Support resources for families dealing with cancer and other serious illnesses

My mom is 49. My sister just got off the phone with her surgeon... and honestly, I’ve lost all hope. He basically told us there's nothing left to be done. Since he was the one who actually removed the tumor, he’s certain we can't extend her life by months, let alone days... 😢(( He said he feels terrible about it and suggested we just focus on making her remaining time special with the little things... apparently, his own mother passed away from this exact thing. I don't even have the words for how broken we are. What am I supposed to do? Should we even bother trying anything?

I honestly don't even know what to tell you. Maybe... I don't know, maybe it might be worth getting one more opinion from that doctor your friend mentioned? Just so you don't end up feeling like you missed a chance later on. How is your mom doing now? Is she able to talk or eat at all?

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Mom is doing okay, just a bit weak because she lost a lot of blood before surgery, so she's dealing with some anemia. Otherwise, she’s functioning normally—walking, eating, talking—you’d honestly never even know she was sick. It’s just her mental state that's completely wrecked right now... my sister went to a medical board meeting today to try and get us an appointment with Dr. Smith. We know we can't cure her, but... I want to try everything.

Just try everything you can. I miss my mom so incredibly much. Please, cherish your mom while you can. To me, she’s honestly the most important thing in the entire world. Wishing you all the best with the ongoing treatment.

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mistyjackal842, I'm so sorry 😢 my heart goes out to everyone dealing with this 😢
we aren't giving up, we'll try everything... thanks for the kind words

slypuma said:mistyjackal842, I am so incredibly sorry 😢 my heart goes out to everyone forced to endure this nightmare 😢
we aren't giving up; we're going to exhaust every single possibility... thank you for your kind words.

Contact John Doe at Rib. He specializes specifically in sarcomas and rare tumors. As far as I'm aware, metastatic leiomyosarcoma falls under the indications for Pfizer, but John Doe will be able to confirm if that's actually the case. You should definitely seek second opinions in Germany. Forget about Smith. He’s impossible to get a hold of, and even if you do reach him, he won't be interested in options like these.

slypuma said:It’s me again... like I mentioned before, my mom has leiomyosarcoma. They removed the primary site—her uterus and ovaries—but there are spots on her lungs and they suspect the liver might be involved too. We know the prognosis isn't great, but you never stop hoping. Her doctor in San Francisco is recommending chemo, though from what I've read online, the results aren't always there. A family friend, who's a doctor in New York City, suggested we talk to Dr. Smith in San Francisco. Has anyone here dealt with him? I also found an email for a specialist in Germany at a sarcoma referral center—I'm thinking about sending the records over there. What I really need to know is: should we agree to this chemo, or push for a second opinion? I mean, what's the point of the suffering if it won't work?? Also, I'm thinking of getting some Berry concentrate for her—does that actually help with immunity, and where can I find it? Just any local pharmacy? Thanks.

I am so incredibly sorry to hear about those diagnoses. This type of tumor is extremely rare and aggressive—you guys are facing a very tight timeline. My advice? Get those consultations with the doctor in Germany immediately! Doctors in San Francisco just don't see these specific tumors often enough, so I wouldn't recommend wearing yourselves out there—the wait times alone are brutal. And honestly, when Angela Wright suggests getting a consultation in NYC, she's onto something.
You can pick up some concentrated Berry juice at Whole Foods.
Good luck!

Sorry if I’m jumping into a conversation about Tom already—I assume people have been talking about him, but there’s no way I can catch up on all 400+ pages right now...
The thing is, I’ve been looking into graviola. I really want to get some for my dad to help boost his immune system, especially since he just had surgery for colon cancer. But honestly, everything I read makes it sound like those pills, capsules, or powders you see for sale are nothing more than a massive cash grab for the companies selling them! So, if those are all scams, where am I actually supposed to find the real fruit?
If anyone here actually knows their stuff about this, please, I’m begging for some advice!

@Angela Wright/">@@Angela Wright, we finally met with Dr. Vrdoljak. He and Mom’s oncologist decided on the AC protocol for chemo, which should kick off this Thursday. Right now, she’s taking beta-glucan and some homemade aloe vera stuff—anything else I should look into to help dull the side effects? Honestly, I'm pretty anxious about this treatment because I have no clue what to expect or how bad the fallout will be. We sent an email over to Dr. Šantek and the specialist in Germany this morning. Just waiting to hear back.

I think you did the right thing by getting second and third opinions from different doctors. I don't have any personal experience when it comes to chemotherapy, but I'll be sure to check back here—someone in this group will surely have some insight.

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slypuma said:Angela Wright, we met with Dr. Vrdoljak and he teamed up with my mom's oncologist to set her on the AC chemo protocol, which should kick off this Thursday. Mom is taking beta-glucan and some homemade aloe vera concoction—is there anything else she should take to help mitigate the side effects of the chemo? I'm honestly terrified of this treatment because I have no idea what to expect once it starts... what kind of side effects are we looking at? We sent an email to Dr. Šantek and a doctor in Germany this morning. Now we’re just waiting to hear back.

I'll give you my humble layperson's take, based on having actually met Vrdoljak, worked alongside Šantek, and dealt firsthand with the complexities of rare tumors and sarcomas:

Look, all respect to Dr. Vrdoljak for his expertise, but when it comes to rare tumors and sarcomas, I don't view him as any more competent than Prof. Šantek or Dr. Herceg over at the Mayo Clinic. Those are the only two doctors who actually specialize in these kinds of diagnoses, and frankly, it feels totally backward that people are still getting shuffled through local clinics only to end up exhausted and desperate at the Mayo Clinic when there isn't much left to be done.
As for sarcomas, there's a standard rule: you operate on everything you possibly can, and if there's a specialized biological drug available, like Pfizer, you use it. Standard chemotherapy, by itself, is practically useless against sarcomas. It’s just a hard reality.
You really ought to try calling Šantek directly; he isn't exactly the type to sit around refreshing his inbox all day.
The doctors in Germany will probably get back to you soon. Personally, I wouldn't touch any experimental or "off-book" protocols until those specialists at the major sarcoma centers weigh in.
Regarding Vrdoljak, I've walked away from several encounters with the impression that behind that polished, eloquent exterior lies a very pragmatic individual who will only step up if it doesn't mess with the hospital's bottom line. What really bugs me is how he won't just give it to you straight about the situation or suggest seeking treatment abroad if that's truly the best option. In my opinion, there is absolutely an indication for Pfizer here, but it's cheaper for them to prescribe something low-cost so they can later claim, "...well, we did everything in our power..." if you catch my drift.

If God forbid a sarcoma or some other heavy, rare diagnosis ever hits me or someone close to me, I'd likely sell everything I own to go get treated at a top-tier specialist center outside of the US, as long as our healthcare system stays the way it is. Short and sweet—that's my stance.

Update: Dad barely made it through the weekend. We had to call 911 three different times because he couldn't catch his breath. They ended up giving him IV meds to stabilize him. He went in for radiation today, but after they ran some blood work, the results weren't looking great. They sent him for lung scans, and of course, it turns out he has pneumonia. They just sent him home. I'm honestly at a loss for words. :'(

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Angela Wright, thanks a ton. I’m pretty sketched out by this chemo too, because from everything I’ve read, it doesn't seem to do much... that's why I'm digging around before we dive into the whole mess. My dad is totally out of it right now, so my sister and I are basically running the show. Anyway, we'll just give Šantek a call, we don't really have another option... I just don't want her being worn down by chemo for nothing, especially since she isn't feeling it anyway. As for the folks in Germany, I'm really hoping for a quick answer. One more thing—how does Jondelis actually work?

hmm, I can't get a hold of Dr. Šantek... anyone got a lead?

steeleagle152
I’m assuming you mean Johns Hopkins Hospital, since you mentioned he’s heading there for X-rays. Honestly? Don't expect much from them. If your dad starts running a fever, maybe try going to the Mayo Clinic instead. I guess... personally, after my mother's tragic passing, I wouldn't set foot in Johns Hopkins ever again. It feels like such a cursed place where they just carelessly let people die in absolute agony. And the staff... it's awful. They just hang out in their little offices or in the hallways, almost mocking a patient who is fighting so hard for their life in a room over on the vascular surgery ward. Even when he was moved to hematology, things weren't exactly better, though at least they were serious and didn't laugh. I'm still waiting to hear back from the Department of Health because I filed a formal complaint about everything.

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slypuma said:Angela Wright, thank you so much. Honestly, I’m terrified of chemo too because from everything I’ve been reading, the success rates just don't seem that high... that’s why I’m asking around and doing my homework before we dive headfirst into all of this. My dad is completely out of it right now and isn't really able to help us make decisions, so my sister and I are basically running the show. Anyway, we’ll just give Šantek a call; we don't really have any other options left... I just can't bear the thought of her being absolutely wrecked by chemotherapy for nothing, especially since she's already resistant to the idea. As for the folks in Germany, I'm really hoping for a fast response. Can I ask you one more thing? How does that Jondelis actually "work"?

http://www.cancerresearchuk.org/canc...gs/trabectedin
http://en.wikipedia.org/wiki/Trabectedin

slypuma said:hmmm, I can't find Dr. Šantek's number... can anyone help?

Unfortunately, I don't have his personal cell anymore, but if you call the oncology department at Mayo Clinic, you should be able to get through to him. Just tell them who referred you and explain that you were advised to consult with Professor Šantek regarding the next steps.

EDIT: sent you a DM

mistyjackal842 said:steeleagle152
I'm guessing you mean Johns Hopkins since you mentioned he's going there for radiation.

Yeah, it's definitely Johns Hopkins. They basically sent him home and told him his primary care doctor would have to prescribe an antibiotic that she isn't even allowed to give him. According to the new regulations, the hospital should have handled the prescription themselves. I guess it’s just one of those situations where nobody seems to know who's actually in charge or responsible.

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That’s exactly it. My mom went through something similar where they hesitated to start antibiotics, even though she was staying at Johns Hopkins Hospital in the vascular surgery ward the whole time—they were supposed to be looking after her. But then she ended up developing sepsis and septic shock, and *that* was the only time they finally gave her the antibiotics intravenously. It feels like they’re still just being completely irresponsible. I really think you should get your dad to the Mayo Clinic as soon as possible if his primary care doctor hasn't prescribed antibiotics yet. His immune system is already weak, and he could slide into sepsis really fast. From what I’ve read, pneumonia tends to lead to sepsis more often than a urinary tract infection does. Apparently, both times Mom had her chest X-rays done during her stay, everything looked fine, even though she was coughing quite a bit. I haven't actually seen the X-ray images or the official reports myself; I only read about them in the discharge papers. It felt like all those tests were just busywork. They weren't actually doing anything, and she wasn't even getting the right treatment. We have a great relationship with our family doctor, and even she couldn't believe how Mom was being treated there. She told me straight up that if they didn't know how to manage urosepsis, they should have transferred her to the Mayo Clinic immediately. Honestly, it blew my mind that a major clinical hospital wouldn't know how to handle urosepsis. But clearly, they just don't have a clue.

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I suppose you could take your hospital records straight to a pharmacy to get antibiotics—you’d either have to pay full price out of pocket or use your insurance. But then, the primary care doctor really needs to write up and send over that prescription immediately. I wonder, though... can Dad even swallow? My mom was just so incredibly weak from the fever that swallowing became such a struggle. Honestly, if they had just started her on IV antibiotics the moment her temperature spiked, she surely would have pulled through. But it was a Sunday, and I guess they didn't want to deal with the hassle, even though I was practically begging and pleading for them to do something. It hurts so much to think that I didn't insist on transferring her to the Mayo Clinic right away, but she still had those stitches in her leg from the wound, which had actually healed quite well. So, I thought maybe we could work around that, even though I know there isn't a surgeon at the Mayo Clinic to handle stitch removal—though they could have just stayed put regardless. The stitches wouldn't have hurt her. The urinary tract infection really should have been treated instantly, but instead, they just waited until sepsis set in before finally starting the IV antibiotics.

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His GP basically ignored the standard protocols and prescribed an antibiotic because she actually understands how much he's suffering. Dad hasn't been able to swallow anything for over two months now, so Mom just administers the meds through his feeding tube. I honestly don't get how they can discharge someone this sick with a condition like this. It feels like they just want him to die at home instead of taking responsibility for their care. It's honestly awful.

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