Support for families dealing with cancer and other serious illnesses (Part II)

Chloe Alvarez said:Thanks for all the advice. You're right—he’s trying really hard to push me away, but I just won't let him, because I know deep down this is all just a reaction to everything we're going through. I tell him things will be okay when the timing is right, but honestly, mostly he's just telling himself that to escape the reality of the situation. Still... there's no point in walking away. 🙂 We still watch movies together, catch up on series, and live under the same roof—we're right there next to each other even if we aren't "doing" anything together. As difficult as it is, I'm staying; I'm making this sacrifice, and I just really hope I don't go down with the ship along with him. =/

From where I'm standing: I've dealt with plenty of situations in my life where all I truly needed was someone to simply be there by my side—someone to hold me while I fell apart, without needing anything else. Back then, since I didn't have that, I used to retreat into myself, retreating into this little pink bubble where everything felt perfect. I wrote a lot back then, but now...
Times have changed. Writing doesn't really help me much anymore if there isn't a response coming back from someone; reading helps, sure, but I'm painfully aware that I could destroy myself by burying myself in books and isolation. If I do that, I'm only making things harder for my husband while he's sick—I won't be the support he needs. It's tough, especially because everyone else seemed to run away, and I just lack that one person who stays—someone I can count on to actually be there and not just disappear when things get heavy.

Question: which specific values on my blood work should I be keeping the closest eye on?
If anyone happens to know :-)

I’ve been lurking in this thread for a while now, just watching, but I finally felt like I needed to actually say something...

Tomorrow marks exactly six years since cancer tore my mom away from us. It was a whirlwind—just two months from the moment we got that diagnosis to the moment she passed. Honestly, if you haven't walked through that fire, you can't truly wrap your head around that chaotic cocktail of grief, pure rage, misery, and just feeling completely powerless... When we first found out, my son was only four months old, and he was the one who kept me from totally falling apart. In those darkest hours, nobody mattered to me except my baby, my husband, and one close friend...

Those kinds of shocks hit everyone differently; some people retreat into themselves and others don't, but the main thing is just letting people know you're there for them, no matter what. For me, nothing outside my inner circle even registered. I basically pulled us all into this mental isolation and just put everything else on total ignore...

Fast forward to now, and I’m the one facing an oncology diagnosis (though the prognosis looks good), and having that tiny circle of family and close friends behind me means everything. Beyond that, I just don't care about anyone else... My husband was in a complete wreck when we first heard the news—honestly, he was struggling even harder than I was—but his inner circle was always there to hold him up, just like they were for me...

Seriously, just learn how to tune out the people spreading negative vibes because that is the absolute last thing you need right now, whether it's relatives, friends, or just acquaintances... Dig deep, find your strength, and draw a line in the sand. Lean on the people who actually support you and just stop acknowledging the rest...

ruggedfox11 said:Question: which blood work values should I be watching most closely?
If anyone knows :-)

White blood cell count, platelets, and potentially the liver panel (liver function tests).

Angela Wright said:White blood cell counts, platelets, and potentially a liver function test (liver enzymes)

Thanks!
But wouldn't it be a problem if those numbers were running low?

ruggedfox11 said:Thanks!
How could that not be low?

It's neither high nor low. Liver enzymes are elevated.

Angela Wright said:Neither high nor low—though those liver enzymes are running a bit elevated.

We got the results back from Friday; his GGT was at 75 (I believe the upper limit is around 50), and his white blood cell count hit about 27—but the doctor mentioned this morning that it’s likely just an effect from the Decortin.
On a brighter note, she is actually quite pleased with how he’s progressing... He’s starting to meet others who are walking this same path, which I find really heartening since it helps him avoid having to constantly talk about the illness itself.

So, my husband just finished his second round of chemo.
This time around, he’s been dealing with some nausea, fatigue, and those frustrating temperature swings—feeling hot one minute and chilled the next—plus a bit of a cough. All in all, he's holding up okay.
The thing that’s actually weighing on my mind, though, is his leg. He had surgery a while back and has a prosthetic knee, but now he’s complaining about losing sensation in his leg; he's getting this tingling feeling below the knee. His doctor mentioned that this is somewhat normal—we're attributing it to the significant weight loss from being bedridden for twenty days—and suggested it might be due to some nerve compression. This all started right after that first round of chemo, and honestly, I'm just not sure what to make of it.

ruggedfox11 said:So, my husband has just finished his second round of chemo.
The journey was marked by a series of minor setbacks—some nausea, persistent fatigue, bouts of fever, and those unpredictable chills. Even a nagging cough has started to set in. All in all, though? It’s fine. Just one of those things.
What really keeps me up at night is his leg. He had surgery a long time ago—he’s actually got a prosthetic knee now—but lately, he’s complaining about losing sensation in it. He’s getting this constant tingling sensation below the knee. The doctor told us it’s "normal," attributing it to the massive weight loss he experienced during those twenty days of bed rest, suggesting some kind of nerve compression. This all started right after his first round of chemo. I honestly don't know what to make of it.

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It’s actually quite normal to experience this alongside chemo. My mother completely lost all sensation in her palms and feet and dealt with significant swelling. Once she finished her treatment, she spent some time taking diuretics to help the edema subside, and as time passed, that sensation gradually started to return. I also recall reading a post right here on this thread where another member mentioned her father lost all feeling in his hands due to chemo, only for it to come back eventually. You mentioned the weight loss—did the doctors prescribe anything like Prosure or Ensure shakes? Or perhaps Megostat? Both are prescription-based, but those nutritional shakes are packed with calories and essential nutrients, whereas Megostat is specifically meant to help with appetite.

Rachel Williams said:That’s actually quite common with chemo—my own mother completely lost sensation in her palms and feet and dealt with swelling; once she finished her treatment, she had to take diuretics for a while to get the edema down, and as time passed, the feeling gradually returned. I also remember reading a post on this thread from another user mentioning her father lost all sensation in his hands due to chemo, but he regained it eventually. You mentioned he’s losing weight—did the doctors prescribe anything like Prosure or Ensure shakes? Or perhaps Megostat? Both are available by prescription; those shakes are packed with calories and nutrients, while Megostat is specifically for stimulating appetite.

I read about that too, and now I'm all caught up! :-) His ankles swelled up a few days before the first round of chemo, but after the treatment, the swelling receded and it's gone now—aside from some tingling and that occasional loss of sensation just below the operated knee.
He actually started gaining weight after the first round of chemo, though—but that was because he spent 20 days in the hematology ward. They initially suspected lymphoma, and since he couldn't sleep, he spent those 20 days wide awake, just sitting on the edge of the bed; his weight dropped off extremely fast—God, it was awful—he was just skin and bones, and I honestly felt like he might fall apart if I even touched him. He is receiving nutritional support via prescription, but now that he’s back home, he’s naturally hungry for everything—he’s been like a termite, eating whatever is within reach, so he just knocks back his nutritional supplements whenever he can. :-)

ruggedfox11 said:I read about that too, and now I feel like I've seen enough :-) His ankle joints swelled up a few days before the first chemo, but after the treatment, the swelling subsided and it’s gone now—except for some tingling and that occasional loss of sensation below the operated knee.
He started gaining weight after the first round of chemo, but he had spent 20 days in the hematology ward because they initially suspected lymphoma. Since he couldn't even sleep, he was awake for those full 20 days, just sitting on the edge of his bed; the weight loss was extreme, God almighty, he was nothing but skin and bones. I honestly thought he might fall apart if I even touched him. He gets Supportane via prescription, but once he finally got home, naturally, he was hungry for everything. He became like a termite, eating whatever was within reach, so he just takes the Supportane here and there whenever it suits him. :-)

Hehehe, it's like you're describing my mother. She also spent five weeks in the hospital at the start and was just skin and bones herself, but once she got home, the weight came back immediately.😁

I don't think I'll ever forget how, during that phase, I would practically hover over her in her room almost every single night just to check if she was okay, if she was sleeping, if she was breathing... even today, when I go to stay with her for a few days, I still find myself doing the exact same thing...

Man, that is truly something I will never be able to forget

So, ruggedfox11, my Dad actually had these little tremors in his hands and feet a few days after chemo, plus he lost some sensation, especially in his feet, but everything would just settle back to normal after a couple of days... I honestly think that kind of thing is just a totally normal side effect from the chemo

It’s seriously awesome that they have an appetite and are putting on some weight, so just take it slow and try to handle things one day at a time, being super patient through it all...

stormyfalcon68 said:A few days after chemo, my Dad experienced tremors in his hands and feet—a bit of nerve tingling—along with some mild numbness, especially in his legs. Fortunately, everything seemed to settle back to normal after a couple of days. In my experience, I think that's a pretty standard side effect of chemotherapy.

It’s such a relief to hear that she has an appetite and is actually gaining weight; just remember to take things one step at a time—slowly and patiently, just handling it day by day.

Honestly, it makes me feel so much better seeing that others are going through similar things. This whole illness... the way it affects everything, the total lack of control over how things progress—it's just overwhelming. My goodness...

ruggedfox11 said:Honestly, I feel so much better the second I realize I'm not alone and everyone else is going through the exact same thing. All this stuff about how the illness hits you, how you can't control the situation or how things progress, oh man, it's just overwhelming...

You really just have to embrace the reality of it all as best you can and basically just take it one single day at a time
And honestly, that’s hands down the smartest advice anyone has ever given me...

stormyfalcon68 said:You just have to accept the situation as best you can and honestly, just push through one day at a time.
That really is the smartest advice anyone ever gave me.

People told me the exact same thing. And honestly? It’s probably the hardest part to actually live by.

ruggedfox11, you've got a PM waiting for you.

ruggedfox11 said:They told me the exact same thing. Honestly, just getting through it is the hardest part...

When Dad was first diagnosed with cancer, man, I really struggled to wrap my head around it, just hitting my head against a wall trying to find answers, advice, or some kind of way out...
But as time went on, it finally clicked for me how many things are just totally out of our hands, and how incredibly helpless and small you feel caught in that whirlwind of illness and everything else it drags along with it, especially when you realize you can't control a single thing about the situation...
Just taking it day by day is what kept me sane, really, where every good day was a chance to make the most of life, and on those awful days, we were all just counting down the minutes until they were over...
Looking back on it all, I’d tell anyone dealing with a diagnosis—whether it's the patient or the family—that finding some kind of psychological support, whatever works for you personally, is so worth it...

stormyfalcon68 said:When Dad was first diagnosed with cancer, I couldn't wrap my head around it. I spent so much time hitting my head against a wall, desperately searching for answers, advice, or any kind of help...
As time passed, I finally realized just how many things are completely out of our hands. You feel so incredibly small and helpless caught in that whirlwind of illness and everything it drags along with it—that absolute impossibility of staying in control...
Living day by day is what kept me sane. We treated every good day as an opportunity to make the most of life, and we practically counted the minutes until the end of every bad one.
Looking back, I would suggest some form of psychological support to anyone dealing with a diagnosis, whether you're the patient or part of the family, in whatever way feels right for you.

I sign every word of this... personally, if I had the chance right now, I’d reach out to a support group for families of the sick, and I think sooner or later, I'll seek out psychotherapy myself.
In the middle of that emotional cyclone, my own health went straight down the drain too. Even now that I've—shall we say—calmed down, I'm still dealing with the fallout, knowing full well that some of it will be permanent.

I'm getting ready to start chemotherapy, so I really need some quick advice here—does anyone know if there's actually a difference between the beta glucan from Eurovita versus what you get from Yasenka in Vukovar, or is it basically the same thing? Also, what else should I be taking before chemo kicks in to help me handle it better? I've heard there are specific things for dealing with that nasty chemo nausea... is there anything out there that actually works?
Thanks for any help!