Resources and support for families dealing with cancer and serious illness

Diana,
please accept my most sincere condolences.
Stay brave and stay strong—we simply have to find a way to carry on.

Diana dear,

My dad passed away with that exact same look on his face, holding onto such intense optimism until the very last second.
I feel just like you do... like I should have handled things differently, or maybe even given up sooner than I did. I became absolutely obsessed with making sure he had the most painless exit possible and squeezing out every single bit of "quality" life he could get.

But then again, looking back, my whole world basically shrunk down to this wild, frantic hunt for some miracle potion, a new medicine, or any scrap of info I could find... ever since the day we found out he was sick.

The feeling keeping me going isn't even sadness anymore; it's more like this mix of anger, the sense of having lost a war, and finally realizing that he is finally at peace. Paradox!

Both my husband and my grandfather were taken by cancer (one right after the other). When I tried to ask him what kind of future our family was facing once the metastasis was confirmed, he told me that the absolute worst thing about this disease is how it drags the entire family into the wreckage and breaks everyone completely. He wasn't kidding!

It makes total sense to me now... though I didn't grasp it back then. Please accept my sincerest condolences!

At least my dad got to live a real life... it truly feels so unfair!

Your kids need their mom... take care of yourself, Ines

I neglected to mention that I have four Navoban Tropisetron tablets available. If anyone happens to be using them and is looking to pick some up, please don't bother buying more—they are mine to give. I believe they go for about twenty dollars a pop, so save your money and just send me a PM if you need them.
My mother used to rely on them to manage the intense nausea and vomiting that follows chemo sessions.
Additionally, I have some homeopathic pellets intended for post-chemo nausea and vomiting. I’m happy to pass those along as well to anyone who uses them. It truly feels like a waste to let them sit idle here when someone out there might be struggling and desperately searching for any way to find relief.
Best regards,

Grace Fowler said:Hey everyone!!!
So, the results are finally in... and honestly, I don't even know what to tell you guys. The situation is pretty much the same as back in May when they diagnosed the recurrence with those metastases in the lungs (something has really taken root there and just won't budge). On the bright side, they spotted some calcifications, which means the chemo actually did something, and there hasn't been massive progression of the disease. This Monday, I’m taking everything to the oncology board so they can decide the next move. It'll probably be more chemo because I've hit the limit on radiation for my hip area—I can't take any more in that spot. I'm not exactly falling apart over it; maybe I was hoping for a slightly better outcome, but hey, it is what it is. I'm just pushing forward... though I have to admit, even after fighting this war for nearly nine years, whenever these bad results roll in, a certain amount of anxiety always creeps in. I can't keep spinning my wheels in circles, so I'm just moving ahead based on that. Thanks to everyone for the support... I'll check back in once I get the orders on what happens next...
Stay kind and stay brave.
Your Diana

Diana, hang in there!!!

Linda Campbell said:I forgot to mention that I have 4 Navoban Tropisetron tablets if anyone happens to be using them and wants to save some cash—they're mine to give. I know they go for about $20 a piece, so don't buy them, just shoot me a PM.

Did they actually work? I've never heard of that one. My mom is struggling pretty hard during her chemo, and we're just wondering when she'll be strong enough for the next round. Her blood counts just won't stabilize.
And what about Zofran? Is anyone using that? Does anyone know the price?
Thanks!

Zofran is ondansetron, while Navoban is Tropisetron. Word on the street is that they’re both highly effective options. You should probably check in with your oncologist or do a bit of digging online yourself—but if you want me to hunt down some specific info for you, just say the word and I'll send it over.

Grace Fowler said:Hey there, everyone!!!
So, the results are finally in... honestly, I don't even know what to say... basically, things haven't changed much since May when they diagnosed the recurrence with some metastases in my lungs (something just decided to settle in there and won't budge). On the bright side, they saw some calcifications which means the chemo actually did something, and the disease hasn't progressed too much. This Monday, I’m taking everything to the oncology board to figure out our next move. It'll probably be more chemo because I can't do any more radiation in that area—I've hit the limit for that spot... I'm not feeling super down about it, though. Maybe I was hoping for a slightly better result, but hey, it is what it is... I'm pushing forward... though I have to admit, even after fighting this war for almost nine years, whenever bad news hits, that anxiety still creeps in. I won't keep repeating myself since I can't change the past, so I'm just moving ahead... Thanks to all of you for the support... I'll check back once I get the orders on what happens next...
Stay kind and stay brave.
Your Diana

This is actually my first time posting on a forum, but I decided to start right here with you, Diana, because I truly admire your strength and spirit, especially now when you were probably hoping for so much more. I totally get where you're coming from, because I've been battling ovarian cancer since 2001, and I know exactly how it feels when the illness comes back. So far, I've dealt with three recurrences, and I've been incredibly lucky that since my last one in October 2003, the beast hasn't shown up again! My stage was IIIc with a CA 125 of 1750—so yeah, it had progressed.
I just wanted to reach out and encourage you, because there are so many similar stories where the disease either stabilizes or just stays away, even after multiple recurrences.
You're a fighter, this is your battle, and you're going to win it!

gentlemoose62;11486531 said:

Grace Fowler said:Hello, my dear friends!!!
So, the results are finally in... I honestly don't even know what to say to you all... basically, the situation is nearly identical to how things looked back in May when they diagnosed the recurrence with metastatic changes in the lungs (something has decided to settle in there and just won't budge). On the bright side, they spotted some calcifications which suggest the chemo actually did its job, and there hasn't been massive progression. On Monday, I’m taking everything to the oncology board to decide on the next steps—likely more chemo, since I can't radiate my hip anymore; I've reached the maximum dose allowed for that area. I wouldn't say I'm overly devastated; perhaps I was hoping for even a tiny bit of better news, but what is, is... I'm pushing forward... though I have to admit, even after fighting this war for almost nine years, whenever those bad results roll in, a certain amount of anxiety always creeps in. I won't keep repeating myself like a broken record, so based on that, I'm just moving ahead... Thank you all for the support... I'll check back in once I get instructions on what comes next...
Stay kind and stay brave.
Your Diana

This is my first time ever posting on a forum, but I decided to start right here, with you, Diana, because I truly admire your strength and spirit, especially now when you were likely expecting much more. I understand you completely, because I’ve been battling ovarian cancer since 2001, and I know exactly how it feels when the disease makes a comeback. Up until now, I’ve had three recurrences, and I was incredibly lucky that after the last one in October 2003, the damn thing hasn't shown up again! My stage was IIIc—CA 125 was 1750—so, it had progressed. I just wanted to share that to encourage you a little more, because there are so many similar cases where, even after multiple recurrences, the disease either stabilizes or stays away for good. You are a fighter; this is your battle, and you are going to win it!

We all need stories like this... you really are a warrior, I admire you! 👍

This is actually my first time ever posting on a forum, but I decided to start right here with you, Diana, because I truly admire your strength and spirit, especially now when things feel much harder than you expected. I completely understand what you're going through, as I have been fighting ovarian cancer myself since 2001, and I know that hollow feeling when the illness returns. Up until now, I’ve dealt with three recurrences, and I was incredibly lucky that after the last one back in October 2003, it hasn't shown up again. My stage was IIIc—with a CA 125 of 1750—so, quite advanced...
I just wanted to reach out and tell you this to offer some encouragement, because there are so many similar stories where the disease either stabilizes or simply stops coming back, even after multiple recurrences.
You are a fighter; this is your battle, and you are going to win it!

gentlemoose62,
your words reminded me so much of my mother. She was diagnosed with the exact same stage of cancer, and after six months of an exhausting struggle and six grueling rounds of chemotherapy... they couldn't find any cancer cells. Her next checkup isn't for another two and a half months, and I am praying that these results hold steady, or better yet, improve...

How are you feeling today? Kisses, and I am just so glad I read your response!

I have 10 bottles of 5% glucose left—along with 10 infusion sets—and 11 ampules each of vitamin B1 and B6. If anyone could use them, please send me a private message; I'm happy to give them away. Could you please let me know this week? Otherwise, I'll just drop them off at the clinic—they have an expiration date, after all, and I really don't want them to go to waste...
(NYC)

electricgardener14 said:...And that was how he wanted to live. Even when he became immobile—when he couldn't move even his hands or feet—that spark, that will to live, never left his eyes. Sometimes I get this feeling that I gave up before he did; that I could have fought harder, tried one more thing. That I let him go far too easily. It's so incredibly hard for me, and I don't think I'll ever forget that last conscious look in his eyes. It held all the sorrow in the world. Does it always have to be this painful?!
electricgardener14

I find myself battling those exact same thoughts in the middle of the night... reliving every single moment, every conversation, every word, every glance, every touch. It is just devastatingly difficult. I constantly blame myself—wondering if I didn't give everything I had. If I could have done more, or better... but I didn't....
I still find myself staring out the window whenever I leave or come home, desperately hoping I'll see him just like he used to—welcoming me with such joy, walking beside me—hoping it was all just a nightmare...
Yesterday would have been his and his mother's 31st wedding anniversary...
I feel neither hunger nor thirst—only helplessness and rage... an immense sadness... a gaping hole right through my heart...

Grace Fowler said:Greetings, my dear friends!!!
So, the results are finally in... and honestly, I don't even know what to tell you... the SITUATION is almost exactly where it was back in May when they diagnosed the recurrence with metastases in the lungs (something has just settled in there and won't budge). On the bright side, they spotted some calcifications—which means the chemo actually did its job—and there hasn't been huge progression in the disease. This Monday, I’m taking everything to the oncology board to decide our next move; it will likely be more chemo since I can't radiate my hip area anymore—I've hit the maximum limit for radiation there... I wouldn't say I'm overly devastated—maybe I was hoping for just a tiny bit better news—but what is, is... I keep pushing forward... though I have to admit, even after fighting this war for nearly nine years, whenever those bad results roll in, a certain amount of anxiety always follows. I won't keep repeating myself like a broken record, so based on that, I'm moving ahead... Thank you all for the support... I'll check back in once I get the orders on what comes next...
Stay kind and stay brave.
Your Diana

Diana, don't give up—don't surrender for any of us—we are all right here with you... 😘

brightgardener8, I hope my experience can offer some comfort here—my husband also had a really rough time dealing with Temodal, especially during those last few cycles...
ZOFRAN tablets go for about $93 and I’d definitely suggest them; my husband made it through every single chemo cycle thanks to Zofran. To help get his blood counts back up, he used this Taheebo tea you can find at health food stores for around $12.

I’m still thinking about all of you. I’ve been weighing the idea of starting a dedicated psychology thread—assuming one doesn't already exist—specifically for those of us who have lost our loved ones. To be honest, I still need support, but it feels a bit off asking for it here among people who are fighting to stay alive, rather than dealing with the thing that brought death to some of ours. It feels counterproductive, and technically, it would be off-topic.
Of course, that doesn't mean I won't be dropping by to offer support and advice whenever I can.

Angela Wright said:My dear friends, you are all still very much on my mind. I am considering starting a new thread dedicated to Psychology, provided one doesn't already exist, specifically for those of us who have lost our most precious loved ones. I find myself still needing your support, yet it feels somewhat unfair to seek it here among people who are fighting for their lives, rather than against the very thing that brought death to others. It seems a bit counterproductive, and technically, it would be an Off-Topic post.
Of course, that doesn't mean I won't be stopping by here to offer support and advice whenever I can.

That is an excellent idea. We certainly need a dedicated space for support and assistance, and I believe a new thread would serve everyone better.

Linda Campbell said:That’s a great call. We definitely need a space for support and mutual help, and I think starting a fresh thread is the way to go—it keeps things organized for everyone.

Here it is: "Support thread for those who have lost loved ones after fighting a serious illness"

Please reach out here.

[QUOTE=brightgardener8;
What about Zofran? Is anyone using it? Does anyone know how much it costs?
Thanks!

brightgardener8,
My wife was given Zofran in the outpatient clinic as part of her treatment alongside Temodal.
She only needed it for a few days at the very start of the therapy, and after that, it wasn't necessary anymore.
If you're dealing with nausea after taking Temodal, try talking to the oncologist about getting it prescribed as part of the regimen.
Best regards,

brightgardener8 said:Grace, hang in there!!!

Did they actually work? I've never heard of them. My mom is having a really rough time with her chemo—it’s basically a waiting game now, just wondering when she’ll be strong enough for the next round. Her blood counts just won't stabilize.
And what about Zofran? Is anyone actually using it? Does anyone know how much it costs?
Thanks!

Are you in NYC? If you are, head over to that pharmacy on Martic Street—I think it's called Paladino—or just give them a call. They sell Zofran by the pill; I believe they have 25mg and 50mg doses. The weaker ones were $20/pill, and the stronger ones used to be $33/pill (don't quote me on that, though—it's been nearly two years since I bought some for my dad). You'll need to get the oncologist to write you a prescription, though—not just a one-time thing, but a long-term one or whatever the official term is. Regardless, Zofran is excellent for nausea, but you have to take it before the chemo or radiation starts. If I remember correctly, you take one before radiation and then another after 24 hours. Just Google "Zofran"—everything you need to know about usage is out there if your English is up to par. I'm pretty sure it's Pfizer's product.

Megan Lewis said:Are you in NYC? If so, head over to a pharmacy on Broadway—there's one called Paladino, or just give them a call. They sell Zofran by the pill; I think they have the 25mg and 50mg doses. The weaker ones were $20/pill, and the stronger ones used to be $33/pill (don't quote me on that, though, it's been almost two years since I bought them for my dad). But you'll need to get an oncologist to write you a prescription—not the temporary kind, but a long-term one or whatever the hell it's called. Anyway, Zofran is killer for nausea, but you have to take it before chemo or radiation. If I remember right, you take one before radiation and the second one 24 hours later. Just Google "Zofran" and look up how to use it; if your English is decent, you'll find everything. I think it's Pfizer's.

Thanks to everyone for the advice! I'm going to try to get the Zofran sorted before the next round of chemo, which should be coming up soon—fingers crossed! The blood work has improved a bit, but I'm not sure if it's enough. We've tried pretty much everything: from Beta glucan and Propolis to yogurt with yeast, Taheebo tea, and even mixtures of carrots, beets, apples, and horseradish...

Angela Wright, I think there was a similar thread over on Psychology once. I stumbled upon it while browsing, but it went quiet. I really hope to see you around here too; you've helped us out so much with concrete treatment advice and just being there for us. Honestly, some of your posts are things people should be reading every single week.🙂

Maybe looking for support after losing our loved ones doesn't strictly belong here, but unfortunately, it's an inseparable part of this whole journey. It’s only rare for some. I think, in the end, it actually helps us prepare ourselves better. Though sometimes—very occasionally—I feel like maybe it would have been better if I hadn't learned all this stuff on these pages. Still, the help I've found here carries so much more weight.

When I was reading the post from northernfox9 yesterday, I felt like saying something just to cheer her up a little, but I couldn't quite bring myself to do it. It's just hard... Thank God there are plenty of you here who always say the right thing. northernfox9, we're still reading you!

Hey everyone. Is anyone here—or anyone close to you—currently seeing Dr. Grgic or Dr. Gamulin over at the University Hospital? I’ve been seeing Dr. Grgic personally for four years now, but I heard some news yesterday that absolutely floored me. Apparently, Dr. Grgic, Dr. Gamulin, and a few other oncologists have been barred from treating all other types of cancer. Specifically, those two have been restricted to just urinary tract cancers, which means the rest of us are being forced to hunt for new oncologists. They basically just "stripped" them of all their other patients. Now, after four years, I can't even see my own doctor anymore! It feels criminal—it's like our right to choose our own physician has just been snatched away. I'm still reeling from this. Does anyone else know anything about what's going on? Sending love to you all, hang in there...😕 😠

shadowheron4 said:God bless you all. Is anyone here, or is anyone close to you, being treated by either Dr. Grgic or Dr. Gamulin at the University Hospital? I’ve personally been seeing Dr. Grgic for four years now, but yesterday I heard some news that absolutely floored me. Apparently, Dr. Grgic, Dr. Gamulin, and a handful of other oncologists have been barred from treating all types of cancer. Specifically, those two have been restricted solely to urinary tract cancers, which means the rest of us have to go find brand new oncologists. They’ve essentially had all their other patients "stripped" away from them. Now, after four years, I can't even see my own doctor anymore! This is criminal—they are stripping away our constitutional right to choose our own physician! I’m still reeling from this. Does anyone know anything about what's going on? Sending my best to everyone, stay strong...😕 😠

Oh, please, no—Dr. Grgic will definitely continue to take care of you. Look, the reality is that almost all oncologists specialize in specific types of cancer. It seems like they’ve decided to tighten up the organization at the University Hospital, so what feels like a huge injustice to you is actually just standard medical practice. They probably brought in new staff to cover the gaps. While my mom was being treated by Dr. Gamulin, she was working on her doctorate, which she likely just finished; it makes perfect sense that she'll be focusing on the area where she is most highly specialized. For most cancers, there are established treatment protocols, so theoretically, it shouldn't matter who is leading your care. However, since the University Hospital is a research hub, they focus on studying and researching new treatments based on which doctors specialize in which specific tumor types.