Resources and support for families dealing with cancer and serious illness

Scott Kelly3 said:Thanks for getting back to me; after reading that, my confidence in your expertise—based on real experience—is even stronger. You help so many people, and you can feel that coming back to you... just keep going. How is your mom doing? Your fight for her really touched me. It’s made you someone special.
I found out today that my cancer has metastasized (testicular cancer) to the lymph nodes in my abdomen—tomorrow I find out exactly what stage we're looking at, depending on how thick those nodes are. What I'm really wrestling with is which treatment path is actually better. Some people say to avoid radiation because of the risk of creating new complications by damaging healthy tissue. But then again, they say radiation is the most effective option specifically for testicular cancer. Can you recommend an oncologist for this type of tumor—someone you know is actually good? I've had some terrible experiences with doctors, so finding a solid professional is my top priority right now. I've already decided to seek out second opinions once I have all my results in hand. Thanks in advance, and sorry if I sound a bit on edge while writing this...

Your post really hit me hard😳, damn this disease😠! I honestly can't recommend an oncologist to you because I don't have any firsthand experience or knowledge regarding this specific kind of cancer. One thing I would suggest, though, is having a serious talk with your doctor about the future—specifically regarding the possibility of becoming a father, if you aren't already. I assume radiation plays a role in that, since it definitely causes tissue damage, and the big question is how that affects fertility. I'm not sure if there's a sperm bank nearby, but I'd highly recommend looking into that before you start any radiation, just to be safe.
You absolutely need to get a second opinion, if nothing else just for your own peace of mind. I’d suggest emailing your medical records to some of the major world-class clinics. Vpavi did exactly that, sending her husband's files to Houston, and they got a response immediately with some incredibly interesting suggestions—completely different from what they were being told at the local hospital. This is all part of the battle, and it would be great if someone close to you could shoulder some of this burden, because you're going to need to save every ounce of your energy.
My mom is doing very poorly; the only thing worse than this would be a coma. I can see it reaching its end, and I'm feeling this overwhelming mix of sadness that it's happening and relief that the suffering will finally stop.

I truly believe you can beat this. Even though we haven't met, I just have a gut feeling about you. You're going to be okay, and you'll come out of this episode stronger and more resilient. Just believe in yourself and the one above.👍
Hang in there, my friend.

dustysurfer10 said:Hey everyone,
I've been scrolling through all your posts all day long, and I'm really hoping someone here might be able to point me in the right direction.
My mom is battling breast cancer and she just finished her first round of chemo... but whether she realizes it or not, she’s really resisting going forward with more. Right before her second scheduled session was coming up, she started having some stomach pain (a few days prior)... and things just kind of settled down for a bit... so we waited for that second treatment, but when we finally got to the front of the line after waiting for five whole hours, she felt so nauseous they actually sent her home to "recover" instead.
Before this, she had some complications with her white blood cell count, so she ended up spending ten days at the Mayo Clinic...
Her reasoning is basically that the treatment is killing her, that she can't handle taking so many medications anymore, and that they're just destroying her stomach and everything...
I've tried my best to explain things to her, but I just can't seem to get through...
Does anyone have any ideas on what I should do next?
I heard there's a counseling center over at Johns Hopkins, but they're only open on Wednesdays, and I feel like this is pretty urgent...

You should definitely reach out to the counselors at Johns Hopkins or contact the women's cancer support group, Europa Donna. She really NEEDS to understand that her chances of recovery are so much higher if she sticks with the chemotherapy treatments.... I don't know exactly what stage she's at, but there can be NO GIVING UP!!! Try going with her to the support group; I truly think she needs to talk to other women who have gone through the exact same thing—everyone is terrified and what they go through is absolutely brutal, but she HAS to realize she isn't alone in this. Also, just a suggestion—go see Dr. Michelčić, he's a private specialist for breast cancer. Explain the whole situation to him—you might have to wait about a month for an appointment, but if you explain the urgency, maybe he can help... his number is 1-212-555-0199. Try calling after 1 PM, and on certain days of the week, you can even call him between 9 and 10 PM to ask anything you need—I can't remember which specific day it is, let me check later. He will sit down with her, listen, and give her all the attention and care that the hospital doctors just aren't able to provide fully. Good luck!👍

Does anyone know of an alternative to Reglan? She mentioned it really slows down her digestion too much, and Zofran just seems to shut her whole system down...

My mom has actually been using Aloxy for her nausea... She just finished her first round of chemo, and while she had a rough day with some vomiting, she didn't have any lingering stomach issues afterward!

Angela Wright, clear out your inbox so I can actually send you a PM.🙂

Angela Wright said:Your post really hit me hard😳, this damn disease😠 !. I honestly wouldn't know which oncologist to recommend—I don't have any real experience or insight when it comes to this specific type of cancer. What I would suggest instead is having a serious talk with your doctor about the future—specifically, your ability to father children down the road if you haven't already. I assume radiotherapy plays a role there, since tissue damage is a real concern and it leaves you wondering about fertility. I'm not sure if there's a sperm bank nearby, but I’d highly recommend looking into that before the radiation starts, just to be safe.
By all means, get a second opinion—if nothing else, just for your own peace of mind. You might want to email your test results to some of those big-name global clinics. John Smith did exactly that with her husband's records, sent them over to Houston, and they got a response right away with some incredibly interesting suggestions—totally different from what they were claiming at Mayo Clinic. It's all part of the fight, and it would be great if someone close to you could shoulder some of this burden, because you're going to need to save every bit of energy you have.
My mom is doing very poorly, and the only thing worse than this would be a coma. I can see it's coming to an end, and at the same time, I'm feeling this weird, conflicting mix of sadness that it's happening and relief that she won't have to suffer anymore.

I truly think you can beat this. Even though we haven't met, I just have a gut feeling about it. You're going to pull through this episode stronger than before—just believe in yourself and in the one above.👍
Hang in there, man.

Thanks for the advice and the support. My treatment starts next week with Dr. Griffin. Honestly, I couldn't do any of this without my wife—she's absolutely breaking apart for me. It hasn't metastasized to the organs yet, but they found some thickened lymph nodes... looks like I caught it just in time before it settled into the vital organs. I'm lucky.

Scott Kelly3 said:I really appreciate all the advice and support. I’m starting therapy with Dr. Griffin next week. Honestly, I wouldn't be standing here without my wife; she’s been absolutely breaking her back to take care of me. It hasn't spread to the organs yet, but they found some thickened lymph nodes... looks like I caught this just before it could settle into the vital organs. I've got some luck on my side.

I've heard Dr. Griffin is a top-tier oncologist, but he's so "swamped" you practically have to hunt him down through the hallways of the hospital. My advice? Try to get on his good side early.
Back when he was covering my mom's oncologist, we were constantly playing cat-and-mouse with him just to get basic referrals, wasting hours sitting in outpatient clinic waiting rooms just hoping to catch a glimpse of him. You need to stay one step ahead of his schedule. For instance, ask him upfront to write out all your lab orders for blood work at once. That way, you aren't trekking down to the clinic every single time you need a finger prick just to beg him to scribble a note, wasting half your day in the process. With our previous doctor, we had a much smoother system: she’d bundle all the necessary orders for an entire cycle of treatment into one go. Mom would just head to the lab on her own according to the schedule, grab her results in twenty minutes, and we’d only bother calling the on-call doctor at the clinic if something actually looked off.

Anonymous said:My aunt just finished her first round of temozolomide and some other medication yesterday, but she’s been hit really hard by it. She can barely stand up, and her appetite is nonexistent. What kind of supplements could I get her to help build her strength back up? She’s already taking Noni, Biogen, and CoQ10, plus plenty of fruits and veggies, but she can't touch meat. I'm struggling to figure out what works because, for example, Vitamin B isn't supposed to be taken alongside Biogen. If anyone knows anything—please help..

When dealing with loss of appetite and weight loss during chemotherapy, an oncologist might recommend "ProSure." In the US, it's available through specific medical channels, and if you have a prescription from a specialist, it's quite affordable—only about $0.80 per 2 oz carton. You just need to ensure the prescription explicitly states it's based on a specialist's recommendation.
The full retail price without a prescription for the same size is $13. The dosage is two cartons a day.
My wife has been using it for several months now and hasn't experienced any side effects at all.
For more details, check out the website http://www.prosure.ws/en/index.html
Best,

Has anyone checked out this page yet?
http://www.newscientist.com/article/...t-cancers.html

casualpanther1 said:If chemotherapy causes you to lose your appetite or drop weight, an oncologist might suggest using "ProSure." Here in the States, it's covered under certain insurance tiers, so if you have a prescription, it costs just about $0.25 per 2 oz tetra pak. Just make sure the doctor specifically notes on the prescription that it's being used based on a specialist's recommendation.
The retail price without a prescription for that same size is $13. You're supposed to drink two packs a day.
My wife has been taking it for months now and hasn't dealt with any nasty side effects from it at all.
You can find more details over at http://www.prosure.ws/en/index.html
Best,

Thanks! I'll check with some local pharmacies to see if they have it in stock.

Anonymous said:Has anyone actually looked at this page?
http://www.newscientist.com/article/...t-cancers.html

We've already covered this ground in this thread. Sadly, nothing has come of any of it yet.👎

Check your inbox, I sent you a PM.

casualpanther1 said:...

Hey lady, what's the latest update?
I'm hoping everything is still staying under control.🙂

Hey everyone! I finally made it home from that lab session—honestly, it felt like I’d been stuck in a centrifuge for 48 hours straight...
now I’m just waiting for this whole four-to-five day stretch of absolute hell to pass so I can actually be out in the world again... anyway, to everyone who reached out to check on me, THANK YOU for the support... you guys are seriously the best...:-)

Grace Fowler, hang in there... 😘 ...just keep pushing forward... I know you'll come out on top and stronger than ever because you're tough.

Does anyone have any advice regarding palliative radiation therapy? Like, what can we actually do during or after the sessions to help someone feel a bit more comfortable?
My dad is already feeling slightly better after just two cycles... though I'm worried his anemia might make a comeback. Any tips on how to keep his energy levels up?

Angela Wright.... sending big hugs!
Ines

Carol Sanchez2 said:Is there anything else besides Reglan? She says it slows her digestion way too much—and Zofran just completely shuts everything down...

My mom’s using Alcoa for the nausea... she just finished her first round of chemo, and even though she threw up one day, she didn't have any stomach issues after that.

Finally talked my mom into doing her second round of chemo.🙏 ...but now I'm low-key freaking out thinking the first round might happen all over again... her white blood cell count tanked, so she ended up stuck at the hospital for about 10 days. ((She spiked a fever over 101.3)), so they had her on Neupogen and antibiotics (plus some stuff for a fungal thing too)...
I heard they give Neulast (from Amgen) out there to prevent those white blood cell drops within 24 hours—do they offer that here in the States? I couldn't find it on the drug list... apparently, it's super pricey. How are you guys handling the daily white blood cell checks? I can't exactly drag her to the clinic every single day while she's this weak just to get tested... feels like we really should be doing something...
Anything works to boost her white cells naturally—besides beets and moringa...😕 😕

Thanks to everyone for the advice!

Anonymous said:Thanks! I'll check the local pharmacies here to see if they have any in stock.

Found it at a pharmacy over on Zvonimirovo near the FIN building... actually, they didn't have it sitting on the shelf, but they ordered it and it showed up the same day! My bad—not sure if you're even in Washington, D.C., but just a heads-up!

Carol Sanchez2 said:Is there anything else besides Reglan? She says it totally slows her digestion down too much, and Zofran just completely shuts her system down...

My mom’s using Alcoa for nausea... she just finished her first round of chemo, and even though she was throwing up one day, she didn't have any stomach issues after that.

Man, now I'm hearing about Torecen too... honestly, I'm just confused😲—like, what should anyone actually be taking?

Guys, we seriously need to get our doctors involved in this... I read somewhere that there are sites where people have compiled all this info... does anyone have the link?

vividowl10 said:Grace, hang in there......... 😘 ......just keep pushing......and you'll prove everyone wrong by being stronger than they ever imagined

Can anyone please offer some advice regarding palliative radiation therapy? I'm looking for ways to manage things during and after treatment to help someone feel a bit more comfortable.
My dad is actually feeling slightly better after his second round... though I'm worried the anemia might come back to haunt him. How can we help him maintain his strength?

Angela Wright....huge hugs from Ines
Ines

Beets and broccoli are absolute essentials. I know people swear by drinking strained beet juice, and obviously, all those supplements we're constantly discussing here can really help make a difference.

Hi everyone.
I’m checking back in after being away for quite a while—I went through a depressive episode, but things are feeling a bit more stable now. My husband and I are currently finishing up our tenth cycle of Temodar therapy, and he’s about to start magnetic therapy next... I was wondering if anyone here knows how long the Temodar treatment typically lasts? Is there a standard number of cycles, or is it just something doctors decide on a case-by-case basis? It’s been a year since his diagnosis, and I've basically been riding this Temodar wave right alongside him the whole time...
YOU GUYS ARE THE BEST SUPPORT SYSTEM EVER!!!!!!!div>

Nathan Bailey said:Hey everyone!
I’m checking back in after being away for a while—I went through a depressive episode, but I’m doing better now. My husband and I are currently on our tenth cycle of Temozolide, and he's about to start radiation. Does anyone know how long they typically prescribe Temozolide? Is there a set number of cycles, or is it just based on the doctor's discretion? He’s been sick for a year now, and I’ve been right there with him through every single round of Temozolide.
YOU GUYS ARE THE BEST SUPPORT SYSTEM EVER!!!!!!!

That hits close to home for me too. 😕 My mother’s husband, who was treated at Vanguard, and another patient at Mayo Clinic both started with 30 sessions of radiation combined with Temozolide, followed by a six-month cycle of taking Temozolide five days a month.
It seems like oncologists just make it up as they go based on their own judgment. They kept telling us that you don't use Temozolide for a recurrence because there wouldn't be a response, but once Vanguard sent the lab results over to Houston, they actually pushed back. They were baffled as to why treatment wasn't continued, especially since the patient had responded so well the first time around.
Honestly, I'm just fed up with doctors and their constant "experiments" and stubborn beliefs.