Support resources for families dealing with cancer and other serious illnesses

Thanks so much... I was honestly convinced they were doing a full CT scan. At the beginning, all they did was run an abdominal ultrasound and take some chest X-rays before her surgery, and they haven't even done a scintigraphy, neither then nor now, though I guess the doctor did add those markers yesterday. Once she’s feeling a bit better after the radiation treatment, we’re probably going to head over to a private clinic for some more extensive testing, just so we can finally have some peace of mind.

Linda Ortiz49 said:Thanks... I was under the impression they were doing a CT scan. At the beginning, all they did was an abdominal ultrasound and some lung imaging before surgery; they didn't do a scintigraphy then or now, though the doctor added blood markers yesterday. Once she recovers a bit from the radiation, we’ll head to a private clinic for more comprehensive testing just so we can finally have some peace of mind.

Get a bone scan instead. A PET scan isn't exactly "harmless"—it hits the body with radiation, and there’s a specific waiting period you have to respect between two such procedures. Plus, the scan reacts by lighting up anywhere there's cellular activity, which includes everything from old bruises to inflammation. If any metastases do pop up, the blood markers will pick up the growth first, and *then* you'd move on to a PET. If you run one now and the markers spike again in a few months, you might be blocked from getting a follow-up too soon because of the radiation interval. Don't forget that X-rays and bone scans involve radiation too!
I know there's a sea of negative stories out there that make it hard to trust your doctor, but keep in mind that most experienced physicians don't feel the need to broadcast their successes like those sharing horror stories do. If you want high-quality medical care, it absolutely requires having confidence that your doctor actually knows what they're doing. If that trust is broken for whatever reason, it's better to find a new specialist, because you won't get anywhere good trying to force a relationship that isn't working.

Thanks so much, Ivancic, because honestly, that whole thing about radiation exposure was really weighing on my mind—you know, wondering if we should stick strictly to what they recommended or if we should just go ahead and push for a PET CT ourselves. I’m really hoping they’ll agree to do the bone scan too, even though it wasn’t explicitly on the list of tests they ordered right now, and god knows the waiting lists can be such a nightmare. Since there aren't any private options available through the local health system here, I guess we'll just have to look elsewhere and pay out of pocket if they don't approve it.

Regarding that oncologist everyone keeps talking about, I mean, I totally trust the recommendation, she seems great, but you know how it goes with most specialists lately—it feels like you're being ushered out the door before you've even had a chance to settle in, and nobody really takes the time to sit down and walk you through everything... plus, there's always that nagging fear in the back of your head that maybe, just maybe, they might skip over certain necessary tests just to cut costs.

For the time being, we’re just going to move forward with exactly what they asked for, and I’m trying to stay positive that it’ll be enough. Even though it was an aggressive tumor, it was actually completely dormant when they caught it, with a KI67 of 0, so I keep telling myself that’s probably a good sign, even if I know it’s not a guarantee.

Hey everyone fighting the good fight out there! I was wondering—has anyone here actually been on Xeloda? I'd love to hear what your experience has been like so far.

Michelle Cook83 said:Hello to everyone fighting the good fight! I'm wondering if anyone here has actually tried Xeloda? What has your experience been like so far?

Michelle Cook83,

Xeloda worked better for my dad than any other medication he’s ever taken. What is the specific diagnosis? What exactly are you looking to find out? Feel free to send me a private message if you want to chat.

silvercanyon7 said:Michelle Cook83,

My dad actually had better results with Xeloda than any other medication he’s been on. What’s the specific diagnosis? I'm curious what you're looking for—feel free to shoot me a DM if you want to chat privately.

Thanks for the quick reply, Lano! Since I'm not exactly an expert on oncology or anything, I'm mostly just looking for real-world experiences from people who've been through it. My dad actually started his first dose of Xeloda yesterday—he's dealing with rectal cancer. Just really hoping everything goes smoothly...

Thanks, Angela Wright, for starting this thread. I’m sure there are countless people out there who just need a little bit of encouragement... sometimes a single kind word is enough to make a difference.
My dad is battling leukemia right now... and honestly, I’m feeling completely defeated. It feels like the doctors aren't doing anything at all, and my hands are tied.
So here I am, sitting alone halfway across the country... wondering what on earth I can do to help... if there's even a way to get things moving.
I really hope the rest of you are getting better support from your physicians than I am.
Best regards,

I’m not entirely sure which specific facility my dad is being treated at, but when it comes to hematology, the specialists here in the States are top-tier. We have world-class hematologists and some of the most influential medical associations in the world.
I don't know what the exact issue is or where things specifically went sideways, but if the treatment is in the hands of a conscientious professional, I have no doubt it will be handled correctly.

Jessica Adams7 said:Thanks, Angela Wright, for starting this thread. I’m sure there are countless people out there who just need a little bit of support... sometimes even a single word of comfort makes all the difference.
My dad is battling the same thing—leukemia... and right now, I am beyond frustrated. It feels like absolutely nothing is being done by the doctors, and my hands are completely tied...
So here I am, sitting alone overseas... feeling lost and wondering what on earth I should do... if only I could actually make some kind of progress...
I really hope the rest of you are getting better support than what we get from these so-called physicians.
Best regards,

If you want any actual advice or something concrete to talk about, you need to provide some actual facts.

Dear vividsailor7,
I’d love to give you more details... but the doctors here aren't really saying much yet.
For now, the diagnosis is leukemia.
The biopsy and bone marrow aspiration have been done, and we're just waiting on the results... until then... and my father... oh my God...
God help us.
Thanks for asking. I appreciate it.
Best,

Thanks to you too, Angela Wright...

Jessica Adams7 said:Dear vividsailor7,
I’d love to give you more details... but honestly, the doctors here can barely get a straight word out of them.
Right now, the diagnosis looks like leukemia.
The biopsy was done, the bone marrow puncture is finished—now we’re just stuck waiting on the results... meanwhile, my father... oh my God...
God help us.
Thanks for asking. I appreciate it.
Best,

Ten days is plenty of time for someone pursuing a PhD. Don't let them brush you off; demand clear answers and be assertive. It's your right.

My father is heading in for his second round of chemotherapy tomorrow. His hair has thinned out significantly, so we’ve decided to shave it all off today. Since I know seeing himself this way will take a heavy emotional toll on him, I really want to find him a high-quality wig that looks just like his natural hair; I think having that sense of normalcy would help him cope much better with everything he's going through.

Could anyone point me in the right direction or suggest where I might start looking?

restlesstiger102 said:My dad is heading in for his second round of chemo tomorrow. He’s lost a ton of hair, so we’re going to shave his head today. Honestly, seeing him like this is just wrecking his mental state, so I really want to find him a high-quality wig that looks just like his natural hair—anything to help him feel more like himself.

Can anyone point me in the right direction?

Look, your dad should actually be eligible for a medical referral to get a wig covered through Medicare—you definitely need to ask his doctor about that. Until then, maybe a baseball cap would work? Just a heads-up though, wigs can get pretty sweaty under there, so a hat might be more comfortable, but if he's feeling self-conscious about everyone staring at him, stick to the wig. If you end up buying one out of pocket, be prepared because they are pricey (though obviously much better quality than the ones provided by insurance). Just do a deep dive on Google.

Casey Booth3 said:Your dad is absolutely entitled to get a medical wig through his insurance; he just needs to demand it from his doctor. In the meantime, a baseball cap works perfectly fine. Honestly, wearing a wig can make your head sweat like crazy, so a hat is actually more comfortable—but since this is such a huge shock to him (likely because he's self-conscious about people staring), let him fight for that socialized coverage. If you decide to buy one out of pocket, be prepared to pay a premium, though you'll definitely get better quality than the subsidized stuff . Just look it up on Google.

He can always pay the difference at specialized shops that take Medicare to upgrade to a higher-quality wig.
I remember one shop that carried hairpieces was located right over in a mall near downtown Chicago.

Thank you all for the information. My father underwent his second round of chemotherapy today, which included another blood draw. His red blood cell count is dropping, and his lab results look even worse than they did just last week.

While he was still able to proceed with the treatment, I am honestly at a loss as to what else he could possibly consume to help stabilize his blood counts.
He is currently taking Graviola and AHCC for immune support, and we have been making our own fresh juice blends from beets, carrots, and apples at home.

I also recently purchased some organic aronia berry juice for him because it is supposed to be incredibly potent, though it certainly isn't cheap.

In addition to those supplements, we are exploring alternative options and doing everything within our power to ensure his nutrition is optimal; we focus heavily on salads, bell peppers, and various vegetables, while constantly encouraging him to stay hydrated with plenty of fluids and green tea. He is even starting Taheebo soon. We are trying absolutely everything, yet I have this growing, sinking feeling that none of it is actually helping his blood work improve.

To make matters more unsettling, there seems to be no consistency in his treatment plan. Initially, the doctors told us he would need two rounds of chemo and radiation, then it shifted to three, and now they are saying it will likely be four rounds of both.

It leaves me wondering,🙂

I truly cannot fathom the basis upon which they keep shifting their clinical opinion and changing the therapeutic approach, especially since today was my father's first time returning to the hospital since his last session.🙂
I find myself feeling quite irritated and deeply concerned.😢

Unfortunately, that’s just how things work here. It honestly feels like they don't even know half of what they're doing. I guess they really ought to follow some kind of standard protocol instead of constantly changing their minds every five minutes. And now, on top of everything, they're working under mandatory shifts. Meanwhile, people are dying for no reason at all, and nobody seems to care.

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mistyjackal842, do you happen to have any additional advice for improving my blood work results that we haven't already discussed?

Every bit of guidance is truly appreciated.

My mom didn't have cancer, but since she was a bit underweight, her hematologist prescribed some Pfizer iron syrup. I gave it to her by the teaspoon every day, and her blood work really started looking better. Since it’s actually a pediatric syrup, I guess it's easier on the stomach... maybe that's why she didn't experience any stomach pain at all. You can only get it with a prescription, though. She ended up being quite anemic because she had to go through two major bypass surgeries and a below-the-knee amputation all in such a short window of time.

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Hi everyone! I’ve been following this community for years now, and I just want to send so much strength and positivity to everyone fighting these tough battles. My dad had surgery for prostate cancer about a year and a half ago. It was caught early, so he just had a prostatectomy, and we’re just doing regular checkups now. Everything looks great so far, and we're staying hopeful!
However, there's something else on my mind. After his surgery, his doctors mentioned that his children (regardless of gender) need to be more proactive with screenings because they might have a higher risk for things like breast or ovarian cancer.
So, I'm wondering—how much "more frequent" are we talking about here? I'm 28 and currently go for my gynecological exam once a year, but I'm not sure if I should be doing anything extra beyond that...