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

Alma's appetite is skyrocketing right now. You absolutely have to keep a close eye on her blood sugar because this stuff sends it through the roof.
The second line of defense involves a protocol using CCNU and Vincristine.

To my dear online friends.
My Mom passed away just over two weeks ago. Life has dealt me a massive blow. The sadness, the pain, the emptiness... they are indescribably huge. Some people tell me that time heals all wounds, but I’d fix their phrasing—over time, you just learn how to live with that pain, and the feeling of grief and emptiness will always be there. On one hand, I feel hollow, like half of me died along with her, but on the other hand, I have this inner peace because I did everything I possibly could. I know I did my best to help her fight an enemy that was simply much stronger in the end. We tried everything, from expensive alternative treatments to standard medical care. In those final days, I gave whatever I could to try and help, and she knew that too, so I'm at peace with that side of things.
Anyway, Mom left behind quite a lot of nutritional supplies, and I would love to give them to someone. I was thinking of taking them to a nursing home or some kind of foster care facility, but I wanted to offer them to you all first.
She has some Ensure Plus left: strawberry flavor, 3 units, expiring 12/2015; vanilla, 8 units, expiring 12/2015; and chocolate, 21 units, expiring 02/2016.
There's Nutridrink: vanilla, 2 units, one expiring 04/25/2015 and the other 05/24/2015; and chocolate, 2 units, expiring 08/03/2015.
Then Supportan: cappuccino, 4 units, expiring 10/2015; tropical fruit, 2 units, expiring 12/2015; and chocolate, 1 unit, expiring 12/2015.
And Fresubin: berry flavor, 5 units, expiring 02/2016; vanilla, 1 unit, expiring 10/2015; and apricot/peach, 1 unit, expiring 04/2015.

Also, Mom has an open container of Megestrol, though it's only been opened; its expiration date is 07/2017. I know it's used to stimulate appetite and it's pretty pricey, around $267. I'm not entirely sure what the Social Security Administration guidelines are regarding coverage for it, but if anyone knows an oncologist or needs this medication and can't afford it out of pocket, I'd be happy to give it to you. I'm honestly not sure who qualifies for it under insurance or if everyone who needs it actually gets it.
So, if anyone is interested, please reach out. If nobody wants the supplements, I'll take the food to a nursing home or something similar, and I'll take the Megestrol back to the pharmacy.
Warm wishes to everyone. Keep fighting, and don't give up. My Mom fought until her very last ounce of strength and she never surrendered, but unfortunately, despite all the effort, she lost the toughest battle of her life—a battle against a much more powerful foe.

Amanda Wells75 said:My dear online friends.
My mother passed away just over two weeks ago. Life has dealt me a massive blow. The grief, the pain, the emptiness... they are indescribably overwhelming. People tell me that time heals all wounds, but if I’m being honest, I’d phrase it differently: with time, you simply learn how to live with that pain, and the sense of loss and emptiness will always be there. On one hand, I feel hollow, as if half of me died along with her, but on the other, I have a certain peace of mind. I know I did everything within my power to help her fight an enemy that was ultimately just too strong. We tried everything—from expensive alternative therapies to standard medical treatments. In those final days, I gave whatever I could to try and help, and she knew that. Because of that, I can find some solace...

I know exactly how you feel; I went through all of this myself. It does get a little easier as the years pass, but it still hurts, especially when the holidays roll around.
I was at the cemetery yesterday, and even though it’s been seven years since my mom passed and ten since my dad, I still broke down.
It also hurts knowing my parents won't be around to meet my child (I'm five weeks pregnant), though I'm hoping my father-in-law lives long enough to see his first grandchild (my sister-in-law is also four months pregnant).
Hang in there, and try to focus only on the beautiful memories... eventually, the rest will fade.

Svekar starts his second round of chemo this Tuesday. I’m really hoping he handles it just as well as the first one—but more than anything, I just hope it actually does its job.
I need to give him a call today to check on his blood work results.

Zachary Howard2, you really made my day 🙂
I've got my fingers crossed that everything goes perfectly, especially this first three-month stretch. If you need anything at all, you know where to find me 😉 Take care.

Angela Wright said:Zachary Howard2, you really made my day.🙂
I'm crossing my fingers that everything goes perfectly, especially this first trimester. If you need anything at all, you know where to find me. 😉 Take care.

🙂
Thanks, dear... I'm just praying I can bring this little one into the world safe and sound. 🙂

Sure, why wouldn't I 🙂

My dad just got hit with a sudden lung tumor diagnosis:
Adenocarcinoma I. Dex (IV, T4N2M1, ECOG2), bone metastasis (th6, ribs).
On top of that, his heart is weak (cardiomyopathy), he’s got high blood pressure, and type 2 diabetes—he’s already on about 20 different meds a day (including Warfarin).
He’s crashed hard in just a few days and is in massive pain, so he was prescribed Oxycontin 10mg twice a day, plus Analgin and Brufen as needed.
The doctor sat us down and told us this is a brutal situation. She said chemotherapy is the only option, but even that's questionable because of how weak his heart is.
Dad's being discharged from the hospital now; he's 75.
Please, tell me: should I be looking for a second opinion? What else should I be asking the doctor? I did a quick Google search on radiofrequency ablation, some natural supplements (that won't mess with the Warfarin)... basically, anything you think I need to know.
It’s absolutely gut-wrenching watching your own father go through this.

Since I don't have computer access at my parents' place, I'm slowly working my way through the previous pages here. Please, write back with whatever you've got—this is urgent.

Zachary Howard2, you really made my day with the news about your little one on the way. I am just so incredibly happy for you.
I think after all these years, it’s still just as hard, isn't it? Missing your parents feels just as heavy as that very first day they left you. I miss my Mom so much, and honestly, I still can't wrap my head around the fact that she's gone. I find myself reaching for the phone constantly, just wanting to call her and check in. Things have been hitting me really hard lately. Over Easter, a colleague of mine passed away—she was born in '70. She fought an autoimmune disease, systemic Lupus, for a month, and it just absolutely destroyed her. In those final days, she was in so much pain; her kidneys failed and she had severe ascites building up in her abdomen. It was so similar to how my Mom spent her last days. One minute, this woman is working, running around, rushing through hallways to get everything done, and the next, she's just gone. And now, I just found out a cousin of my Mom's has uterine cancer and is waiting on surgery. I don't know, maybe it's because my own wounds are still so fresh, but it all just hits harder.
Zachary Howard2, I'm so glad to hear your father-in-law is doing okay. I really hope he handles this round of chemo well and gets to stay with you all for a while longer—long enough to meet the new baby joining your family. I can just picture you all taking photos with him alongside the kids' birthday cakes.

Amanda Wells75 said:Zachary Howard2, you’ve truly made my day with the news about the baby on the way. I am genuinely thrilled for you.
I imagine it feels just as heavy for you after all these years, and that you miss your parents just as much as the very first day they left you. I miss my own Mom, and even now, I still can't quite wrap my head around the fact that she’s gone. I often find myself reaching for the phone just to call her, just to check in. Lately, life has been throwing some incredibly difficult things my way. Over Easter, a colleague of mine passed away—she was born in '70—after a month-long battle with systemic Lupus. It absolutely ravaged her. She spent her final days in intense pain with kidney failure and ascites building up in her abdomen. It was painfully similar to my Mom's final days. A woman who was working and running around just yesterday, rushing through hallways to get everything done, is simply gone. On top of that, I recently learned that a cousin of my Mom's has uterine cancer and is awaiting surgery. I suppose it all hits harder because my own wounds are still so fresh.
Zachary Howard2, I’m so glad to hear your father-in-law is doing okay. I really hope he manages to pull through this round of chemo as well, so he can be there with you all to see the babies arrive. I can just picture you taking photos with him alongside the kids' birthday cakes.

🙂
That's just how life goes, I guess. Just yesterday, a friend was telling me that her husband had testicular cancer five years ago at an early stage; they removed a testis, and everything seemed fine until a few weeks ago when his markers came back high during a routine checkup. He went through all the tests, but nothing showed up initially, only for changes to finally be detected in the other testis via ultrasound. Now he has to undergo chemo. The worst part is that they’ve been trying to have a child, and it felt surreal talking to them about my pregnancy when they might not even be able to have children at all.

On a different note, my father-in-law is handling this second round of chemo quite well. His blood work looked great, so I’m hoping all the treatments we're throwing at him are actually doing the job.

Hey everyone, joining the thread here too. 😢

The last two weeks have been a total mess for my family. Mom was diagnosed with breast cancer, and now my brother is in the hospital with suspected lymphoma.

Mom had ductal carcinoma in her left breast 12 years ago. Since they caught it while it was still in situ and only 2mm, she just had surgery—no chemo or radiation needed—and she’s been fine for the last 12 years.
Now they found a 5mm spot on her right breast. She had surgery a week ago; the initial histology looked benign, but we're still waiting on the pathology report. We thought we knew what to expect there, but then my 36-year-old brother dropped this bombshell on us.

He’d been coughing for a while, so he went in for an X-ray, and they saw this huge shadow. We were terrified it was lung cancer. 😢
He had a chest CT immediately, and it showed a massive 11x8x6 cm tumor sitting right between his heart and lungs. The doctor thinks it's likely lymphoma, though maybe a thymoma (less likely).
He’s in pulmonology now. They ran everything—bronchoscopy, echocardiogram, spirometry—and all his other organs are perfectly healthy.
The mass isn't spreading into them; it's just pressing against them, which explains the cough.
They did a surgical biopsy two days ago, and the preliminary cytology points toward lymphoma.
Now we’re stuck waiting about a week for the results to confirm the specific type.
His blood work looks okay; LDH and GGT are fine, just slightly elevated ESR and CRP.
Doctors didn't feel any swollen lymph nodes in his neck, armpits, groin, or abdomen—just a few up to 1.5 cm in his chest near the tumor itself.

My brother actually feels pretty good. Aside from the coughing and some itchy skin, he hasn't had many symptoms.
He’s staying positive, though. He really believes he'll pull through (we're religious, so that helps), and we've been doing a deep dive into lymphoma info online.

I won't get into the emotional rollercoaster of all this; I'm sure you can imagine how it feels.
My brother and I are basically playing caregiver to our parents right now because they're still in complete shock.

Anyway, my brother will be getting treated at the hematology department at Duke University.

I'm holding it together mostly, but the waves of anxiety and fear hit me out of nowhere every so often. Now comes the waiting game...

If anyone has experience with lymphoma or just some advice or thoughts, please let me know.😢
Really hoping it's not T-cell lymphoma...😢

Hello everyone, just checking in after two months... my father finally underwent surgery for a brain tumor. To be honest, we still aren't entirely sure what kind it is. They ran him through five PET Scans, two MRIs, and an angiography because they were also considering an AVM. He’s already dealing with some internal medicine issues, so I wrote earlier that the surgery itself was quite intense. Yesterday, he had a really hard time waking up from the anesthesia, which caused his blood pressure to drop and sent him into a coma, though he did manage to come out of it today. The anesthesiologist mentioned that while he’s stable for now, he’s still drifting, and he's currently resting in the ICU. We haven't been able to get a hold of the surgeon yet, which is stressful. I guess I'm wondering if these kinds of reactions are somewhat normal following such a major procedure, and what we might realistically expect? It's been about 24 hours since everything happened... until when is he considered to be in the most critical window? Please, anything you can share would mean so much to me.

Unfortunately, there’s no rulebook for this. Some people wake up and hit the ground running like nothing ever happened, while others are left battling motor skill issues, cognitive fog, or massive gaps in their memory... a lot of things eventually bounce back during rehab, but some stuff just stays with you forever. You have to be patient and mentally prepared for absolutely anything.

The very last thing we heard was that he’s actually opening his eyes now, and when the doctor told him to squeeze his hand if he could hear his wife calling, he actually managed to squeeze it. I suppose that's a sign, though I can't be certain... but then again, what does it really mean? Is he just drifting? Or maybe, I don't know, is he slipping into a coma?

So, basically, they aren't fully aware of their own situation, what's happening around them, or the reality of the events unfolding.

The last update we got via email from the doctor says things haven't really changed much, I guess; he’s still pretty lethargic and lacks any real energy, but he did manage to eat some breakfast, and they moved him today from the ICU back down to the regular ward, maybe?

Edward Brooks,
Recovery takes time. The brain is an incredibly sensitive organ. You have to wrap your head around how serious his condition really is and remember that everything we’re doing right now is strictly about extending his life. You need to be ready for anything and just focus on being his rock and his support system. Hang in there.

It’s Glioblastoma Multiforme, Grade IV, and since we're dealing with being 73 years old, I guess our treatment options might be somewhat limited. We are currently waiting on the decision from the medical board, and they'll be sending out notifications to all the regional hospitals once things are finalized. The surgery was performed by the neurosurgery team in New York City, led by Professor Vujotic, who heads up the pediatric neurosurgery department there. They managed to remove the tumor entirely, so everything seems to be going okay for now, and the recovery process is moving along slowly. But now I find myself wondering, what comes next? What kind of prognosis are we actually looking at? I try to read through everything on the forums whenever I can catch a break when I'm not stuck in the hospital.

Hello,

I was wondering if this product can be used for immune support, and if anyone here has any personal experience with it?
Specifically, can it be taken alongside beta-glucan, and would there be any negative interactions if someone is currently undergoing chemotherapy or cytostatic treatment following a standard protocol? Thanks.

http://qualityahcc.com/ahcc-kinoko-p...uality-of-life

Svekar is heading into his third round of chemo. He’s been looking a bit frail lately, so they started him on Forticare; honestly, it’s doing more good than harm since it seems to help manage the diarrhea he's been dealing with.
He’s actually handling the chemo itself quite well—the only real issue is that he can't seem to keep things regular. Does anyone happen to know of anything effective for getting his digestion back on track?
I’m getting a little worried about how thin he’s becoming. He’s managed to drop another 4kg, even though he’s eating.