Posts by darkmaker70

Daniel Cooper40 said:Hm, they call me, but I haven't tried emailing yet. Which number are you calling? Most orders come in between 1 and 2 PM, so that’s probably your best window to try.

Was that experience specifically with gastro, or just a different department?
I'll definitely give it a shot around then. Thanks.

I’ve been trying to schedule a gastroenterology appointment for my mother for over a week now, but I can't get anyone to respond. I keep sending follow-up messages, but it's just radio silence.
Of course, nobody picks up the phone either.🙂
Is there any way to book an appointment without showing up in person? That isn't really an option for us right now...

Thanks so much for the reply. That website you mentioned is great—really informative and easy to navigate.

If I'm understanding this correctly, the PET CT can only be done at the Medikol clinic over on Vinogradski Street.
And if an oncologist makes the recommendation, does Medicare cover it? Meaning, is it free for the patient?
I'm worried our oncologist won't even give us a referral. He barely says two words when we're there, no matter how hard I try to get information out of him... Is it possible to go without a referral, and if so, what would the cost be?

Regarding the Avastin you mentioned, no one has ever brought that drug up to my mother...

My mom was diagnosed with colon cancer last spring. She had surgery shortly after to remove that section of her bowel, which went well. The biopsy came back as Dukes C.

She finished 7 cycles of chemo and 25 radiation treatments. Honestly, the side effects weren't nearly as bad as we feared, though she did lose quite a bit of weight and struggled with digestion—mostly frequent diarrhea.

Now she’s following her oncologist's follow-up schedule: lung RTG, abdominal ultrasound, CT scans, and tumor markers. So far, everything looks clear.

BUT, what I’m really trying to figure out—and I hope someone here can clarify—is whether there’s a specific test that can definitively show what those tumor cells are doing? Like, is it truly dormant, or is there any sign of spreading? And if so, where would we even go for that?

Apologies in advance if this has been covered already. I know people have likely discussed this, but between looking after a tiny baby, my free time is pretty much non-existent.

Me again regarding the CT verification... I don't get why she still has the referral, or what the deal is with this "investigation" nonsense and bringing up surgeons in the first place... If only I could have been there with her.😢thanks slyseal28 once again!

Thanks so much for the reply... does this mean she actually went through with the CT verification without even realizing they marked her up? (She seemed pretty confused yesterday, and since her mother-in-law didn't go inside with her, we aren't even certain...) or is it something else entirely?

They marked her backside, two squares on the side and one right in the center... it’s honestly hard to even wipe that area without noticing, it's so awkward... and they didn't tell her how many sessions she'll need to go in for.

To be honest, looking at our Secretary of Health, the bureaucracy... it’s enough to make you sick.

I’m hoping to get some advice here.
My mom just finished her first round of chemo at Mayo Clinic (following the Mayo protocol) after surgery for colon cancer. So far, thank God, she hasn't had many side effects from the treatment itself...

On Wednesday, they called her from Radiology. They told her to come back on Friday with a referral from her primary care physician for radiation and a CT verification. Mom is certain that's what they said—she even wrote it down immediately so she wouldn't forget...

I couldn't go with her yesterday; my mother-in-law went instead, and frankly, the whole experience sounded bizarre. They could barely find the department; apparently, it's tucked away in some basement with endless hallways, and even the nurses didn't seem to know exactly where they were supposed to go. Once they finally found the right spot, they were told that the referral for the CT verification was wrong—that a primary doctor can't issue it, it has to come from the surgeon who performed the operation. Mom insisted that's exactly what the nurse told her over the phone, which left everyone confused. In any case, they marked the area for radiation and sent her home. When I saw her later, she looked completely defeated. She’s in a bit of a fog because they told her not to wash off the markings, but radiation doesn't start until July 7th—so how is she supposed to stay clean until then?!

Also, what exactly is this "CT verification," and who is responsible for ordering it?

Thanks🙏

Nancy Hernandez43 said:The body needs quite a bit of time to recover from the shock of major surgery. It’s not exactly comforting, but even a year later, my mother still deals with digestive issues—though apparently, that's just considered "normal" and nothing to worry about. Things should stabilize eventually; the main thing is that her bloodwork looks good, her markers are under control, and she's handling the chemo well!

Hang in there. Sending love.

Thanks. Today at the Mayo Clinic they confirmed her markers are fine, and radiation starts this Friday. We heard there's usually a long wait for radiation, so we were surprised since it hasn't even been a month since the surgery. Fingers crossed she handles this part okay too. Does anyone know what kind of side effects to expect from radiation?

My mom started her chemo yesterday. Thank God she didn't have any major issues yesterday or today; just some digestive trouble, though that’s likely from the major intestinal surgery. I'm hoping it's just a matter of giving everything time to heal...

The standard blood work looks great, and we got the tumor marker results back today. As far as I can tell, they look fine too. We're staying optimistic!!!

shadowmason6 said:darkmaker70 did you see the PM I sent you a few days ago?

Just saw this now. Sorry, I replied!

feralwolf24 said:Just a little encouragement regarding Dr. Juretica. As far as humanity goes, he’s a total failure. What can I say? We went to see him and it was all just mumbling under his breath; he barely speaks, and when he does answer a question, it feels like he isn't even answering. Eventually, he stepped away to consult someone and came back to tell us my husband doesn't need chemo or radiation. I started feeling hopeful, only for him—right in front of my husband—to wave his finger at me and finally speak clearly, explaining that not needing chemo doesn't mean everything is fine, that the cancer could return tomorrow, and that chemo wouldn't have helped much anyway. He basically told me there was nothing to celebrate. All of this, right in front of my husband. I honestly felt like throwing him out a third-story window. I stayed quiet because I was afraid of what he might say next, especially with my husband sitting right there. The next time we visited, he just took the lab results and transcribed them. He didn't even invite my dear husband inside or ask him anything. I caught him in the hallway while he was handing over the papers; I mentioned my husband had abdominal pain, and he just brushed it off, suggesting some stomach tablets. When I corrected him and said it was pain near the navel, not the stomach, he just dismissed it. To top it off, I saw on the report that the patient "feels subjectively well." How did he assess that? He barely exchanged a word with us. Maybe he judged by scent?
All in all, through some coincidence, I met some people who work at Mayo Clinic, and they all hold the same view regarding his expertise. They say if he isn't the best oncologist in the country, he's certainly one of the best—even if my own experience suggests otherwise. Of course, I can't question his medical knowledge or expertise with my own ignorance, but his bedside manner is absolutely bottom-tier.
Hang in there!

Thank you for sharing this. It was a bit comforting, and I completely agree with your last point. That’s exactly how it felt to me. The worst part is when doctors refuse to even look at their patients or speak to them... it's as if they're signaling that these people are already written off and shouldn't bother fighting. That is fundamentally wrong, and if that's their attitude, they shouldn't be in this profession at all.

shadowmason6 said:I have two quick, practical questions:

Does the referral for marker testing come from a primary care doctor or an oncologist?

Does anyone know if the tumor clinic accepts blood work done at outside labs? Also, which specific tests do they actually require?
The lady on the phone was far too busy to give me a straight answer—seems like they’re drowning in work over there. My nutritionist suggested I try this approach just to see if we can speed things up.

Thanks!

Our primary care doctor handed us the referral for the markers, but as for the oncologist's order—that was just noted in my mom's medical records. For your second question, I honestly wouldn't know.

I wanted to check in and see how your mom is doing. Since they both had surgery just a few days apart... mine actually seemed better right after her procedure than she does now. She’s barely eating, and she’s struggling with constipation—says she feels the urge constantly, but then nothing happens when she gets to the bathroom.

One more question for the group—has anyone here actually used Prosure? A friend of mine, whose husband is battling stomach cancer rather than colon cancer, mentioned he’s taking it alongside his chemo and radiation cycles. Apparently, their primary care physician was the one who recommended it.
I checked with Mom's doctor yesterday while I was picking up her referrals. I made sure to mention that an oncologist recommended it first—I figured he’d give me a hard time if he thought I was just following internet trends. He ended up brushing me off anyway, though. He insisted the oncologist needs to list it under the diagnosis since he's the one in charge and can't just write a prescription on a whim.😕Seems like total bullshit and a waste of taxpayer money to me. My mom hasn't even seen a doctor in years, so I guess she’s finally entitled to some help now that she's actually sick.
We'll get it for her, of course—assuming they don't require a prescription. Has anyone here actually dealt with this before? I'm also open to other recommendations if you have them.

Angela Wright, a special hello to you. 🙏 I've spent more time scrolling through the forums lately, and I have to say, I'm genuinely moved by your selflessness. Your courage and that drive to help anyone you can—whether through advice or just being there—is really something.

shadowmason6 said:Ever since my mom got her diagnosis, my head has been a mess. I just keep scrolling through forums and news sites, running through every possible scenario, wondering what comes next... It’s a constant cycle of bad moods and those moments where I try—and fail—to push this awful reality aside...
I come to this forum to recharge because everyone here is going through the same thing (or, unfortunately, even worse) and fighting bravely (and I mean you too, Nancy Thomas18!!! 🙂)

Lost in all the chaos, I realized I forgot to check in after Mom's surgery... the procedure was on May 16th, and she was already home after eight days. She's recovering well.
Unfortunately, the pathology report isn't good. Five out of nine lymph nodes were affected. 😢 😢 😢 Mom doesn't know about the results yet, but I can't hide them for long; we need to get to MD Anderson as soon as possible for further treatment. Watching her walk around the house, laughing at my husband's jokes... I find myself wishing I could just ignore the findings entirely. I've decided to break the news to her this weekend; I'm terrified it might crush her. Even more, I'm afraid the oncologist at the clinic will just drop a grim prognosis in her face. I want to avoid that at all costs, but I don't know if it's even possible (???) so I'm dreading everything until Tuesday.
Since Mom only has about 30 cm of colon left and is dealing with frequent bowel movements (which we're trying to manage via a grain-based diet), and it's only been 16 days since surgery—could anyone share their experience with immune supplements? Specifically raw propolis and beta glucan, as those seem to have the best reviews.
Right now, she's only taking raw propolis (her nutritionist thinks it's too early for beta glucan), but honestly, I'd love to just give her massive doses of everything all at once. 🙂 Someone else mentioned taking 15 tablets of raw propolis a day (which is almost four times the recommended dose), so I wanted to ask those who know better—could that cause damage to the stomach, intestines, or surgical site???
When did your loved ones start taking supplemental treatments after surgery, and at what dosages based on your experience???
And finally—cheers to all the fighters!!! Nancy Thomas18, you hear me!? 🙂

Hi everyone, especially you, shadowmason6... I've been dipping in and out of this thread. I haven't had the time or the courage to read everything, but I see our situations are very similar.
My mom had colon surgery on May 12th at Mayo Clinic (did you say where your mom had hers?). The surgery went well, and they didn't need a colostomy bag. At her follow-up to get the stitches out, the surgeon said everything went perfectly and they removed everything that shouldn't be there... then, two days ago, the pathology came back showing Dukes C, with tumor tissue found in 1 out of 15 lymph nodes... My mom is 74, so she isn't young, but her spirit is so youthful, so bright, and she cares so much for everyone except herself... I just can't believe something like this is happening to someone so kind and wonderful. I know terrible things happen to young people too and I understand how it works, but she's my mom, right!?

We saw the oncologist today (Dr. Juretić, who I honestly can't quite wrap my head around—he just muttered under his breath and gave us these incredibly vague answers, acting completely indifferent👎). He prescribed chemotherapy and radiation...

My dad is quite ill; he’s been battling Parkinson’s for about ten years now, so he’s very limited in his mobility and essentially helpless. I'm an only child, and I have a little (absolutely precious😍) 9-month-old baby who takes up most of my energy and focus. My husband works all day long... we aren't exactly having it easy, but we manage. We have to.

I just wanted to say how glad I am to have found this group. Wishing you all nothing but the best. Talk soon.