Posts by ruggedfox11

Robin Diaz4 said:Dad was supposed to head in for his final chemo session today, but they actually had to push it back a few days because his blood counts were looking pretty rough. He did receive a transfusion, which has helped him feel a bit better physically—but mentally? Not so much. 😢

Are you giving him any juice blends—maybe carrot, apple, lemon, and honey? My husband’s red blood cell count shot up like crazy after we started doing that...
And honestly, some bacon and popcorn can work wonders for white blood cells too.

Terry Lopez18, I am so incredibly sorry. Reading your words honestly gave me chills. 😢😢😢

Rachel Williams, thanks—that’s actually why I mentioned earlier that I assumed the monitoring protocol would be identical for every CA case. :-)

Our doctor didn't mention a second line of treatment at all—even though, from what I understand, there are really only two options available for small cell lung cancer. Generally speaking, if a patient returns within six months of their last round, they move to the second line; if it's been more than six months since the last one, they typically cycle back to the first.
Dammit, without a follow-up CT scan, they’ve already decided she needs to switch to the second line, but I can't help but wonder why...

Basically, if the imaging after the fourth cycle shows any progression, then yeah, she moves to the second line. If there’s no sign of progression, she stays on the first. Once all the cycles are finished, there's another round of imaging, and then they usually do check-ups every three months—if I remember correctly—maybe even more frequently. From there, you just monitor everything, and it plays out exactly how the others described it. I believe that's the standard protocol for everyone.

Robin Diaz4 said:wearyskipper20, hang in there—I really hope they can get her pain under control soon...
My dad finishes his first round of chemo next week, and then it’s just the waiting game until he gets his CT scan. Honestly, the one thing keeping my spirits up right now is seeing how well he manages to bounce back after each session, even with those occasional setbacks from anemia. The doctor did bring up the possibility of radiation or moving to a second line of chemo during today's appointment. In the meantime, I'm still deep in the weeds researching clinical trials...

I don't quite get one thing, though... Why would the doctor be anticipating the need for a second line of treatment already?
I completely understand why you'd want to be prepared for every scenario, but I think I see where the doctor is coming from too.

Rachel Williams said:Beets, apples, carrots, honey, and a splash of lemon juice—just toss it all in the blender and have a little bit every single day. That was our go-to recipe to boost iron levels back when my mom was going through chemo. It worked then, and it works now—she actually ended up with better blood work than I did.

I couldn't agree more!!

wearyskipper20, hang in there!

We finally got the Ondantor

Robin Diaz4, honestly, that behavior is just classic guy stuff—you know, if you want to call it anything other than being childish. My partner is exactly the same way, and it always brings back those memories of my own childhood mishap. I remember falling and completely breaking my nose, from the tear duct all the way down to the bridge. While everyone else was busy scrambling to grab the car keys, I just stood there, watching the bleeding stop for a second, and calmly told them, "We don't even need to go anywhere now; the bleeding has stopped," haha.

We officially kicked off our fifth round of chemo yesterday.
This time around, the side effects hit almost immediately—we're talking full-blown nausea by the same day, and then there was the vomiting in the middle of the night. It's reached a point where even taking the Reglan or Peptol doesn't seem to touch it anymore.
Does anyone have any insight into what might be causing this sudden shift?

Robin Diaz4 said:I just wanted to check in—my dad starts his final cycle before the CT scan next week. As of now, the primary tumor is holding steady, and the metastases actually seem to be shrinking compared to the last check. I’m honestly a bit lost on what comes after this fourth round of chemo, though. Does he move straight to a second line of treatment? I don't quite grasp the protocol... it's unlikely the cancer will fully vanish, and truthfully, my dad is having a harder and harder time tolerating the cisplatin.

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Once the fourth round is done, they'll evaluate everything based on the CT results and decide how many more cycles he needs to undergo.

Usually, they move to a second line if things start growing again within six months of his last chemo session—though, technically, it counts as the first line again if it resurfaces after that six-month mark. :-)

Getra, Jane, thanks

I wasn't looking at those measurements from a strictly mathematical standpoint—it was more about trying to get a real sense of the actual scale of things.

I did save the CTA scans onto my computer, but honestly, looking at them is just a total headache 🙂

The doctor was absolutely thrilled with the results, and I have to admit, my ego got a little boost from that—mostly because I’d been insisting from the very beginning that the overgrowth wasn't actually a target. :D

I'm mostly just trying to parse through everything myself since I didn't join him for the last doctor's appointment, so I don't have all the specifics of what was said.

There are just two more rounds of chemo left, and then I am finally done.

The CTA results just came in:

LDH dropped down to 203—it was nearly 290 before this.

I’m a bit confused... what exactly is a small omentum? Looking back at the first CTA report, there wasn't any mention of lymph nodes except for the one in the abdomen, and even that isn't mentioned here. Is it possible they're talking about the same thing?

And those stubborn little nodules in the lungs haven't moved at all. Not even a millimeter. Could it be something else entirely? Does the fact that they haven't budged mean those cells within the lung have somehow become resistant? Or could it be something else... maybe just scarring? Or some lingering inflammation?

What kind of next steps might they take regarding that adenoma?

I’m going to try to be a bit "mathematical" about this—if we look at the dimensions as length x width x height (depth), it actually looks like it has shrunk significantly in length, but by about 2 cm in both width and depth.

What specific questions should I bring up with his doctor tomorrow? We're heading into our fifth round of chemo now.

And honestly, he’s been incredibly irritable lately—we've been bickering over the most trivial things for the last two days.

Angela Wright said:This might be helpful for some of you.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't started recruiting patients for this study here in the States just yet—but they'll be opening up sites in Small Town, USA, at Catholic Health Initiatives, and also over at the Mayo Clinic. It might be worth checking in to see when they go live so you can try to get in on it.

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I actually just looked into this. He isn't currently taking Topotecan, and unfortunately, the study is specifically for those who have used it previously :-(

I’m going to spend some time over the next few days really digging into the details of this. I noticed Dr. Smith is heading up the study in New York City—it's possible his doctor might be involved in a similar trial as well.

Angela Wright said:I thought this might be helpful for some of you.
https://clinicaltrials.gov/ct2/show/...ow_locs=Y#locn
They haven't actually started recruiting patients for the study here in the States just yet—but once they do, I know there will be openings at sites in Small Town, USA, Catholic Health Initiatives, and the Mayo Clinic. It might be worth checking in with them periodically to see when they open up so you can try to get yourselves enrolled.

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Thanks, Angela :-)

dustyscout8 said:So, ruggedfox11—is radiotherapy something you can get at other hospitals too? Is it just that radiosurgery is where they charge you an arm and a leg? I’m honestly a bit lost here—isn't that just chemotherapy? And does radiosurgery basically mean surgery? I feel like I need to sit down and really study all these terms properly...

Think of it this way: radiotherapy is radiation treatment, whereas radiosurgery is essentially an operation. :-)
To clarify—you can receive radiation therapy at a local hospital through Medicare, or even go to New York City for laser removal via Medicare coverage—it's just that, frankly, paying out of pocket privately doesn't make much financial sense for us.

Robin Diaz4 said:I actually had the same thought regarding this kind of "withholding" information. It’s almost as if they think they're being empathetic by not letting any of us know the full truth...

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It was actually because of something exactly like this that I ended up firing my doctor—and honestly, he wasn't even in the wrong. Before we had an official diagnosis, his brother and sister-in-law flew in from Europe and told me they already knew what was going on. Apparently, they had heard through some connection involving his close friend, and they claimed his doctor was intentionally keeping me in the dark just so I wouldn't "lose it," given that I have a young child to look after.
I marched straight into the doctor's office and let him have it. I demanded to know who gave him the right to lie to me—reminding him that I am not some fragile child who needs to be shielded from reality. Even worse, I questioned his right to discuss a patient's private medical status over the phone with someone he couldn't even verify was actually family.
He tried to explain that it wasn't a lie—and technically, it wasn't, since he had shown me every single test result himself prior to that conversation—but rather that they simply don't disclose the full extent of things unless specifically asked. They do this because they can't gauge a person's psychological stability, and they leave it up to me to decide how much my husband should know.
Later, when a different doctor (and eventually his primary specialist) admitted him to the hospital, the very first thing they asked me was how much my husband actually knew.
As it stands, he only knows there is lung cancer. He hasn't really cared about the details, other than asking how many rounds of chemo he'll need to go through.

I was just re-reading the message from the Mayo Clinic—honestly, their pricing actually seemed somewhat reasonable—where they mentioned that, as a rule, I’m not really a candidate for surgery or radiosurgery right now. They suggested that once the chemo is finished, we’d need to sit down and decide on radiotherapy, which at their facility would be $14000.
Well, that’s definitely an option (and something we’ll absolutely revisit after chemo) regardless.

My Plan B is totally falling apart here :-( :-( :-( :
Why is nobody willing to touch the bronchi?!
Or are there specific requirements regarding the size and placement of the tumor? I assumed the location wouldn't necessarily be an issue?

I guess I’m living proof that trying to plan out all these "what if" scenarios is a losing game.

Robin Diaz4 said:My dad is using a patch—I think it’s 75 micrograms?—and while it didn't help much at first, he's actually feeling less pain with every chemo session. He uses the patch plus a pill that lasts about 12 hours. In the beginning, he was popping Sevredol like they were candy, but for over a month now, he hasn't needed a single one. It's worth noting that for months before his diagnosis, he tried all sorts of different pain medication combinations and nothing seemed to touch it. They just kept increasing the dosage of the patch until they hit a level that actually worked. Through a friend, my dad actually got connected with an anesthesiologist who would come to the house to manage his pain therapy—I can't recall the doctor's name right now, though, but I can look into it.

I have another silly question because I was really shaken up today... is it actually possible for doctors to falsify results just to avoid upsetting the patient or the family? Is that even legal? My dad's union rep told me that they knew they should write on the follow-up CT scan that the disease was stabilized, even though it's actually progressing, just so the patient and the family wouldn't get distressed. Honestly, that really upset me. Does this mean there's a chance I won't even know what kind of state my father is truly in? I can probably make sense of an X-ray if I try, but the abdominal ultrasound results (where they wrote that the targets are in regression) are just blurry spots on paper to me until I can look at them more closely tomorrow. As for the CT scans... I have no idea what those even look like, let alone how to interpret them.

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Don't worry—families don't typically read the raw medical reports themselves; instead, those findings are passed along to specialists. If they were to "cover things up" by writing incorrect statuses on the reports, the attending physician might prescribe the wrong treatment, which opens them up to massive malpractice lawsuits.
That said, you can always seek a second opinion if you genuinely feel they aren't being honest about the results.

dustyscout8 said:ruggedfox11, I am keeping everything crossed for you this Wednesday!!!

Ugh $14000...what can I even say? There is just too much to process. Honestly—if only we could actually reach back into those massive piles of money we’ve been paying into our health insurance premiums every single month. If only the system worked that way...

The real question is whether we’d find anything left inside after they've spent every last cent :-)

We still have one backup plan left, though—laser removal.

It’s going to turn out okay, I know it—I can just feel it.

We went in yesterday for a follow-up CT scan—fingers crossed everything comes back looking okay in the middle.

I heard back from the Mayo Clinic regarding the procedure, and they mentioned his intervention is $14000
Honestly, it’s not quite as extensive as I had anticipated it would be.

gentlenomad43 said:Do you think this is the end of our fight? 😢

Thanks for the recommendation for the forum—I’ll definitely register there as well and post my question.

Neeeee, I don't think it's the end—God forbid. I don't know much about lymphoma myself—since we're dealing with a different type of cancer—so I can really only offer moral support. :-)

It’s a forum similar to this one; you’ll find way more experiences, stories, and fellow fighters. Personally, I learned quite a lot from being part of those communities, and everyone is genuinely willing to help. :-)

What I have gathered from being here is that you just have to live one day at a time—not look too far ahead or get caught up in the future. It’s hard enough at the beginning, and I imagine it gets even harder if things take a turn for the worse, but I am hoping—for my own sake and for all the other fighters out there—that things won't go down that path.