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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 69 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#581 ·
nimbletrucker72 said:We went to Jordanovac today but they sent him home—instead, they scheduled the bronchoscopy for June 12th.


Personally, I just don't get it... June 12th? That’s 17 days away. Do you have any idea what a disease like this can do in 17 days?

Horrible things. 😢

Screw Milinović and the healthcare reform 😠—that's exactly why I took my mother out of America. We're trying to fight and save her because with this kind of illness, there's one rule: you don't have time.

nimbletrucker72 said:They're telling us to go elsewhere for a chest and abdomen CT because their equipment is supposedly bad, yet they claim their specialists are top-tier.

The pulmonologist and oncologist from my mom's recent hospitalization outside the US told me... a chest CT isn't strictly necessary, nor are all those other tests. Just have a decent doctor (a pulmonologist) examine him, and if he has any swollen lymph nodes (usually in the groin area), just biopsy the node to find the cancer cells. It's a much less invasive method... plus, chest CTs have their own nasty side effects—air entry, an outdated method that's barely used anymore—and complications can arise (you usually end up in the ICU with a drain in you for 5 days). It's not always essential. 😢
They put my mother through the wringer too... and in the end, after they finally biopsied a lymph node (which they did), they found the exact same cancer cells they would have seen on a chest CT—adenocarcinoma. 😢

nimbletrucker72 said:The doctor just told us not to hope for anything good. What is that supposed to mean? Everyone is wondering why she wasn't admitted.

Well, logic dictates she should have been admitted... but what can I tell you? People were wondering why my mom wasn't admitted either—it's because there was simply no room. There's your answer. 😠

nimbletrucker72 said:He went in for his exam after dealing with headaches for about 20 days—plus chest pain, though he's had that for years. He’s taking Voltaren twice a day to manage it. Can I assume they're hiding the fact that it's near the end, or is there still hope for surgery or other treatments to slow things down? If anyone can offer some insight, please write back. Thanks!

Look, your father needs solid diagnostics first. You have to find out if there's metastasis—lung cancer spreads to the bones, brain, and liver—so you need to see how far it's gone. What stage is it? Get a thorough diagnostic workup to determine the specific type of carcinoma, because treatment isn't one-size-fits-all. Only then should you jump into therapy, and as quickly as possible...

For me, joining support groups like CancerCare helped me finally wrap my head around what my mother was actually facing. As for getting all those tests done, you're going to honestly need:
- Good connections (or even better ones)
- A lot of money (if you're planning on doing all that private testing)
- Pure luck (finding a doctor who actually cares enough to be thorough)

I really hope you don't break under the pressure. Sending you patience, love, and hope...
To you and your family—and I hope your father can start treatment ASAP.
Casey Palmer5 Casey Palmer5 Regular
470 messages
joined Jan 2016
#582 ·
Sadly, the jerk just had the upper hand.

I don't think I'll ever come across such a great guy again; he was truly one of a kind...
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#583 ·
Casey Palmer5 said:Unfortunately, the bastard was stronger.

I'll never find another guy as good as him—he was one of a kind.

Oh my God 🙂🙂
Oh God... just like that? So fast? What on earth happened in just 24 hours?
Casey Palmer5 🙂 my sincere condolences 😢
nimbletrucker72 nimbletrucker72 Newcomer
8 messages
joined May 2009
#584 ·
Thanks, Grace Stewart6, I honestly don't even know what to think anymore. I consider myself someone who knows a lot about these things, but everything changes when it involves my own dad. I spend a lot of time on this forum, and privately, I knew dinu9; she was such a fighter, truly. Regarding my father, he had to be rushed to Jordanovac because a tumor was discovered during a pulmonology exam, which is why I’m so confused about why they didn't keep him there—even his GP was caught completely off guard. Aside from some chest pain and a bit of weight loss, there aren't any other symptoms. His head isn't hurting anymore, but 6 cm is just... it's huge, so I'm terrified. I know time is running out, but I just want him to stay with us for a little while longer. From his therapist, he was prescribed Sumamed and some codeine phosphate alkaloids for the pain. I am just being torn apart by this grief and heartache, and I feel powerless. When I'm with him, I try so hard to act like everything is okay, but once I get home, the dark thoughts just take over. I have a wonderful family waiting for me, and I need to be there for them, but I feel this crushing pressure in my chest. I don't want to burden them too much, yet I can't seem to talk about anything else. That's why I'm asking you all to please help me find some peace. Sorry.
nimbletrucker72 nimbletrucker72 Newcomer
8 messages
joined May 2009
#585 ·
Thanks... Susan Diaz91... I'm not entirely sure, but I'll give it a shot. Does anyone know where I could ask about finding a clinic that offers a full suite of comprehensive testing? If someone could point me in the right direction, I'd really appreciate it. THANKS
James Cox6 James Cox6 Active MemberOP
150 messages
joined Mar 2009
#586 ·
Here’s my take:

First step—go see a private pulmonologist. An appointment will run you about $200-$$100... but they'll give you a clear roadmap of what needs to happen next and where to go..
Once that specialist directs you on which tests to run—get them all done first. Then... take everything—the pulmonologist's report and all the diagnostic results they ordered—to a private oncologist. Get their opinion on the timing and the specific therapy needed to start.

That way, you handle the pulmonologist and the oncologist privately. With all those results in hand, you can head straight to Jordanovac—you could realistically get this entire process wrapped up in 17 days. It saves your dad so much precious time because the public hospital system here is just too slow; the wait times are endless... you want him starting treatment immediately...

But you need to start RIGHT NOW!!!! Seriously, right this second. CANCER DOESN'T WAIT... good luck. 🙂

My mother didn't have any pain—just a dry cough—so her diagnosis hit like a ton of bricks... 😢.. but since your dad is dealing with lung pain and headaches... that's why I'm telling you this.
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#587 ·
Casey Palmer5 said:The bastard just won this round, unfortunately.

I’m never gonna find another guy that good again. He was one of a kind.

So what actually happened? Please, reach out.
Michael Mendoza17 Michael Mendoza17 Newcomer
2 messages
joined Aug 2009
#588 ·
Casey Palmer5 said:Unfortunately, the bastard was stronger.
I'll never find such a good guy again; he was one of a kind.


Casey Palmer5, I am so incredibly sorry.

Even though someone close to me is battling a malignant disease, I haven't actually posted in this thread—I've just been reading along, so I'm familiar with what you're going through.

I was actually wondering just yesterday why you hadn't checked in, and then I log on today to see this.

Life can be so cruel sometimes that it makes you wonder.

Hang in there. 🙂🙂
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#589 ·
nimbletrucker72 said:Hey everyone. I’ve been feeling absolutely terrible for the last 7 days. My dad (he's 68) just had an X-ray and they found a 6 cm tumor on his lungs. We were at Jordanovac today, but they sent him home and scheduled a bronchoscopy for the 12th, plus he needs a CT scan of his chest and abdomen somewhere else because apparently their machines are junk—even though the "experts" swear they're top-tier. The doctor basically told us not to expect anything good. What does that even mean? Everyone keeps wondering why he didn't stay for observation. He went in after dealing with a massive headache for about 20 days (plus chest pain, but he's had that for years) which he manages with Voltaren twice a day. Can I assume this means it's almost over and they're just not telling us straight? Or is there still hope for surgery or other treatments to slow things down? If anyone can help me out, please write back. Thanks!

nimbletrucker72, my husband has been fighting cancer for four and a half years now. It started exactly like your dad's—hit him with a brutal headache, then coughing up blood, then a tumor around 6 cm... He was a total athlete, played soccer, and when this hit, he was only 48.
When he got transferred from our local clinic to Jordanovac, I didn't even dream that it could be cancer. It was such a massive shock for all of us—for him, for our two kids, and for me.
We're still holding our own in this fight.
Look, I'm telling you, getting the diagnosis isn't the end of the world. There's a battle ahead. It's heavy, but you have to stay focused and just take it one day at a time.
And as for those "projections" when someone is near the end... don't go there. Don't think about it. Nobody actually knows. There are no rules.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#590 ·
Casey Palmer5, please accept my deepest condolences.
I am absolutely stunned.

🙂🙂
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#591 ·
Casey Palmer5, tell me this isn't actually happening. Is it really over? Man, life just hits you out of nowhere, doesn't it? It’s so unfair. I can't believe how fast everything went down..
Sending my deepest condolences. I am truly sorry.
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#592 ·
Casey Palmer5 said:Unfortunately, the bastard was stronger.

I don't think I'll ever find such a wonderful guy again; he really was one of a kind.

Please accept my deepest condolences.😢
I was genuinely shocked; I've been following your story over the last few days... was it really that sudden?!
mistyridge5 mistyridge5 Member
25 messages
joined Jan 2012
#593 ·
Casey Palmer5, I am so incredibly sorry for your loss 😢

I honestly can’t wrap my head around this—I’m just in total shock.
I mean, he was only just scheduled for surgery... it all feels way too sudden, doesn't it?
Frank Wright13 Frank Wright13 Newcomer
3 messages
joined May 2012
#594 ·
Casey Palmer5 said:Unfortunately, the jerk won this round.

I’ll never find another guy like him; he was one of a kind.

Oh God, that's awful... I am so sorry.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#595 ·
Casey Palmer5 said:Regrettably, the villain proved more powerful.

I fear I shall never encounter such a wonderful soul again; he was truly one of a kind...

I am deeply shaken 😢 In such a brief window of time? It feels profoundly unjust. Please accept my most sincere condolences; try to remain resilient during these difficult days and prepare yourself for the life ahead, for he will continue to accompany you—certainly in spirit, in heart, and in thought...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#596 ·
Casey Palmer5 said:Unfortunately, the monster won this round.

I'll never find another guy like him; he was truly one of a kind.

Oh my God! You've got to be kidding me!😲
I am so incredibly sorry!😢
Carol Newman21 Carol Newman21 Newcomer
9 messages
joined May 2009
#597 ·
Hey everyone.
I’ve been right where you are. To cut to the chase: I have four doses of Temodal left over. We ended up paying for them out of pocket because our insurance wouldn't cover it, but now that the disease has progressed, we're moving on to a different chemo regimen. If anyone knows someone who needs Temodal, I’m more than happy to give it to them. It’s recommended for Glioblastoma Stage III.
It expires in October 2009, so I need this gone fast.
casualrider21 casualrider21 Member
43 messages
joined Dec 2008
#598 ·
Casey Palmer5 said:The bastard was just too strong.

I'm never gonna find another guy that great again. He was one of a kind.

I'm speechless, seriously. 😕
Deepest condolences.😢
nimbletrucker72 nimbletrucker72 Newcomer
8 messages
joined May 2009
#599 ·
thanks so much, Rose, really, thank you quite a bit............
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#600 ·
Carol Newman21 said:Hi everyone!
I find myself in a very similar situation to yours, but let me get straight to the point. I have four doses of Temodal left that we purchased privately because our insurance provider wouldn't cover them. Now that the disease is progressing, we have to move on to a different chemotherapy regimen. So, if anyone knows someone who needs Temodal, I would be more than happy to donate it. It is highly recommended for Grade III glioblastoma.
It’s urgent—it expires by October 2009.

🙏🙏
The only thing is, I haven't actually launched my fundraising campaign for the Temodal treatment yet. My surgery was just two weeks ago, and my oncologist recommended Temodal as the most effective option for this malignancy. The problem is that for this specific type of tumor (anaplastic ganglioglioma—which is now a recurrence), Temodal isn't on the standard coverage list provided by our health insurance.
My mother spoke with him today. She is traveling to America for a symposium, so he mentioned he would consult further with the top oncological specialists regarding my diagnosis.
I’ve already prepared the details for the fundraiser. I am just waiting until next week to gather the final pieces of information before I officially kick off the campaign.
You are truly an answer to prayer.
If you haven't already given it to someone else, please count me in.

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