The Colon Club

lakeswim wrote:Thanks to all of the folks who have posted here! Such wonderful support - THANK YOU!!

I returned from the infusion center around mid-day and took a walk with a friend and I feel mostly okay so far. As far as what I've experienced so far.... it did hurt a little when they accessed my chest port for the first time (and I had had the ointment on for 45 minutes). But after the initial access and a little cold feeling with the first saline, I didn't feel much in terms of the port. The throat thing was the first thing I noticed - halfway into the Oxy infusion, drinking room temp water - my tongue felt odd and swallowing felt like I had a sharp object in my throat (I had my husband look in my throat!). I look forward (!!) to seeing how this throat thing will feel as it gets worse and I guess I'll need luke warm water (as some of you suggest). During infusion, I felt sudden fatigue every once in a while - and I assume that's the Benadryl battling it out with the steroid. I also experienced the first bite thing - which is equally bizarre - when I had a yogurt on the way home. It was slight pain radiating down my jaw line. I happened to combine the two things when I made a frozen smoothie for my daughter 1/2 hour ago and, without thinking, took a sip of the frozen liquid. Lesson learned! I have not yet felt much with my hands - and I even took a bag of frozen fruit out of the freezer without thinking - so I guess that's still in my future. I am feeling a bit of pins and needles right now in my hands/arms. I'm curious how many people on this forum have the neuropathy long term or lifelong? Well, hour 6 now and we will see how this goes into tomorrow (AND sleeping with the pump, which should be interesting). Thanks again for all your lovely support. Very grateful for you guys!

Glad you got through it and now you know. Things will likely get more intense with additional infusions - be sure to keep your oncologist up-to-date with the side-effects.

Every long journey starts with your first steps forward.
Congratulations on taking that step... You should never be afraid of a proactive response to your diagnosis.
You will never be disappointed being purposeful in your life. Purposeful action is always a good plan to move ALL things forward.
Good Luck!
WS

Thank you for letting us know how your first day went... We were thinking of you. Another thing I did was keep a notebook listing my side effects and how I was feeling each day. I also recorded what time I I took my Capecitabine (Xeloda). It was helpful to see how things were changing as the weeks went by so I could tell my doctor and what days I might be feeling better so I could plan to go to work, etc. Also, one's brain can get a little fuzzy from the chemo and fatigue and a written record was helpful. I hope your first night with the pump went well.
Margie

Hi lakeswim,

I am one cycle ahead of you with FOLFOX. Although I have generally been able to maintain a very positive mindset, I admit that I was stressed out that first day.

I haven't had any symptoms at all during infusion, except that the cold sensitivity in my fingertips starts quickly. I was forewarned about cold drinks, and bade farewell to diet gingerale with ice the night before. Cycle 1 quickly trained me to be careful about letting the water warm up before washing my hands! I haven't experienced any nausea at all, although there have been some times when my stomach felt kind of upset. I find that eating small amounts more frequently and avoiding an empty stomach helps significantly with that, so fasting would not be an option for me. I have a tendency to drink too much coffee in the morning, and that definitely doesn't help. I've decided to cut back to perhaps one mug. I make a special effort to drink a lot of fluids the first few days. I find that large quantities of weak herb tea works when I'm tired of water. I can't drink juices or sweetened drinks, thanks to T2 diabetes.

I am on metformin for T2, which means that I've had intermittent loose stool/diarrhea issues since 2010. Trying to keep my bowels in a state of balance seems to be my biggest challenge so far. In cycle 1, I experienced constipation while on the pump, and on disconnection day had one of those BMs that feels like childbirth, LOL. The onc's nurse advised me that this is an effect of the anti-nausea drugs, and to stay ahead of it by taking a stool-softener morning and evening and an evening laxative on infusion day and the day after. I followed her advice Cycle 2, and no problems with constipation. I have resorted to immodium a few times, but that is nothing new for me.

So far, I've found that I feel fine on infusion day and the day after. I don't have any problem sleeping with the pump, although carrying it around is a bit of a PITA, I got used to it quickly. The third day--disconnection day--I feel kind of blecchh as the day goes on. The 4th day, blecchher and I nap a lot. From there I'm on the way up and feel pretty normal.

Regarding the Oxy pins and needles, so far I've found that it fades gradually as the cycle continues. If my fingers are bad, I immediately put them in hot water, and it pretty much goes away. I am taking 10g glutamine in powder form--you would have to take a zillion caps to get this dosage--and a 100mg vitamin b complex cap daily to combat it, on the advice of the onc's nurse. Warm gloves and socks are a good thing, I've found, and previously I almost never wear gloves and wore sandals around the house, even in the winter, despite living in Maine!

Cycle 1 I had a Sustol injection during infusion, which is a long-term release version of an anti-nausea drug. This caused pain and swelling at the injection site that lasted for the entire cycle and longer, so they discontinued it and substituted something that could be delivered via IV through the port.

Lastly, I take an ativan to help me get to sleep on infusion night, as suggested. Apparently the steroids jazz you up.

I hope things are going well for you.

Thanks so much for all the encouragement and kind words and advice. Day 2 was fine - only challenging due to getting only 4 total hours of sleep last night (thank you, steroids and hot flashes) and a headache (thank you, stress) that finally required something at 1:30 am. I usually need 9 hours of sleep and don't do well on no sleep, so I have felt out of it all day just due to the sleep factor. The only other thing of note was that the left side of my mouth felt numb - as I imagine it may feel to be having a mini stroke - while talking to my husband after I woke up this morning. But it was very short-lived and didn't happen again. I made a note of it. I did feel just slightly queasy after eating sunflower seeds but I feel like I'm really looking for nausea symptoms as they are unfamiliar to me (even after 2 kids) and I dread them. The ativan for sleep is tempting - though I am really hesitant to add anything to the Rx pot unless I need to. In fact, I dread the nausea because one of the anti-nausea drugs says it causes dizziness - and I hate being dizzy. For me, dizziness makes me vomit - so what's worse? I did get an acupuncture treatment today and, after hearing about potential side effects of the Oxy, she focused on the hands and feet. Thanks again for your help. I am grateful for feeling like I do today because I know it will change.

You made it through the first one, good job! I remember having that issue with teh pain in my jawline. It lasted just a second each time, but annoying YES! Sounds like you are moving ahead. Take care and keep in touch. I tried private messaging you with my email address, but for some reason it is still in my outbox and wont send. I will try again

Hi lakeswim,
So glad you are boxing on OK. The whole process can be scary just because fighting cancer often means temporarily harming your body before you get to see any healing.
Folk here really care.
Give life heaps.
Steve

I hope your chemo goes well!*hugs*

Today is Day 5 and after my first good night’s sleep all week, I felt great. I took my dog for a short hike and came home and decided to go ahead and try the cabbage/ noodle/pineapple salad a friend made for me. (I had worried about eating cabbage all week given my tummy has definitely been “off” since Monday. But I felt great and went for it.)

Well, while eating, my lips started to itch. Then after eating, I very sick to my stomach. Then, I proceeded to sneeze and launched into what seemed like a severe pollen allergy attack that lasted all afternoon. Sneezing, coughing, runny nose, ... all the classic pollen allergy symptoms. Then .... itchy palms, jaw pain, cheek pain, sore/ tight throat, and jaw and gland pain. Do I have allergies? Yes - very minor. Is the pollen count high today? Yes. But I haven’t had any symptoms all spring and have not had a bad allergy day in years - and I’ve never had one like this! And allergies don’t tend to go from 0 to 60 - they ramp up with the pollen count.

I’m sure this was a random thing but I am also sure it’s tied to chemo somehow. It’s like I had either a cross reaction (pollen plus some new food sensitivity) or a major allergy attack heightened by chemo. Definitely histamine related! I even called my oncologist as I was wheezing and a little concerned. I did some googling but only found people who started food allergies years AFTER chemo - not during. And seasonal allergies don’t appear to change during chemo.

It’s just a little scary because I don’t know what caused it - pollen or food - so I don’t know how to avoid it. And I spent all afternoon in bed miserable on a day that started so well. Thankfully, the stomach distress ended after 3 hours but the rest is dissipating more slowly.

Any ideas? Thank you!

lakeswim wrote:Today is Day 5............... It’s just a little scary because I don’t know what caused it - pollen or food - so I don’t know how to avoid it. And I spent all afternoon in bed miserable on a day that started so well. Thankfully, the stomach distress ended after 3 hours but the rest is dissipating more slowly.

Any ideas? Thank you!

Hi lakeswim,
Sorry I cannot really help but know I care (as do all here) and I know what it is like to have chemo play havoc with my body.
I can share though that even before I ever had the cancer on one stressful time period (shifting home to another part of the country and new job) I almost suddenly started a few weeks of suffering from allergies (to pollen they think) that came and also went. Stress alone can do that......
You are in my prayers.

Given the timing and nature of your reaction, it sounds like pineapple is the most likely culprit.

https://www.healthline.com/health/pineapple-allergy

Regarding the ativan, sleep is important. Very important. I don't think taking one before bed a couple nights a month is going to harm you. But of course it's your body and your choice.

Sorry you had a rough day.

boxhill wrote:Given the timing and nature of your reaction, it sounds like pineapple is the most likely culprit.

https://www.healthline.com/health/pineapple-allergy

Regarding the ativan, sleep is important. Very important. I don't think taking one before bed a couple nights a month is going to harm you. But of course it's your body and your choice.

Sorry you had a rough day.

Boxhill - THANKS - this was exactly what I spent last night looking for. Most sites talk about how pineapple is beneficial to allergy sufferers but I know my body and it was pretty clear to me that the entire situation started after/while I had the lunch - specifically the pineapple. I normally can eat pineapple (though I don't eat it often) so perhaps it was made worse by the fact I was outdoors and already had some histamine response to pollen (chemo being the pivotal factor in all of it). Even into today, my glands under my jaw are tender and my jaw hurts. It's interesting that the area where my jaw hurts is also the area where I get the first bite sensation (when can I call it pain? does it get worse? it's always so startling) when eating. I guess I was naive to think that I was "out of the woods" (in terms of chemo side effects) on Day 5 when I woke up feeling so good. I will keep my armor on in the future! (And will consider sleep help.)

Thanks, Boxhill, for the send and the the sympathy.

SteveNZ wrote:

lakeswim wrote:Today is Day 5............... It’s just a little scary because I don’t know what caused it - pollen or food - so I don’t know how
You are in my prayers.

Thanks, SteveNZ, for your support.

I hope your chemo goes well!*hugs*

How are you doing? Just checking in.....