Hello, I'm new here

[Burntoutzen]

Hello,
I'm newly diagnosed and recently found this board (well, to be honest, my wife found it and said that I might find it interesting\helpful while going through this journey).

I was diagnosed Jan 21, 2020, after 2 colonoscopies (the first one failed, the colon cleanse didn't work)
First surgery Feb 11 only to find that because of size and location of tumor (Grand Central of veins, leaning on bladder, about the size of a large orange), could not be removed
Finally started chemo (after pushing back on surgeon who wanted to do ANOTHER surgery before starting chemo to give me a colostomy bag without looking at other opetions, but that’s a WHOLE different story), on March 3
Treatment plan is to do 6 rounds of chemo (FOLFOX) then take 4 weeks off, do a CT scan to see if tumor has shrunk enough to be removed (Keeping our fingers crossed!), have it removed, and then do another 6 rounds of chemo to finish anything remaining.

My experience with FOLFOX has been a little different from what everyone (including that Dr. Google that we all know).

Round 1 – everyone said that the first round would make me nauseous, I’d get cold sensitivity in my hands and wouldn’t be able to drink anything colder than room temperature. To be honest, I kept looking out for these side effects and never experience any of them. The only thing that I noticed was that I was REALLY tired, like getting out of bed took most of my energy.
Round 2 – This is where I started to notice a little of the cold sensitivity, but it wasn’t too bad. It was just when I picked up cold things, it would take about 10-15 seconds, then I would get a tingling sensation in my fingers but nothing too bad, and it went away pretty quick after I set the cold thing down. My energy started coming back too, I mean I wasn’t going to run a marathon or anything, but I felt well enough to do a little work around the house (moved a closet rod in my wife’s closet, replace a fluorescent light in the kitchen), so that helped boost my confidence and mood.
Round 3 – This one was a little tougher, I went in on my chemo day, they ran my labs, and I was told that my white blood cell count was low and that I was running a low fever. They called in a prescription for some antibiotics and sent me home. I got home, took a nap, woke up, ate a little food, and took another nap. When I woke up the next time, I was feeling warm, so I took my temperature and it was around 102.5. I took some Tylenol, waited about 30 minutes, took my temp again and it had not gone down at all. We called my oncologist who said that I needed to go to the ER. Of course, this scared both my wife and I to no end, so we packed a bag and ran down to the ER. I was there for 4 days, got a LOT of fluids, antibiotics, and the shot (I forget the name of it) to help my body increase my WBC. In a matter of days, my WBC count went from 300 to 15000. I got out of the hospital on Thursday, had a good weekend, and went in that next Monday to get round 3. After getting round 3 done, I have had a pretty good amount of energy, only felt nauseous one time (but I think that’s because I forgot about everything and ate too much to fast on Easter, but who doesn’t do that??).

I go back in 5 days to get round 4 behind me, and hopefully my body keeps responding the way it has after the first 3! I'll try to keep posting after each treatment, so maybe my experience will help others deal with their diagnosis and treatment. I know that when I got mine, it was a LOT of information that was thrown at us all at once, and it has taken a LONG time to get our heads and arms around it all.

- burntoutzen

[stu]

Big welcome to the forum . So glad you found us . It was round two that made a bit more of an impression with side effects for my mum then the next few rounds were ok but round six was a tough one . However I am delighted to say it was all worth it and I am hoping it’s the same for you .
You sound as though you have a supportive team around you . Can only be a good thing .
Stay safe and keep contributing. This forum made a big difference to my family .
Take care,
Stu

[claudine]

Welcome! Keep an eye out for peripehral neuropathy while on Oxaliplatin - my husband still hasn't recovered 1.5 years after his last infusion. Some folks here have gotten good results by putting their feet and hands on ice while getting the infusion. I hope it does a number on your tumor and surgery can take it all out next time!

[roadrunner]

burntoutzen:

Sounds like you’re doing well (other than the febrile neutropenia, of course, and even there you bounced back nicely). Good work so far! I only got through 4 cycles of that stuff, experienced arrhythmias, big DVT, massive liver enzyme spikes, neutropenia — though not as bad as yours — low platelet counts, ahh the joy that was. Bailed after 4 to do chemoradiation (for a rectal tumor). I didn’t really mind the cold sensation, had little nausea, fought fatigue pretty well by exercising when I could, even ran a bit on my off weeks. I understand that the neuropathy can get pretty bad, but usually after 10 cycles or so. Mostly tolerable other than the crazy medical stuff I got. Sounds like you’re in a decent place with it. My only advice would be to make sure your oncologist doesn’t get miserly with the Neulasta (or neupogen, if that was your CSF), don’t want those WBCs down with COVID-19 around!

Oh yeah, and if it cheers you up neutropenia is correlated with the FOLFOX being effective against the cancer, so there’s a silver lining to what you went through (this proved true in my case, as just the 4 cycles reduced the tumor by 60-75%). Good Luck!

[kiwiinoz]

Hey Burnt Out Zen

Sounds like you have a pretty good attitude to it all. I kind of looked at chemo a necessary evil I had to go through and for me, it made the down times a little easier.
I got smashed about round 6 / 7 and ended up vomitting for 2 days, and had to have fluids, but I found that after that if I was able to keep my fluids up prior to the infusions, and then keep drinking that week it made things easier. Another member here kept telling me to have pickle juice as it was full of electrolytes. That helped, but as I was not in to eating much at that time, I couldn't eat enough pickles to get the juice so just got some electrolyte replacement tablets that I dissolved in wanted that did the trick.

As people have said, the next thing that will happen will be some peripheral neuropathy, due to the cumulative effects of Oxliplatin. I got to round 10 and my onc removed Oxi from the last 2 rounds.

Good luck mate.

[Gravelyguy]

Welcome!

This is a great place with many knowledgeable people and those of us that don’t know much but they let in the club anyway.


Dave

[Burntoutzen]

Thanks so much for the positive feedback, I’m already glad that I found this forum and believe it’ll be very helpful as I continue on this journey.

I’m just glad to know that there are others out there that are having (or had) similar experiences. I know that it’s going to be a long journey and that I need to take it one step at a time... but with the right support team around me, I know I can beat this thing!!

- burntoutzen

[JJH]

... but I felt well enough to do a little work around the house (moved a closet rod in my wife’s closet, replace a fluorescent light in the kitchen), so that helped boost my confidence and mood.

... Keep an eye out for peripehral neuropathy while on Oxaliplatin - my husband still hasn't recovered 1.5 years after his last infusion...

...
As people have said, the next thing that will happen will be some peripheral neuropathy, due to the cumulative effects of Oxaliplatin...

Hi BurntOutZen,

Welcome to the forum. Just a note to mention that what caught my eye in your post was your statement that you were able to replace a fluorescent light in the kitchen. For me, I can no longer climb a ladder or stand on a chair to replace light bulbs. It has now been over seven years since I finished Oxaliplatin, and now the peripheral neuropathy still has not gone away. There is not enough sensation in my feet or ankles for me to tell whether or not my feet are firmly placed on a ladder step or on a stairwell step. It's the same for walking up a stairwell, especially in dim light: I need to have a hand-rail to manage the stairs, because I cannot tell when my foot has landed firmly on the next step. It's a lack of peripheral sensation, not a tingling sensation.

Maybe before too many more cycles you should discuss your Oxaliplatin dose level with your oncologist. The dosage could be lowered, or the rate of infusion could be decreased in order to spread the Oxaliplatin over a longer period of time. Or the Oxaliplatin could be discontinued completely before the last cycle. Try to discuss the available options with your oncologist.

Also, check with your oncologist whether the dose levels of oxaliplatin for your post-surgery FOLFOX will be the same as what they are now for the pre-surgery FOLFOX. They might be different; the dose levels for adjuvant FOLFOX might be higher that those of neo-adjuvant FOLFOX. Check it out to be sure.

[Burntoutzen]

Just a little update, I got a call from my oncologist and she is adding Nuelasta Onpro to my treatment plan. I will be getting it put on the same day that I get my pump taken off next week.

I’m just curious to see if anyone had any experience with it so I can know what to expect..

Thanks everyone for any feedback or advice!

-burntoutzen

[roadrunner]

Great to hear on the Neulasta. It is an effective CSF. Don’t be surprised if you get some “bone pain” discomfort from it (a fairly common side effect), but it does seem a very good idea in your case. Also, if you have COVID problems in your area, perhaps they can arrange for an in-home takedown (plus your shot) to avoid the trip back in? I got my pump taken down at home, and that worked well. In some countries I believe they let you/teach you to take it down yourself (and do your own shots), but not sure if thst’s an option for you (or if you’d be comfortable with that). Finally, I’d try to monitor your CBC/WBC nadirs and rebounds (you’re probably doing blood tests) to know when you’re down s not/when you bounce back (or if the CSF protects you the whole way through).

[JJH]

Just a little update, I got a call from my oncologist and she is adding Nuelasta Onpro to my treatment plan. I will be getting it put on the same day that I get my pump taken off next week.

I’m just curious to see if anyone had any experience with it so I can know what to expect..

Thanks everyone for any feedback or advice!

-burntoutzen

Yes, I have some advice: If you want to search for persons here with Neulasta experience, you have to spell it correctly. If you spell it the way you just did in your last post you won't find anyone. If you spell it correctly you will have much better luck.

https://www.neulasta.com/onpro/

[boxhill]

I had Neulasta with Folfox from the third or fourth infusion until the last (12th). Like you, I had an injection when the pump was removed. It worked like a charm.

I did have some nasty bone pain the very first time, because I was stupid and ignored the advice to take Claritin. (The reason was that I never found Claritin particularly effective for my season allergies, preferring Allegra.) From then on I took Claritin for a few days and suffered no bone pain. People have had slightly different experiences in terms of when and for how long to take it. If you search the forum you'll find some discussion. Honestly, I can't recall exactly what I did, but I think I'd consider taking it daily for four or five days starting on the day you get your injection, and adjust as necessary.

[Rock_Robster]

I also had Neulasta with my last 3-4 cycles; it worked great and sent my neutrophils and WBCs soaring. I definitely had some bone pain - apparently the majority of your white blood cells are produced in your spine, ribs and hips which is definitely where I felt it. It wasn’t super bad; I just felt like I’d fallen off a small ladder about two days ago.

I found a regular combination of Claritin (loratadine) and Aleve (naproxen) worked best for relieving it. Some people suggest ibuprofen, but i found the naproxen worked better. I started taking the Claritin the day before the injection (which was done on my disconnect day). Warm things helped too - a warm shower, bath or a heat pack. The bone pain kicked in a day or two after the injection, peaked around day 3-4, then disappeared almost completely in a day or two.

Good luck!
Rob

[Burntoutzen]

Thanks for all the advice, I now have round 4 behind me, got the pump off and the Neulasta will administer this afternoon. I have to say that I'm a little nervous, but if it will help keep my WBC and neutraphils on the right levels, then I'm all for it!

I have been taking the Claritin, so hopefully I won't have too much in the way of side effects, although I am prepared for the body aches and bone pain.
The biggest thing that I've noticed after round 4 is that the cold sensitivity has increased, sometimes just going from one room to another in our house will cause some tingling in my fingers... but again, nothing unmanageable.

Hope everyone out there is staying safe, healthy and (most importantly) SANE!

- burntoutzen

[beach sunrise]

Hi BurnOut, I had my 5th infusion of folfox this week. #5 has got me. Nausea, stomach cramps and cold sensitivity but cold sensitivity might really be neuropathy, I don't know for sure. Sounds like you are doing OK with folfox so far. Stay on top of the side effects.