Posts by copperbison4

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Deal's live for another 21 days, so you just gotta make sure that first successful payment happens before then.

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So sorry, driftingsurfer14. Realized I haven't checked in on you for a while, and I didn't even ask how things were going... just been hoping for the best.

My doctors actually encouraged me to eat whole foods, 🤷 so maybe it’s just a specific type of therapy they're running and the doc knows what they're talking about. My bad...

cosmiclynx14 said:...lots of fresh fruit and veggies every day...

I guess by "fresh" you mean cooked, not raw. Raw food and a weak immune system usually don't mix well.

Amanda Anderson87 said:...is there anything that could help reduce that nausea?

Citrus scents used to work for me. Just zest a little lemon or orange peel and have him sniff it when he feels like he's gonna gag. For me, the urge to vomit was triggered by heavy coughing, not food or chemo, so who knows if it'll work for him—but maybe ask if he'd try it. There's probably some meds that help too, but Angela Wright would know better than I do.

So, I caught something on the radio the other day about new meds being added to the Medicare formulary, so I did a little digging online and stumbled onto this...

"We've added 14 new drugs to the Medicare basic coverage list, along with 77 generic versions of existing medications," said Varga.

The lineup includes stuff for kids fighting acute lymphoblastic leukemia (clofarabine), treatments for sarcoma (trabectedin), melanoma (vemurafenib), kidney cancer (pazopanib and everolimus), lung cancer (gefitinib), plus options for lymphoma and multiple myeloma patients (plerixafor), diabetes (lyxisenatide), high cholesterol (fenofibrate + simvastatin), and fungal infections (micafungin).

They also threw in meds for HIV (maraviroc), neutropenia in cancer patients (pegfilgrastim), muscle spasms from MS or spinal cord injuries (tizanidine), and macular degeneration (aflibercept).

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@driftingsurfer14/">@@driftingsurfer14

That happened right after my 6th round of chemo. It turned out to be pneumonia, and my white blood cell count was absolutely trashed at the time, so looking back, it was just another side effect of the treatment. My doctor was super thorough though—she insisted on everything from brain, chest, and abdominal CT scans to a bronchoscopy. In the end, the pathology report showed that the shadow on my lungs was just inflammation (honestly, I can't remember if it was some kind of fungus or bacteria or what), so they got it sorted out pretty quickly. I was also seeing an infectious disease specialist during that stretch who was working closely with my hematologist.

@driftingsurfer14/">@@driftingsurfer14

I ended up in the hospital because my fever was out of control. They were hitting me with Tylenol—looks like they were doing two 500mg pills or one 1000mg pill three times a day, spaced out every 6 to 8 hours. Every time the meds wore off, the fever would just go nuts again. One day it got so bad they had to give me an IV to bring the temp down, and man, I started sweating almost instantly. That actually helped.

So, you can ask the doctors if he can at least get some 500mg Tylenol at regular intervals, but honestly, I think it’s more important to figure out what’s actually causing the fever instead of just masking it with pills all day. I guess that’s why there's that rule about calling the unit once things hit 100.4... 🤷 watch to see if these issues keep happening and insist that the doctors deal with the root cause.

Exactly. He’s crying because he’s scared. It’s all still so new, and he doesn't even know if chemo is next or what the plan actually is. That's just how it starts. I dealt with those dark thoughts for a few days myself, but everyone handles them differently. Whatever. You just gotta pick yourself up and push through. Just because he's crying doesn't mean he's giving up.

Anyway, had my regular checkup today and everything looks good. I've officially been in remission for 9 months now.🙂

driftingsurfer14, any word on Taton? Has anything started yet?

@driftingsurfer14/">@@driftingsurfer14

Drink tons of water during that first chemo session. You don't want all those colorful drugs just sitting in your bladder after they've done their job... hopefully there's a bathroom nearby, and the nurses will unhook the IV whenever you need to go, as often as necessary. That’s how it worked for me in outpatient, and honestly, anyone doing chemo as an inpatient is a total pushover for choosing that. Grab some bigger bottles—like more than a pint—so you aren't messing around with tiny cups and crap; it makes it easier to stay hydrated.

Regarding why Chicago if it's such a trek? Well, if everything goes perfectly, you’re looking at six round trips to Chicago every three weeks. It feels easy enough at first, but as things progress, you just get weaker. If you aren't careful, you might end up being forced to stay in the hospital toward the end of treatment because you simply can't handle the travel anymore. And let's be real, staying in a hospital isn't for everyone. Personally, I lost weight just doing outpatient, and the sleep schedule totally wrecks you because they're checking your temp at 6 AM. Plus, you can't stand the food every day, and you don't always have someone there to grab you something else. You’re lucky if visitors bring you something decent; most days you're alone, and your freedom is basically limited to the hallway or maybe some stairs if you're feeling up to it...

Also, it’s standard practice—it’s actually written in the paperwork—that if you run a fever over 100.4 between chemo sessions, you have to head straight to the ER. Hopefully, it doesn't come to that, but better safe than sorry. Things change fast. I remember this guy from a small town who was discharged after chemo feeling fine, only to have to pull over halfway between his home and San Diego because his fever spiked to 104 and he had to hit the emergency room.

I get the sentiment that everything is just on a higher level in Chicago. I actually thought the same thing, and Dr. Nemet at Mayo Clinic told me straight up: "If the protocol for this type of cancer is standardized—not just in Chicago or St. Louis, but globally—then we know exactly what we're doing and why. I have nothing against staying local, but it would be stupid to force the body through the stress of traveling 249 miles in one direction every three weeks." He also mentioned that if things don't go according to plan, we'd have to see him in Chicago anyway. I actually ended up seeing him because a colleague and friend recommended him, so I doubt he was just saying that to get me off his back. The real difference might just be the staff—whether one doctor insists more on certain chemo doses or white blood cell counts, whether they run every possible test the second a fever hits to leave zero doubt, or just their overall bedside manner and communication style.

There was also this lady in San Diego who did her chemo in the outpatient clinic there but went to Mayo Clinic for her checkups and sent them her results (can't remember which specific doctor it was). So, that kind of setup is possible. Just ask the doctors at Mayo while you still have time and decide what works best for you.

One more thing for anyone who needs it later: the hematology ward and the outpatient clinic are pretty well-run compared to other departments (I saw this while watching games or going to tests in other areas). Hygiene is solid, and they even have a few sterile units for people prepping for transplants. There are plenty of IV poles (they're old, but they work), though they're always short on beds. It would be great if they could run blood work right there on the unit instead of sending it over to the main lab at Mount Sinai (though you usually get results within a couple of hours regardless). I also read some older articles about plans to start bone marrow transplants in San Diego, saying they just needed the staff, but that never actually happened. As for the staff, I'm happy with them. You'll always find some people more chill than others, but everyone tries given how busy it is, the different patient temperaments, and the lack of space... I've also formed my own little impressions (not that they're perfect) of every doctor and nurse in hematology, so if anyone needs a heads-up later, just shoot me a message.

Looks like those referral forms for outpatient care are valid for a whole year starting this year, so we shouldn't have to deal with getting a new one every single month...

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?

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

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.

It doesn't have to mean anything. This older guy who was in my hospital room had a super distinct lump on his neck too—more like a tennis ball than some weirdly shaped swelling. He actually had Non-Hodgkin lymphoma, but when I asked if that's what the bump was, he said no. He’s had that thing for years, and apparently, his Non-Hodgkin was in his eye 😕

I didn't really have any early warning signs. I just woke up one morning and noticed the left side of my neck was visibly swollen. After that—right up until I got an actual diagnosis—I had some night sweats (honestly, can't tell if it was just stress or the illness itself). Usually, people talk about swollen lymph nodes being the main giveaway, along with those night sweats, unexplained weight loss, and hair thinning. While I was going through treatment, I saw quite a few people in their early 20s, but there were also 50-year-olds and 70-year-olds in the mix. I even read online about kids as young as 4 or 5.

@ October 14

Since your dad has a different type, I can't really say how things will play out for him. You should probably give this nonprofit a call. Just explain the situation and ask them to mail you some info booklets about the disease, treatment, and diet. They actually sent me three different ones right to my house. One was basically a guide on chemo, the second was focused on "nutrition for patients with blood cancers," and the third one covered Hodgkin’s and non-Hodgkin’s lymphomas from Boris Labar.

@driftingsurfer14/">@@driftingsurfer14

For my type, they usually go with 6-8 cycles of chemo (CHOP) plus immunotherapy (R)—the R-CHOP protocol—depending on how you respond. After that, maybe some radiation depending on the tumor size. I did 6 rounds of R-CHOP, then 2 more just with R (mabthera), no radiation for me. In my case, one cycle meant coming in for one day. You get the treatment at the outpatient clinic, and if you’re feeling okay (no fever or anything), you just head home right after. No staying overnight in a hospital room. Then you get bloodwork checked about 7-10 days later, and the next round is scheduled 3 weeks after the last one. That said, I've known people with Non-Hodgkin who had to do chemo for 4-5 days straight (you either stay in the hospital or hit the outpatient clinic, whatever works best for you and the doctors), and that was considered one single cycle. So, it sounds like what your dad has is likely that specific type. For mine, it was diffuse large B-cell (I think the code is C83.3), so you should check his results for that specific wording. If he ends up having to do those multi-day sessions, try (please ask) to schedule that first chemo session at the start of the week (like Monday or Tuesday). It makes things way easier later on if everything goes smoothly, so you aren't stuck dealing with the hospital over the weekend when there are fewer doctors and nurses around.

Also, the first day I showed up at the hospital with those results (the exact diagnosis), my doctor ordered a bone marrow biopsy immediately to see if it had spread there. I don't know if it'll be like that for you, since in my experience, they only did that on certain days, but I got lucky and arrived on the right day. You wait about 7-10 days for those results; mine came back to my hematologist, and the marrow was clear. People say the biopsy process is unpleasant, but honestly, it wasn't a big deal for me. They take a sample from the back of the hip using needles. The needles actually popped twice before they got enough of a sample. You get a little anesthesia, and even a nurse assists by holding you steady so you don't move suddenly. The pain is just this dull ache, kind of like falling hard onto your tailbone on a concrete playground 🙂 though I guess it depends on who's doing the procedure and how much it hurts. Afterward, you lie in the outpatient clinic for an hour or two just to make sure there's no bleeding, and then you're out. Within a day or two, the pain is gone and you can sit normally. It might be a good idea to bring your dad with you when you go for the rib/bone stuff, just to get the ball rolling ASAP. If he needs mabthera, he'll have to sign off on the insurance authorization for the drug. Oh, and I don't know how old your dad is, but just a heads-up for anyone else reading this: patients facing chemo have the right to request sperm freezing, and they can ask their hematologist for a referral.

My stage was determined after a PET-CT scan because of how widespread it was, so I assume you guys are headed for a PET-CT too. Your hematologist will give you the referral once you meet them. If you're doing the PET-CT, expect a bit of a crowd (at least it was in my time, especially with all the drama regarding contract extensions with Medicol where their machines were constantly "out of order"), so see if you know anyone who can help speed things up. I had my PET-CT done at Vinogradski, and Dr. Balenovic read the results (she's great, by the way). Not sure if they still do it there. They say it's really important to have someone experienced and solid interpret those images.

Personally, I handled the treatment pretty well. I never once threw up. I think I only took an anti-nausea pill once, on the very first round. There was one period after the 4th or 5th chemo where a cough absolutely wrecked me—this mucus you just couldn't cough up, which made me feel nauseous, though luckily I didn't vomit. You mentally prepare yourself thinking chemo is going to be brutal, but then things end up looking easier and more positive later on. I was hospitalized for about 20 days due to low white blood cell counts, a fever, and pneumonia after my 6th cycle.

@driftingsurfer14/">@@driftingsurfer14

I don't post on this thread much, but I check in here every now and then to see where everyone left off. My diagnosis was also Non-Hodgkin diffuse large B-cell Lymphoma—it was located on the left side of my neck and in my left tonsil. Stage IV (not sure if it was A or B, I think one means you have symptoms and the other doesn't, something like that). I finished chemo between November 2012 and May 2013, and I've been in remission since. I'm 23, by the way. I'm being treated in St. Louis, and from everything I've read, Dr. Aurer is highly recommended in NYC. Also, what Angela Wright told you is spot on; that falls under hematology. Early on, I actually talked with Dr. Nemet at Rebro. Everyone there seems top-notch, so it's probably best for your dad to try them out. And yeah, I waited forever for my pathology results—just call them and pester them, there's no other way... let me know if you need anything else and hang in there.🙂

So sorry, mistyjackal842. I can't find any specific pattern for filing complaints on the Department of Health website either, but here's an article explaining how the White Phone works. You can probably assume they'll just point you toward the hospital director first...

The Department of Health and Human Services explains that the White Phone's role is basically to guide patients toward their rights within a hospital setting.

- Regarding complaints, when a citizen calls the White Phone for the first time, operators inform them about Section 23 of the Health Care Act and advise them to contact the hospital director, since they're the ones responsible for operations. The Department of Health and Human Services clarifies that if you don't get a response from the director within eight days, or if you aren't happy with what they say, you should call the White Phone back immediately.

http://www.newsweek.com/example-article-about-no-response--without-an-answer

It's a female patient in her early twenties. She’s dealing with constant fatigue and an ultrasound showed a benign growth—not a lymph node, from what I can tell—located between the left axilla and the breast area.





Unfortunately, the lab report doesn't list any reference ranges.