I’ve been away for a few days, and you all certainly haven't slowed down while I was gone 🙂 It’s genuinely heartening to see some familiar faces returning to offer their support, and even more wonderful to hear that people like fadedtrucker5 are doing alright Kate James38, I truly believe you're going through an incredibly difficult time, and I suspect that, like most of us, you aren't exactly thrilled with the medical professionals involved; we aren't either, yet we find ourselves forced to rely on them, and if we can't fight the system head-on, we simply have to learn how to navigate it. My father-in-law went through a period where he was extremely weak, and he certainly wasn't in any position to be chasing doctors around hospitals or hunting down information himself, but my husband and I took it upon ourselves to knock on every door possible, praying and waiting for hours—sometimes even days—just to get a single response or a lead. That is just the reality of this situation: if you don't put in the work yourself, you absolutely cannot expect anyone else to do it for you. We are lucky to have such kindhearted people here, like Angela Wright and vividsailor7, who actually dedicate their precious time to helping us, and for that, I am deeply grateful; however, you don't encounter that level of compassion everywhere, which means we must continue to fight our own battles and conduct our own research. As for our situation, things are stable; my father-in-law is feeling great, and he even managed to go handle his blood work entirely on his own today. His white blood cell count has naturally dropped again following the therapy, but at least now we know we can get those numbers back up quickly 🙂 We are all fighting this together, and for now, we are managing to maintain a semblance of a normal life (if you can even call it that). I’m keeping all of you in my thoughts; listen closely to the advice offered by these brilliant and selfless individuals, and I will talk to you all again very soon 🙂
I’ve got some fresh updates to share with everyone, and honestly, things are looking incredibly bright; our patient handled this second round of chemotherapy exceptionally well. After five days of treatment, they are being discharged from the hospital tomorrow. Unlike that first cycle, there was absolutely no loss of appetite and none of the pain we dealt with before. They feel fantastic and have been eating both heartily and healthily throughout the entire process. There was a brief moment of nausea yesterday, but it passed quickly and didn't cause any real trouble. Mentally, they are doing wonderful too—constantly laughing and keeping the mood light. If we can just maintain this momentum and see the same positive results moving forward, we'll be in great shape. Sending my best to all of you.
Angela Wright, I want to extend my sincere thanks to you for showing up here so consistently and offering guidance to those who are clearly in desperate need of it. It is truly disheartening how this entire struggle reveals the reality that so many people would love to help but simply lack the know-how, while those who actually possess the expertise and capability choose to stand idly by and do absolutely nothing. Hang in there, Emily Edwards19, and make sure you stay close to your friend; I am certain your presence will mean the world to her. It honestly warms my heart to see that there are still individuals like you out there. Best,
Emily Edwards19... I am truly devastated to see everything spiraling downward like this. Honestly, I'm at a loss for words and I don't even have any advice to offer; I am simply praying that things turn out okay and sending you my most heartfelt embrace of comfort. 😢
I have a question for all of you. Our patient is currently hospitalized and is set to begin five days of chemotherapy... I am wondering what kind of food is actually permissible during treatment? To be honest, he can’t even look at the hospital food anymore because he’s spent far too much time stuck with it lately, and their menu is just the same repetitive stuff over and over again. We have been bringing him fruit, green tea, and lemonade since he isn't supposed to have thick juices, but nobody has given us any concrete guidance regarding nutrition. What do you all recommend?
I honestly don't even know where to begin when it comes to doctors. On one hand, I get that mistakes happen because they’re human beings and not some flawless machines, but on the other hand, I find it absolutely impossible to accept how much they've reduced everything to a mindless routine. Just ten days before his diagnosis, a doctor told my father-in-law that there was nothing wrong with his lungs... he just needed to quit smoking, spend more time outdoors, and try some breathing exercises. It sounds frankly ridiculous; we went out and sought three more opinions, and all three confirmed it was a tumor. It turned out to be a massive malignant tumor. What would have happened if we had actually listened to that first opinion and wasted our time with those stupid exercises? Believe me, I don't know... we probably would have just kept living our lives until something became undeniable and far too late. This whole situation irritates me just as much as it seems to irritate all of you, but what infuriates me most is having to cough up hard-earned cash just to be promised that they will do everything in their power. I am not saying everyone is like this—we have met wonderful doctors and nurses who are truly dedicated to doing their jobs properly—but unfortunately, we have also encountered some truly terrible people. Here is a perfect example: after we paid our bill following a few days in the hospital, suddenly the staff started trying so hard—making sure he ate, making sure he drank, adjusting his bed properly, helping him to the restroom, and so on. Meanwhile, right next to our patient, there was an elderly man who couldn't move on his own and was essentially condemned to hunger until a visitor arrived or another patient decided to feed him; they didn't even bother checking on the medication he was supposed to be taking. It is appalling! Best regards to everyone
It’s honestly exhausting seeing everyone check in here just to share bad news. That said, there are still some truly wonderful people on this forum who have stepped up to offer support when you needed it most. We took my father-in-law in for blood work today, and the results were nothing short of staggering; his white blood cell count jumped from a terrifying 0.6 to 4.2 in just six days, and now, after seven more days, he's sitting at 9.8, leaving the entire medical team absolutely stunned by this level of progress.🙂)) He’s staying at the hospital today to begin his second round of chemotherapy. We are holding onto the hope that things stay this positive and that his momentum doesn't falter.
B5, I am truly relieved to hear it isn't leukemia. Reading your post honestly gave me such a massive sense of relief. Just keep studying and once you find a moment to catch your breath, please reach out.
vividsailor7, I want to personally thank you as well for stepping up and taking the time to shed light on all these things we clearly don't understand yet.
Emily Edwards19, I am just so incredibly sorry... I sent you a private message. Please, don't let this get the best of you!
fadedtrucker5;35561579 said:They are essentially just small protein shakes that taste mild but pack a massive nutritional punch. Honestly, drinking one of those should be more than enough since they function as full meal replacements, providing anywhere from 300 to 500 calories each. They come in various flavors and are specifically designed for people who are malnourished or simply can't manage solid food anymore. It would definitely be worth giving them a shot.. 👍
🙂[ Oh, you're talking about those... we actually introduced him to them. He stuck to them for three days straight, but now that he’s eating properly again, we’ve phased them back out. He had the chocolate and vanilla ones 🙂 How are things on your end? Where is BU BU hiding? What's the word with her? I hope you all are doing well; I'm keeping my fingers crossed for everyone.🙂🎉
Edit: I've actually started working again, so I won't be able to hang out on the forum nearly as much as I'd like! Sending a huge hug to everyone out there fighting their own battles, and to those of you supporting someone who is! 😘 I am praying for all of you; you are in my thoughts, and I’m sending nothing but hope and positive energy your way! <3
I'm really glad to hear you've started working; there is something undeniably encouraging about stepping back into your old routine and life. I haven't quite warmed up to the idea of those shakes yet... what can you tell me about them?
Here I am again, 🙂 and this time I actually have some good news to share. My white blood cell count, which had plummeted to a terrifying 0.6, has finally climbed back up to 4.2. It turns out that fighting for every single sip and every single bite was absolutely worth the struggle. Before we started this therapy, they had even dipped as low as 6.4, so we’re staying optimistic and pushing hard to see if we can nudge those numbers even higher. Best regards
We’re currently standing by for the bloodwork results to see if there’s any actual improvement. We are holding out hope and praying for a positive outcome.
Elizabeth Perez33, thanks for being in this fight right alongside us 🙂 Everything is looking solid today, and we’re holding onto the hope that this momentum keeps building. His hair has started thinning out, but honestly, neither of us cares one bit—if anything, he’s actually relieved because it means he can finally ditch the razor and skip the beard trims altogether. For all intents and purposes, everything is a perfect 5 🙂 Best regards to everyone, and a massive, heartfelt thank you to Angela Wright for starting this thread. It truly means the world to me to know that when I speak up, I have actual support and can connect with people who are dealing with the exact same struggles. I can't thank you enough; hope you all have a wonderful day
Today has been an absolutely wonderful day 🙂 My brother-in-law ate a massive amount today, which has left us all feeling incredibly happy and upbeat. We spent the day out and about, and by the time we returned home, everything was perfectly prepared and looking flawless. It’s exactly how things should be. This kind of day truly gives us the strength to keep pushing forward. I know the road ahead is bumpy, but you just have to keep grinding through it. Sending my best regards and big hugs to everyone... I honestly feel so joyful right now I could hug the entire world 🙂)))))Hooray
Ashley Grant86... I honestly have little patience for these kinds of prognoses because a true expert would never hand them out so freely. I personally know people who were given nothing more than a month to live, yet they’ve managed to stick around for years. Everything is entirely subjective and depends on the individual, and from everything you've told me, your mother sounds incredibly resilient. You should take comfort in the fact that she still has an appetite and stays mobile; try your best to persuade her toward therapy—if not for longevity, then at least to improve her quality of life. Stay strong and keep drawing strength for whatever tomorrow brings. 🙂 Best regards P. S. Joy Celebrate those small victories just like I am right now 🙂))))))) My brother-in-law just polished off an entire bowl of potato, onion, and carrot soup topped with ground flaxseeds 🙂)))))))))) Hooray 🙂We keep fighting and we aren't backing down (my husband and I make a hell of a team)
I suppose I should provide an update on our situation as well... My father-in-law is actually feeling quite good; he isn't dealing with nausea, pain, or insomnia, yet we are still stuck grappling with his lack of appetite. He truly tries, but he simply cannot swallow solid food—it’s not that swallowing hurts, it’s just that the food refuses to go down. He manages about ten spoonfuls of something solid a day, but he compensates by drinking plenty of beet, carrot, lemon, apple, and grapefruit juice; he also drinks Noni, orange and lemon lemonade, and royal jelly (which seems to agree with him best, though I worry he might be overdoing it). On top of all that, he’s taking Propolis, Glucan, Selenium, Lana oil, and a handful of vitamins and minerals including iron and iodine. As of yesterday, we started giving him one glass of liquid nutrition daily because we are terrified he’ll lose weight. When I look at the big picture, things don't seem entirely bleak since he's getting everything his body needs, but without solid food, his stools are strictly liquid, which is clearly bothering him. 😢 I read somewhere about a specific syrup that can only be prescribed by a medical board, and apparently, it works wonders for stimulating appetite. It is typically prescribed to people suffering from anorexia or those battling these kinds of devastating illnesses and side effects. If anyone here knows anything about this, please let me know, because we absolutely have to take action regarding this issue... our patient looks remarkably thin despite appearing otherwise healthy, especially now that he’s only 67 kg at a height of 1.82 meters.
Ashley Grant86 said:Hello everyone. My mother is suffering from chronic lymphocytic leukemia, or CLL. She’s been living with this diagnosis for two years now—maybe longer, honestly, because there were absolutely no symptoms initially. Ever since I found out what she was actually fighting last year, I have thrown myself into researching every single detail and searching for any possible way to help her.
The harsh reality is that there is no cure, a fact her hematologist stated quite bluntly to my face.
We have spent countless hours doing blood work and waiting on CT scans, and for the last seven months, we've even turned to private clinics for various treatments, ranging from one-day sessions to home-based antibiotic regimens. As the treatments had to be intensified, we reached a stage where hospitalization was necessary, but she refused; she is naturally active and simply cannot stand being isolated from people—she loves to talk and walk, and since she felt somewhat better, I told her I wouldn't force her, as it didn't feel right to push her.
Since this spring, we haven't gone anywhere—no tests, nothing—because things seemed stable, but deep down, I knew the lymph nodes would eventually start swelling again and things would take a turn for the worse because there is no cure.
Two days ago, in the early morning, she told me she was having abdominal pain and wasn't feeling well; she finally agreed to go to the hospital, but then she hesitated, saying she'd go once the weather cooled down a bit. I can see how bad this is getting, but I am at a loss for how to help. I hate seeing her suffer, but I have to work, and I have no one else to rely on but myself.
This illness is slowly killing me too, because I can't find an escape; I need to be by her side, yet I have to maintain my job, and managing all of this simultaneously is draining my energy and my finances to the absolute limit.
Does anyone here have experience with this? Is there some kind of alternative that could at least ease her discomfort, or perhaps some advice on how to endure this, given that the disease is so prolonged and utterly exhausting for everyone involved?
Any form of assistance or even just a word of advice to make this whole ordeal more bearable would be deeply appreciated.
I am truly sorry to hear about what you're going through, and I understand your struggle because my own family has been battling similar issues for months. I know how expensive and draining it all becomes, but you have to keep fighting. Try to bolster her immune system with natural things like beet, carrot, and lemon juice. Make sure she eats plenty of fruits and vegetables... berries and citrus are best, along with green vegetables and tomatoes. Don't lose hope, because leukemia can be managed effectively; the road is long and incredibly bumpy, but it is worth the effort. Another piece of advice from me: do not abandon the doctors; even if you explore alternatives, listen to them. They might not say much, but I believe their guidance is something you must follow. Hang in there, and please take care of yourself and your mother.
When it comes to getting his appetite back up, neither Multi Sanastol nor pikovit seems to be making any difference at all. 😢He’s barely eating anything unless he forces himself to, simply because he knows it’s necessary. He does manage to drink quite a bit, though, since liquids are much easier for him to handle. We’ve been giving him beet juice, lemonade, Noni, and a whole array of various vitamins and minerals, and while that’s all good for him, it isn't slowing down the weight loss or providing any actual strength. That said, we are relieved that he seems a little better than he did just a few days ago. We’re continuing the fight and doing our best to keep his spirits up. Today, he actually managed to step outside on his own just to get some fresh Air.
Elizabeth Perez33 said:Thank you so much, dear, for those kind words! 🙂
If—God willing 🙂—it doesn't turn out to be leukemia, I intend to stay right here with all of you and keep you in my prayers. I honestly can't say how much useful advice I can offer based on my own past illness, since I conquered that battle over a decade ago and most of the details have faded from my memory, but I truly hope that my prayers and my unwavering support will at least mean something to you all! 🙂 🙂
Please stay by our side no matter what, so we can support one another and keep each other going. Right now, things are just completely unstable... his temperature drops, then it spikes again... he's still barely eating, though he does drink plenty of healthy fluids; solid food is almost non-existent. He only manages a few bites here and there. I can't tell if he's physically unable to eat or if he simply lacks the drive to get up and go out into the yard or do anything active. When I ask him if he can move around, he just insists he doesn't want to, but when I start nagging him, he claims he's just too weak.
I’m going to speak up and I am going to fight; there is absolutely no surrender here.🙂 It hasn't been officially confirmed whether it’s leukemia or something else yet, but regardless, my battle begins now.
That is exactly the right mindset to have. You need to focus entirely on boosting your immune system and your blood health—that is the absolute key to everything. Let me try to brighten your day a bit by sharing a story, just in case this does turn out to be leukemia (though I truly hope it isn't). Right here in our neighborhood, there was a ten-year-old boy who, after an incredibly long and grueling struggle, managed to beat leukemia. Any illness like this inherently erodes your mental state and tries to make you weak, so you must make a conscious effort to stay strong. That means doing things you actually love and that bring you joy, while maintaining a healthy diet filled with plenty of fresh produce. Fight on, because I truly believe you can win this.🙂🙂