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Resources and support for families dealing with cancer and serious illness

Started by Angela Wright · · 👁 101 views · 3K replies

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Participants Angela WrightChristian Wilson16Morgan Williams4Jeremy Nelson3John Chase6steelbadger83hiddentiger80urbanjackal3silentviper30mistyranger4ruggednomad182placidfalconJerry Morales4frozenviper492velvetgull9Joshua Flores48Frank Ramirez23Roger Hall15Walter Cox5mellowlynx8boldjackal70northernfox9ALaura Gomez10 …
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2361 ·
slyseal28 said:I just wanted to let you all know that there will be a feature story on our Association today on the "America Live" broadcast starting at 4:00 PM (I am not quite sure where we fall in the lineup), regarding our work. You will also hear some commentary from Dr. Mirando Mrsić, a physician who has been working closely with our Association. Do tune in...

It is truly a shame that I wasn't able to catch your segment... I have been working straight through the day and have only just managed to make it home 😢 ALU, seeing as everyone on the forum seems to be offering such positive feedback, I am genuinely glad you stepped up to the plate! KEEP FIGHTING!...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2362 ·
Anonymous said:Thank you everyone, the funeral was yesterday and now one simply has to find a way to move forward...

@Studentica: I am sorry that I must tell you this, but if it has reached stage 3 or 4, there is quite simply no hope left, regardless of how much effort is exerted or how much willpower is applied... That is our grim reality. My mother was at stage 3, which progressed to stage 4, and she passed away within three months of the diagnosis. All that remains is for everyone to stay by her side and provide whatever comfort possible, while I would advise everyone else to undergo regular checkups, as they truly can be life-saving. My mother neglected them for two years, and that oversight cost her everything...😢

The One! push forward, rationally and steadily... do not allow yourself to be broken by surrendering to your emotions. Every fate carries its own weight...
slyseal28 slyseal28 Member
11 messages
joined Mar 2007
#2363 ·
We’ve got the full reportage on a DVD, so we're going to upload it to the site. That way, anyone who missed out on catching it can finally watch it...
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2364 ·
For those of you dealing with brain tumor diagnoses, this link points to some incredibly compelling info regarding experimental treatments being tested at a clinic over in France. Just make sure you scroll down toward the end of the thread.
feralcrane feralcrane Newcomer
1 message
joined Feb 2008
#2365 ·
So, the doctor mentioned Hodgkin?..
Bloodwork, urine tests, abdominal scans, head scans... everything came back looking perfect. Honestly, too perfect. But then there’s the biopsy. They pulled a 5x3x2 cm tumor out of my neck. Now they're throwing around terms like "popcorn cells," CD 20 positive, CD 3 positive, some kind of Ki-1 lymphoma...
And apparently, that one lump wasn't lonely. Now I've got more stuff popping up on my neck (again) and down in my groin..
All this madness packed into just one month.
They did a puncture on the new lump—results are due Friday. I was reading online that a biopsy is the only real way to get a definitive diagnosis, and we don't even have that yet. What are they waiting for?
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2366 ·
feralcrane said:Did the doctor write Hodgins?..
Bloodwork, urine tests, abdominal scans, head scans... everything looks perfect. Honestly, it’s almost too good to be true. But the biopsy showed they pulled a 5x3x2 cm tumor from the neck. They mentioned popcorn cells, CD 20 positive, CD 3 positive, some kind of Ki-1 lymphoma...
And that first lump wasn't lonely; now there's more at the neck (again), the groin...
All this happening within a single month.
They did a puncture on the new lump—results are due Friday. I read somewhere that a biopsy is the only way to get a definitive diagnosis, yet we still don't have one. What on earth are they waiting for?

Look, the only way you're getting an answer to that is if you storm through the entire hospital and grab a doctor by the collar the second you see them, demanding clear answers.

Come on, people, you need to be more decisive and aggressive when dealing with doctors. They aren't going to walk up to you and start explaining exactly what you need to know, and nobody else is going to step in and lobby on your behalf. Forget about that; it's a total utopia. When we talk about "fighting cancer" or "taking the bull by the horns," we're talking about every single obstacle that comes bundled with the disease itself. You have a chance to tap into your assertive side—not being rude, just being bold and persistent until you get what you came for. Use it.😉

On a lighter note, Hodgins is highly treatable! I have a friend who beat it when she was 16, and now at 28, she's happily looking forward to her future.😍
Alex White6 Alex White6 Member
22 messages
joined Jun 2006
#2367 ·
Nancy Hernandez43 said:I know, I didn't want my previous post to come across as "clueless." Ultimately, it really comes down to how much attention and resources our doctors actually provide us.

I just wanted to give you some strength so you can fight alongside your aunt instead of fighting against "windmills"... because it’s worth the fight. My mother was diagnosed with Stage IIIc or IV cancer, and she's still here today... we keep pushing forward, no giving up, ever. If we had just accepted those initial prognoses, given up, and failed to seek second opinions or provide constant care—she might not be with us today 😢

Keep fighting. Hang in there. Don't back down.

I know you didn't mean anything by it. Once you face something as insidious as cancer, you realize how much you truly wish nothing but the best for everyone.

I'll be fighting right alongside my aunt... Every day I pick up new info that feels like it could have been avoided if the doctors were more attentive, but I try not to let it get to me. She's where she needs to be, and there's no turning back now...

My whole schedule revolves around hospital visits; everything is built around that. Both my parents and hers live far away. They were here for a few days, and they call every single day, but it’s just not the same...
I try to keep my daily routine and habits as normal as possible just to recharge enough to handle this... but sometimes I lose track of the days. I don't even know what time it is sometimes, and honestly, I can't always remember who said what to whom...

Don't give up either.🙂
Alex White6 Alex White6 Member
22 messages
joined Jun 2006
#2368 ·
Elizabeth Gonzalez55 said:My grandmother was diagnosed with late-stage stomach cancer. The doctors left the decision up to us regarding surgery, since they weren't even sure she'd make it through the procedure. They told us straight up: three months without intervention, and if she wakes up after surgery... who knows. Just how they said it.

She’s 87 today and living life with a third of her old stomach. She goes to the bank and church on her own, cooks her own little meals—I always tease her about eating like a tiny bird—and at my mom's last birthday, she was singing her heart out well into the night.

So please, don't say there's no hope, because that just isn't true. And of course you'll be a fighter... is there really any other choice?

Stay strong and have faith!


Oh, thank you for sharing this... wishing your grandma many more birthdays filled with song...🙂
Harold Richardson4 Harold Richardson4 Member
16 messages
joined Nov 2007
#2369 ·
slyseal28, Angela Wright, brightgardener8... CONGRATULATIONS,

It seems you all have finally started making some real headway with the media outlets; I truly tip my hat to the sheer grit and persistence you've shown... hopefully, we'll be seeing those official press credentials in our hands very soon

@DINA

Mila, we were all practically counting the minutes until we heard from you. On the day of your surgery, you were constantly in our thoughts; believe me, there was a lot of anxiety in the air and everyone was crossing their fingers for you... just look at how far you've come
I am genuinely happy for you. Truly, bravo—KEEP PUSHING FORWARD WITH COURAGE. Wishing you a smooth and speedy recovery
brightgardener8 brightgardener8 Active Member
157 messages
joined Jul 2007
#2370 ·
Hannah Thomas28 said:I saw the news report!


Ana74, it's been forever! How have things been on your end? How's your mom doing?

Big hugs, Din !!! So glad you're back.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2371 ·
Linda Campbell said:slyseal28, Angela Wright, brightgardener8... massive props to you guys,

you've really started making some noise in the media lately—honestly, hats off to all the hard work you're putting in. I'm looking forward to when we finally get our membership cards in hand

We actually picked up a laminator yesterday, so we should be able to get everything mailed out to your addresses within the next week.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#2372 ·
Grace Fowler said:Greetings to all my dear friends!!!!!!!!
I am finally homeeeeeeeeeeeeeeee, after a long 17 days, I've finally made it back. I wanted to let you all know that things went quite well; the SURGERY was a success and the pathology report is encouraging. I am incredibly happy...
I will check in over the next few days with all the details...
Kisses, Dina :-)

I am truly glad to hear you are doing well and that the surgery went smoothly! Wishing you a very speedy recovery... kisses
Carol Sanchez2 Carol Sanchez2 Active Member
85 messages
joined Apr 2007
#2373 ·
Dina, Welcome and here is a huge high-five!

I am so bummed I missed the feature on the Association, but please, please make sure you upload it to the website so the rest of us can catch up and watch it! Seriously, major props to you all!
steelfalcon21 steelfalcon21 Member
11 messages
joined Nov 2006
#2374 ·
Hey everyone..
PLEASE, I need some help if you can (even just forwarding this)! My aunt (blood type B+) is battling leukemia and is currently admitted to the hematology department at San Diego Hospital. I received this email from my cousin last night:

Mom is dependent on platelet and red blood cell transfusions... there was an issue with her platelet transfusion today because they didn't have enough at San Diego Hospital... she finally received it around 8 PM... I’m reaching out to anyone who can help to please donate a little bit of your blood... it could save a life!

SAN DIEGO HOSPITAL

Location: Aldo Negri 6:
Main Line (555) 376 500

Location: Aldo Negri 6:
Main Line (555) 376 000
Telefax (555) 376 412

TRANSFUSION SERVICES
Department Head:
Saša Benazić, MD
Head Nurse:
Elis Bobanović, RN

Negri 376 - 117

Chicago 376 - 750
Betty Taylor51 Betty Taylor51 Newcomer
1 message
joined Jun 2008
#2375 ·
Hello everyone. This is my first time visiting this forum, and I’m hoping to learn a bit more about dealing with colon cancer that has spread to the liver. Surgery has already been completed to remove the affected areas, and now we are just waiting to begin chemotherapy. If anyone here has any insights or experiences regarding this particular battle, I would truly appreciate your wisdom. Thank you.
Angela Wright Angela Wright RegularOP
731 messages
joined Feb 2007
#2376 ·
Betty Taylor51 said:Hello everyone. This is my first time posting here, and I’m looking to learn more about colon cancer that has spread to the liver. Surgery has already been performed to remove the affected sections, and now we're just waiting to start chemotherapy. If anyone has any insight or experience regarding this disease, I would truly appreciate it. Thanks.

You actually have a dedicated thread for this exact topic open on our association's website.
Betty Taylor51 Betty Taylor51 Newcomer
1 message
joined Jun 2008
#2377 ·
A huge thank you to Angela Wright!🙂
dustyranger11 dustyranger11 Newcomer
4 messages
joined Aug 2007
#2378 ·
Hey there. If anyone wants to reach out, consider this a huge virtual hug from me. About a month ago, my dad was diagnosed with throat cancer. Honestly, we’d suspected something was off for about a year, but I guess I was just playing the part of the optimist. I wanted to believe the doctors were on top of it, even though deep down, I had this nagging feeling they weren't actually getting anywhere with him... It’s incredibly frustrating. They didn't catch anything until he was literally in agony, screaming and begging for help. Now, he’s stuck in the hospital waiting for throat surgery. We don't even know what the procedure entails yet or when it will happen—whether they have to remove his larynx or not. He’s such a sweetheart, a truly wonderful man. To make matters worse, it took them an entire week just to get him scheduled for an ergometry test. He finally did it today, but we're still sitting in limbo waiting for the results. On top of everything, he still needs a cardiac ultrasound. He'll be home for the weekend, but I am absolutely terrified.
dustyranger11 dustyranger11 Newcomer
4 messages
joined Aug 2007
#2379 ·
The main thing I need to figure out is this: what are the actual survival rates for people dealing with throat cancer? My dad is having a really hard time swallowing lately. Other than that, he seems okay, but the throat pain is constant. Is it better to go through with a laryngectomy, or should we be looking at radiation therapy? He hasn't lost his voice yet, it’s just that eating and drinking has become such a struggle because of the swallowing issues... He doesn't smoke, though...
Zachary Booth3 Zachary Booth3 Member
27 messages
joined Dec 2008
#2380 ·
I have a question—has anyone here had any actual experience with neurosurgery in Indianapolis?
Thanks.

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