Angela Wright said:Alma, that’s just due to poor circulation. Try massaging her legs using circular motions, starting from the feet and working your way up toward the calves and knees. Grab some baby oil, or better yet, a homemade lavender and rosemary oil for the massage. I’ve used that myself and it helped immensely. You should focus more on gentle stroking rather than heavy pressure. These are just side effects of Cushing syndrome caused by the steroids. I already posted about everything else in the glioblastoma thread so I won't repeat myself here.
Thank you so much! I actually suspected that was the cause, but the discoloration really spooked me—though it did fade right after I massaged and rubbed the area. I already massage her whole body, just gently gliding over her skin and applying baby lotion, but I'll definitely pick up some oil. Thanks again.
Hello everyone! My mother-in-law's condition is steadily declining (GBM IV). Her sleep periods have become much longer, and she’s incredibly difficult to rouse, especially in the mornings; it usually takes her an hour or two just to settle in and realize where she actually is. Mentally, she's quite disoriented—her speech is fragmented, and she keeps repeating the same questions over and over. Sometimes it's like she snaps out of a dream, looking at us with total surprise, finally recognizing us, and then just breaking down in tears. She can't walk anymore; what passes for walking now is just tapping her feet in place for a few seconds before she simply collapses into a sitting position. When she sits on her left side, she leans heavily that way because she has zero control over that side of her body. She's also swollen and has gained weight, weighing about 200 lbs now, which makes moving her from one spot to another an absolute struggle. She’s taking Dex 4mg four times a day, along with two types of stomach medication, though she constantly complains of abdominal pain despite having no issues with gas, constipation, or hardness. Her legs are turning a dark, bluish-black color, so we massage her feet in a water massager and then apply baby cream to her feet and her entire body. We've started using adult diapers since she has lost bladder control. We are currently waiting for her 11th cycle of Temodar and are hoping to get her into a hospice facility. It's a bit of a challenge to arrange here, especially regarding the state-run hospice near the hospitals in the local area, which provides medical services and stays connected with the medical institutions if needed. I guess I wrote another long post. My question at the end—and honestly, what scares me most—is that discoloration of her feet; they look almost black. Could that be from sitting or lying down too much? We are drawing blood today to check everything, including her blood sugar. I really hope it isn't related to high glucose levels.😠
Amanda Miller69 said:Hang in there. 🙂 It feels like everyone here is going through a rough patch lately. I was just thinking, if chemo isn't really doing anything for my father-in-law (he has this lump on his abdomen that's a metastasis and it's clearly growing), does it even make sense to push him through a sixth cycle of chemo before we finally get that PET Scan?
Thanks, dear Zachary Howard2! So many thoughts are racing through my head right now: "what should we do, and is any of this actually worth it?" We're trying to stick with the chemo, but it honestly feels like the "enemy" is winning. I don't even know how he'll manage to stay still for an MRI, considering he’s already semi-conscious, disoriented, and barely able to move as it is. It's painfully obvious the tumor is back and taking over. Honestly, we're just lost on what the next move should be. The oncologist's stance is basically to keep up the chemo as long as possible—or at least as long as his blood counts allow. We aren't even driving him to the oncology clinic just for blood work anymore because getting him down those stairs is such a nightmare; a nurse just comes by to draw his blood instead. It's just exhausting, and unfortunately, we have to deal with it.😢
My father-in-law’s condition is shifting rapidly. He’s having a hard time walking—only gets up when he absolutely has to—and he’s losing his balance quite a bit. He’s also increasingly losing his sense of time and awareness of what’s happening around him. He complains about all sorts of pains, ranging from headaches to stomach issues and leg pain... currently, he’s taking 4x8 tablets of Dexon, Trodon for the pain 3x1, Controloc for his stomach, Xanax 3x1.5, and Analgin as needed. His mental state is also spiraling, swinging wildly from crying to euphoria. Over the last two days, he started having incontinence issues, so we’ve had to start using diapers. His vision has also weakened significantly. He has zero control over his appetite; one minute he claims he isn't hungry, and thirty minutes later, he’s asking for food. His short-term memory is basically gone—he can still recall things from the distant past, but anything from half an hour ago just vanishes. He’s scheduled for his 11th round of chemotherapy on July 7th. I honestly don't know if there's any point in him receiving it, but I guess we just keep hoping that each session buys us another month. His condition is actually pretty similar to how he was before the surgery—in some ways, it’s even worse—and he’s still relying on Dexon; I don't even want to imagine how bad it would be without it. The oncologist wants to finish the 12th cycle before ordering an MRI. I’m genuinely afraid he won’t even make it to the scan, given how fast all these negative developments are happening. Sending my best to everyone—hang in there!
Angela Wright said:Honestly, you’re the only ones who can actually help her by being more assertive—maybe even a little aggressive—by constantly demanding her right to the best available care, assistance, and pain management. Just keep shoving that right in their faces. Make them actually do their jobs.
Well, we took your advice. We went to the oncology department, and the nurse gave her palliative care paperwork, some Trodon for the pain, a few pointers, and an MRI is scheduled for soon. Her condition is a bit more stable now regarding the pain, but mentally? It’s hit or miss. Like I mentioned in the GBM thread, it fluctuates constantly. It goes from her being fully conscious to semi-conscious, and then just a total shutdown. At night, she’ll wake up and wander into the kitchen to urinate in pots and pans because my father-in-law forgot to lock the hallway door. She’s staying with him right now. She keeps stealing sweets, so we have to hide anything containing white sugar from her. She has a great appetite thanks to the Dexon, but her head has become completely deformed from them. Her face is so swollen. Thanks again for the advice, and to everyone else on these forums, I truly wish you all the best. Sometimes I don't even recognize myself; I don't understand where I get this much strength and courage to fight. She’s my mother-in-law, and it seems strange to everyone else how hard I’m fighting for her. I lost my own mother when I was only 17, without having a single day where I could actually do anything to help her. But for my mother-in-law, I am fighting with everything I have left in me. As much as I possibly can.
It’s me again. 😢 My mother-in-law's condition following her 9th round of Temodal (it’s GBM, after all) was actually more than satisfactory. She’s been on Dekson for about 2.5 months now—8 doses at 3 times a day, so 12 mg daily. Her appetite came back, the pains in her knees, arms, and legs vanished, and her blood sugar stayed within normal limits the whole time. We had the 10th cycle of Temodal scheduled for June 10th, but for the last 3 or 4 days, she’s been complaining of intense pain in her pelvic area. The doctor recommended Analgin and Apaurin as needed, up to 3 times a day (though since she takes Xanax, Apaurin is off the table), but honestly, it feels like she needs them more often because the painkillers wear off in just a few hours and the pain rushes right back. Her primary doctor isn't on duty until Tuesday, so we have to wait; we’ve been waiting since Friday (that's just how the procedure works here). The only instruction is to head straight to oncology immediately if she develops severe headaches, vomiting, bleeding, etc. As for her mental state, I don't even want to go there. Even when she was doing perfectly fine, she would experience brief bouts of forgetfulness, inserting nonsensical words into sentences, losing focus, and mood swings ranging from extreme sensitivity and crying to aggression and snapping at us. Right now, she’s just yelling and taking it out on everyone; she keeps saying she’s going to die soon and things like that. It's a similar situation to what happened before her first surgery, except this time there’s no vomiting or headaches. I just don't get this constant waiting for advice or doctor appointments. You'd think they could just handle everything over the phone... Last month, we had to deal with some bleeding issues. She was taking Nizon at the time to boost her platelet count. We aren't entirely sure if the bleeding was vaginal or just hemorrhoids, but the on-call doctor and an oncology nurse reviewed her blood work, gave her two tablets to stop the bleeding, and told her to keep taking the Nizon and check in with her regular doctor in four days once she returned from vacation. And honestly, trying to take her to the ER, Urgent Care, or even a GP is like watching a horror movie. The second they glance at her diagnosis, they basically say: "Well, ma'am, she's not for US!"—as if she has the plague and they've already written her off. I apologize for the long post. I am fully aware of the diagnosis and the nature of the disease itself, but the attitude from the doctors—both at oncology and everywhere else—really hurts. I just don't want her to be in pain; at the very least, I want her to be spared from that kind of treatment.
We’ve been cleared to start another round of Temodal, though the oncologist advised us to monitor her condition constantly. If we notice anything even remotely suspicious—changes in behavior, bruising, vomiting, you name it—we need to reach out to her immediately. For the time being, she’s sticking to dexamethasone at 3x4mg along with Ranisan. Regarding his situation, the doctor mentioned we need to be extra careful to prevent him from vomiting blood, as he’s having a really hard time tolerating it (dex). If everything goes smoothly with the Temodal, she mentioned moving on to a different treatment plan. She actually forgot the specific name of the medication, but I don't blame her; we're all a bit of a mess right now. We'll give it a shot, though, because she says there’s nothing left to lose. Honestly, since starting the dex, she seems to be doing better; she can manage on her own without our help, and her appetite has actually improved, which is a small miracle. Her mood, however, fluctuates just as much as the weather here in New York City. One minute it's sunny, the next it's overcast.🙂She still has those moments where she gets lost for a second, not knowing what time it is or where she is... but I guess we've just gotten used to it by now.😢
Angela Wright said:I guess Alma didn't get edema from the Temodal; it’s likely the tumor itself, especially since the Temodal doesn't seem to be doing much anymore. But hey, maybe the doctor is just hoping for some kind of late-stage reaction. Honestly, regarding the doctor, you can rest easy knowing she is working truly conscientiously—she really does care about her patients. Temodal is an expensive drug, too. I'm not sure if the Social Security Administration covers it here in the States, but they do back home. If it is covered, then she really is living like royalty, because she could have easily said "enough" after that first round of savings. As for the Dex and the injections, for us, the combination of shots and pills felt like the best way to go. Those injections are absolutely brutal, though. I took three and my backside was aching for days. Just imagine having to jab someone multiple times a day... I think I would lose my mind. It definitely puts a strain on the stomach, but Peptran helps protect it. My Mom had a super sensitive stomach her whole life and never complained about anything being too harsh. To be blunt, regarding one more dose of Temodal, I fear there won't be any benefit. You all probably need to sit down and have a very honest conversation. With a tumor like this that spreads without surgery, there isn't improvement, and clearly, surgery isn't an option for her anymore for whatever reason. Maybe try seeking a second opinion at the Mayo Clinic or somewhere in New York... I am truly sorry. What about the Dex and the injections? For us, the mix of shots and tablets seemed like the most effective combo. The shots are honestly miserable. I had three and my rear end was sore for days. Imagine having to inject someone several times a day... I’d probably go crazy. It does take a toll on the stomach, but Peptoran seems to help protect it. My Mom had a really sensitive stomach her entire life and never even complained about anything bothering her. In all honesty, regarding another dose of Temodal, I'm afraid it might not do any good. Everyone should probably sit down and have a real, open talk. With a tumor that spreads like this without surgery, there's no improvement, and apparently, surgery isn't an option for her anymore for some reason. Maybe seek a second opinion at the Mayo Clinic or in New York... I'm really sorry. 😢
Well, seeking a second opinion feels like a waste of time; three neurosurgeons in the city already said surgery would be futile and would cause more harm than good. I know Temodal shouldn't cause a reaction like that, but since it happened while she was taking it, I was terrified it was a side effect—I almost wished it actually was.😢 Temodal is provided through Social Security, so the costs are covered. The doctor wants my mother-in-law to continue receiving Temodal under strict supervision for at least two more cycles; she has six approved in total, so she has five left. Maybe the doctor is hoping, just like we are, that the tumor might slow down or settle a bit. Lately, while she's been on the Dex, she hasn't had any stomach issues, mostly because I give her Ranibos in the morning and at night, and she drinks yogurt with probiotics. As for sitting down and talking... well. My father-in-law is away from home, out of town, and once he heard about the MRI results, he just keeps paying the bills; I'm actually worried about his health. She and her sister are completely lost right now—they don't even know what to do next. We knew what we were up against from the start, but it still hurts when things begin to unfold in this "ugly" sequence. I just want her to be out of pain. We'll see about the Dex; maybe she'll do the injections first and then switch back to tablets later. Thanks for the support and the advice. I read every word you say and I feel for all of you. Good luck to everyone!
Now for some of the bleaker news. My mother-in-law's MRI results are bad; the tumor has spread to the right side. Her oncologist actually reached out to a different neurosurgeon because we can barely get a straight answer out of her primary physician. In fact, the surgeon didn't even perform the procedure himself—it was his resident, who, thank God, did a decent job. But honestly, what else can you expect from the medical system in a place like New York, where surgeons seem more interested in playing politics and lining their pockets than actually caring for patients? I suppose most people on this forum already know that. Anyway, there's no point in any further surgery; they’d likely do more harm than good at this stage. She's been started on Dekson 3X at 4 mg, along with Ranisan for her stomach twice a day (that was the neurosurgeon's call). Her oncologist is already suggesting palliative care, though she claims we aren't quite there yet. She wants to be accommodating, so she's advising that the Dekson should be administered via injection—8 mg in the morning and 4 mg in the evening—because apparently, the tablets are just too harsh on the stomach. Despite that, she insists we push through with chemotherapy; the next round is scheduled for April 1st, just to see how much longer she can hold out. That "holding out" part is what scares me, because I suspect her last chemo session caused an edema that triggered this rapid decline. Up until now, she hasn't had any dex or Dekson for the entire year, because according to them, she didn't need it. The effect of the Dekson was almost immediate the very next day; she was suddenly revitalized, even walking to the bathroom on her own, albeit with a healthy dose of anxiety. She's eating better and sleeping less. She does slur her words sometimes, repeating questions, and occasionally loses her sense of direction, the time, the date, or even the season. But overall, she isn't complaining about pain, except for her knees—especially the left one.
Maybe there’s still a glimmer of hope out there for those who can actually afford it when fighting GBM. This morning, a link popped up in the glioblastoma support group on Facebook about a potential "cure" for this brutal disease. Of course, the treatment is strictly experimental, but honestly, looking through the data and watching the footage, I found it hard to believe how much of an impact it's having on patients. If anyone's interested, feel free to check it out. A lot of people in the support group were practically begging to be test subjects for Duke University in the US. I'll try to post the link if I can get it to work.🙂
Everything is spiraling out of control, as > would say. My mother-in-law had a really hard time handling her 7th cycle of Temodal. Things seemed to have stabilized for a moment, but last night it was just constant vomiting, headaches, high blood pressure, total exhaustion, and cramping in her fingers. My husband and son went to pick her up this morning and they're heading straight to Mexico. In the meantime, we just got the MRI results back, and apparently, the tumor is back—and it’s massive. I’m fully aware of the diagnosis and the prognosis, but I guess you can't help but hope when she was approved for those 6 extra cycles and it felt like the beast was finally calming down. Now, in less than a month, every single symptom she had before surgery has come rushing back. It’s all happening so fast and so cruelly. It’s been exactly a year and two weeks since the surgery. This uncertainty and waiting... it's killing me. I just keep hoping they can help her. Sending my best to everyone on this thread, whether you're here for yourselves or for your loved ones. Even after the first MRI, the neurosurgeon suggested that a second surgery might just be "futile" because the tumor has started spreading into the centers for speech, vision, and movement. He even said that if he were in our shoes, he wouldn't touch it again. What are you even supposed to do? It's impossible to feel wise right now. I think I'm going to lose my mind from the worry and the suspense. It’s just so hard when there isn't any hope, and maybe there never really was.😢
Angela Wright said:Dear Alma, based on what I've seen, I’m afraid you might be right. It looks like things have taken a turn for the worse—a relapse on the Temodal—and that edema is likely flaring up too. You should get her to the ER immediately; they'll need to run an urgent CT scan. I am so sorry, but you really need to act now. Without anti-edema therapy, she could deteriorate incredibly fast, and then we'll be looking at a situation where everything just goes downhill. Hang in there.
Thanks for the advice. I really hope my sister-in-law listens, because she's the one managing the doctors and the actual treatment, while I'm the one actually taking care of my mother-in-law. It’s ugly to say, but I am honestly sick to death of their constant advice and opinions. They act like she’s just dealing with the flu rather than a tumor. Once things get critical and she’s bedridden, they bring her to me because I’m the one who knows how to "get her back on her feet," yet they drive me absolutely crazy with all their suggestions and unsolicited input. Sometimes I just want to pack it all in and run away, but I can't do that because of my kids.🙂
I am in desperate need of some advice or help here. My mother-in-law just finished her 7th cycle of Temodal, and honestly, she has taken it incredibly hard. For the last two days, she’s been vomiting yellow bile, can't keep any food down, and spends most of her time sleeping—she seems disoriented and can barely stay steady on her feet. It’s strange because, up until this point, she actually tolerated the treatments quite well. But ever since she found out there are still six more cycles ahead of her, she has completely spiraled. She spent an entire month just crying, lying around, or sitting staring into space. Lately, her legs have lost control, making it difficult for her to walk, and while her knees are actually feeling better, she’s started stumbling when she talks. She’s forgetting things and repeating the exact same questions over and over again. All of this has happened within the last ten days—between the 6th and 7th Temodal treatments. Along with the Temodal, she’s taking Zofran, Reglan, and Controloc for her stomach. Aside from those, her regular meds are just Levothyroxine, Xanax, and Phenobarbital, plus Kafetin if needed. We’ve also been giving her herbal vitamins and immune boosters. Since her daughter-in-law (my mother-in-law's daughter) handles all the doctor appointments and lab work while I handle the day-to-day care, I’ve suggested a few times that she ask about being prescribed Dexamethasone. However, both the oncologist and the neurosurgeon said there was no need for it. Watching her over these last four days, I feel like we’re back to how things were right before the surgery, and I'm terrified that the tumor might be growing. Her last MRI was on March 20th, and I am desperately hoping the results come back okay and that this is all just a side effect of the Temodal. I’ve been pulling my hair out for days, and none of us are sleeping because we're so worried. We’re doing everything we can to support her—massages, exercises, trying to keep things positive—but she just keeps sinking deeper. This constant vomiting is really starting to scare me; I can't help but wonder if it's the tumor itself rather than the Temodal.
Honestly, my heart goes out to everyone who has lost someone to these brutal diseases recently. I have a question for Angela Wright; I know you went through exactly what we’re navigating right now with my mother-in-law. She just finished her sixth round of Temodal today, and she’s been cleared for another six. It’s a relief for us, though I suppose it’s a heavy burden for her to carry. We are just praying that the Temodal is doing its job by keeping the tumor from growing too quickly. I guess I’m wondering if it’s somewhat standard practice with a GBM IV diagnosis to extend the treatment for another six doses after the initial six? For the time being, she seems to be handling the treatments relatively well; according to her oncologist, she’s actually responding quite favorably to the therapy. Even the MRI results were acceptable to both her and the neurosurgeon—even though the tumor has reappeared at the incision site, it appears to have slowed down, even if it is still there. 🙂 We aren't naive about the diagnosis or the prognosis. We are essentially living life one chemotherapy cycle at a time, one scan at a time. Many of you probably know exactly what I mean. We are trying everything to help her, from nutrition and various supplements to immune boosters and all sorts of other things. Unfortunately, here in Boston, there isn't any psychological counseling available specifically for patients and their families, which is honestly what we need most during times like this. I wish nothing but strength and peaceful days for the patients and their families alike.
steelpilot62 said:Hi everyone, unfortunately, here I am on this forum too. I’ve been lurking for quite a while, but it took me about five months to finally find the strength and the time to actually join in. My husband, 42 years old, was diagnosed with glioblastoma. Our nightly nightmare began five months ago, specifically on May 13th, 2014, when his glio was diagnosed. He absolutely had zero physical issues before that. From that moment on, my husband instantly became like a vegetable—in diapers and without any hope for survival. His condition actually improved slightly after stereotactic surgery, and for that, we are grateful to Professor Chudy at the New Hospital. The tumor had already become so "neglected" that surgery isn't even an option (it's about 12 cm, in the frontal lobe). He was rushed into radiation and Temodal therapy. Around mid-July, his condition started improving. He began communicating much better, stopped needing diapers, and is doing way better both physically and mentally, which is wonderful since they initially gave us a prognosis of maybe a month to live! We are currently in the first cycle of Temodal monotherapy, and I have to say he's tolerating everything well. However, new difficulties have surfaced; loss of vision and sudden, massive personality shifts. My husband is naturally a pretty quiet guy, but now he talks incessantly. He’s incredibly nervous and, honestly, it's mentally exhausting for me. I know it's all a consequence of the illness, but I really need your experiences and your strength through all of this. I’m hoping Angela Wright might reach out, because I literally devour her posts. Wishing you all the best! P.S. Since I'm new and still haven't quite figured out the forum tools, please don't mind me if I mess something up.
The worst period for our family was when my mother-in-law was diagnosed with the exact same tumor as your husband. She had surgery in February of this year, followed by radiation and chemo. She's about to start her third cycle of Temodal in a few days. Her condition is... well, it's okay. Not so terrible, thank God, but not exactly wonderful either. Physically, she might be holding up, but mentally she has totally "collapsed"—she's scattered, tearful, and self-pitying; that phobia of fear just won't let go. She's afraid when she's driving, afraid when she's alone, afraid of blood tests, afraid of therapy, afraid for us... It's destroying us. She takes Xanax regularly and has our full support; we try not to let anything negative get to her. I understand her completely; GBM is a brutal tumor, and she doesn't even know the true prognosis. When she collapses mentally, it affects all of us. We haven't been functioning normally for a year now, because from last September to February, we were dragging her from clinic to clinic, and everyone there just looked at us blankly saying, "She's fine." We live day by day. Some days are good, some are bad. I pray to God that these "good" days are more frequent. I sincerely hope your husband has better periods during this illness. Best wishes and good luck!
Amanda Miller69 said:That’s just how it goes, I guess. My mother was sent home to die too—terminal, immobile, incontinent, and barely lucid. Since there was no way I could manage her care on my own, I placed her in a hospice facility. She passed away there after a week, but at least she was looked after; she was clean, comfortable, and kept on pain medication. Even so, I felt absolutely terrible about it—the kind of guilt that eats at you for months afterward.
I suppose they’re just a necessary evil, unfortunately.🙂 Doctors. We can’t survive without them, yet when we're actually under their care, I guess we just end up feeling completely lost. Back when I was working at KPMG, we used to hear the same thing almost every single night. We’d be shuttling her back and forth between the ER and the main hospital, and they’d just give us this same old line: "Look, now that she's actually dying on us, we can't find a single bed in any clinic. Why don't you just find a placement somewhere else? You've been driving her back and forth like this for months anyway—just keep the cycle going: home, ER, hospital." When did we finally wrap things up at the neuropsychiatrist? She actually became completely lucid for a moment—she handed over a dementia diagnosis and recommended an immediate brain MRI. From September 2013 through January 2014, they were basically just discharging us from the hospital and sending us home. Then, in January, they’d put in the order for August... and now it's only June, and we're still waiting to get an MRI done. I guess that's just how it works. Thanks to "Stella," we finally wrapped up the imaging, and I should have the results in my hands within two days. As for the rest of the situation, well, I think everyone already knows how that goes. So many people have already navigated this, and plenty more are just beginning to deal with it. It’s honestly terrifying to even think about how many people have passed away simply because there wasn't an available bed in the hospital, or because someone just brushed it off. You know the type—people who tell you, "Oh, it's nothing, just take some Advil and your headache will go away," or "It’s probably just your blood pressure, don't worry about it." It’s infuriating how easily serious symptoms are dismissed as nothing at all.🙂 Glioblastoma is just one of those things where, even if we had found out back in September, the diagnosis would have ended up being exactly the same. I guess it doesn't matter. For many people—and honestly, for plenty of others too—there aren't even enough signs to warrant an early discovery, let alone a single day's difference.
Amanda Anderson87 said:so, how are things going on your end? and, well, Zachary Howard2, Michelle Kelly4, Lawrence Turner43, how are your favorites doing?
@juka 🙂 your last post really touched me. I'm sure your dad is so proud to have had a son like you by his side!
The main issue for us right now is the pain. After one cycle of Xeloda, Dad’s kidneys were in really bad shape for over a month, so he couldn't continue the treatment. That’s when the pain started, and he was prescribed Tramal. Up until then, he was taking Advil, which helped, but he had to stop because of his kidney issues.
Tramal turned out to be an absolute nightmare. Not only did the pain never fully subside, but it completely wrecked him. He started getting disoriented, lost control of his right hand, couldn't walk, and became aggressive. He didn't get out of bed for three days. Once his kidney levels stabilized, we went back to the Advil. Within a day, Dad seemed almost back to himself. He’s stronger, eating better, walking much better, regained control of his hand, and stopped feeling so lost. However, the Advil (600mg granules) that used to keep him pain-free for 10-12 hours just doesn't work nearly as well anymore.
In the meantime, he was put on a Durogesic patch—started at 25, then moved to 50. It works about as well as a Band-Aid for him. Zero effect.
We’ve also tried the "standard" painkillers like Tylenol, Analgin, Kafetin... they take the edge off a little bit, but he’s still hurting.
Does anyone have any ideas, since the doctors seem stumped? Maybe try Voltaren?
We’re heading to see the oncologist for a check-up today, so we’ll see what she thinks. We’re just hoping Dad might be able to resume some form of therapy soon if things keep improving like this.
Just taking it one day at a time....
Some friends of ours were buying this specific pain medication intended for terminal patients; I don't recall the exact name. I think it costs around 106 miles for a pack of 10 patches. They kept buying them until a relative mentioned you could actually get them for free through a palliative care center if you had the right order/diagnosis and a signature from your oncologist. Boston is such a strange city; everyone knows everything, yet nobody will tell you anything. 🙂 Those doctors and oncologists strike me as odd; it feels like they'd rather line the pockets of certain pharmacies—since those patches can only be bought at one specific place in town—rather than just referring people to the right associations or institutions. The man had surgery for a tumor (I'm not exactly sure what kind) and now has metastases in his bones, liver, and wherever else. He's suffering terribly, but the hospital won't admit him because they feel they've done their part, so they basically just sent him home to die.
Just wanted to jump in here and share our experience.🙂 My mother-in-law—I just call her Mom—is wrapping up her third week of radiation, and honestly, so far, she’s doing okay. She dealt with some nasty vomiting on the first day, but they put her on three pills morning and night to handle the stomach issues, and now she’s down to just taking them in the morning. She’s also on 140mg of Temodal every morning. I’ll be honest, I’m almost afraid to count how many sessions of radiation and chemo she actually has left. She’s scheduled for 42 radiation treatments in total. While she’s staying at the hospital, she’s mostly sticking to honey with ginger, royal jelly, and plenty of fresh fruits and veggies. We haven't introduced any artificial immune boosters or supplements; from what I’ve read, those can actually be pretty counterproductive during this kind of treatment. This weekend, we’re taking her out of the city to the mountains to visit her grandfather. She says being up there helps her relax and, in her own words, "mentally renews" her. My father-in-law does his best to keep her mind off the negative stuff. At the oncology ward, the care is "fine," and she has "fine" roommates, though being surrounded by other patients with those "terrible" illnesses definitely changes her perspective on her own situation. She mentioned that the waiting room for radiology is absolutely packed every single morning with people waiting for their turns.😢😢 I’ve really taken to heart the advice about living one day at a time and just thanking God for every single day we are given. I just really hope this current stability lasts, at least for the duration of her treatment. She’s constantly anxious, which is completely understandable, and she’s always overthinking everything—if she feels even a tiny bit of pain or a sudden twinge, her mind immediately jumps to the fear that the tumor has come back.😢