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Support resources for families dealing with cancer and other serious illnesses

Started by casualpanther1 · · 👁 24 views · 1.9K replies

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Participants casualpanther1quietpilot87Angela WrightJames Young87Zachary Howard2Benjamin Grant6wanderingharbor61Roger Hall15Zachary Booth3brightgardener8feralwolf24hiddentiger80Karen Fox36Elizabeth Diaz60slyseal28Linda Wright5James Martinez3Jeremy Kelly6gentlemoose62Maria Scott4shadowmason6Kevin Edwards35jadetinker42John Chase6 …
gentlemoose62 gentlemoose62 Active Member
105 messages
joined Jul 2008
#221 ·
Nancy Hernandez43 said:So... whether they're strict or not, they head there with their blood work from San Diego, check in first thing in the morning, and then I'm not really sure what happens next. All I know is my dad usually calls once they've been discharged, which is around 2 PM. I'll ask him in a few days, since I can't exactly ask her... They definitely seem to put in more effort over there than we do here. This time, they'll probably decide if she needs a follow-up CT or PET scan, and if so, she'll be heading to Chicago for the imaging in about two weeks.

Thanks so much for the support, I'll check back in soon!

Thank you! I was actually wondering if they perform CT/PET scans as follow-ups once the markers look good. I'm asking because I have the exact same diagnosis as your mom, and I haven't had any imaging done in five years now...🤷
Please let me know!
Zachary Howard2 Zachary Howard2 Newcomer
6 messages
joined Jan 2009
#222 ·
Grace Fowler said:Hey there, fighters!!
I’ve been a bit MIA lately because I’ve been dealing with an acute bout of sciatica (and let me tell you, it hurts like hell). To make matters worse, the painkillers and injections haven't done much of anything. And just to keep things interesting, my fever spiked again to 101.7°F. My bloodwork shows a massive inflammatory response—CRP is sitting at 187.8 when it should be under 5—which points to some kind of infection. It doesn't look like my kidneys or bladder are the issue, but if things don't settle down by Monday despite the antibiotics, I'll have to head straight to surgery. Fingers crossed everything stabilizes...
Not exactly thrilled about this, but here we are:-)
Sjebana : Hang in there, I know you CAN do this!!!!!
Best, Dina

I'm hoping for some good news on Monday, just like everyone else. I deal with lumbar sciatica myself, so I truly understand how miserable this feels.
Keeping my fingers crossed for you. Stay strong.👍👍
cosmicsurfer7 cosmicsurfer7 Member
36 messages
joined Mar 2008
#223 ·
Hannah Wells30 said:This is the diagnosis my friend's husband received.
His wife is in a coma, she just won't wake up, everything happened so fast...
Surgery isn't an option, so they're looking at radiation and chemo.....
Does anyone know anything about this disease... any experiences from families dealing with it...
THANKS FOR ANY INFO!

Look, this is a type of brain tumor that's mostly considered inoperable. Treatment usually involves radiation and chemotherapy. Temozolomide is generally the most effective chemo option. It tends to spread through the frontal lobe and is quite diffuse. It technically falls under the category of Grade III astrocytoma. As for the prognosis? Honestly, it’s hard to say because everyone is different. It shows up more often in kids than adults. We don't really know what causes it, and usually, the first sign is intense headaches before things take a sudden turn.!!!
FAITH IS THE ANSWER!!!
Roger Hall15 Roger Hall15 Active Member
107 messages
joined Jul 2003
#224 ·
Nancy Hernandez43 said:My mom went through some pretty intense testing over at Boeing yesterday, and of course, my dad just sent a quick text saying "everything is fine." It’s the usual routine, really—they're somewhere on their way back now, and I won't actually know anything more for a few days.

I'm honestly a bit stunned when I think about how much everything looked last year around this time compared to where we are today. I really want to say thanks to everyone on this forum, because it was here that I found both the emotional support and that massive pile of information I was trying to pass along to my mother. Let's just hope this good health holds up for a while... so we can finally start moving past all that constant anxiety.

The fight goes on,

hang in there, you warriors. kiss


👍 It’s honestly such a breath of fresh air to read news like this! 🙂
brisktinker12 brisktinker12 Newcomer
1 message
joined Jun 2008
#225 ·
About a month ago, my mom was diagnosed with diffuse large B-cell lymphoma—non-Hodgkin, specifically—at stage IVa, and there’s also this CD20+ marker mentioned in her report. She just finished her first round of chemo and is gearing up for the second; so far, the plan they've laid out is rituximab every three weeks. Does anyone happen to know more about this specific therapy or what dealing with this stage actually looks like?
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#226 ·
gentlemoose62 said:Thank you, I was actually wondering if they perform CT/PET scans there for follow-ups once the markers look good... I ask because I have the exact same diagnosis as your mother, yet I haven't had any imaging done in five years🤷
Please let me know

From what I gathered during my last conversation with my father, the answer is yes. Her markers have been stable for six months now, and during her check-up back in February, the doctors suggested a CT/PET scan just to be absolutely certain there isn't any metastasis, given that it’s been a year since the surgery. Apparently, over there—much like here in the States—a scan can cost around $1,500, though there might be an option to get it done in NYC for next to nothing if one has supplemental health insurance. My father mentioned something about a Mayo Clinic? Does anyone happen to have any insight regarding them? He supposedly already reached out to inquire, though he hasn't shared the specifics with me...

My parents are returning to America tomorrow, so hopefully, I will have more information to share then...🙂

Forgive me for being so brief with these updates, but I suppose you are all still stuck with me...
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#227 ·
brisktinker12 said:My mom was diagnosed about a month ago with diffuse large B-cell non-Hodgkin lymphoma, stage IV, and she's got this CD20+ marker. She just finished her first round of chemo and is gearing up for the second; they have her on a schedule for Rituximab every three weeks for now. Does anyone actually know what they're dealing with here? I'm looking for any insight into the therapy or what stage IV really implies in this context.

http://www.mayoclinic.org/diseases-conditions/non-hodgkin-lymphoma/symptoms-causes/mc_00301220
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#228 ·
My parents have finally made it back home. Conversations with my mother have devolved entirely into discussions about handbags, as she seems determined to evade any mention of the hospital at all costs. I am not sure how other caregivers are coping with this, but ever since she fell ill, she has taken to sketching obsessively and buying bags with a manic intensity! Honestly, I don't think I have enough closet space left to hold even 😂
of them.
Anyway, moving on from that! gentlemoose62 was asking about the full scope of the examination process at Boeing. To clarify, you get the bloodwork and marker tests done in San Diego, and then you present those results at the hospital in Boeing. Once there, you first see your gynecologist, who performs an exam and provides a professional opinion regarding the next steps and when the follow-up should occur. With that assessment in hand, you visit your oncologist, who reviews all the findings along with that specialist's opinion to complete the evaluation. As my mother described it, they essentially performed a full physical assessment—searching for thickenings, checking lymph nodes and breast tissue... listening to the lungs. After a rather lengthy consultation, the appointment concludes with a diagnosis and the scheduling of subsequent appointments.

The next check-up is set for October 16th.

I am not certain how things are handled here, but in their system, once surgery and chemotherapy are finished, the patient is required to come in for a check-up every four months. If no metastases are detected within the first year, the requirement shifts to every six months during the following year.

That is all I have to share for now!

The weather in NYC is finally starting to feel a bit more normal... perhaps a change in season might help us all find a little more happiness and strength to keep fighting! Don't let them get you down! kiss
hollowsailor33 hollowsailor33 Member
15 messages
joined May 2008
#229 ·
My mom’s fighting pleural mesothelioma—she’s been on chemo for three years now, hit about 35 rounds plus some 30-ish radiation treatments, and she's still hanging in there. Everything’s just getting worse, but she’s still with us. She’s taking raw propolis and iron supplements since her immune system is basically non-existent. We don't even know what else we haven't tried at this point, but nothing seems to actually move the needle anymore. They just keep sending her back for more chemo. Honestly, feels like they're just waiting for everything to finally give out...
Rebecca Young63 Rebecca Young63 Newcomer
3 messages
joined Jun 2008
#230 ·
Hi everyone. I had a mastectomy due to breast cancer at the beginning of May. I'm supposed to start chemotherapy in a few days, but honestly, I am terrified.
I’m only 24, and it feels like life has thrown everything at me all at once. There are moments when I feel like I'm losing my footing, but I have every reason to keep fighting—my three-year-old daughter needs me. My biggest fear right now is the chemo itself; I just don't know how my body is going to handle it...

Hi...
Brenda Walker58 Brenda Walker58 Newcomer
8 messages
joined May 2008
#231 ·
Rebecca Young63 said:Hi, I had my breast removed due to cancer at the start of May. I should be starting chemo in a few days, but I am absolutely terrified.
I'm only 24 and life has already thrown everything at me. Sometimes I feel like I'm stumbling, but I have plenty of reasons to keep going—my 3-year-old daughter needs me. My biggest fear is the chemotherapy; I just don't know how my body will handle it.

Hey there.

Don't let the fear win, Rebecca Young63. I am so sorry you’re going through this at only 24. My mom is actually battling breast cancer right now too; she’s already on her third round of chemo, and honestly, she’s handling it better than expected. There’s no reason you won't pull through too, especially being young and otherwise healthy (my mom is 51). For the nausea, ask about Zofran—it works wonders for my mom. Don't you dare give up; that little girl needs her mom. You clearly have a lot of strength if life handed you this much to carry, but seriously—YOU CAN DO THIS. Never doubt that.
Hang in there!
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#232 ·
Rebecca Young63 said:Hi everyone, I had a mastectomy at the beginning of May due to cancer. I’m supposed to start chemotherapy in a few days, but honestly, I am absolutely terrified.
I’m only 24, and it feels like life has thrown everything at me all at once... Sometimes I feel like I’m just losing ground, but I have every reason to keep pushing forward—my three-year-old daughter needs me. My biggest fear right now is the chemo itself, and I just don't know how my body will handle it...

hey there...

Please, try not to let the fear consume you, because letting it take hold can really impact the whole recovery process. You have to push through this, and when you look ahead, just focus on being there for your little girl, free from this fear and the feeling that you're failing...

My father fought his first battle with cancer when he was right around your age. Even now, thirty-four years later, he remains just as resilient and determined as ever. That is exactly who you are going to be... Don't let the anxiety win; you have to fight. You're young, and you have an entire lifetime ahead of you—a life spent with your daughter... you simply cannot give up now...

Stay strong... kisses
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#233 ·
Rebecca Young63 said:Hi everyone, I had a mastectomy at the start of May due to cancer. I’m supposed to start chemotherapy in a few days, but honestly, I am terrified.
I’m only 24, and life has already thrown everything but the kitchen sink at me. There are moments when I feel like I’m buckling under the weight of it all, but I have every reason to keep fighting—my three-year-old daughter needs me. My biggest fear right now is the chemo itself; I just don't know if I can handle what it's going to do to my body.

Hey there.

Everything you're feeling right now—that internal chaos and anxiety—is completely valid and totally normal.🙂 But listen, don't let the fear win. You have to look at this logically: you're facing a reality, and that reality requires a specific solution, which is chemo. Don't let fear drown you and hand the steering wheel of your life over to the disease. You need to be the one in the driver's seat, controlling the situation. If you approach it with that mindset, you'll manage much better and get back to being yourself. With an attitude like that, you're already winning the mental battle and moving toward full recovery. Check out our pages at the American Cancer Society to learn more about the process and what to expect regarding side effects.
Chemo isn't exactly a walk in the park, but it's definitely manageable. Plenty of people go through it without experiencing debilitating side effects. Your mindset and the support system around you are the most critical factors here. Stay positive!
Joshua King77 Joshua King77 Newcomer
4 messages
joined Jun 2008
#234 ·
Nancy Hernandez43 said:From what I gathered during my last chat with my dad—the answer is yes. Her markers have been fine for six months now, but back in February, they suggested a CT/PET scan just to be safe—you know, to rule out any metastasis since it’s been a year since the surgery. Apparently, whether you're abroad or here in the States, these scans run about $1,500, though there might be a way to get it done in NYC for next to nothing if you have supplemental insurance. Dad mentioned something about Quest Diagnostics? Does anyone know anything about them? He said he already reached out for info, though he hasn't shared the specifics with me yet.

My parents are flying back to the US tomorrow, so hopefully, I'll have more to share then.🙂

Sorry for being so vague—I'm still processing everything.

Regarding the PET/CT, I know from experience that you can get those scans done in NYC—and if you check www.questdiagnostics.com, you can find all the necessary instructions.
Feel free to ask if you need more details.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#235 ·
Joshua King77 said:Regarding the specifics on PET/CT scans, there is the option to have the imaging done in Chicago—which I know to be true from my own experience—and you can find all the necessary instructions and details over at www.questdiagnostics.com...
If any particular details catch your eye, feel free to ask...

I appreciate the information 🙂 I shall take a look now
wanderingharbor61 wanderingharbor61 Member
20 messages
joined Aug 2011
#236 ·
Nancy Hernandez43 said:Last time my dad and I talked about this, the answer was a pretty solid yes. Her markers have been looking fine for six months now—but back in February, during her checkup, the doctors suggested she get a CT/PET scan just to be absolutely certain there isn't any metastasis hiding somewhere, especially since it’s been a year since the surgery. Apparently, overseas, a scan like that runs you about $1,500, but here in the States, you can often get it done for next to nothing if you've got decent supplemental insurance. My dad mentioned something about Mayo Clinic? Does anyone actually know anything about them? He said he already reached out to get some info, but he hasn't really filled me in on what they said.

My parents are heading back to the States tomorrow, so I should finally have some more breathing room to write—fingers crossed.🙂

Look, sorry if I'm being a bit blunt with the info here—just bear with me and try to keep an open mind while I lay it all out.

I’m dropping the link to Quest Diagnostics right here on these pages—not that I want to keep repeating myself—but since you asked, here’s the absolute latest info:

The PET/CT scanner is located over at Mount Sinai Hospital, but since it’s actually run by Quest Diagnostics, you have to go through them to get everything scheduled.

Look, you have to print out their specific forms—Form A and Form B—directly from their website. And just to be clear, the oncologist is the only one who fills these out—I mean, the actual doctor referring the patient for the scan. Once that's done, you fax it over to them. They’ll give you an appointment time, but honestly, if you want things to move faster, just pick up the phone and call them directly. They lay out the whole registration protocol on their site anyway, so just follow the instructions there.

If you’ve got that supplemental insurance card, the checkup through Medicare is totally free—no strings attached. If you don't have it, though, you're stuck paying the copay yourself. Simple as that. $433

A private checkup’s gonna run you about $11. $0.00But honestly, everyone’s just sitting around waiting for the first available opening anyway—so there’s really no such thing as cutting in line. It all ends up being the same.

It felt like we were waiting forever—I mean, we applied back on April 10th and didn't even get an appointment until May 19th—so we finally just called it quits and went to Budapest instead. It cost us about $1,100 plus travel expenses, and the whole thing was organized by this company, DMGV PET CT America (I'm actually trying to pull up their website right now, but it won't load, which is just typical). From the moment we secured the slot to actually getting the scan done, the entire process took maybe seven days total. Fast.

Look, since your mom is doing okay and this is just a routine checkup, you should probably get her scheduled in NYC as soon as possible. We were actually rushing to get things sorted because my mom was diagnosed with metastatic melanoma—it turns out that follow-up was basically the only way they could figure out if the cancer had spread elsewhere, which, unfortunately, it had. 😢Look, you just can't pinpoint the epicenter using this method—it's fundamentally flawed.

To everyone fighting this battle right now—and to their families, too—I’m sending nothing but strength. You're going to need it, but I truly hope you find the grit and the success needed to pull through this.
Rebecca Young63 Rebecca Young63 Newcomer
3 messages
joined Jun 2008
#237 ·
Thank you all so much for the encouragement. I'm getting ready to start chemo tomorrow or the day after, so I'll check back in with you then. You've really helped me through this...
thank you, thank you, ..............
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#238 ·
Take a look at this and witness the absolute disgrace of a Secretary of Health:

Who is going to take responsibility for this beautiful woman? Who actually has the backbone to look her family in the eye and ask for their vote during the next election?☕
Disgusting.🙂
Frank Taylor4 Frank Taylor4 Member
17 messages
joined May 2008
#239 ·
hollowsailor33 said:My mother has pleural mesothelioma. She’s been on chemo for three years now—about 35 rounds plus 30 radiation treatments—and she’s still hanging in there. Everything is declining, but she's still with us. She takes raw propolis and iron supplements because her immune system is basically non-existent. We don't know what else we haven't tried, but nothing seems to make a difference anymore. They just keep sending her back for more chemo. It feels like they're just waiting for everything to fail...

Contact Dr. Slavoj Žižek (098-331-420). She's an immunologist with a highly effective solution. Using IP6 with inositol boosts the immune system, making chemo easier to handle. They even call this formula the Zodiac Killer because it works miracles. Check out www.inocell.com
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#240 ·
Frank Taylor4 said:Give Dr. Slavoj Žižek (098331420) a call—she’s an immunologist and she’s got a killer solution. They use IP6 with inositol to boost the immune system, which helps patients handle chemo much better. People are actually calling this formula the Zodiac Killer, it's incredible!!! Check it out at www.inocell.com

I wouldn't get carried away if I were you. It’s the same way people used to call Microsoft weird. Look, you should try everything available, but you really need to watch your back.

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