Support resources for families dealing with cancer and other serious illnesses

casualrider21 said:And yeah, I asked about this once before... They put him on Zometa, he took one dose, and then the Department of Health wouldn't approve any more.
Now he's taking Aredia; they claim it’s basically the same thing and works just as well.
Do you know anything about that?

I haven't a clue. Just head over to the Association's forum and ask Dr. Jasan.

Is he taking anything for the pain?
Look, just because things feel shaky right now doesn't mean they'll stay that way. Life is a series of fluctuations. One day is a disaster, the next is an improvement—that's just how the pendulum swings. Something eventually has to swing back toward the positive.
Hang in there.

He’s been cycling through everything under the sun—Voltaren, Tramal, you name it... even mixing them up.
It didn't really touch the pain, honestly, so we switched over to injections whenever things got bad.
We’re doing everything in our power to stay away from actual morphine.
These pains absolutely wreck him, leaving him totally wiped out, but man, he’s got such a bright spirit, it’s hard to believe.
Even while he’s suffering, he isn’t a burden to anyone; he’s still busy worrying if someone is walking around the house too loudly and giving us little reminders. 😁

He’ll be alright.

casualrider21 said:Seriously, enough ALREADY!!!
I’m just sitting here reading your posts.
IT’S DISGRACEFUL!

You’ve missed the mark on everything—the location, this forum, and the "audience" you're addressing. All of you, without exception.

Do you have any idea how much you're negatively impacting people who come here looking for even a shred of comfort or a kind word of support?!

My blood runs cold every single day; I don't know how much more of this pain my heart can take... and yet, here you all are, bickering over the pros and cons of conventional versus alternative medicine. Picking sides and arguing why one works and the other doesn't.

Everyone should be free to express their own opinion, support whatever they believe in, and keep their criticisms to themselves. Especially when it comes to insults.

I think life is hard enough for everyone here without us wasting time on this kind of nonsense.

Come on, bury the hatchet and let's get back to being decent to one another.👍..I hope for some positive news and better vibes.

Signing off. It seems if I wanted my grief over my husband's current condition to be trivialized, I would have stayed "on the sidelines" talking about Lung cancer. Instead, I am speaking honestly, from the heart.

casualrider21 said:He’s tried everything from Voltaren to Tramal—he was practically drowning in them... combinations, too...
None of it really hit the mark, so we switched to injections (as needed).
We are doing whatever we can just to avoid moving up to actual morphine.
The pain wipes him out to the point of passing out, yet he stays incredibly cheerful; it’s honestly hard to believe.
Even while suffering, he isn't a burden to anyone—he's still busy worrying about whether someone's walking through the house too loudly and giving us reminders.😁

It’ll all work out.

I think it would be wise to start him on Durogesic patches. If I recall correctly, that’s fentanyl—an opioid, but not quite morphine—that releases steadily through the skin over a 72-hour period. It makes maintaining a steady dose much easier, and you can always supplement it with Tramal if necessary.
There is absolutely no reason for him to endure this level of pain; pain is exhausting, and it drains the very strength he needs to keep fighting.

My husband’s been on Durogesic for a good while now—started back when he was just 25, and now he's hitting 50. He also uses Tramal whenever things get rough. Honestly, it does the trick; he’s mostly pain-free. But we had this one nightmare scenario recently where we totally missed a dose change for his Durogesica. It was absolute chaos. He was in such agonizing pain in his arms and legs... just brutal, until the new patch finally kicked in and started working.

gentletiger46 said:Hey nela25 - first off, take a breath. Your GP really missed the mark by throwing around a cancer diagnosis so casually—you can't call it cancer without a solid cytology report. Obviously, any mole that's bleeding is super sketchy, but you guys did the right thing checking it out. If you can, try to talk your mom into seeing a specialist ASAP, even if it means going private, because with melanoma, every second counts. I don't know where you're located, but I know there are plenty of great private clinics in Washington, D.C. with top-tier equipment that can check suspicious spots and even remove them on the spot. I'll shoot you a DM with the contact info for the dermatologist my mom and husband used to get their moles removed.

Unfortunately, we aren't in D.C., but thanks anyway for the offer. And even if I were in D.C., it's not like she's being stubborn just to avoid paying for a private doctor. She actually made an appointment the day before yesterday and then just... didn't go. Honestly, if that GP were anything to worry about, she would've heard from me. 🤷

Grace Stewart6 said:Hey nela,

It was the exact same thing with my mom. The spot looks just like what you described. Her GP first gave her some cream, but when that didn't work, she sent her to a dermatologist. Luckily, we didn't have to wait forever here. The dermatologist suspected carcinoma and sent her to surgery to have it removed and sent for testing. The surgeon told my mom she wouldn't be scheduled for the procedure for another 2.5 months.
It’s enough to drive you crazy.
We ended up going to a private clinic and she had the surgery last week. She’s getting the stitches out in a week and a half, and we should have the results by then. I am terrified of what those results will say.
I'll definitely let you know the results and what happens next.
By the way, my mom was also totally against going to a private doctor. It was such a struggle to convince her. Now she doesn't regret it, since we'll have answers soon, whereas otherwise she would've been waiting until the end of May just for the surgery.
Keeping my fingers crossed that everything turns out okay, and I definitely recommend going private.

I don't know, I just called my mom and they told her to come in Tuesday and they'll remove it immediately. 😕 If they don't do it right away and she ends up having to wait, I told her I don't care, we're going to a private clinic.
She just told me that I'm worrying more than she is. Let us know the results, keeping everything crossed that it'll all be fine. 👍👍👍👍

The Zometa finally showed up. Jutos was dealing with some of his worst pain yet, so they sent him home with it.
Tomorrow we’re going to touch base with the doctor and start on the Duragesic patches.

I was just thinking, when his bone pain isn't hitting him, he’s like a total powerhouse.🤷 Man...

Keep pushing!

Personally, despite my name, I’m not really looking for a debate—but I truly cannot stomach people who profit from those facing the toughest illnesses. They sell smoke and mirrors using the exact same old tactics: half-truths and twisted data designed to sound authoritative, yet they have absolutely nothing to say when faced with actual questions or logic. If my sharp tone hurt anyone's feelings, I'm sorry, but I honestly view those kinds of people as being just as criminal as murderers. Anyway, enough of that.

Here is a little bit of good news from my side—it's been a week since my first round of chemo (I'm dealing with Hodgkin lymphoma) and I feel fantastic. No mouth sores, my hair is still intact, I'm working, and I'm barely even thinking about the illness. In fact, that intense pain in my breastbone that's been haunting me for the last few weeks—caused by that massive growth in my mediastinum—has almost completely vanished! Maybe the tumor is shrinking and suffering? I hope it's squirming and screaming in pain; I actually enjoy imagining it as some sort of giant rotisserie chicken on the chemotherapy fire.

I've been tracking my veins with Heparin cream in hopes of preventing them from hardening up. I'm taking beta-glucans and various vitamins, eating healthy (lots of fish rich in omega-3s, veggies, fruit, pineapple...), and all that. I picked up this lovely green and white tea from a Green tea house (a little shop in Washington, D.C., near the Hunting horn) that smells wonderful and even has bits of real fruit in it. My mom tells me they also have mint—which helped my nausea immensely—and ginger. I'll try them next week during my treatment and let you all know how it goes.

holloweagle6—Oh, that's great, they seem quite proactive. Take your mom and yourself for a nice stroll along the coast, then grab some ice cream on the boardwalk so you can both forget about all this for a while. But do try to convince your mom to go private if the wait for surgery is too long (though, I don't quite get what there is to wait for here; it isn't like it's major surgery under general anesthesia, most things are outpatient—my husband had two large moles removed all at once in just thirty minutes!). Melanomas move incredibly fast and aggressively, so any delay is dangerous. It's much better to be overly cautious and hurry rather than waiting around.

casualrider21—Wishing you lots of luck.

Oh, thank God, finally some good news! Beautiful!👍

I hope all those bastards end up crawling and screaming like this.. They’ll regret ever stepping foot inside a human body 😉
They won't get a single drop of Tramal, or morphine, or any patches—absolutely nothing... We'll just sit right here in front of them, watching them suffer and saying, "What happened? Oh, nothing at all... just DIE!" 😁

Hang in there!

gentletiger46 said:Personally, despite my name, I’m not really interested in debating—however, I truly cannot stomach those who profit from the most critically ill by selling snake oil using the exact same tired methods... half-truths and twisted data used to mimic expertise, yet they possess no actual counterarguments when faced with concrete questions or logic. I apologize if my sharp tone has offended anyone, but I consider such individuals to be just as criminal as murderers. Anyway, enough of that.

Here is a little bit of good news from my side—it has been one week since my first round of chemo (I have Hodgkin lymphoma) and I feel quite wonderful. No mouth sores, my hair is still firmly on my head, and I am working while thinking very little about the illness. In fact, that intense pain in my breastbone that plagued me these last few weeks—a result of a large growth in my mediastinum—has almost entirely vanished! Perhaps the mass is shrinking and suffering... I can only hope it is squirming and screaming in agony; I find a certain enjoyment in imagining it as some sort of giant rotisserie chicken over the flames of chemotherapy...

I am tracking my veins with Heparin cream in the hopes of preventing them from hardening. I am taking beta-glucans and various vitamins, eating healthily (plenty of fish rich in omega-3s, vegetables, fruit, pineapple...), and so on. I picked up a lovely green and white tea from a Green tea house (a little shop in Washington, D.C., near the Hunting horn) which smells divine and even contains bits of real fruit. My mother tells me they also carry mint—which was incredibly soothing for my nausea—and ginger. I plan to try them next week during my treatment and will let you all know how it goes...

holloweagle6—that sounds great, they seem quite proactive. Take your mother and yourself for a nice stroll along the coast, then grab some ice cream on the waterfront to help you both forget about all this. But do try to persuade your mother to go privately if the wait for surgery is long (though, I don't quite understand what there would be to wait for, given it isn't major surgery under general anesthesia—everything is outpatient, after all; my husband had two large moles removed at once in just thirty minutes!). Melanomas are incredibly fast and aggressive, and any delay with them is extremely dangerous. It is better to be overly cautious and rush than to wait...

casualrider21 — best of luck.

It is truly a pleasure to read such positive news! I hope we continue to see updates like this... stay brave and keep remaining this strong!👍

gentletiger46, I really dig your vibe. You’ve got this optimism just pouring out of you. I’ve always been a fan of people like that.
With an attitude like yours, you've basically already won half the battle against this "beast."

gentletiger46, I really need to hear something positive today!!! 👍

I am just so glad to hear you're doing okay—and honestly, thank you for sharing such wonderful news!! Just keep staying that brave!!!!

aww, thanks girls!😍

My current obsession? Preventing infection. I was reading online that washing your hands is basically the alpha and omega of staying healthy. So, I picked up this antiseptic spray for those times when I can't get to a sink—they make these tiny ones that fit into any purse, and mine is even safe for wounds (it doesn't sting). It's called Octenisept and it costs $10. It contains phenoxyethanol, which is just your standard bactericide you see in all sorts of Dermatologica products. Anyway, maybe someone out there finds this little tip useful. 👍

gentletiger46, you're turning into quite the little encyclopedia yourself! 😉

I am just glad to hear you're doing alright.
I actually went through something pretty similar once—though I honestly cannot for the life of me remember the name... it's just gone!
I ended up using it because the patient's white blood cell count had dropped, which made the next cycle a bit uncertain...
...so there was this sort of mini quasi-quarantine situation at home.
All I can recall is that it had a pleasant scent—not that harsh, clinical medical smell—but the name... oh, the name is just eluding me... 😕

Warning: If you think any of the info or opinions I’m sharing here might be a bit much for you, please just skip this or hit the "ignore" button. No hard feelings.

casualrider21 said:...
I'm really holding out hope for some good news and positive updates.

So, here are the last two sentences from a post I saw on another forum:
The bronchial tumor shrank significantly six months after the last round of chemotherapy. Improvements regarding the brain tumor started showing up after just two doses of radiation.

Sorry, but the guy was using an alternative method—and we aren't supposed to talk about that kind of stuff here.
P.S. Still waiting on more test results.

brisksurfer said:Finally, some actual good news to share on this thread! And I mean incredible, life-changing news!!!
I already mentioned that during Dad's follow-up CT scan, they claimed a new primary tumor had appeared on his bronchi with metastases in the lungs... Well, all the tests are finally done, and we got the biopsy results back. It turns out there is NO tumor!!!!! 🙂🙂🙂🙂🎉
They found he had an *Escherichie coli* infection that flared up after his throat surgery. He just needs antibiotics for that and then a follow-up X-ray in two months just to make sure nothing else pops up.

I can't even begin to tell you how happy I am!!! 😍 It feels like someone just lifted three tons off my shoulders! Honestly, I feel like 🙂 screaming at every single doctor who terrified us... I can't even describe the shock I went through...

Unfortunately, I celebrated way too early! 😢
Another medical error occurred... See, last week Dad went in for a follow-up CT which showed not only that the lung tumor definitely exists, but that it grew from 2.5cm to 5cm. His bronchi seem okay now, probably thanks to the antibiotics. He went back to the hospital today, and the doctor told him he couldn't understand why they only did a bronchoscopy last time when that wasn't nearly enough (they should have done a puncture as well). We have to wait until May 21st for the next round of tests, at which point they'll admit him to the hospital. That means it will have been six whole months since they first spotted changes in his lungs...
I don't know what to do... This has thrown me into total despair. 🙂

brisksurfer said:well, I guess I got ahead of myself! 😢
another medical screw-up... basically, last week my dad went in for a follow-up CT and it showed not only that the lung cancer is still there, but it actually grew from 2.5cm to 5cm. His bronchi seem okay now, probably just thanks to the antibiotics. He went back to Jordanovac today and the doctor told him he couldn't understand why they only did a bronchoscopy last time when that isn't enough (they should have done some kind of biopsy too). We have to wait until May 21st for the next tests, which is when they'll admit him to the hospital. That means it’ll have been 6 months since they first spotted changes in his lungs...
I don't even know what to do... this just totally crushed me. 🙂

You aren't the only one who gets hopeful too early. The doctor at Jordanovac keeps trying to convince me my husband is fine, so I let myself believe it... then, once again, I see that's clearly not the case. Because if it were true, he'd be feeling better. So then, I go back to thinking his blood work looks good and maybe everything really is alright... but then later, I realize illness is sneaky, maybe it's hiding behind decent lab results... and then, once more, I think, hey, why couldn't he be the one to beat cancer? Maybe everything is absolutely fine... and it just goes in circles like that.
Yesterday he had X-rays done because of a possible surgery for gallstones. Honestly, I'm lost. It feels like the ground is just being pulled out from under me. He's not doing well; he's having pains in his upper abdomen. A couple of months ago, during an ultrasound, the urologist said he had a stone in his gallbladder. Now we're going for a new ultrasound. But what if it isn't a stone?? He doesn't even have the typical symptoms for gallstones.. On the last CT scan from August 10th, there's some description about the area under his right rib. I have no clue what that means.
Anyway, I just don't get it—if the stone exists and was seen on the ultrasound back in August, why didn't the CT, and then the PET CT, mention it anywhere? Is it just not seeing it? I don't get it.

Lisa White54 said:You aren’t the only one who gets ahead of themselves. I had a doctor at the Jordanovac clinic try to convince me that there was nothing wrong with my husband. I let myself get excited; I chose to believe him. Then, reality hits, and I see that isn't the case at all. Because if everything truly were fine, he’d actually be feeling better. So, I pivot back to my initial thought: his blood work looks solid, so maybe everything really is okay. But then the doubt creeps back in—illness is a master of disguise, and it can hide behind perfectly normal lab results. Then I flip the script again, thinking, "Hey, why couldn't he be the one who actually beat cancer? Maybe everything is genuinely fine." It’s just an endless, exhausting loop.
We ran some X-rays yesterday because of a potential surgery for gallstones, and honestly, I’m completely lost. It feels like the rug has been pulled right out from under me. He isn't doing well; he’s dealing with this constant pain in his upper abdomen. About a month or two ago, an urologist told him during an ultrasound that he had stones in his gallbladder. Now we're headed back for another ultrasound. But what if it isn't stones? He doesn't even have the typical symptoms you'd expect with gallstones. To make matters worse, there's this vague note on his last CT scan from August 10th regarding something just under his right rib cage. I have no clue what that actually means.
I honestly don't get it. If this stone is actually there—and we know it is because it showed up clearly on the ultrasound back in August—why isn't it being mentioned in the CT scan or the subsequent PET CT? Is the technology just failing to pick it up? I'm genuinely stumped.

I think the reason it’s not picking it up is because the scan relies on contrast enhancement—you inject glucose combined with a radioactive isotope to make specific areas light up. A stone doesn't "take up" contrast like that because it isn't vascularized; there's no blood flow to carry the tracer there. Ultrasound works on an entirely different principle, similar to echolocation. Think about how a bat navigates its environment by emitting high-frequency sounds that bounce off objects at different rates to create a mental map of the space. That’s exactly why the ultrasound was able to catch it.
Your husband is showing all the classic signs of a gallbladder attack. Honestly, you really ought to get him to have it removed as soon as possible; if you wait, things can get incredibly messy and complicated very quickly. Most surgeons handle this via laparoscopy now, so he’ll likely be back home within three days.

Angela Wright said:I think they can't spot it because tumors soak up the contrast (glucose + radioactive isotope) making those spots light up, but a stone doesn't "soak up" anything since there's no blood flow there. Ultrasound works on a totally different principle—like echolocation. Think about how a bat navigates by sending out high-frequency sounds that bounce off things to map out its surroundings. That’s why it picked it up.
Your husband has classic gallbladder stone symptoms. Honestly, he should get it removed ASAP before things get messy. It’s usually done laparoscopically, and he’ll be back home in three days.

Thanks for the reply. Man, I'm having one of those absolute garbage days. Just feel like crying. One of those days. It'll pass, though.

gentletiger46 said:Aww, thanks girls!😍

Right now, my whole obsession is just keeping infections at bay. 👍

gentletiger46, I’m not usually one for seeing new faces pop up on this forum, but I have to say, that optimism you’re radiating in your posts is exactly what we need right now.
I don't know much about Hodgkin, personally, but I know a friend's mom was going through treatment the year before last. If I recall, she did both chemo and radiation (I can double-check if anyone actually needs me to). Her hair fell out—pretty sure it started after a few cycles—but then it grew back, and apparently even thicker than before 🙂... and now she’s doing great!
As for me, I haven't been posting much... just trying to gather my strength because honestly, I've been feeling totally drained, both physically and mentally, after everything that happened last year... Mom has some new checkups coming up at the end of May. So far, she feels amazing. Almost too good to believe, really, and I'm always half-expecting something to be hiding behind that "all clear" feeling after last year's diagnosis (Dukes C).

I wanted to jump in regarding the infection prevention stuff—back when Mom was doing her chemo, we used tea tree oil. Just a few drops on a cotton pad or mixed with water (maybe 20 drops in a small glass) and sprayed around the room. It’s supposed to be one of the best natural disinfectants out there (gentletiger46, since you're the pro, you probably know more about this than I do?)... plus, it smells nice. You just have to be careful about where you buy your essential oils; you want the purest stuff possible (best bet is a pharmacy or a high-end health food store), ...a little bottle is usually around 40-$17

Anyway, that's a little bit of my two cents. I just want to wish you all continued courage, and fingers crossed for success, keep fighting... especially you, fighters!