Support for families dealing with cancer and other serious illnesses (Part II)

Michael Cruz28 said:Has anyone here had any experience with the Pimezon clinic and Dr. Samia?

In my opinion, private clinics that charge a premium just to provide an opinion aren't really there to treat you. If you're looking for a second opinion, you can usually find one through a specialist covered by the Social Security Administration without all that extra cost.

Michael Cruz28 said:Has anyone tried the Rudolf Breuss total therapy?

Honestly, I’d steer clear. It’s best to avoid those "miracle" alternative therapies; there's just no real evidence behind them, and they can sometimes do more harm than good.

Thanks a ton, Richard Sanders7!

Hey there,
My Mom just got some partial results back from her bronchoscopy at Jordanovac. They confirmed a malignant tumor in the upper part of her right lung. As for the left lung, they couldn't quite figure out what's going on over there yet. Next steps are heading to Medikol Clinic for a PET Scan and then another bronchoscopy on the left side.

They claim this is currently the top clinic in Germany.

http://www.helios-kliniken.de/klinik...bszentrum.html

Check it out—they even won an award for 2015.

http://www.helios-kliniken.de/filead...ungenkrebs.pdf

(I’ll be honest, I'm a bit of a skeptic when it comes to awards. Could just be clever marketing? Fingers crossed it isn't.)

I’d love to hear from the "pros" here. Is this a solid choice? And what are the best options outside of Europe?

Thanks!

Michael Cruz28 said:Hi everyone,
My mom just got some partial results from her bronchoscopy at Jordanovac. They confirmed a malignant tumor in the upper part of her right lung. As for the left lung, they couldn't determine exactly what's going on there yet. The next steps involve a visit to Medikol Clinic for a PET Scan, followed by another bronchoscopy on the left side.

They claim this is currently the top clinic in Germany.

http://www.helios-kliniken.de/klinik...bszentrum.html

They even won an award in 2015.

http://www.helios-kliniken.de/filead...ungenkrebs.pdf

(I'm a bit of a skeptic regarding awards—could be marketing, but let's hope not.)

I'd love to hear from the "experienced" folks here. Is this a solid choice, and what are the best options outside of Europe?

Thanks.

I think you should wait for the final cytology report (and potentially the EGFR mutation status) along with the PET/CT. Once you have those, you can determine the stage of the disease and tailor the treatment to the specific tumor type. It might not even be necessary to seek treatment abroad, since all the medications are available here in the States (though not everything is covered by Social Security Administration).

Ethan Roberts23 thanks for the advice.
What exactly is an EGFR mutation status finding?

Do I need to ask for this separately, or is it just part of the standard testing routine?

Best,

Hello everyone... I follow along with your updates and read everything you post, and I want to wish you all nothing but the best of luck in your ongoing battles.
Not too long ago, I wrote about colorectal cancer and how my father was essentially written off by his doctors. I also shared my anger and frustration toward the surgeon who dismissed him so easily. Well, our fight continues... the pH results just came back, and they are significantly better than we anticipated. We’re looking at chemotherapy and a Dukes C. classification. It’s funny how much that "C" weighed on us. Based on the initial prognosis, we were bracing ourselves for Dukes D, and we hadn't even allowed ourselves to consider anything else. So, this was quite the positive surprise. A lot has happened since my last update. The wound he had when he first came home became heavily infected, and things took a turn for the worse. We were so close to sepsis that the visiting nurse mentioned the site was actually starting to look greenish. He was in absolute agony from the infection. We eventually sought a second opinion from a different surgeon, who is now treating the wound by injecting antibiotics directly into it. His condition improved noticeably after that second approach. Regarding the metastases, this new doctor’s take is that things aren't as bleak as previously thought and that there is still plenty of ground to cover. When we presented him with the original hospital prognosis, he seemed genuinely surprised and simply remarked, "Unfortunately, that was just them playing it safe." And there you have it. We are moving forward with a much more positive outlook, holding onto the hope that Dad will be with us for several more years.

Right side cytology: Blood, bronchial epithelial cells, and some individual or small clusters of larger malignant cells showing adenocarcinoma morphology. Immunocytochemistry is scheduled next!
Brush D: Bronchial epithelial cells, blood.
Left side cytology: Blood, reactive bronchial epithelial cells, neutrophils, and macrophages.
Brush L: Bronchial epithelial cells, blood.
Microbiology test on May 22, 2015: Acid-fast bacilli negative.
Aerobic culture on May 22nd: Polymorphonuclear: 0; squamous epithelial cells: CONCLUSION
Bronchoscopic analysis confirms adenocarcinoma in the right upper lobe bronchus. No malignant cells were found on the left.

Hey everyone, how bad is this looking?

It’s been confirmed that adenocarcinoma cells are present. This means the individual is dealing with adenocarcinoma, which is definitely a tough diagnosis to face. How much of a challenge it becomes really depends on how far the disease has progressed at this stage.

Michael Cruz28, they’ll most likely run a bone scan and a PET Scan to figure out how far this has spread. Either way, they’re looking at surgically removing that slice of tissue, and radiation or chemo is definitely on the table—depending on the stage and whether there are distant metastases or not.

Robert Newman3 said:Hello everyone,

My father-in-law (65 years old) recovered from a pulmonary embolism four months ago. Since then, he’s been following up with doctors, taking blood thinners, and wearing compression stockings. During those follow-ups, various Ultrasounds and CT scans were performed, and everything seemed fine—except for his white blood cell count, which was around 25 (though it eventually dipped slightly to about 20 or 22). Recently, one side of his neck started swelling, and during a routine blood check, he was hospitalized. A CT scan revealed a 10cm mass that wasn't visible four months ago. The doctor said it's a chest tumor and quite aggressive. Apparently, it's pressing against veins, which is causing the swelling in his neck and a bit in his arm.
They performed two biopsies (neck aspirates), but they couldn't identify the specific type of disease. Now, they need to run a third analysis (FISH), which requires taking a larger tissue sample.
Also, a bone marrow biopsy was done at the local hospital from his sternum. The results aren't back yet, but they've hinted that things don't look good.
This was supposed to happen last Friday, and then again today, but nothing has happened yet. The doctor says it's out of his hands; it depends on when the colleagues from ENT call the patient in.
In the meantime, the man is just lying there in limbo. They have him on antibiotics and corticosteroids, which helps reduce the swelling quite a bit, along with some other meds, but since they don't know the exact diagnosis, they can't start the "correct" targeted therapy.

Does this process usually take this long? Does anyone have advice on what we should be doing, or do we just have to sit here day by day, waiting for news?😢
It's incredibly hard for the patient to endure this, and just as tough for the family.

The doctor mentioned the FISH analysis takes a few days...

From where I'm standing, this all feels painfully slow. As a layman, I don't fully understand it... going from almost nothing to a 10cm mass in just four months, followed by biopsy attempts, more waiting, and more waiting...
I don't know what to expect. They say it isn't looking good, but they won't give specifics. We are just hoping my father-in-law can still live a long life and overcome these hardships...

Sadly, my father-in-law didn't make it. The metastatic carcinoma was too relentless and unbeatable, especially with such a drawn-out diagnostic process. Neither radiation nor chemotherapy helped at all.
My thanks to everyone on the forum who offered advice or shared their experiences.

Best regards.

Robert Newman3 said:Sadly, my father-in-law didn't make it. Metastatic cancer is just a brutal, unbeatable beast, and by the time we got the full diagnostic picture, it was already too late. Neither radiation nor chemo did a single thing to help.
I want to thank everyone here on the forum who helped out with advice or shared their own experiences.

Best,

I am so sorry 😢
Please accept my deepest condolences.

Thank you.

It’s me again. 😢 My mother-in-law's condition following her 9th round of Temodal (it’s GBM, after all) was actually more than satisfactory. She’s been on Dekson for about 2.5 months now—8 doses at 3 times a day, so 12 mg daily. Her appetite came back, the pains in her knees, arms, and legs vanished, and her blood sugar stayed within normal limits the whole time. We had the 10th cycle of Temodal scheduled for June 10th, but for the last 3 or 4 days, she’s been complaining of intense pain in her pelvic area. The doctor recommended Analgin and Apaurin as needed, up to 3 times a day (though since she takes Xanax, Apaurin is off the table), but honestly, it feels like she needs them more often because the painkillers wear off in just a few hours and the pain rushes right back. Her primary doctor isn't on duty until Tuesday, so we have to wait; we’ve been waiting since Friday (that's just how the procedure works here). The only instruction is to head straight to oncology immediately if she develops severe headaches, vomiting, bleeding, etc. As for her mental state, I don't even want to go there. Even when she was doing perfectly fine, she would experience brief bouts of forgetfulness, inserting nonsensical words into sentences, losing focus, and mood swings ranging from extreme sensitivity and crying to aggression and snapping at us. Right now, she’s just yelling and taking it out on everyone; she keeps saying she’s going to die soon and things like that. It's a similar situation to what happened before her first surgery, except this time there’s no vomiting or headaches. I just don't get this constant waiting for advice or doctor appointments. You'd think they could just handle everything over the phone...
Last month, we had to deal with some bleeding issues. She was taking Nizon at the time to boost her platelet count. We aren't entirely sure if the bleeding was vaginal or just hemorrhoids, but the on-call doctor and an oncology nurse reviewed her blood work, gave her two tablets to stop the bleeding, and told her to keep taking the Nizon and check in with her regular doctor in four days once she returned from vacation.
And honestly, trying to take her to the ER, Urgent Care, or even a GP is like watching a horror movie. The second they glance at her diagnosis, they basically say:
"Well, ma'am, she's not for US!"—as if she has the plague and they've already written her off.
I apologize for the long post. I am fully aware of the diagnosis and the nature of the disease itself, but the attitude from the doctors—both at oncology and everywhere else—really hurts. I just don't want her to be in pain; at the very least, I want her to be spared from that kind of treatment.

Robert Newman3, you have my sincerest condolences! 😢

Elizabeth Fisher13 said:I just wish she didn't have to be in pain—at least, I'd love to see her avoid that part.

The only way you all can actually help her is by being more assertive—maybe even aggressive—by constantly hammering home her right to the best available care, support, and pain management. You have to shove those rights right under their noses. Make them do their damn jobs.

Elizabeth Fisher13 said:Robert Newman3, please accept my deepest condolences. 😢

Thank you. I'm wishing nothing but the best for your mother-in-law and your whole family!!

Robert Newman3, please accept my deepest condolences. I am so incredibly sorry for your loss.

Angela Wright said:Honestly, you’re the only ones who can actually help her by being more assertive—maybe even a little aggressive—by constantly demanding her right to the best available care, assistance, and pain management. Just keep shoving that right in their faces. Make them actually do their jobs.

Well, we took your advice. We went to the oncology department, and the nurse gave her palliative care paperwork, some Trodon for the pain, a few pointers, and an MRI is scheduled for soon. Her condition is a bit more stable now regarding the pain, but mentally? It’s hit or miss. Like I mentioned in the GBM thread, it fluctuates constantly. It goes from her being fully conscious to semi-conscious, and then just a total shutdown. At night, she’ll wake up and wander into the kitchen to urinate in pots and pans because my father-in-law forgot to lock the hallway door. She’s staying with him right now. She keeps stealing sweets, so we have to hide anything containing white sugar from her. She has a great appetite thanks to the Dexon, but her head has become completely deformed from them. Her face is so swollen.
Thanks again for the advice, and to everyone else on these forums, I truly wish you all the best. Sometimes I don't even recognize myself; I don't understand where I get this much strength and courage to fight. She’s my mother-in-law, and it seems strange to everyone else how hard I’m fighting for her. I lost my own mother when I was only 17, without having a single day where I could actually do anything to help her. But for my mother-in-law, I am fighting with everything I have left in me. As much as I possibly can.

Elizabeth Fisher13 said:... but her face is completely deformed because of them. Her whole face is just swollen.

That’s what they call Cushing syndrome. It’s a metabolic breakdown where fat starts depositing in the face and the torso.

Thanks again for all the advice and to everyone else on these forums—wishing you all the best from the bottom of my heart. Sometimes I don't even recognize myself; I don't understand where this level of strength and grit comes from. She’s my mother-in-law, and honestly, people think it's weird how hard I'm fighting for her. I lost my own mother when I was only 17, with absolutely nothing I could do to help her. But for my mother-in-law, I am fighting with everything I've got, as much as humanly possible.

None of us truly realize our own inner strength until life slams us with situations like this. Humans might be fragile creatures, but we are also incredibly resilient animals capable of adapting to anything. Maybe it’s only after everything settles down that we realize we’ve been enlightened on certain things. For example, I’ve turned into a total hypochondriac.

The fourth round of chemo really knocked my father-in-law sideways. He says he’s feeling incredibly lethargic lately. He’s also complaining about this discomfort near the surgical site from his operation—apparently, whenever he tightens his belt, he has trouble breathing, which wasn't an issue before. On top of that, there’s this pain in his abdomen, though he hasn't quite realized yet that it's actually a metastasis. If there is one silver lining, it's that he isn't losing weight; he's maintaining it and eating normally.
The whole breathing situation has me worried; I can't help but fear it might have spread to his lungs.
He’s also still dealing with a persistent Cough and phlegm, and even he admits that something isn't right.
I try to play the calming role, suggesting it might just be the side effects of the chemotherapy—and honestly, the fatigue and weakness are definitely part of it—but deep down, I’m terrified it’s something more serious.
He starts his fifth round this Tuesday, followed by a check-up with his doctor. Once he finishes the sixth round, they’ll finally schedule a PET Scan to get a clear picture of where things stand.
This month marks exactly one year since the diagnosis. I am holding onto the hope that he lives long enough to see his grandchildren arrive—his daughter-in-law is due in two months, and I’m expecting mine in December—and that he gets to enjoy them, even if just for a little while.