Posts by driftingsurfer14

Just wanted to check in briefly. Dad hasn't started chemotherapy yet—we're still waiting on a CT scan that was ordered back in mid-February—so we should have a clearer picture once that's done. For now, he's handling the preliminary tests quite well and isn't showing any obvious symptoms of Non-Hodgkin lymphoma, which is a positive sign; we're hopeful that catching this early will make the recovery process much smoother.

Sending strength to everyone out there fighting these tough illnesses—I'm sure many of you are winning those battles too! ~~~~~~~~~~~~~~~~~~~~~~~~~

There isn't a hospital right here where I live—but even though Key West and San Diego are closer than Chicago—I'm assuming none of these costs will be covered by Medicare anyway.

Angela Wright said:An internal referral is only valid while the outpatient treatment plan is active—essentially, as long as the patient is undergoing care at the day clinic. My mom's oncologist set her up through the day clinic so she could get all her labs and necessary tests done easily. We never ran into any issues with it.🤷

They ordered him internally for the puncture, but everyone else claimed they couldn't do it.
They suggested we try to get a C1 referral from his doctor so they can handle all the scheduling—though they did mention there's a chance they might push back on that, in which case he should just ask for a D1 instead.
Dad is heading to her place on Monday—we'll see how things unfold then.

Is there anyone here who receives treatment outside their home area—specifically away from their local hospital?
For instance—if you live in San Diego but would much rather receive treatment in Chicago—would you just go ahead and schedule your tests there? I'm curious how Medicare handles that kind of thing, and whether there's any actual chance they’d cover the travel expenses.

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.

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.

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.

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 😢

The folks over at Mayo Clinic just called to let me know Dad has an appointment with the hematologist the day after tomorrow—so things are moving along.
Does anyone have any advice on specific questions we should ask or things we should request to make sure we’re fully prepared for everything ahead?

copperbison4 said:It doesn't necessarily mean that—an older gentleman who shared a hospital room with me had an identical lump on his neck; it was almost perfectly spherical, more like a tennis ball than some irregular swelling. He actually had Non-Hodgkin lymphoma, but when I asked if that was what the lump was, he told me no—he'd had that specific bump for years, whereas his lymphoma was located in his eye. 😕

Goodness 😢😢

copperbison4 said:@ driftingsurfer14

Since your father has a different type, I can't say for sure how things will progress—it's just too variable. You might want to call the number for this non-profit; explain the situation and ask them to mail you some informational booklets regarding the disease, treatment, and diet. They sent me three booklets directly to my house via mail—one was specifically about chemotherapy, another focused on "nutrition for patients with blood cancers," and the third covered Hodgkin and Non-Hodgkin lymphomas by Boris Labar.

Thank you—I will contact them next week.

copperbison4 said:In my case—there weren't really any early warning signs. I simply woke up one morning with noticeable swelling on the left side of my neck. After that—and until the official diagnosis—there was perhaps some mild night sweating (though whether that's psychological or physical, I can't say for certain). Generally, people report swollen lymph nodes as a primary symptom—along with night sweats, unexplained weight loss, and hair loss. During my treatment, I encountered about 4 or 5 very young people—roughly 20 to 25 years old—but there were also 50-year-olds and 70-year-olds. I even read online about children as young as 4 or 5.

My dad had a similar experience—swelling on the left side of his neck. He didn't have any other symptoms then, and he still doesn't have any now. It has been about a month and a half since it started.

copperbison4
Kudos on the explanation—I am certain it will be useful, both for me and for others.

My father's diagnosis is: B Non-Hodgkin Lymphoma, follicular lymphoma grade 2 (80% nodular, 20% diffuse).

There are quite a few more abbreviations here, but I still need to study them a bit to understand what they mean.
I called the hematology department at the hospital this morning; they told me to email the results over and said they would get back to me—if I don't hear anything by Monday, I'll give them another call.

As far as I know, Dad (who is 65) hasn't had a PET-CT yet—just an MSCT of the brain and neck, which didn't show anything elsewhere besides the neck—but we'll see if the hematologist orders one. He did have a chest X-ray and an abdominal ultrasound, and all those results came back fine.

Since we aren't based in New York City, if he needs multi-day therapy, we will likely request that he stay in the hospital—though I am hoping for a shorter course so he doesn't have to go through too much trouble.😢

copperbison4 said:@driftingsurfer14/">@@driftingsurfer14

I don't post here much—though I do read through where I left off every now and then. My diagnosis was also Non-Hodgkin Lymphoma—specifically diffuse large B-cell—located on the left side of my neck and left tonsil. Stage IV (I can't recall if it was A or B—one implies symptoms, the other doesn't, something like that). I finished chemo from November 2012 through May 2013, and I've been in remission since. I'm 23. I'm being treated in St. Louis—and based on everything I've read, Dr. Aurer is highly regarded in NYC. Also, what Angela Wright mentioned is spot on; that falls under hematology. Early on, I spoke with Dr. Nemet at Rebro too. Everyone there seems excellent, so it’s probably best for your dad to try them out. And regarding those lab results—don't be afraid to call and pester them until you get what you need; it's the only way. Let me know if you have more questions—hang in there. 🙂

Thank you so much for reaching out.
I went to pick up the results this morning, and the diagnosis was confirmed—Non-Hodgkin, Stage 2A. It was a bit disappointing how they just sent us away once the diagnosis was set—basically telling us we're on our own now—but I suppose that's just how it goes with illness. If you can manage, you have a chance; if not, there isn't much else to say. 😢
Anyway, I'm going to call the hematology department at Rebro immediately to try and snag an appointment.
How long does the treatment last? How did you handle it? Were you staying in the hospital during therapy, or were you at home?

restlessbadger2 said:I reached out to them several times back in October—and they informed me their contract with Medicare had actually lapsed—so I was told I could only receive services if I paid out of pocket. 🤷

They secured a new contract at the start of the year.

Angela Wright said:That seems excessive—they are absolutely obsessed with their phones.

I assume it’s all due to the busy holiday season. I call those six people every single day—but they just wait until the representative from Merkur arrives before they can tell me to go ahead and call again tomorrow. 😢

Angela Wright said:Give the hematology department at the hospital a call and ask—I don't think there should be any waiting involved.

I'll pass, thanks🙂—especially since we've been waiting eighteen days for that PhD specialist—which feels like an absolute eternity.

Angela Wright said:Lymphomas fall under hematology rather than oncology—so, I highly recommend seeing a hematologist at the Mayo Clinic and specifically Dr. Aurer.

Thanks, 🙂
They mentioned he might need an oncologist, which is why I was looking into that—but I’ll double-check once we have the results in hand. Is the referral sent through a central system, or is there a different procedure for this?

Hello everyone—I am coming to this thread seeking some advice.
My father has been diagnosed with Non-Hodgkin Lymphoma, and we are currently waiting on the pathology results from Merkur to confirm everything—we’ve already had lymph nodes removed and the initial analysis is complete. Since the local hospital doesn't have an oncology department, we need to schedule his care elsewhere. Which center or oncologist would you recommend? Based on your experience, what should we expect for the next steps? Thank you so much. 🙂

I experienced similar issues about a month postpartum—it lingered on and off for nearly two months. I stuck to a light diet, made sure to use wet wipes after every bathroom trip, and washed up whenever possible. Drinking chamomile tea, applying calendula oil compresses—which was my absolute lifesaver—and using Preparation H really helped me get through it.