Support resources for families dealing with cancer and other serious illnesses

Could someone offer some insight regarding lung cancer? Basically, there's a massive buildup of fluid in the lungs, making it impossible for the patient to move without oxygen. The doctors seem to only be draining tiny amounts at a time, and they haven't explained why they aren't removing more to actually help with the breathing. Does anyone happen to know why this is? Apparently, a chest tube isn't an option either, though no explanation was given for that. They're just providing pain meds and "breathing injections." I guess thanks in advance to anyone who might know something...

stormygardener34 said:Can anyone offer some insight regarding lung cancer? We’re dealing with a massive buildup of fluid in the lungs, and it’s gotten to the point where the patient can’t move without gasping for oxygen. All the doctors are doing is draining tiny amounts through punctures, and they won't explain why they aren't just clearing out a larger volume to actually make breathing easier. Does anyone know why this is happening? They say a chest tube isn't an option, but again, there’s zero explanation provided. They just hand out painkillers and "breathing injections"... Thanks in advance to anyone who knows something or can shed some light on this...

From what I understand, performing a puncture can actually trigger an even larger effusion. There really isn't much choice other than tapping out what you can and relying on diuretic therapy, like using Fursemid or Lasix, to draw the fluid out. As for why a drain isn't possible, I honestly have no clue. You’ll have to press the doctors to give you a straight answer.

Morning. Anyone have any insight on whether cannabis oil actually works? Looking for Dr. Zivkov’s experiences or maybe Varumin.

Jesse Roberts79 said:Morning! Does anyone have any actual insight into using cannabis oil for treatment? Any experiences from Dr. Zivkov? Or maybe some rumors?

There just isn't a legal way to go about this kind of treatment. Clinical studies haven't established standardized dosages, and since it hasn't been legalized, there’s zero medical oversight or monitoring—meaning nobody is tracking how it might interact with other medications you're already taking.
Personally, I wouldn't touch those illegal channels. You can end up doing far more harm than good, both figuratively and literally.

Hello, everyone. Please forgive the novel; I honestly don't know how to make this any shorter. After spending over a year just reading through this and similar forums, I’ve finally reached the point where I actually need to type. This concerns my father. In late 2010, following high white blood cell counts and swollen lymph nodes, he was diagnosed with NHL (CLL/SLL). Shock and disbelief were the initial reactions, but I’m not the type to fall apart easily—I don't let demons like that knock me off course. So, after some sniffles and red eyes (we spent quite a bit of time lying to the neighbors that I was just battling a nasty allergy 😉), I rolled up my sleeves, organized my thoughts, and went to war against this thing. My dad completed two protocols of chemotherapy combined with Mabthera (I assume the specific names of the drugs back then aren't relevant now). Aside from a massive appetite, there were no side effects, thank God. His last chemo session was at the end of August 2011, and everything seemed fine during his regular hematologist checkups. Then, in late January 2012, Dad mentions feeling "strange in his head"—specifically, he's having nightmares. By early February, he starts mentioning tremors that wake him up; they are full-body shakes that he is completely conscious of, feeling much like a fever chill. That’s when the neurological workup began. Suspecting epileptic attacks, they started him on Tegretol. A brain MRI was performed in March, and the results led to an emergency hospital admission because of lesions on the brain. Consultations with hematologists and neurosurgeons suggested a high-probability leukemic infiltration of the brain, but the decision was made to perform a stereotactic brain biopsy. The first one was done on April 4, 2012. The PhD findings didn't show anything specific. A second biopsy on the other side of the head was scheduled for seven days later, and we have finally arrived at our current problem: the unofficial diagnosis (meaning a phone call between the neurosurgeon and the pathologist, as the official report isn't written yet) is glioblastoma. 😢The current reaction isn't shock or disbelief; it’s just emptiness—numbness and darkness. Forgive the long post, and please don't ask me to add a million more details currently swirling in my head; this is my first time stepping up to write.

Donna Harris18 said:The first PhD results from April 4th didn't point to anything specific. Then, just seven days later, they did a second biopsy on the other side of the head, and now we’ve landed on the current nightmare—an unofficial diagnosis (meaning a phone call between the neurosurgeon and the pathologist before the formal report was even typed up) of glioblastoma.😢My reaction right now isn't shock or disbelief; it's just pure emptiness—a total numbness, like everything has gone black. Please don't lecture me about writing novels or adding a million more details to this mess; this is the first time I'm ever dealing with something like this.

I strongly suggest getting your dad's tissue samples sent back from the hospital pathology department to an outside clinic for a second PhD opinion before any treatment actually starts.
Hit up Google and look for a specialist clinic in Germany, for instance. You can send them via DHL. We're talking about microscopic slides in a small box. Just file a request for a second PhD opinion. It shouldn't be a problem at all.

Hello everyone,
I happened to read in one of the previous posts that there are two specialists for sarcomas over at Memorial Sloan Kettering, but I couldn't seem to find their names listed. My cousin is facing an urgent surgery for a renal sarcoma, so I would be incredibly grateful if anyone could recommend who we should reach out to (whether it's at MSK or perhaps another major hospital here in New York City).
Thank you so much.

velvetsurfer71 said:Hey everyone,
I saw somewhere in a previous thread that there are two sarcoma specialists over at the Mayo Clinic, but I couldn't find any names. My cousin needs emergency surgery for a renal sarcoma, so if you could recommend someone to reach out to—whether it's at the Mayo Clinic or another hospital in Washington, D.C.—I’d really appreciate it.
Thanks so much.

It's either Dr. Šantek or Dr. Herceg at the Mayo Clinic.

Thank you so much, I truly appreciate such a quick response!

Angela Wright - how old are you? :-) I know you shouldn't ask a lady her age, but if it's not some big secret...? I'm only asking because it seems like you've dealt with a hell of a lot of this nasty stuff already...

Bradley Bishop32 said:Angela Wright—how old are you actually? :-) I know it’s usually rude to ask a lady her age, but if you aren't keeping it a secret... I'm only asking because it seems like you've dealt with a hell of a lot of this nasty stuff already...

Enough 😉 just like the experience

Just wanted to send a quick hello to everyone here and say I'm rooting for all of you to get the best possible results. Hang in there. 🙂

Hi everyone. My sister has bone metastases (from primary breast cancer), and her doctors are now considering putting her on Vinorelbine. Since her previous treatments—she’s basically tried everything under the sun—have "wrecked" her veins, even basic blood draws are an absolute nightmare for her. They usually have to poke her several times, which means she definitely needs to take something to calm down beforehand. Her oncologist mentioned that because of her vein condition, she might actually need surgery first to have a port implanted in her chest, since Vinorelbine is just so harsh on the vessels 😢. That was discussed this past Friday. I found out that Vinorelbine is also available in a tablet form called Navelbin, but they aren't available here; they aren't on the approved list, even though they act so similarly. I'm wondering, how does one actually get ahold of that specific medication? What do I need to do? A recommendation, a prescription (from whom?)

Nicole Long28 said:Hey everyone. My sister has bone metastases (stemming from primary breast cancer), and her doctors are now looking at putting her on Vinorelbine. The problem is, her previous treatments—she’s basically tried everything under the sun—have absolutely wrecked her veins. Getting blood drawn is a nightmare for her; they have to poke her multiple times, and she always has to take Apaurin just to cope with the anxiety of it. Now, the oncologist is saying Vinorelbine might be out of the question unless she goes to surgery first to get a port implanted in her chest, because Vinorelbine is incredibly harsh on the vessels 😢. We discussed this last Friday. I found out that this damn Vinorelbine is also available in tablet form called Navelbin, but it isn't available here; it's not on the approved list, even though it works almost identically. So, I’m wondering, how can we get a hold of that specific medication? What do I need? A recommendation, a prescription (from whom?)
.

Do you really think a doctor wouldn't prescribe tablets if there was any way to make it happen?

Navelbin is just a generic version—basically a copy of Vinorelbine—which actually makes it the superior option since it's the original formulation. Honestly, I'm not sure where you heard that both drugs only exist for IV administration. Just look for yourself: http://www.chemocare.com/bio/navelbine.asp ; http://www.chemocare.com/BIO/vinorelbine.asp
For your sister, the only real path forward is getting a central venous port installed to handle the treatment.

Surgery just isn't an option here, especially since there has been an oral version available for quite some time now http://annonc.oxfordjournals.org/con.../11/1643.short , http://www.ncbi.nlm.nih.gov/pubmed/11822766 , http://www.wales.nhs.uk/sites3/Docum...ne%20final.pdf . I suppose I can't quite blame the doctor—maybe he simply doesn't know, or perhaps he knows but didn't bother suggesting an alternative or explaining how to actually get the medication to the nurse. It’s possible the hospital could order it directly under their own name and then handle the payment. I mean, taking a pill is definitely not the same thing as going under the knife.

Nicole Long28 said:Surgery isn't even an option here, especially since there's an oral version available—and for quite some time now http://annonc.oxfordjournals.org/con.../11/1643.short , http://www.ncbi.nlm.nih.gov/pubmed/11822766 , http://www.wales.nhs.uk/sites3/Docum...ne%20final.pdf . I can't decide if the doctor simply doesn't know this, or if he knows and just didn't offer his patient an alternative—or at least didn't explain how to actually get the medication. It’s likely the hospital could order it under their own name if they paid for it. There is a massive difference between taking a pill and being cut open.

Those links point to study results. Just because a study exists doesn't mean the drug is actually in clinical use. The road from research results to official approval for clinical use is long, winding, and full of obstacles. It looks like it was approved in England back in 2007, but it's unclear why it wasn't cleared for the rest of Europe. Clearly, something went sideways at the finish line, possibly related to the extreme neutropenia seen during application, according to the British reports. They further state: In the studies submitted oral vinorelbine was mostly used as a first line therapy in advanced disease and the majority of patients had not received prior
anthracycline based chemotherapy. This does not fit with the current NICE guidance
where vinorelbine (IV) monotherapy is recommended as one option for second line or
later therapy for the treatment of advanced breast cancer when anthracycline based
regimens have failed or are unsuitable.
Basically, the drug was given in these studies to patients in the first line of therapy for advanced disease who hadn't undergone any other form of chemotherapy yet . That completely contradicts the NICE (American Medicare-style) guidelines, which recommend vinorelbine via IV as a second-line treatment after the first line fails or relapses. Based on this, we have no idea how the drug would perform in a second-line setting because the study doesn't cover it. Furthermore, they highlight what I consider the most critical point: Presently, the use of oral vinorelbine is limited by the lack of randomised, controlled trials and comparative data. Nevertheless, in view of its relatively milder toxicity
profile, elderly and/or frail patients or those prioritising other aspects of quality of life may choose vinorelbine over more established cytotoxic agents. Further welldesigned prospective studies are needed in order to provide more information on
safety, tolerability and the optimal dose especially in patients with pre-treated metastatic breast cancer. They should include randomised studies comparing intravenous with oral vinorelbine to confirm equivalent efficacy and safety profiles.
Further Studies investigating The value of Oral vinorelbine in combination therapy in general ara also required , along with comparative clinical trials to Help clarify The Place of Oral vinorelbine in The Management of Advanced breast cancer. In short, a mountain of research is still needed to prove it works as well as the IV version. If you ask me, the study was poorly executed. They poured a fortune into a potentially great drug but failed to do the necessary legwork immediately.

The doctor definitely knows all of this, but beyond his medical knowledge, he also understands how the bureaucratic machine grinds. Suggesting a therapy that isn't officially accessible is highly unprofessional; in that sense, a physician is neither allowed nor able to propose it. If a study is still active somewhere, you might try submitting a request to be included, provided you meet the eligibility criteria.
There’s simply no other way to get this done right now.

As for the port, honestly, I think you're just making a scene because you don't quite grasp how it works. It isn't some massive surgical incision; it's just a tiny little access point in a vein in the chest where they slide in a small tube—a catheter—to deliver the treatment. Doctors do this every single day, even for little kids, and it's really not the monster people make it out to be. If anything, it makes getting your meds a hell of a lot easier.

Edit:
Here's a visual for you: http://www.youtube.com/watch?v=6wCn4nEYLqw

I’m joining this discussion... unfortunately... first and foremost, my heart goes out to everyone here. I never imagined I’d find myself in this position. My absolute best friend—after a five-year relationship ended, she just shut down. She pulled away, stopped responding, and I figured she just needed some space to process everything. Between the breakup and the stress of finals hitting all at once, she lost 4 kg and her stomach started acting up. After about a year, she finally seemed to be getting back on her feet, but then suddenly, she started avoiding me. I haven't seen her in months, even though she lives right across the street from me. We've been inseparable since we were kids. But this doubt has been eating at me, so I dropped by her place unannounced, and what I saw is something I'll never forget. My wonderful friend, who was always so vibrant and fit, looks so frail now. She's thin, her eyes are sunken, she has deep dark circles, and she's wearing a headscarf. I found out she had a cyst removed from her ovary, but the pathology report came back positive for cancer. She's dealing with constant diarrhea. Her long hair is gone; it just fell out. She says she's undergoing chemotherapy, and she's so weak—she sleeps constantly and can barely eat. I can see her losing her will to live, and it breaks my heart into pieces... How can I help her? How can I make this easier? Please, I'm asking for any advice... Is there hope that she'll get better? I'm praying for a miracle... Thank you in advance....

Angela Nelson51 said:I’m jumping into this thread... unfortunately... first off, my heart goes out to everyone here. I never imagined I’d find myself in this position. My absolute best friend—after her five-year relationship ended, she just shut down. She pulled away, stopped calling, and I figured she just needed space to process everything. Between the breakup and the crushing stress of finals in just two weeks, she lost 4 kg and her stomach started acting up. After a year, she finally seemed to be getting back on her feet, but then suddenly, she starts avoiding me. I haven't seen her in months, even though she lives right across the street from me. We’ve been inseparable since we were kids. But this doubt is eating me alive, so I just showed up at her place unannounced. What I saw there is something I will never forget. My beautiful friend, who was always so vibrant, looks like a ghost. She's thin, frail, her eyes are sunken, and she has massive dark circles under them. She’s wearing a headscarf now. It turns out she had a cyst removed from her ovary, but the pathology report came back positive for cancer. She’s been dealing with constant diarrhea. Her long hair? Gone. It all fell out. She says she's starting chemotherapy, but she's exhausted, sleeps constantly, and can barely eat. I can see her losing her will to live, and it's breaking my heart into pieces... how can I help her? How can I make this easier? Please, I need advice... is there any hope that she'll get better? I'm praying for some kind soul to guide me... thank you in advance...

Just be the friend you've always been. Don't smother her with pity, don't spiral into despair, and don't act like she's broken. Just be the person she’s always known. Talk to her about the usual stuff, the things you’d talk about if none of this were happening. Make her feel normal.
Ovarian cancer is an incredibly sneaky and brutal disease, and having metastases definitely makes things much harder, but there are women out there who have fought through it. With the right support system and keeping the atmosphere as positive as possible, there is always hope—for her, too.

Thank you so much for your kind words of comfort. The real issue is that she refuses to reach out to anyone; her own family doesn't even know she's sick because she’s keeping it all hidden. She won't even step outside just to avoid being seen by someone... she's completely isolated. It breaks my heart every time I pass by her house, but I can't stop because she doesn't want me to. I just wish I could be there by her side, talking like we always used to, acting as if everything were perfectly fine... I want to make her feel alive again, rather than making her feel like a patient. She is such a wonderful person, always so full of positivity... and now... when I was dealing with my own tumor a few years ago, she was right there by my side. It kills me that she's pushing me away, especially since I know deep down she needs me. How can I possibly reach her?

Angela Nelson51 said:Thank you so much for the kind words. The real issue is that she refuses to reach out to anyone. Her own family doesn't even know she's sick—she’s keeping it all hidden. She won't even step foot outside because she's terrified someone might spot her. She’s completely isolated. It breaks my heart every time I drive past her house, but I can't stop because she doesn't want me to. I just wish I could be there by her side, talking like we used to, acting like everything is perfectly normal... making her feel alive instead of just feeling like a patient. She’s such an incredible person, always so full of life and positivity. When I was dealing with my own tumor a few years back, she was the one standing right next to me. Now, it kills me that she’s pushing me away when I know deep down she needs me. How on earth am I supposed to get through to her?

You can't force anything. Try writing her a letter. Tell her you want to support her through this, that you aren't looking to pity her or feed her empty promises about how "everything will be fine," but that you simply want to be present—to do whatever activities you used to enjoy together.
Whatever she decides, you have to respect it. She’s the only one who knows what she needs and what feels manageable right now. You’ll just have to find a way to deal with your own grief and frustration on your own and accept things as they are. There isn't any other way.
And don't forget: the road to hell is paved with good intentions! If you aren't absolutely sure of your footing, don't push. Based on what you've shared, it sounds like you might not fully grasp the weight of this diagnosis or have the experience to handle this specific type of fallout. If you push too hard, you risk doing more harm than good.

We all carry the shadow of cancer within us at some point. We shouldn't turn it into a monster just because of a lack of information or an inability to process the reality of what a diagnosis entails. It's a statistical fact that roughly one in three people in America will face a malignant diagnosis in their lifetime. That is a scientific reality. We need to educate ourselves and learn how to navigate these situations to ensure everyone maintains a decent quality of life.