Support resources for families dealing with cancer and other serious illnesses

feralridge3 said:Hey there! I don't usually jump into threads like this because I tend to be pretty sensitive to heavy topics, but honestly, with all the bad news floating around lately, I decided it was time to throw some good vibes into the mix and share my own happy update. 🙂
After three years, seven months, and six days out on medical leave, I’m finally back at work on an NG tube. For those who don't remember me, that's because I've been dealing with a malignant brain tumor—one recurrence followed by a second one that we managed to shut down right at the start.
I’m not the same person I used to be when it comes to what I can actually do. My optic nerve is damaged and my hearing has taken a hit too, but I’m not rolling over just yet. I’m just taking it one day at a time, pushing through until I hit my limit. 🙂 The specialists gave me the verdict: all things considered, I did pretty well. ☕
For me, it’s all about staying employed. I need to be able to work and hold my own—I refuse to be dependent on anyone, whether that's physically or financially. 🙂
I wish you all nothing but success—or more importantly, I wish success to your loved ones—as you go out there and fight the good fight against evil.🙂

You just made my whole day!🙂
You really are something else, woman—major props to you!😍

I

feralridge3 said:Greetings from my end. I don't follow this thread much—too heavy, and I suppose I'm just sensitive to that sort of thing—but amidst all the bad news, I figured I'd drop some good news here. 🙂
After 3 years, 7 months, and 6 days on medical leave, I'm finally back at work on light duty. For those who don't recall, it was a malignant brain tumor; one recurrence happened, and a second was caught early.
I'm not quite my old self, skill-wise. My optic nerve is damaged, and I've lost some hearing, but I'm not giving up yet. I guess I'm just living day by day, seeing how far I can get. 🙂 The specialists told me that, all things considered, I did pretty well. ☕
For me, being able to work matters. It means I'm not dependent on anyone, physically or financially. 🙂
I wish you all, or your loved ones, success in fighting the evil.🙂

Same diagnosis here. Just dealt with the first recurrence, and I'm hoping for a slightly longer stretch of peace now. I had one beautiful year between the tumors, and I'm praying we can stretch that out a bit more so I can keep fighting. Thank you for reaching out...
Sending big kisses to everyone, and thanks for being there for me. I'll probably head home this Friday, and I'll try to meet every morning with a smile, just like I have been. 🙂

Angela Wright said:You truly made my day!🙂
You really are an incredible woman; I truly tip my hat to you!😍

😍
That’s how it looks on the surface, but that isn't exactly the reality of it. I mean, yes, I have decided to leave all that bitterness behind—and I truly hope it stays that way forever—but I have to be honest: trying to reintegrate into normal life is painful. It is frustrating, and honestly, it’s filled with this constant, gnawing fear of a relapse because of everything that happened. 🙂 It’s been weighing on me for three and a half years now. I know, I know—I shouldn't dwell on it, and logically, there's no point in ruminating. But sometimes, that subconscious stream of thought just hits you with such intensity that it's almost impossible to ignore. 😠 That is precisely why I steer clear of discussions like this.

fadedtrucker5 said:I

It’s the exact same diagnosis. I just managed to get through my first recurrence, and I am praying that I can maintain this stretch without facing the same thing again for a while. Honestly, I had such a beautiful year of life during that gap between tumors, and I am holding onto the hope that I can extend that peace just a little longer so I can keep fighting. Thank you so much for reaching out...
Sending a huge kiss to everyone here and thank you all for standing by me. I’ll likely be heading home this Friday, and I fully intend to meet every single morning with a smile on my face, just as I have been doing up until now! 🙂

🙂
What can I even say to you? Just hang in there. Don't let them get to you. Every single day is worth fighting for.
I find myself saying quite often now that this tumor was actually a blessing in disguise. It’s been a harsh wake-up call, certainly, but it finally forced me to get my act together. Some things in my life have finally moved from being total nonsense to actually making sense, or rather, I've finally stopped being so clueless and started using my head. 😍

Hey everyone, I finally made it home from the hospital after 15 days 😍
The surgery went well, I guess. They took everything out, and the follow-up CT scan looks fine.
Anyway, I'm just glad to be alive, so we move forward...

Kisses to all 🙂

Greetings everyone, especially 🙂 fadedtrucker5. I am genuinely relieved to hear that you’re doing well; please, keep pushing forward just as you have been. It has been quite some time since I last checked in here, but I am returning today bearing wonderful news. The tumor has shrunk by 5 cm—Yippeeeeeeeeeee! We are absolutely overjoyed that we've seen significant progress again after these three cycles. My father-in-law is feeling fantastic; he has actually gained 13 kg, which is a massive victory considering how much weight he lost at the start of this journey. His blood work looks excellent, and we are now fully prepared to move forward with the next three prescribed cycles to see where things lead. He truly feels like his old self again, and our whole family is walking on air. Please, do not give up hope, because there is always a way forward. Warmest regards.

feralridge3 Asks:
😍
That’s how it looks on the surface, but honestly, it’s not quite like that... I mean, yeah, I’ve decided to let go of all that bitterness, and I really hope it stays that way for good...

For all time and through the spring, that race just draws all the energy from the mountains... 🙂

Kate Brooks2 said:Greetings to everyone, especially fadedtrucker5. 🙂 Glad to hear you're doing okay. Just keep pushing forward, I guess. It’s been a while since I checked in, but here I am with some actual good news. The tumor shrunk by 5 cm. Yippeeeeee! We’re just so relieved there was progress again after those three cycles. My brother-in-law is feeling great—he actually gained 13 lbs, which is huge because he lost so much weight at the start of this whole ordeal. His bloodwork looks solid now, so we’re ready to tackle the next three prescribed cycles and see where things go from there. He feels like his old self again. It makes us all so happy. Don't give up; maybe there really is hope. Best wishes.

Well, bravo. Fantastic news. I guess credit where it’s due—your resolve and commitment are impressive. Someone like you might actually get someone healthy in no time... maybe. Bravo. 🙂

About a year and a half ago, I noticed my left breast—well, let's just say my chest area, haha—started swelling up. I went to see a doctor, had an ultrasound done, and they told me it was some kind of inflamed glands. Eventually, I went in for surgery to have the enlargement removed, and everything seemed to go smoothly at the time. But now, I’ve developed these lumps right where the surgical site is. They’re about 2 to 3 cm long; some are round, others are more irregular in shape, and they feel quite hard. Interestingly, there’s no pain when I press on them, and they don't seem to be getting any larger. I actually noticed the initial swelling started around the time I began working out and lifting weights. After the surgery, once a bit of time had passed, I got back into my fitness routine, and the swelling didn't return.

I am wondering, could this be nothing more than scar tissue from the procedure, or should I be worried about something more serious?

Amy Fox5 said:About a year and a half ago, my left breast started swelling up—yeah, yeah, I know, "breast," whatever you want to call it lol. I went to see a doctor and got an ultrasound, and they told me it was just some inflamed glands. So, I went ahead with surgery to have the enlargement removed, and everything seemed fine at the time. But now, right where the surgery was, I’ve got these little lumps about 2-3 cm long. Some are round, some are irregular shapes, but they aren't painful when I press them and they don't seem to be growing. My chest actually started getting bigger once I hit the gym and started lifting weights, but after the surgery, I picked the training back up and the growth stopped.

I'm wondering if this could just be scar tissue, or am I looking at something more serious?

It's most likely just scar tissue from the procedure itself. That being said, you should definitely head back to your doctor for a physical exam and possibly an ultrasound to be safe.

Angela Wright said:It’s most likely just some scar tissue from the surgery. Still, you really ought to see a doctor for an exam and maybe get an ultrasound if you can.

What kind of adhesions are we talking about here? Are they common ones, or could they be something unusual—you know, following surgeries around the breast area in both men and women? And... I have to ask... is there any chance this could be something malignant?

Amy Fox5 said:What kind of growths can show up? Are we talking about standard stuff or something unusual (like after breast surgery in men or women)? Could it actually be something malignant?

That’s pretty common anytime there’s an incision and stitches involved. As for whether it's malignant or not, I can't give you that answer. If the tissue that was removed was cancerous, there is always a chance of recurrence right along the incision line. But honestly, nobody can confirm that for you except a doctor. If you're feeling anxious or have doubts, the best move is to go see your physician.

mistybadger55 said:Alright, here’s my mom's story:

Back in 2005, she noticed this black spot—a mole—on her left lower leg just above the ankle. It definitely wasn't there before; it was about the size of a fingernail. There were a few other bluish spots around it, too, but since Mom deals with thrombosis in that leg, she didn't think much of it—it just looked like some bulging veins. It wasn't until the spot actually started bleeding that they went to see the GP, who sent her to a dermatologist and then finally to the tumor institute, where they had to cut that section out. I want to give a shout-out to Dr. Nola over there—great work.
When she went in to get her results, the regular doctor was out on vacation—some other guy was covering for him instead. I don't have his name right now, but I'll find out and post it here because the man is completely incompetent. He actually looked at the findings and told her everything was fine, interpreting the diagnosis of a balloon nevus as "all good." To make matters worse, the dermatologist at the Mayo Clinic was just as useless—she was way too happy about it just because the report supposedly looked okay.
The only person with any sense here was that rural GP—she actually had the guts to tell me straight that the results didn't look good.
At the three-month follow-up, the doctor at Nola basically grabbed his head in disbelief once he saw what his colleague had reported... Basically, my mom ended up in surgery where they cut out the melanoma along with a wider margin of surrounding tissue. They checked the lymph nodes under her knee and in the groin area, and nothing was found. I don't have the paperwork right in front of me—but at the time, it was classified as Stage 1, though they were definitely worried about those tiny satellite spots; there were quite a few of them.
After that, my mom went through six cycles of DTIC chemotherapy—doctors basically told us there was nothing else they could do. For the next five or six years, she’s been going in for checkups every four months, and every single time, they only checked her tumor markers, which stayed normal. During that whole stretch, she also dealt with breast cancer—thankfully caught early, so they removed it along with the lymph nodes and did targeted radiation on the area. Throughout all this, the skin on her lower leg just kept getting worse. Spots would pop up and vanish, or show up and just stay there. A few months back, one of them started bleeding again; we were doing regular dressings, but it just wouldn't heal. Two months ago, she finally had surgery at the Mayo Clinic—they had to remove that entire section, including deep tissue, and perform a skin graft using healthy skin from her thigh. As awful as the whole situation looked, it actually healed well—which is a total miracle considering her history with venous thrombosis.
Two weeks ago, my mom felt a lump in her groin—and she’d actually been feeling something in her lower back for a few months now, too. She just didn't say anything to anyone until now.
Diagnosis: lymph node metastases. Tumor markers are normal—abdominal CT showed absolutely nothing.
Dr. Tomek at the institute has put me back on DTIC—says there aren't any other options. Starting June 6th.
Look, I know the situation is grim. I’m fully aware that chemo efficacy isn't where it needs to be—honestly, there just isn't adequate treatment available right now. There aren't even any clinical trials to turn to. So, I'm going to buy her some beta-glucan—anything to help her endure this whole ordeal, for God's sake.
Any advice or experience you can share would be greatly appreciated.

Here’s the update from May 27, 2011. Mom finished six cycles of chemo—zero results. There was a silver lining, though; she qualified for treatment with vemurafenib and was actually supposed to start right about now. But that plan is dead in the water because a CT scan just picked up two brain metastases—both up to 1 cm. The doctors haven't officially broken the news to her yet—that's scheduled for Tuesday—but I feel like I have to tell her myself before then (I found out through other channels). I honestly can't find the words to describe how I'm feeling right now. Does anyone here have experience dealing with these kinds of brain tumors? Is there any chance radiation could actually pull them back?

mistybadger55 said:So, here’s an update from May 27, 2011. My mom finished six rounds of chemo, but it was a complete wash—didn't work at all. On the bright side, she was actually a candidate for vemurafenib treatment, which she was supposed to start any day now, but unfortunately, that's off the table because a CT scan just showed two brain metastases, both up to 1 cm. The doctors haven't officially broken the news yet—that's slated for Tuesday—but I feel this crushing weight telling her myself before then (I found out through other channels). I honestly don't have the words to describe how I'm feeling right now. Does anyone here have experience dealing with these kinds of brain tumors? Is there any chance they might recede after radiation?

If they're positioned correctly, Gamma Knife might actually be able to clear them away.
Definitely get an opinion from Paladin!

We were just at Vinogradski today—mom has two brain metastases plus several in her lungs and adrenal glands. They told us we need an MRI first, then take those results over to Rebro. I’m wondering if there's any way to fast-track an MRI through insurance, because this is incredibly urgent. The smaller the targets are, the better the chance the Gamma Knife will actually work. At Medicol, the waitlist is at least two months. She doesn't have that kind of time—if we can't speed things up, we'll just pay out of pocket.

mistybadger55 said:We were just at Vinogradski today—mom has two brain metastases plus several in her lungs and adrenal glands. They told us we need an MRI first, then take those results over to Rebro. I’m wondering if there's any way to fast-track an MRI through insurance, because this is incredibly urgent. The smaller the targets are, the better the chance the Gamma Knife will actually work. At Medicol, the waitlist is at least two months. She doesn't have that kind of time—if we can't speed things up, we'll just pay out of pocket.

I didn't mention why this is so critical—if the brain metastases recede, mom becomes a candidate for Vemurafenib treatment. That gives us hope that the other metastases might also shrink or disappear. Every single day counts right now.

Try calling them in a place like Dallas—you'll be waiting at least 15 to 20 days before anyone picks up.

Rebecca, if you pay out of pocket, you can jump to the front of the line. Honestly, I think we could get this sorted within a week that way.

mistybadger55 said:I didn't mention how critical the timing is—if those brain metastases recede, my mom becomes a candidate for Vemurafenib. That gives us actual hope that the other spots might shrink or pull back too. Every single day counts right now.

Did they actually sit you down and tell you that explicitly? I’m asking because, with certain drugs used for metastatic disease (like Sutent, for example), the standard protocol is often that once a brain metastasis appears, the patient is essentially off that medication for good, regardless of whether the spot can be treated or cleared.😢

From what I’ve gathered about Dr. Dabelić—if we’re lucky enough that the Gamma Knife actually pulls those brain metastases back, meaning the follow-up MRI shows nothing left in the brain—we head back to the Vinogradski clinic and Mom can finally start her treatment.
I know I'm grasping at straws here, but there’s still a glimmer of hope.

Does anyone know if the MRI quality at the Saint Catherine facility in the local area is any good? We could go private and get seen immediately, and they’re running a 25% discount right now, so the cost would be $400.

mistybadger55 said:From what I’ve gathered from Dr. Dabelić—if we get lucky and the Gamma Knife actually manages to shrink those brain metastases, meaning the follow-up MRI shows nothing left in the brain, then we head back to the main hospital and Mom can finally start her actual therapy.
I know I’m grasping at straws here, but there’s gotta be some shred of hope, right?

Does anyone have any intel on the quality of the MRI machines over at Saint Catherine in a small town like Zabok? They could see us privately right away, and they’re running a 25% discount right now, so the cost would be $400.

Mom absolutely needs contrast for that MRI, and that’s going to bump up the price. You should double-check that. As for the quality of the imaging itself, I don't have any firsthand experience regarding how skilled their radiologists are when reading the results.

We managed to snag an appointment at Medicol for February 16th because they flagged it as urgent. I just sent over the scanned results and they gave us the slot right away.
Angela Wright, does the referral need to explicitly state that the MRI requires contrast?

Actually, the decision to administer contrast is entirely up to the radiologist performing the scan—they make that call based on the initial diagnosis and the specific findings provided in the referral.