looking for support and answers

[Cateydid]

so, it’s Saturday evening…

My Joe had the fourth of ten chemo doses last Friday (8/19)….just wrapping up his typical feeling-terrible-for-the-first-week-after-chemo

He has a hot, red, painful swollen elbow….temp is 101.6. Soaked the elbow in HOT Epsom salts, nothing released…smoothed on some frankincense….

With fever, lethargy, sleeplessness, talking in his sleep on the rare occasion when he does sleep…..He’s just not bouncing back like he did when he had 6 doses in 2017…

His wife who loves him feels at wits end…I just don’t know what to do….and it’s Saturday evening after Urgent Care is closed.

guess I’ll try an ice pack now to see if the swelling will go down…

While I hate that we have to fight this beast again with chemo, I am better at it when I know what I can do to help.

Ok. Venting over. I don’t expect any of you folks to know what to do, but, in some silly way, I feel better….calmer….having taken the time to chronicle this point in time.

Thanks for being here with and for each other ….and for me!

[EdBacon]

If he has a temp of 101.6 on chemo, he needs to go the Emergency Room as soon as possible. It could be neutropenic fever. Waiting could have serious complications like sepsis. Please don't take the risk by waiting. Wishing you the best.

The Infectious Diseases Society of America defines fever in neutropenic patients as a single oral temperature of ≥38.3°C (101°F) or a temperature of ≥38.0°C (100.4°F) sustained over a one-hour period.

[Cateydid in reply to EdBacon]

Thank you. We’re at the ER!!

[EdBacon in reply to Cateydid]

So glad to hear. I can stop worrying now.

[Darryl Partner]

Not to frighten you but he should go to ER, now.

[Cateydid in reply to Darryl]

Thank you, Darryl…we are at the ER..

[Cateydid]

Thank you all so much!! We’re sitting in the ER, where they confirm Joe will stay overnight…..at least…

THIS….this is a great example of how much value you all bring to this site.

[EdBacon in reply to Cateydid]

Lots of experience on this forum too. I had the same thing happen to me, only it sounds like his is worse. They ran a bunch of tests, checked me out and ended up sending me home since my temperature had also come down during the time I was in the ER. Better safe than sorry as they say.

[CAMPSOUPS in reply to Cateydid]

Glad your in the hands of the ER.Maybe when this what looks like neutropenia resolves if still taking this 2nd chemo round hard with fatigue let us know in a post as other types of chemo might be suggested that are better tolerated.

But for now please try to relax and take a big breath in good hands now.

[London441]

I’ve had neutropenia since 2020 with occasional very high fevers. Doctors don’t think they’re related and no actual diagnosis has ever been made. It’s hard to trust the doctors but I do. I predict he will come out of this fine, I have for the most part. Great luck to you!

[Fight11]

Praying he feels better!!

[rsgdmd]

I was severely neutropenic (neutrophils were 0.1) for well over a week after my first chemo. Fortunately never got sick or a fever. For next rounds self injected 24 hrs after with Ziextenzo, which is bio-equivalent to Neulasta. My one week labs are now normal. Maybe ask about that.

[EdBacon in reply to rsgdmd]

I just read an article about neutrophil counts and neutropenia likelihood. They used .1 as the number where the risk becomes high.

[Cateydid in reply to rsgdmd]

My Joe just got told he will have to start self-injecting Neulasta …..

[rsgdmd in reply to Cateydid]

That's good. It's easy to do and has kept my WBCs good. They should tell him, but, if not, start Claritin the day before and take one a day til 2-3 days after the Neulasta injection. Helps with bone pain. I've found it to be pretty minimal.

[Cateydid in reply to rsgdmd]

He does take Claritin the day before and for 7 days after…..and sometimes the pain seems unbearable. He doesn’t complain, but I hear him moaning and groaning during the night from the next room.

[Cateydid in reply to Cateydid]

This bout of double pneumonia came 8 days after chemo and 6 days after neulasta…

[SteveTheJ]

I can attest to the therapeudic value of venting and the positive effects of negativity ... <g>

Hopefully the ER visit did all the good. After my last trip to an urgent care for Covid, I vowed to never again go to one of those places. Sit around for 2 hours waiting to see someone and it's not even an MD, the woman didn't listen to me and didn't give me the care I was there for. But I felt like crap and after all that waiting I just wanted to go back home. There are better options.

[Cateydid in reply to SteveTheJ]

I’m so sorry that was your experience. We were ushered right into a room here, and have been given mostly exceptional care…..and when not, I call them on it and get it fixed….I have no problem thanking people for doing their job well, or ‘encouraging’ those who don’t, as we’re paying the same either way….

[Lavender22]

Glad to hear that you’re at the ER.Hopefully it’s a minor event. Keep us updated.

[siouxbee19]

Sorry, just now seeing this. Hoping everything is better now, please update when possible. Please know we are here for you!

🕊️🙏❤️🕯️