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

Rachel Williams said:After three years of peace, this filth spread through her lungs in just three weeks. Mom is stuck in the hospital on an IV drip, and I’m just sitting here waiting for Friday so I can finally get home and spend at least the weekend with her...

Oh my God, what is going on lately? Hang in there!

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Thank you all so much!

@Rachel Williams/">@@Rachel Williams - hang in there!

Rachel Williams, hang in there...

It’s been four months today since my dad passed away... and honestly, not a single day goes by where I don't think of him. Even worse, there are moments when I start heading home and instinctively find myself wanting to ask him something, only to realize he isn't there.
Damn this wretched, miserable disease!

Thanks, ladies. My mom's cancer has spread to her brain (they did a brain CT yesterday), and everyone is just being incredibly vague—talking in circles without giving any actual, concrete answers. When my mom asked what the next steps are, Dr. Jordan just replied that he’ll touch base with her specialist at the Mayo Clinic once they've conferred, and then they'll decide on a plan. 🙂 Honestly, when I get there this weekend, I won't even have anyone to talk to about the full picture, because unless you're dealing with the on-call resident in the ER, the doctors are nowhere to be found...

Hang in there, Rachel Williams...

I'm honestly at a loss for words... My husband ended up staying at the hospital today for his second round of chemo. It's microcellular lung cancer. 😢
Since he finished the first round, we immediately cut out all sugar and white flour from his diet. He’s been taking a teaspoon of baking soda once or twice a day, drinking some antioxidant juice three times a day (about 0.3 dl per serving), and taking multivitamins, Vitamin C, and a B-complex. I also make these green smoothies for him—usually a mix of banana, apple, kale or Swiss chard, parsley, a little honey, and maybe some lemon juice or a tangerine. We also use a juicer for beet, carrot, and apple juice. For meals, he eats bacon, garlic, tomatoes, and lots of steamed or boiled veggies, along with cooked turkey or organic chicken. On top of all that, his oncologist actually prescribed Prosuro twice a day starting today. He lost quite a bit of weight even before the diagnosis and chemo hit (dropping from about 165 down to 143 lbs), so he's feeling pretty weak on his feet, though he can still move around. He tries to get out in the sun during the day, and we take short walks in the evening, though he gets exhausted really quickly. We have one of those vibrating massagers for the feet and back, so he uses it on his feet a few times a day, though I guess I'm not totally sure if that's a good idea. I'm thinking about calling a physical therapist to see if they could help strengthen his legs and maybe walk through some exercises with him. (He's 74, by the way).

Someone mentioned not using immune boosters while undergoing chemotherapy... Looking at everything he's currently taking, what specifically should I AVOID right before and during chemo, and what is okay to keep giving him?
Do you guys have any other tips regarding cooking or anything else I might be able to do to help?
The oncologist didn't think a bone scan was necessary, and I don't think my husband could handle lying still for that long anyway, especially since he has this persistent dry cough.
His next chemo session is scheduled for November 13th, and we have a follow-up CT scan in December.

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Joshua Kim69 said:I’m almost at a loss for words—my husband is actually back at the clinic today for his second round of chemo. It's small cell lung cancer. 😢
After that first round, we immediately stripped sugar and white flour from his diet entirely. He’s been taking baking soda (about 1-2 teaspoons a day), drinking chokeberry juice three times a day (in small doses), and taking multivitamins, Vitamin C, and a B-complex. I make him these green smoothies—usually a blend of banana, apple, kale or Swiss chard, parsley, a little honey, and some lemon juice or a tangerine—and then I run beet, carrot, and apple through the juicer. His meals consist of bacon, garlic, tomatoes, and plenty of steamed or boiled vegetables, along with cooked turkey or farm-raised chicken. Today, his oncologist also prescribed Prosuro twice a day. He lost quite a bit of weight even before the diagnosis and chemo started—dropping from about 165 down to 143 lbs—so he’s feeling pretty weak on his feet, though he can still move around. He spends a good amount of time outside in the sun during the day, and we take short walks in the evening, though he tires out incredibly fast. We have one of those vibrating massagers for the feet and back, which he uses several times a day (though I honestly am not sure if that's a good idea). I’m actually thinking about calling a physical therapist to see if they could help strengthen his legs through some guided exercises. (My husband is 74.)

You mentioned not using immune boosters during chemotherapy... Out of everything he is currently taking, what specifically should I AVOID the day before and during treatment, and what is safe to continue?
Do you have any other advice regarding meal prep or anything else I might be able to do to help?
The oncologist hasn't ordered a bone scan yet, and frankly, I don't think my husband could handle lying still for that long anyway, especially since he has this persistent dry cough.
His next chemo session is scheduled for November 13th, and we have a follow-up CT scan in December.

Diet doesn't actually have a direct link to the cancer itself. He just needs to eat whatever he can manage to ensure he has enough strength to get through the chemo.
Avoid all immunostimulants—including Vitamin C—during the treatment, the day before, and the day after chemo.
Keep a close eye on his blood sugar because of the corticosteroids, watch for leg swelling which could indicate thrombosis, and stay vigilant about infections. Also, pick up some Ondansetron to help with the nausea.
Anyway, stay strong. You guys will get through this.

ruggedfox11 said:...

Hey, I hope you're holding up okay. I'm really glad you reached out.

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Angela Wright said:Honey, I hope you're holding up okay. I'm just so glad you reached out.

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To be completely honest, dear, I am falling apart.
Physically, mentally—it’s everything, all at once.
This is just so incredibly hard...

ruggedfox11 said:Honey, I am honestly falling apart.
Physically, mentally, and emotionally.
This is just so incredibly hard...

🙂😢
I can't even begin to fathom what you're going through, but I truly believe you'll find the strength to fight through all of this for the sake of your little ones. 🙂

Dear ruggedfox11, I am so sorry to hear you're going through this... I won't sit here and give you empty promises that everything will suddenly be perfect, but I know what a fighter you are, and I truly believe you'll find a way to win this battle too... 🙂

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Joshua Kim69 said:What is there even to say? My husband ended up staying at the clinic today for his second round of chemo. It’s small cell lung cancer. 😢
Right after that first session, we came home and immediately stripped all the sugar and white flour out of our diet; he’s been taking baking soda (about a teaspoon once or twice a day), drinking aronia berry juice three times a day in small servings, plus multivitamins, Vitamin C, and a B-complex. I make these green smoothies—usually a mix of banana, apple, kale or chard, some parsley, a touch of honey, and a squeeze of lemon or maybe a tangerine—and then I use the juicer for beet, carrot, and apple blends. He eats bacon, garlic, tomatoes, and plenty of steamed or boiled vegetables, along with boiled turkey or organic chicken, and today his oncologist actually prescribed Prosuro twice a day. He had lost quite a bit of weight before the diagnosis and the chemo started (dropping from about 165 to 143 lbs), so he’s feeling pretty weak on his feet, though he can still move around. He spends a good amount of time outside in the sun during the day, and we take short walks in the evening, though he tires out incredibly fast. We have one of those vibrating massagers for the feet and back, so he uses it on his feet several times a day, though I honestly can't tell if that's actually helping or doing harm. I’m thinking about calling a physical therapist to see if they can help strengthen his legs and guide him through some exercises. (My husband is 74.)

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I really don't see the point in cutting things out of your diet unless your oncologist explicitly tells you to. Personally, I was eating just about everything while I was going through chemo. I mean, I was drinking Coca-Cola when it helped settle my nausea, and I ate plenty of vegetables. The only thing I avoided was alcohol, mostly because I didn't want to put any extra strain on my kidneys. Now, granted, I didn't have small cell cancer, and our doctors actually told us to pack as much nutrition as possible into our systems and to keep moving to prevent blood clots in the legs. I managed to put on 33 pounds in seven months. Currently in remission...

Raymond Smith53 said:I really don't see any reason to cut things out of a diet unless an oncologist specifically tells you to. Personally, I just ate whatever I could handle during chemo—everything from Coca-Cola, which actually helped quite a bit with my nausea, to plenty of veggies. I did stay away from alcohol, though, mostly because I didn't want to put extra stress on my kidneys. Then again, I didn't have microcellular cancer, and our doctors actually encouraged us to eat as much as possible and stay active to prevent blood clots in our legs. I managed to put on 15 pounds in seven months, and the tumor is in regression...

So many people told us that cancer feeds on sugar, so we decided to cut that out entirely. Now, we stick to organic fruits and vegetables, organic blackberry juice, local honey, and homemade bacon and pork rinds... He hasn't had too much trouble with nausea so far, and he's eating several small meals throughout the day. For me, the most important thing is that his breathing seems easier now, so I'm guessing maybe the tumor size has decreased a bit. He stays pretty active too, whether it's just going for a walk or finding something little to do out in the yard or garden (nothing too strenuous, of course).

Joshua Kim69 said:A lot of people told us that cancer feeds on sugar, so we cut it out entirely. We’ve been sticking to organic fruits and vegetables, organic blackberry juice, local honey, and homemade bacon and lard... He hasn't dealt with much nausea (up to this point), and he eats several small meals throughout the day. For me, the most vital thing is that his breathing has improved, so I'm assuming the tumor size might be shrinking. He’s moving around quite a bit too, whether it's going for walks or just finding something to occupy himself with out in the yard or the garden (nothing strenuous, obviously).

Those are the typical proponents of the ketogenic diet—where all the energy is derived from fats. Some of them take it to such an extreme that they actually end up opposing chemotherapy altogether. Most of them are perfectly healthy individuals who have only ever read about tumors in a book. Since there is no definitive proof that it helps, nor any proof that it makes things worse, the choice rests entirely with you. As for the specific mechanisms by which cancer feeds and survives, frankly, we still don't know. If we truly understood those mechanics, we would already have a cure. Carbohydrates are certainly a suspect, but whether the cancer is feeding on carbohydrates as such is still something we haven't figured out. Regarding everything else, the main thing is just to keep him moving. Everything seems fine right up until a person stops being active...

Angela Wright said:Dad needed radiation for those spinal metastases. I honestly don't understand why they didn't order it sooner. That's essentially how you deal with them.
The Dexamethasone helped because he was dealing with brain edema caused by the metastasis pressing against his brain; he was having episodes, which subsided once the steroid therapy kicked in. As for his leg, it’s likely due to the spine, though it could be surgical damage.
I don't know what else to say, except it feels like a case of too many overworked administrators who can't perform their jobs properly and don't communicate well with each other, leaving my father's condition in this shambles.
Find the link; I'm afraid you won't have time to deal with other pressures. Ideally, you should move him somewhere out of town for treatment, so if all else fails, at least he has quality palliative care.
And check with St. Nedelj about getting that spinal area radiated.

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It's been nearly three weeks since Dad came home... it took some time to adjust. At first, you think you'll just snap, but then you settle in, though "intense" is an understatement.
Nothing from St. Nedelj; they haven't been able to help.

He gets tremors in his legs sometimes—uncontrolled, of course, and he doesn't feel them—but I see them twitching. And when we're doing hygiene, he says he can feel touch in the anal area.
I know the spinal cord is incredibly sensitive and the metastasis caused damage, but I'm still clinging to the hope that I might dig up some treatment that could repair that damage.

His second round of chemo is next week, and the radiation for the spine and head is in about ten days... a private physical therapist has started coming by too. It's a constant struggle.

Since he spends most of his time lying on his back, he can't really cough; when he tries, it sounds terrible, so I turn him onto his side every time... is it normal in these circumstances to be unable to cough?

His blood sugar is all over the place because of the Dexamethasone, so he started taking the pills he used before, which makes it more manageable now—it stays under 15. We've lowered the Dex slightly... otherwise, has anyone here ever adjusted their dose of Dex on their own? How do you even know how much to increase or decrease?

Regards to everyone, hang in there.

cosmicmason15 said:It’s been almost three weeks since Dad came home... it took some adjusting. At first, you think you’ll just snap, but you get used to the rhythm, though "intense" is an understatement.
Nothing from St. Nedelj, I can't help there.

He gets these tremors in his legs sometimes—uncontrolled, of course, and he doesn't even feel them, but I can see them twitching. Even during hygiene care, he mentions feeling sensation around the anal area.
I know the brain is incredibly sensitive and the spinal metastasis caused significant damage, but I’m still holding onto hope that I can dig up some treatment that might repair that damage.

His second round of chemo is next week, and radiation for his spine and head starts in about ten days... we also started seeing a private physical therapist. It's a constant battle.

Since he spends most of his time lying on his back, he can't really cough properly; when he tries, it sounds terrible, so I turn him onto his side every time... is it normal in these circumstances to be unable to cough effectively?

His blood sugar is all over the place because of the Dexamethasone, so he started taking the pills he was on before, which makes things more manageable—he's staying under 15 now. We've lowered the Dexamethasone slightly... otherwise, has anyone here ever adjusted their Dexamethasone dose on their own? How do you even know how much to scale it up or down?

Hang in there, everyone.

Usually, you taper off Dex by 2mg per day. The dosage is basically adjusted based on whatever neurological symptoms crop up.
Right now, the blood sugar is your smallest issue; Dex is the necessary evil. The pills keep things somewhat under control. Once the radiation starts, things should improve. You might even see an improvement within a week because those targets are quite radiosensitive.

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Hi everyone. I just found this thread. I haven't read everything yet, but the support in here is clearly wonderful.
My mother was diagnosed with colon cancer a few months ago. She finished 10 radiation sessions and that was it.
They say chemo isn't worth it. They gave her a prognosis of just a few months left.
Is it worth seeking a second opinion? Also, does anyone have experience with the St. Nedelj clinic?

Laura Lee78 said:Hey everyone, I just stumbled upon this thread. I haven't read through everything yet, but I can tell the vibe here is incredibly supportive, which is wonderful.
My mom was diagnosed with colon cancer a few months ago. She’s already finished 10 rounds of radiation and that's supposedly it.
They're telling us chemo doesn't make sense at this stage. They basically gave her a few months left, and that's the end of the line.
Is it worth seeking a second opinion? Also, does anyone here have experience with the clinic over at St. Nedelj?

You should definitely try getting a second opinion from Dr. Cepulic.
If your mom is still in decent general shape, I don't see why she shouldn't be considered for treatments that could at least slow things down.

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Angela Wright said:Maybe try getting a second opinion from Dr. Cepulic.
If her general condition is stable, there’s no reason she shouldn't be a candidate for therapy aimed at slowing disease progression.

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She's quite frail. She lost nearly 65 pounds, and she's diabetic on top of everything else...
But thanks for the advice; I'll seek his opinion.

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