Support resources for families dealing with cancer and other serious illnesses

Yeah, the Dex was definitely given as injections, one hundred percent, though I’ll have to double-check the exact name of the medication later... My mom actually handled the chemo pretty well, I guess, it was just that her white blood cell counts would drop so low that she couldn't get her scheduled therapy on time, but once she got those injections, things seemed to stabilize really quickly—like, between Tuesday and Thursday, she was back on track to receive her next round of chemo.

I know you've probably dealt with way more of this than I ever will, so you're definitely the expert here, but I'm going to check the records tomorrow just to see exactly what she was being given.

driftingsurfer14 said:The folks over at Mayo Clinic reached out—Dad has an appointment with the hematologist the day after tomorrow. Does anyone have advice on specific questions we should ask or things to request so we can be fully prepared for the road ahead?

Also, does anyone happen to know the typical timeline between initial exams and starting chemo?
Dad has to deal with 311 miles every single time—it’s quite exhausting for him 😢

Linda Ortiz49 said:The Dex was definitely given via injection, that’s 100%, though I really should double-check the exact name of what it was... My mom actually handled the chemo pretty well, it was just that her white blood cell counts would drop so low that they couldn't start her therapy on schedule, but once she got those injections, things improved so fast—like, from Tuesday to Thursday—so she could get back to her chemo session.

I know you probably know way more about all this than I do, honestly, but I told you I'd check exactly what she was being given tomorrow.

So, I went through my mom's medical records, and it turns out she was getting Dexamethasone injections from her primary care doctor to help boost those white blood cell levels and as part of her premedication before the chemotherapy sessions.

Linda Ortiz49 said:My mom’s labs came back, and she was being given Dexamethasone injections specifically to boost her white blood cell count.

That's wild. 😕 Hold on, is the patient actually being prescribed that much Dexamethasone just to raise their leukocyte levels?
I'm really hoping one of our doctors here can step up and explain the logic behind that.

Angela Wright said:Everything 😕 Wait, does it actually say she was given that much Dexamethasone specifically just to boost her white blood cell count?
I’m really hoping one of our doctors here might stumble upon this and maybe explain it to me.

It doesn't explicitly state the exact reason why she got them, but she received those shots every single time her white blood cell count dipped below the minimum threshold. I think her Oncologist was actually a bit puzzled about why they were giving her those injections, since the white blood cells would probably just recover on their own eventually, but in this specific situation, it would have meant pushing back her chemo sessions, so Mom decided it was better to just go ahead with the injections instead.

Linda Ortiz49 said:She doesn't specify the exact reason, but she received them every single time her white blood cell count dipped below the threshold. Her oncologist was actually puzzled about why she was getting those injections, thinking the counts would likely just bounce back on their own eventually. But since waiting around would have pushed back her chemo schedule, her mom decided it was better to go with the injections instead.

So, based on that, you’re essentially taking a guess that's based on something she might have mentioned verbally. Of course the oncologist was surprised—those injections aren't actually meant to boost white blood cell counts. Those numbers will naturally climb back up given enough time, but sitting around waiting for nature to take its course isn't really an option when you're following a strict treatment protocol. In oncology, timing is everything; you need to hit those therapy windows with as little delay as possible because any lag can directly impact how well the treatment works and the final outcome.
Honestly, I think your mom was lucky her levels recovered so quickly.

She explained to us that it’s specifically meant to boost white blood cell counts. I actually stopped by my primary care doctor yesterday, and he agreed that it’s an excellent injection for raising those levels... basically, it stimulates the bone marrow to get things moving with leukocyte production. Anyway, we took a urine sample in yesterday, and it turns out there really is a urinary tract infection confirmed 🙂

hollowridge88 said:She explained it clearly to us—it’s specifically meant to boost white blood cell counts. I actually saw my GP yesterday, and he confirmed it's a fantastic injection for raising leukocytes... basically, it signals the bone marrow to kick things into high gear and produce more white cells. Anyway, we took a urine sample in yesterday, and sure enough, they just confirmed a urinary tract infection.🙂

Dex and bacterial infections are total opposites; they don't play well together at all.
As far as I know, Neupogen and Neulasta work by stimulating the bone marrow to ramp up white blood cell production.

hollowridge88 said:She explained clearly that it's meant to boost white blood cell counts. I actually saw my primary care physician yesterday, and he confirmed it's an excellent injection for raising leukocytes... basically, it stimulates the bone marrow to kick production into gear. Anyway... we took a urine sample in yesterday, and they just confirmed a urinary tract infection. 🙂

Are you absolutely sure you’re talking about the right thing here? Dexamethasone is a corticosteroid:

Dexamethasone injection solution is used for patients where oral treatment isn't an option and in emergency situations.

The drug is recommended for replacement therapy when there's insufficient natural corticosteroid secretion due to adrenal insufficiency or congenital adrenal hyperplasia.

Because of its anti-inflammatory, analgesic, and anti-allergic effects—and because it suppresses the immune system—it's prescribed for treating rheumatic, systemic connective tissue, allergic, and skin diseases, as well as eye, digestive, respiratory, blood, and kidney issues, certain cancers, transplant rejection, and shock.

For inflammatory rheumatic diseases (specifically rheumatoid arthritis), it’s especially useful for symptomatic or bridging therapy (used while primary drugs haven't kicked in yet or before the prescribed meds reach full effectiveness).

And honestly, it’s not exactly a blessing when dealing with bacterial or viral infections, since it dampens the immune response. That can get pretty sketchy, especially for patients who are already on some kind of immunosuppressant (like chemo, for example).

Angela Wright said:So, based on that—and I’m assuming you’re just guessing because of something she said verbally—you assumed that’s why she got them. Well, of course the oncologist was confused, because that doesn't actually have anything to do with raising white blood cell counts. Those numbers eventually go up on their own, but honestly, just sitting around waiting for nature to take its course isn't really an option when there's a specific treatment protocol in place. It's so important to get the therapy delivered within a certain window without any delays, because those delays can seriously mess with how well the treatment works and the whole end result.
To be totally honest, I think your mom was actually pretty lucky that her white blood cell counts bounced back that quickly.

It wasn't a guess, really. The very first time her white blood cell count dropped low, the doctor told my mom that those injections would boost her levels and that they wouldn't cause her any harm at all. Then, later on, when we went in to pick up her blood work, the nurse would check the counts, and if they were looking low, she’d tell us to come right back in immediately for the injection. There was one time where she ended up going two days in a row, and then on the third day we had our blood drawn, and her counts had jumped from a 2 all the way up to a 6.

Here are some photos from her chemo session... and yep, she actually was given Dexamethasone to help with those white blood cell counts. If that doesn't do the trick, she'll be headed to the hospital to get them boosted manually.

Before my last round of chemo, I was getting Neupogen shots for low white blood cell counts, pretty much exactly how you described—one shot a day for three days straight, then a blood test. While I was on them, I spiked a fever and ended up having to check in at the hematology ward. They hospitalized me because my count dropped to 0.34. Turns out I had pneumonia, so they ended up giving me maybe 6 or 8 more Neupogen injections.

@driftingsurfer14/">@@driftingsurfer14
It’ll probably take a few days between that first consultation and actually starting chemo (for me, I think it was about 5 days). Like I mentioned in one of my earlier posts, try to see if you can coordinate the start date—if you can talk them into adjusting things based on whether the treatment lasts just one day or several.

hollowridge88 said:Here are some photos from the chemo session... and yeah, she actually was given Dexamethasone to boost her white blood cell count. If that doesn't do the trick, she'll be heading to the hospital to get them bumped up manually.

I'm looking over the paperwork right now, but I don't see anything stating she was given Dex specifically to raise her white cell count.🤷

It doesn't actually say anywhere in the paperwork. My Oncologist just explained to me verbally that it's meant to help boost her white blood cell count! But regardless, the main thing is that it helps her out. It definitely won't be for nausea, because she handled that second-to-last chemo session like a champ—no nausea or anything at all—so there was no need to give her any medication for that.

copperbison4 said:Before my last chemo session, I was given Neupogen injections for low white blood cell counts—exactly like you described—one per day for three days straight followed by blood work. While receiving those injections, I developed a fever and had to report to the hematology ward, where I was hospitalized with a count of 0.34. It turned out I had pneumonia; I ended up receiving about 6 or 8 more Neupogen shots after that.

@driftingsurfer14/">@@driftingsurfer14
The gap between the initial consultation and starting chemo will likely span a few days—in my case, I believe it was five. As I mentioned in a previous post, try to coordinate the start date if possible—negotiate with them—depending on whether the treatment lasts one day or several.

We went in for our appointment today and were referred for a mountain of tests—CT scans, blood work, a bone marrow biopsy, and even a dermatologist for a suspicious mole... they scheduled the biopsy for next week, but we have to handle all the other appointments ourselves. Once that's finished, then the chemo begins.
I sent off the emails to schedule the CT and the dermatology appointment immediately—now we just have to hope everything moves quickly.

I just had my follow-up CT scan—which I think is what people call a CT—done after my 4th round of chemo. It took about three weeks from the time they ordered it until I actually got scanned... but that was back when things were running smoothly in the States, so it might not mean much for your situation. Just wanted to give you a ballpark idea of the timing

copperbison4 said:I had a follow-up CT scan—that’s what they call it, I think—which was done after my fourth round of chemo. It took about three weeks from the time it was ordered until the actual scan... though that was back in the summer when things were running smoothly, so it might not apply to your situation. But there it is—just a general idea for you.

Oh, that would be terrible. 😢
I tried calling the hematology department today to see if I need a CT at Mayo Clinic, but I can't get anyone to pick up the phone.

If they really need me to go specifically to Mayo Clinic, why didn't they just give me an internal referral and handle the phone calls and the appointment scheduling themselves?

copperbison4 said:If they really need to check the rib—why didn't they just issue an internal referral and handle the phone call or the appointment themselves?

That isn't clear to us either.

At Mayo Clinic, they rarely issue internal referrals or handle orders on behalf of the patient. My mom has been seeing doctors there for about five years now, and I think that’s only happened maybe three or four times—and even then, only if she was practically begging and making a huge fuss about it.
By the way, the staff at the Mayo Clinic desks have told us several times that each floor operates entirely independently; they don't coordinate across the building. To quote one nurse I spoke with: "We honestly have no clue what they're doing on the floor above us, let alone the one below, much less in a different building."

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