faster or yell, like all my muscles in my entire body was shutting down. Luckily only lasted 30 min or so and slowly came back so somewhat normal. Muscles still sore, and the cold sucks! Ok, my arm is hurting and I think I summed it up.

[MamaN]

Hi
Have you talked to your onc. They can adjust your dose so side effects aren't so bad. I had mine adjusted after second tx. Maybe this could help a little? And always wear a scarf ! Could not stand breathing in the cold air.

[Nik Colon]

If they get worse I will. It is some what scary, well mainly the muscle shutdown and breathing but I seem to be able to obviously handle it. I just tell my self to relax and it will go away soon. If it gets any worse I will definitely ask for cut back.

[Nik Colon]

Just got up to pee and it feels like someone kicked me in the stomache. I need some damn pain meds soon!

Also forgot to mention the steroids. They make me awake but not my body. The main thing makes me really chatty, I can't shut up and talk super fast, that is of course after the previous talking slow thing goes away.

[MamaN]

Call the doc . I was on pain meds through chemo! I had nuelasta shots I got pain meds. And I lived on heating pad! Ugh I feel for you!

I acted like a crazy person on steriods! I made them stop giving them to me. I'd rather sleep throught my pack days then be all over the place..butt everyone's different just knew I couldn't handle them.

[Nik Colon]

I see my GP next week and may be able to get a few, but I have apt on my next infusion day to also see palliative care so I can get everything in order.

[Nik Colon]

Sorry, another update to help me keep track

My numbers which have been abnormal (am taking some vitamins and protein shake to try and help some of them)

Platelet Count
1/20 - 248
2/3 - 218
2/16 - 130
(normal 150-450) doc said down to 75 for tx

Urea Nitrogen
1/20 - 11
2/3 - 4
2/16 - 5
(normal 7-30)

Albumin
1/20 - 3.4
2/3 - 3.1
2/16 - 3.2
(normal 3.4-5.0)

ALT
1/20 - 39
2/3 - 42
2/16 - 111
(normal 0-50, but was told not to worry until x5)

AST
1/20 - 26
2/3 - 20
2/16 - 75
(normal 0-45, but was told not to worry until x5)

everything else in normal range, getting new vitamin d test next week at GP, was at 17 before dx in november, normal 30-75 roughly?

end of update