Support resources for families dealing with cancer and other serious illnesses

Greetings, everyone. I am in need of a small amount of assistance. Could someone please recommend a reputable nutritionist located in Washington, D.C.? My stepfather had his check-up today (it has been one month since his stitches were removed). The doctor is extremely satisfied with his progress and has scheduled his next follow-up for five!!! months from now. Since he has begun eating more significantly (I simply could not believe it when my mother informed me that he was eating crepes yesterday), we would like to consult with a professional. I recall some of you mentioning that you received dietary instructions from a nutritionist, though I cannot seem to recall any specific names being mentioned.

I truly hope this man doesn't end up becoming just another grim statistic in some news report.

http://www.nytimes.com/home/open/3122215/index.do

Amanda Miller69 said:I just hope this man doesn't end up becoming another grim statistic.

http://www.nytimes.com/home/open/3122215/index.do

I’m also hoping for some kind of actual change here. In fact, that's precisely why—our association, working alongside the American patient advocacy group, is launching a legitimate petition. We are demanding high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. We’ll start collecting signatures on July 11th at Central Park in Washington, D.C., and we plan to take the movement to other major cities soon after.

We’re calling on everyone to get involved. For the sake of all those suffering.

They sent my dad home yesterday. The "dear" doctor just waved his hands dismissively and mentioned his favorite little getaway: some small town, USA. When I tried to look over his test results, he started screaming at me, yelling about how I was actually doing him a FAVOR by putting in the tube and keeping him at the hospital for a few days. He’s convinced they're done with him. It's honestly pathetic. 😢
I'm going to try and find somewhere else to go just to get a brain scan. I need to know if it has spread to his head. I asked one of those oncologist experts if it might have moved up there, and he was just like: "It *could* spread, but there's no indication it has right now." Unbelievable. Might as well just send him home to die.

My dear fellow members! Over the last few days, I’ve been scrolling through just about everything posted here, and I wanted to send my warmest greetings to everyone—especially to the founder of this thread, Angela Wright!
Everyone in this community seems to have their own unique story to tell, so I figured I’d share mine too. I have this nagging feeling that putting it into words might actually make things feel a little lighter.
About a month ago, my father was diagnosed with colon cancer that had already spread to his liver (both lobes, unfortunately). He’s undergone surgery on his colon and is currently waiting to start chemotherapy to target the liver. Surprisingly, he’s feeling quite good right now—his digestion is back to normal, his appetite is solid, and the doctors' prognosis is somewhat optimistic.
Still, we’re just taking it one day at a time, fighting the good fight and thanking God for every single day we get to spend together.
I only have one specific concern on my mind.
For the past few days, Dad has been complaining about shoulder pain, and I can't help but wonder: is it possible that the metastasis has reached that area?
He insists it’s just because a nurse poked him and that it only hurts when touched, but the pain seems to be radiating down toward his right wrist. He has a follow-up appointment this Friday, but I’m feeling incredibly restless and anxious. If anyone has any insight or similar experiences, I would be so grateful for the information.
Anyway, hang in there, everyone—STAY STRONG AND NEVER GIVE UP!!!!!!!

slyseal28 said:I’m holding out hope for some actual change too. That’s exactly why—our association, working hand-in-hand with an American patient advocacy group, is launching a serious petition. We’re fighting for top-tier treatment for chronic, severe, and rare diseases, specifically when recommended by specialists, all covered by Medicare. We’ll start collecting signatures on July 11th at Central Park in Washington, D.C., and then we’ll be taking the movement to other major cities across the country.

We’re calling on everyone to step up and join us. This is for all our patients!

With respect, slyseal28, you can count me in for sure. There really is strength in numbers. Best regards.

cosmicviper76 said:My dear regulars! Over the last few days, I have read through every single post on this board, and I want to send my warmest regards to everyone, especially to our founder, Jane Doe...
Since everyone here seems to have their own unique story to tell, I suppose I should share mine as well, as I have this lingering feeling that putting it into words might offer some semblance of relief...
About a month ago, my father was diagnosed with colon cancer that has already metastasized to his liver—both lobes are affected. He’s had surgery on his colon and is currently waiting to begin chemotherapy to target the liver. Surprisingly, he feels quite well; his digestion is normal, his appetite is decent, and the doctors' prognosis remains somewhat optimistic...
But we are simply fighting the good fight, taking things one day at a time, and thanking God for every day we are granted together...
I am just wondering about one thing...
For a few days now, my dad has been experiencing pain in his shoulder, and I can't help but wonder if it's possible that the metastasis has spread there?
He insists that a nurse poked him and that it hurts specifically where she touched him, yet the pain seems to be radiating down toward his right wrist. He has a follow-up appointment this Friday, and I find myself feeling rather restless... if anyone has any insight, I would be truly grateful...
Anyway, hang in there, because we MUST NOT GIVE UP!!!!!!!

As you so aptly put it, there is NO GIVING UP, and regardless of what the prognosis says, life and the will to live are what truly matter...

I suspect that if the pain started where the nurse touched him and is now spreading, it might just be nerve-related... perhaps that explains why it's traveling? I imagine some of the ladies here (perhaps Angela Wright or slyseal28) might be able to provide a more specific answer, but in the meantime—do try to find some peace and keep your composure, because this battle requires not just courage, but a steady spirit...

Stay strong!

dustyranger11 said:My father was sent home yesterday. That dear doctor simply waved his hands dismissively and mentioned his favorite destination: some small town, USA. When I tried to look over his test results, he actually started shouting at me, claiming I was doing him a FAVOR by having inserted the probe and keeping him in the hospital for a few days... suggesting he’s done all he can for him. It is truly pathetic... 😢
I am going to try to take him somewhere else just to get a brain scan. At least then I might know if it has spread to the head. I asked the oncologist—a man who behaves more like a brute than a physician—if there was any sign of metastasis to the brain, and his response was: "It certainly could have spread, but there's no indication it has right now." Good grief. It's as if they'd rather just send him home to die...

I am speechless... 😢 It is inhumane, above all, and quite frankly, the utter rudeness shown by a certain doctor is unacceptable. 😢

slyseal28 said:I am also hoping for some semblance of change. In fact, that is precisely why—our association, working alongside an American patient advocacy group, is launching a formal petition to secure high-quality treatment for chronic, severe, and rare diseases based on specialist recommendations, fully covered by Medicare. We will begin collecting signatures on July 11th at Central Park in Washington, D.C., and we plan to take the movement to other major cities as well.

We invite you all to join us. For the sake of everyone suffering...

Unfortunately, I won't be in Washington, D.C. during that time, though if there is any way at all, I will certainly make sure to sign. My mother and I were just discussing this yesterday—this constant struggle and the sheer impossibility of obtaining concrete information or necessary medication. People call me lucky, and I know they aren't wrong, but the fear that history will simply repeat itself, leaving us forced to beg at doctors' doors, is overwhelming. She was scheduled for a CT scan, yet she won't be seen until October 16th... absolutely terrible. Our healthcare system...

With fighters like you and Angela Wright, I truly believe things will change. They have to. You are gathering strength for all of us, and I thank you...

dustyranger11 said:They sent my dad home yesterday. The "dear" doctor just waved his hands dismissively and pointed him toward his favorite destination: some small town, USA....

My absolute biggest fear is watching what you're going through right now. Honestly, I have to give credit to Petrov and the oncologists there—they really stepped up for my sister when they admitted her, even though she’s turned down chemo (and they agree it's not worth it anymore). They gave her her own room and keep her on IV fluids since she can't keep anything down (she keeps throwing up everything). They’re going to perform an ascites drainage soon, which is super risky for her right now (someone from the family has to sign the consent forms) because she’s insisting on it herself.
They are truly doing everything possible to make these final days easier for her...

PS: shadowmason6, I just saw your PM. So sorry, I missed it! I hope I'm not too late. 😢

Linda Wright5

I feel so incredibly sorry about your sister. How old is she? I'm guessing she's one of the younger ones? It seems to me, I don't know, maybe just my impression, but doctors often seem to have more empathy for younger patients... and they tend to admit them to the hospital more frequently. Has your sister been dealing with this for a long time? What exactly is the diagnosis? I suppose it must be a little easier for you all, at least, knowing that the doctors are taking such good care of her.

Dear Agna,
It feels like I'm watching my own mother go through her final days; the symptoms are identical. At least they tried to admit your sister to the hospital, but with my mother, they practically pushed her out the door (though she did have the rib issue), so I ended up having to take her to a facility in a small town, USA.
I am so incredibly sorry you're going through all of this. May God give you all the strength needed to endure until the end.🙂

mistyjackal842 said:Linda Wright5

I feel terrible for your sister. How old is she? I’m guessing she’s on the younger side? It honestly feels like doctors show way more empathy toward younger patients and they’re much quicker to admit them to the hospital. Has she been fighting this for a while? What’s the official diagnosis? At least you guys have some peace of mind knowing the doctors are taking good care of her.

She's 39, and yesterday marked exactly one year since her surgery. She was diagnosed with Stage IIIc ovarian cancer. They recently told us her specific type is one of the most aggressive ones out there—some kind of cellular thing, I can't remember the exact name—so even after four different rounds of chemo, she hasn't hit remission; it just keeps progressing. Honestly, the doctors said she's a medical miracle for surviving this long. Last November, they gave her maybe 1 to 4 months, and here we are, having doubled their most optimistic timeline. She has been such a fighter through all of this, and I am so incredibly proud of her!

dustyranger11 said:I tried looking for his test results and he just started yelling at me, acting like he was doing me a huge favor by letting them put a probe in him and keeping him in the hospital for a few days.

Look, if you haven't gotten those results yet, you need to head right back to the hospital and demand them—ask for your dad's doctor, the attending physician, the administrator... honestly, it doesn't matter who. You have a legal right to this! Just cite
article 23 of the Patient Bill of Rights from The New York Times, issue 169/04

"The patient has the right to access all medical documentation pertaining to the diagnosis and treatment of their illness.

The patient has the right to request copies of the medical documentation mentioned in item 1 of this article at their own expense.

Medical documentation provided to the patient upon completion of a medical examination, or upon completion of treatment, is governed by specific laws regulating the types, content, and methods of managing, storing, collecting, and distributing medical records."

They tried playing games with me at first too—my mom's doctor had gone on vacation, so the nurse wouldn't hand over the results right away... So the next day, I went straight to the head nurse and the attending doctor, and they gave me the originals without any issues (I just made copies and gave them back after a couple of days).
If they are discharging your dad from the hospital, I really think—regardless of how he’s doing—they should have handed you a discharge summary! When my mom got hers, she got the discharge papers with all her test results included immediately.

From what I can tell, you aren't from Washington, D.C.? If there isn't a decent doctor in your town who can actually guide you on what steps to take next, maybe try calling the hospitals in Washington, D.C. first, explain the situation, and ask when you can come in... Or just head straight to one of the big Washington, D.C. hospitals through the ER!? They have to see you! One lady on this forum told me they showed up at the General Hospital exactly like that.
DON'T GIVE UP! At least try to get the tests done if they didn't manage to do them at your local hospital.

A few days before my mom's surgery, I went to talk to the surgeon who was supposed to operate on her (at the hospital where she did her testing). He might be a great surgeon, but the man was absolutely nothing to write home about. He totally blew me off... just mumbling something about it being inoperable, barely even glancing at the results... It definitely solidified our decision to have Mom go to a different city for the surgery...
The operation went perfectly! She was operated on by a highly respected Chief Surgeon who—whenever I actually managed to track him down (and I spent hours hunting him through hospital hallways :-) —could always spare a few minutes to first shake my hand (which apparently is beneath many people these days), and then walk me through Mom's condition...
By the way, that surgeon from earlier wouldn't even look up from his computer while I was trying to talk to him (after I waited an hour just to be seen)...

I know you don't have much time, but let this just be a reminder that we all have to deal with arrogant doctors as well as the good ones. Don't let these first guys discourage you!!!

Also, there was already some talk on the forum about getting a PET CT at Quest Diagnostics over in the city. I think you might be able to get seen pretty quickly if you pay out of pocket (and it's not cheap), but if you're going through Medicare, I assume the oncologist has to fill out a specific form...

Linda Wright5, everything is okay, I'll look into it... hang in there!

Linda Wright5

I guess her optimism and sheer willpower are what gave your sister the strength to fight such a heavy diagnosis. How did they even find out about the illness in the first place? Maybe if it had been caught sooner, the prognosis might have been better, though I've heard ovarian cancer is notoriously difficult to detect and often isn't found until it’s already quite advanced. Have you guys reached out to doctors abroad to show them her test results? I've heard you can sometimes consult with specialists overseas over the phone and then just fax the records over. I mean, I'm just speaking generally here. Still, I truly believe it's always better to actually travel abroad for an in-person consultation to get a second opinion from foreign physicians. Perhaps there's some new treatment available there that hasn't made its way to the US yet. Of course, if she is in a very critical state right now, there's no point in pushing her further; the focus should probably be on managing her pain, which I assume they are doing at Petrov's.

Nancy Hernandez43 said:I hear you—we went through the exact same thing when my dad was driving my mom 311 miles down south, then 311 miles back up north... honestly, I just respect them for pulling it all off. You’ll get there too. Just stay strong and keep pushing for her to get better. Hang in there. 👍

They arrived. Don't have the full story yet, but I just had to vent—some doctors really don't deserve those fancy titles.
Props to the decent ones in the bunch, but man, it’s a mixed bag out there. 👎

Amanda Miller69, they actually stole my dad from the hospital. And it wasn't just him—they did the exact same thing to my grandma a few years back. They literally kicked her out. They were yelling at her, asking why she even bothered coming there to die instead of staying home, basically telling her she was a lost cause. Thank God she’s still with us. Honestly, I think going to that place was a massive mistake. We should have gone to General Hospital or maybe a specialized oncology clinic instead (I had surgery for some fibroma near my breast and armpit at one of those places, and they were actually great).
Whenever someone mentions that "rib frrr" nonsense to me...
I grew up right outside of Washington, D.C., so if there's ever an emergency, we automatically head straight to that specific hospital because it's our local catchment area.

shadowmason6 - I've heard things about that CT scan over at General Hospital. Honestly, my oncologist is being such a total pain in the neck that they won't even bother writing me the damn referral form. The only person left who might be able to handle this is the radiologist, but I have no idea if they're actually authorized to write it. I was thinking about just heading over to get an MRI of my head and neck and then getting some blood markers checked out at Quest Diagnostics instead.

dustyranger11 said:Fiž, they kicked my dad out of the hospital too. And it wasn't just him—they did the same thing to my grandmother a few years back. They literally drove her away. People were actually yelling at her, asking why she even bothered coming there to die instead of staying home, telling her it was all over anyway. Thankfully, she’s still with us. Honestly, I think going there was a massive mistake. We probably should have gone to Vinogradska or that specialized cancer clinic (where I had my fibroma surgery near the breast and underarm; they were actually quite good there).
Just mentioning the hospital makes my skin crawl.
I live in the Washington, D.C. area, so my reflex is to call an ambulance and head straight to that specific hospital since we fall under their jurisdiction.

My father passed away at that hospital. He suffered two heart attacks within two days, and instead of providing oxygen, an IV, blood thinners (I can't recall the name), and strictly keeping him immobilized, they basically just hooked him up to an EKG. To make matters worse, he was actually walking around the ICU.
Naturally, the third one finished him off, and then they had the audacity—and I mean this with all due respect—to act surprised. They acted like it was some minor issue, when in reality, it was a rupture—the absolute worst kind of heart attack.
But what happened, happened. No one can bring him back. The hardest part is living so close to that place; I pass by it several times a day. And, God forbid anyone else gets sick, I'm stuck in their service area.

Linda Wright5 said:My greatest fear is watching exactly what you are going through right now. Because of that, I feel compelled to offer some praise to Petrov and the oncologists over at the General Hospital, as they have been so accommodating with my sister, even though she has declined chemotherapy—an opinion the doctors themselves share, given the circumstances. They’ve provided her with a private room and keep her on constant IV fluids since she can no longer keep anything down and suffers from constant nausea. They will soon be performing an evacuation of her ascites, which is a high-risk procedure for her at this stage, requiring a family member to sign the consent forms because she insists on proceeding...
It truly feels as though they are doing everything in their power to make these final days more bearable for her...

PS: shadowmason6, I just saw your PM and replied now. Please forgive me, I missed the notification earlier. I hope it isn't too late 😢

I am so sorry there isn't better news to share, especially when someone is fighting with such limited strength left. Please, try not to let fear take hold; you are by her side through all of this, and that is what matters most. Hang in there...