Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Kevin Bishop10, I previously sent you the link where those protocols are detailed precisely.
Perhaps try air-popped popcorn; there are inexpensive machines available for that. It helps some people. I also suggest applying crushed flaxseed dissolved in lukewarm water—let it sit for an hour, strain it, and drink the liquid. For certain individuals, Coca-Cola works wonders.
Ask your doctor for something else regarding the nausea. Aspirin, for instance, can be effective.

Thank you for the response.

I reviewed your link regarding occult tumor protocols earlier, but I couldn't locate the specific combination I was prescribed (irinotecan + cisplatin). That is why I inquired whether this particular therapy is recognized for other types of tumors.

I tried the popcorn; it simply doesn't work for me. Worse still, I cannot tolerate any liquids; if I swallow even a single drop, it comes right back up. Not even Coca-Cola stays down. This is problematic, as I need to consume massive amounts of fluids because these toxins are causing intense kidney pain. I suppose I will attempt the crushed flaxseed...

Is Reglan "weaker" or "stronger" than Zoloft? Might it offer relief if Zoloft failed to do so? Thank you...

Kevin Bishop10, if you check this link http://emedicine.medscape.com/article/2005218-overview, you'll see they list both drugs as effective when used in combination. As for the specific protocol involving both of them together, you’re definitely going to have to hammer that out with an oncologist. It would be totally unprofessional for anyone else to try and give you an answer on something that technical.

Thanks for getting back to me... 🙂

Kevin Bishop10....

Aspirin is honestly the gold standard among all those options for managing side effects—it costs about $233 per chemo session here, though I heard it's closer to $333 in Boston.... we have Zofran covered by Medicare around here, but let's be real, it's the weakest one on the market, even if it does work for some people. Reglan is just your run-of-the-mill option; we keep it in our home medicine cabinet for everyday stuff, though I've heard that for certain patients, it's actually enough to get them through. I suppose it all comes down to the specific chemotherapy protocol being used, doesn't it?.....

ruggedmarlin2 said:Thanks for the reply... 🙂

Kevin Bishop10....

Aspirin is superior to all those other options for managing side effects; in the US, it runs about $233 per chemo session, while in Boston they say it’s $333....Zofran is covered by Medicare here, though it’s the weakest option—it works for some, I suppose. Reglan is just basic stuff; we keep it in our home medicine cabinet for everyday use, though I’ve heard it actually suffices for some people. Apparently, it all depends on the specific chemotherapy protocol being used.....

I haven't heard of Aspirin before, nor did my doctor suggest it. Perhaps he'll prescribe it if I mention that Zofran hasn't been particularly effective for me. Is it available by prescription? Thanks to everyone. Regardless, going four days without eating or drinking anything is not an ideal strategy. No matter how much I try (read: force myself), one sip goes in, and two immediately come right back out. I need to prepare more effectively for the next round.

Is the second (third, fourth...) round of chemotherapy easier than the first?

Jamie Chase said:If I’m following you correctly... they ran lung fluid tests and they came back negative for tumor cells. And if you're referring to the biopsies, they punctured her lungs two or three times.
And what about that diuretic therapy—that Metformin dose? Is it for ascites?

Yes, my apologies, you did mention they performed puncture analyses.
But looking at all this, it clearly shows the primary disease isn't under control (specifically the ovarian cancer).
Ascites means there's free fluid building up in the abdomen.
The diuretic therapy is used to drain that fluid; the Metformin dosage is determined based on the clinical picture, potassium levels in the blood, and blood pressure readings.

Kevin Bishop10 said:Greetings from Boston!

I got absolutely hammered by my first round of chemo on May 18th! It’s only now that I feel strong enough to even sit at my computer. Honestly, I'm worried about what's next:

1. For occult adenocarcinoma (where the primary source is unknown), they set me on an irinotecan + cisplatin regimen—6 cycles, administered once every 21 days. I couldn't find anything online to confirm if this is the standard protocol?!

2. Even though I was given (and took) Zofran tablets for nausea and vomiting, they didn't do a damn thing. Is there anything stronger out there?

3. For the first four days, I couldn't keep anything down—no food, no water, just constant vomiting! Does anyone have any tips on how to actually eat something and have it stay in the stomach?

4. Are there any rules for the second cycle? Does it get easier, or is it always this brutal?

Any advice would be a lifesaver, because physically, this was devastating, and I have no idea how I'm going to survive doing this five more times!

Thanks, and cheers from Boston!

1. Irinotecan plus cisplatin is used for a whole range of tumors.
2. Of course, there are other options like Peyronie's disease treatment, Zoloft, Aspirin, or Emend.
In the US, most of these are covered by Medicare, though there might be slight differences in specific indications and coverage periods.

ruggedmarlin2 said:Mom just had her consultation with the oncologist. Is it actually possible that she has to wait two whole months after surgery before she can even start chemotherapy?! Or is that just how broken our healthcare system is...☕

I’m also looking into Aspirin; apparently, it’s supposed to be the best thing for helping you handle the chemo side effects, but you have to buy it out of pocket. I told her that if there's any chance it makes the treatment easier to stomach, money shouldn't be the deciding factor right now... what has everyone else experienced with it?

Also, I heard there are certain treatments to prevent hair loss. If I'm allowed to ask here, does anyone have any experience with that?

Thanks.

Aspirin is on the standard formulary for specific drugs like cisplatin, carboplatin, doxorubicin, mitoxantrone, ifosfamide, cyclophosphamide, and dacarbazine.
I think that covers everything, though the dosage matters just as much.

Aspirin might be on the approved list here, but I’m not sure if it’s available in the US—we should probably double-check that.

vividsailor7 said:Aspirin is included in the basic coverage for specific medications—things like high-dose cisplatin, carboplatin, doxorubicin, mitoxantrone, ifosfamide, cyclophosphamide, and dacarbazine.
I believe that covers the essentials, though one must also account for the dosage.

It’s absolutely not on the list. We actually went and asked the oncologist—apparently, they only cover Zofran; everything else (and frankly, the better options) has to be paid for out of pocket.

ruggedmarlin2 said:It’s not covered! We asked the oncologist, and they said it's just Zofran—everything else (better stuff) has to be paid out of pocket.

Did you actually look at the indications? It's specifically for people on certain protocols. George mentioned which drugs qualify, and the dosage matters too if you want to exercise your rights under insurance; they can get Aspirin from the hospital's formulary. So, it isn't just available to everyone, at least not from what I could gather.

Does anyone happen to know if there are any private places to stay near the Mayo Clinic? Like, maybe some apartments or just simple rooms? And does anyone have an idea what the prices are looking like lately?

Sean Garcia said:I was wondering if anyone knows if there are any private places to stay near the Mayo Clinic—like apartments or just rooms—and what the rates look like?

I guess the Johns Hopkins Hotel comes to mind; it’s right by the Mayo Clinic. Maybe check online for prices. If not, they probably have a number you can call to ask.

Just one question. Mom underwent another lung puncture today, and they drained about a quart. I’m curious about something: the doctors claim they administer an injection to numb the area—essentially local anesthesia—yet she doesn't feel the needle at all; they just rub the site and perform the puncture. I'm asking because she experiences significant pain during the procedure, arguably more than she should. Given that we know how much certain hospitals in San Antonio struggle with medication shortages and tend to cut corners wherever possible, is it plausible that they are skimping on the anesthetic here? Or is this procedure simply meant to be this agonizing?

Perhaps they might start by applying a topical anesthetic cream first—just to take the edge off—before moving on to the local anesthetic injection that actually stings or burns during infiltration.
The subsequent needle prick probably wouldn't even be felt afterward.

wanderingcobra76 said:Perhaps they apply a topical anesthetic cream first, followed by the local anesthetic injection—which actually stings quite a bit during infiltration.
She likely wouldn't even feel the subsequent needle prick.

She mentioned she doesn't feel any puncture at all until the actual procedure starts. That's why we suspected they might be skipping the local anesthetic entirely. We aren't certain about the pain level of the puncture itself, so it's hard to say; the puncture seems to be rather painful for her.

Mom is really struggling right now... she’s in a constant state of pain. She had major surgery back on March 27th—they removed everything they possibly could from her abdomen: ovaries, glands, the peritoneum, even part of her intestine—and now the pain is just relentless. It’s her back, her stomach, and specifically that right side where the ovary used to be. To make matters worse, the fever keeps coming back; it hits 100.4°F in the evenings, she spends the night drenched in sweat, and then somehow it breaks by morning. She’s incredibly weak, mostly just lying in bed, and if she tries to take even a short walk, she’s completely exhausted. She’s trying everything she can to boost her system—beta-glucan, raw propolis, zinc, selenium, and beetroot juices—but she’s still just hanging on. Her appetite seems fine, though.
Her abdomen is swelling again—we’re worried there might be fluid buildup. Her next round of the chemotherapy protocol isn't until May 27th.

Since we’re feeling a bit lost on who to turn to for actual guidance, I figured I’d post here... does anyone have any advice? Is this kind of instability to be expected at this stage?

I am fully aware that we are dealing with an incredibly serious illness and that the "real" treatment hasn't even truly begun yet, but still—it is heartbreaking to watch her suffer like this...

ruggedmarlin2 said:Mom isn't doing well at all.... she's in constant pain now (she had surgery on March 27th—they removed everything they could in her abdomen: ovaries, glands, peritoneum, part of the intestine), and now her back hurts, her stomach hurts, and there's pain on the right where the ovary used to be.... she's running a fever again too—it hits 100.4 in the evening, she sweats through the night, and then it's gone by morning. She’s weak, mostly just lying down, and if she tries to walk even a little bit, she gets exhausted immediately. She's drinking everything she can find—beta-glucan, raw propolis, zinc, selenium, and beet juices.... she eats normally.
Her abdomen is swelling again—we suspect fluid is building up. Her next round of chemotherapy protocol isn't until May 27th.

Since we aren't quite sure who to turn to for help, I am posting here... does anyone have any advice? Is this state normal?

I am fully aware that this is a severe illness and that the actual treatment hasn't even truly begun, but still, it is difficult to watch her like this...

It's the same situation with my mother... except they removed less in her case... since the metastases are everywhere, they left the uterus in. She is also weak and sometimes barely manages to walk. She recently underwent chemo, though they gave her a lower dose specifically because of her weakness... she's scheduled for another one on May 20th.
My mother feels better when they perform a thoracentesis to drain the fluid from her lungs... perhaps you should ask the doctors to do that for her?

Draining pleural fluid might offer some quick relief, but if you rely on it too much, you’re just setting yourself up for an even bigger buildup down the road. It's really a last resort—something doctors only turn to when things have hit a breaking point and diuretics simply aren't cutting it anymore.

Hey everyone.

I’ve seen bits and pieces about this online, but I really wanted to hear from people who have actually lived through it.
It’s about my dad (he's 67). He had surgery for prostate cancer four years ago, and honestly, everything seemed fine until this year. He’s been doing all the regular checkups and staying on top of his therapy, so we thought we were in the clear. But at his last appointment, his PSA came back at 5.4 ng/ml—which is high, since anything over 4.5 ng/ml is usually a red flag for a guy his age. Physically, he’s still holding up pretty well; he’s out working around the house and his appetite is good, though he does deal with some occasional lower abdominal pain.
His oncologist told him not to panic too much, suggesting they’ll probably just move toward radiation, but before they decide on that, he has to go through the motions with an abdominal CT scan and a bone scan.

To be honest, he’s already spiraling into a bit of a depression, which isn't helped by the fact that he just lost his brother to pancreatic cancer—everything hit him all at once, basically within a single month.

I’m looking to see if anyone here has dealt with something similar, specifically regarding the post-op phase. Being a medical technician myself, I understand the mechanics of it all and I know that people manage to live their lives despite these setbacks. I’m trying my best to stay optimistic and convinced that we'll pull through, but I’d really value hearing about other people's actual experiences.

My uncle lived with prostate cancer for over 20 years and made it all the way to 95. During that time, he only had about three minor procedures to clear things out, took some chemotherapy, and even dealt with a situation toward the end where he fell off a step stool, hit his head, and developed a malignant growth from the wound—which they managed to fix successfully. He was under the care of Dr. Smith at the Vineyard clinic. I can't recommend that approach enough!

My brother-in-law had surgery for throat cancer about a month ago.
He had a laryngectomy—basically, they took everything out, so he can’t talk anymore...
He’s got a breathing tube in his neck and is still stuck using a feeding tube through his nose just to get nutrients...
Today, they’re supposedly trying to give him something else, I’m not even sure what, maybe something to help him swallow, and if all goes well, he might actually be home in ten days or so...
He’s already scheduled to start radiation this month, too...
Does anyone here have actual experience dealing with patients in this kind of situation?