Posts by Kate Brooks2

Things are absolutely devastating here... the pain has seeped into his very bones, spreading through his arm and down his leg. His leg completely gave out on him this morning. The agony is just unbearable. Even with heavy-duty medication, the attacks hit him hard. He’s currently relying on 50 mg patches and morphine injections just to function. We’re trying to get him admitted back to the hospital today, but even that simple task has become an ordeal because we need to arrange specialized medical transport. He can only tolerate being lying down; anything else is sheer torture and he simply cannot endure it. I want to send strength to everyone else navigating this nightmare, because we are all fighting together to stay strong, but this whole situation is soul-crushing 😢

Angela Wright said:It’s likely being used as supportive therapy alongside chemo to help manage side effects. I was referring to a consistent daily dose that would have to be specifically prescribed by a physician.

He isn't undergoing chemotherapy or radiation anymore; he has transitioned entirely to palliative care. According to his doctor's specific instructions, he takes this medication as follows:
For the first five days: four doses of 4 tablets each
For the next five days: four doses of 2 tablets each
Then for another five days: two doses of 2 tablets each
After that period, he stops taking the medication altogether.
The issue is that he experiences significant pain immediately after taking this particular drug, and I am desperately trying to understand why that is happening.
Regarding his pain management, he initially tried Zaracet, which was completely useless, and after spending two days at the Mayo Clinic, he was switched to Naproxen and OxyContin drops, but even those haven't provided much relief. When we confront his doctor, he simply insists that the medication needs time to work, yet the pain persists and he can't sleep. He spends 98% of his time bedridden because the pain is just that unrelenting.

Angela Wright said:It’s absolutely vital to determine whether that tumor mass causing all this pressure can be surgically removed—even if it’s just partially—or if there is a course of palliative radiation available that could shrink the tumor down. You need to demand direct, decisive answers to these specific questions from his doctors!
Is my dad currently on Medrol or Dexamethasone? Those are corticosteroids that should help mitigate the edema caused by the tumor's growth. That is another crucial point to discuss with the medical team.

He is taking Dexamethasone, and he’s been on it for five days now. Thank you so much for asking these questions and for giving us the strength to keep going. <3

We’ve officially reached the stage where my father is strictly on pain management. He spends almost his entire day bedridden at home. While he can manage the pain while lying down thanks to his pills, the moment he tries to sit up or take even a few steps, he feels this crushing pressure in his chest area that makes it impossible to last more than a couple of minutes. I am genuinely at a loss for what our next move should be. 😢 He goes out of his way to put on a brave face for us, though we all know how much effort that takes. His appetite is decent enough, but it’s obviously limited because he rarely leaves the bed. To make matters worse, the doctors have been an absolute disaster; they refuse to provide any concrete information or real clarity. He was even hospitalized for two days, yet they didn't bother running a single meaningful test—he was basically just receiving the same treatment we could easily administer ourselves at home. We feel completely helpless, much like most of you navigating this brutal fight. No matter how much mental strength we thought we had prepared, our reserves are draining fast because watching him suffer like this while being unable to actually help is devastating.

I’m checking back in after being away for quite a while, though I don't have much positive news to share. Radiation therapy actually did help my father-in-law with his leg pain, but it completely wiped out his appetite, and he isn't nearly as active as he used to be. He spends most of his time just lying around, being incredibly lethargic. On top of that, he's dealing with chest pains that are constant; he can't function at all without painkillers. To make matters worse, the doctors sent him home and simply stopped discussing any kind of treatment plan or providing explanations during the consultations. Nobody even bothered to suggest a CT scan or routine blood work—absolutely nothing.
We are left feeling completely bewildered and are essentially trying to navigate this fight on our own now.
Does anyone have any insights or personal experiences regarding ExxonMobil?

We’ve just been hit with some devastating news 😢 My brother-in-law has been dealing with this nagging pain above his knee for quite a while now, and since he’s always had issues with his knees, everyone basically brushed it off. It wasn't until just a few days ago that a doctor finally decided it would be wise to run some imaging. Well, the scan revealed a tumor, and now they’re seriously suspecting that this is the source of everything, potentially even spreading to his lungs. For the moment, the medical team wants to avoid radiating his lungs and focus entirely on the leg instead. They believe a single round of radiation might get things under control, which would then allow them to pivot back to chemotherapy. This whole situation has completely knocked us sideways, but we have to keep fighting. He keeps insisting the pain in his leg isn't anything major, but we know better.
We also heard about a plant called Grviola that is supposedly helpful in cases like this, so I’m wondering if anyone here has any firsthand experience with it?
Thanks in advance

We just got back from the tumor board meeting, and the consensus was pretty clear: they aren't satisfied with how things are progressing this time around. They didn't offer much in the way of a detailed breakdown, but they have decided to pivot the treatment plan and want to attempt radiation therapy. Up until this point, my father-in-law has been strictly on a chemotherapy regimen. Honestly, he feels fine—he isn't reporting any pain or any significant issues at all. Those enlarged lymph nodes have been there since the very beginning, and their size hasn't really shifted much. We’ll just have to wait and see how this next phase unfolds. I will say, though, that following this latest update, he seems to be struggling a bit more mentally.
Thanks for the response, wanderingcobra76.

Hello everyone, I'm back again. As I mentioned in my previous post, the tumor was consistently shrinking on the earlier CT scans, and my husband was feeling absolutely wonderful.
Now, they have switched up his treatment plan to Taxol and Carboplatin.
We just received the first results after three cycles of this new regimen, and from what I can gather by looking at the dimensions, the tumor has actually grown.
I am going to transcribe the full report here, so if anyone is capable of explaining exactly what all of this means, I would be incredibly grateful.

CHEST CT

On follow-up non-contrast and post-contrast scans through the thoracic region, an extensive, partially necrotic, expansive solid mass is observed in the apical and posterior segments of the right upper lobe, continuous with the mediastinal and costal pleura. This mass features marginally visible irregular calcifications and shows progression compared to previous CT scans, measuring AP 78 x LL 85 x KK 97 mm, without evident rib erosion.

In the anterior segment of the right upper lobe and the right middle lobe, the previously described plate-like atelectasis persists.
Discrete band-like scarring is noted in the basal aspects of the right middle and lower lobes.
No pleural effusion is present.
Within the mediastinal fat, there are retrocaval, left paraaortic, and subcarinal lymph nodes measuring between 12mm and 17mm.
Right hilar pulmonary lymph nodes measure 13mm.
On scans through the abdominal region, the liver, gallbladder, spleen, adrenal glands, and kidneys appear normal.
The pancreas shows signs of initial fatty infiltration.
No pathologically enlarged lymph nodes are visible in the retroperitoneum.
No focal osteolytic lesions are seen on the visualized bone structures.

Thank you in advance!

I should also mention that the previous therapies (Chemotherapy with Ifosfamide and Epirubicin) were remarkably successful, crushing the tumor from its original size of 133mm x 127mm x 123mm down to 54mm x 80mm x 68mm. After starting this new type of therapy—which seems to be less aggressive—the tumor has increased over three months from those smaller dimensions to the 78mm x 85mm x 97mm mentioned above. We are heading to the tumor board consultation in a few days to see what they have to say, though they are always notoriously tight-lipped with their information.

Hello everyone, I’m back again. As I mentioned in my last post, the tumor was consistently shrinking on previous CT scans, and my father-in-law was feeling absolutely wonderful.
Now, they have switched his treatment protocol to Taxol and Carboplatin.
We just received the first results after three cycles of this new regimen, and from what I can see, based on the dimensions alone, the tumor has actually grown.😢
I am going to transcribe everything from the report here, so if anyone is capable of explaining exactly what this means, I would be incredibly grateful.

CHEST CT

On follow-up non-contrast and post-contrast scans through the thoracic region, an extensive, partially necrotic, expansive mass is observed in the apical and posterior segments of the right upper lobe, continuous with the mediastinal and costal pleura. This mass features marginal, irregularly shaped calcifications and shows progression compared to previous CT scans, measuring AP 78mm x LL 85mm x KK 97mm, with no evident rib erosion.

The previously described plate-like atelectasis is noted in the anterior segment of the right upper lobe and the right middle lobe.
Discrete band-like scarring is visible in the basal aspects of the right middle and lower lobes.
There is no evidence of pleural effusion.
Within the mediastinal fat, there are retrocaval, left para-aortic, and subcarinal lymph nodes measuring between 12mm and 17mm.
Right hilar pulmonary lymph nodes measure 13mm.
In the abdominal scans, the liver, gallbladder, spleen, adrenal glands, and kidneys appear normal.
The pancreas shows signs of early fatty infiltration.
No pathologically enlarged lymph nodes are visible in the retroperitoneum.
No focal osteolytic lesions are seen in the visualized bone structures.

Thank you in advance!

I should also point out that the previous treatments (Ifosfamide and Epirubicin chemo) were highly successful, crushing the tumor from its initial size of 133mm x 127mm x 123mm down to 54mm x 80mm x 68mm. Following this new type of therapy—which seems to be less aggressive—the tumor has expanded over three months from those smaller dimensions to the 78mm x 85mm x 97mm mentioned above. We are heading to the tumor board consultation in a few days to see what they have to say, though they are always notoriously tight-lipped.

We aren't backing down anymore; we’re speaking candidly about a subject that had us all in tears just nine months ago, but now we finally understand the reality of it. Both my father-in-law and I realize that if he simply surrenders to the diagnosis like he did at the very beginning, nothing will improve—but if he fights to move forward, progress is actually possible. When his lung sarcoma was first discovered, it was roughly the size of a handball. It remains a complete mystery to everyone how it managed to grow to such an enormous size without him feeling any symptoms at all. After the initial surgery, where they were only able to remove a tiny fraction of the mass, my father-in-law completely broke down. He was convinced the diagnosis was a death sentence and that there was nothing left to do but wait for the end. I refused to accept that, pulled myself together, and started researching relentlessly. After undergoing two rounds of therapy, he has finally returned to life. I sourced everything I could find that might strengthen his system and help him endure the incredibly aggressive treatment cycles. We moved from one therapy to the next, and steadily, my father-in-law stopped struggling with his blood counts, his weight, or his appetite, and he didn't suffer those nasty side effects anymore. Now, after every three cycles, he goes in for a CT scan, and every single time, the sarcoma has shrunk. In total, it is 9.5 cm smaller, and there are no metastases. This gives all of us the strength to keep pushing and proves beyond a doubt that we are doing the right things.

Honestly, it’s becoming emotionally draining to read through all these heavy, battle-worn posts every single time. Our own fight started just over a year ago, and my father-in-law has already undergone 11 rounds of chemotherapy. For those first nine sessions, he had to be hospitalized for five days straight to receive daily treatment, but now he only needs to go in for one day each month. Following his most recent CT scan, the news was nothing short of incredible—the sarcoma has shrunk again, and there are absolutely no metastases. He feels fantastic and is living a completely normal life, just like before. Since I work in animal rescue, I decided to bring home some little pups to care for until they find their forever homes, giving him a companion alongside his usual dog. He is genuinely thrilled to have something to look after again; there is something about those tiny, energetic creatures that just lifts the spirit. All in all, things are more than just good right now; it’s almost hard to believe how far we've come from those early days when he was nothing but skin and bones and was actually questioning whether he had the strength to keep fighting. Now, he’s reclaimed his old weight, his mobility, and most importantly, his smile. We are holding onto the hope that this positive trend continues for a very long time.
Sending strength and patience to everyone here; you all need it.

My deepest condolences, Rebeka—hang in there and stay strong 😢

It has officially been a year since we began our fight against this brutal disease.
Today, the results from the CT scan arrived, and once again, they are positive. The sarcoma has shrunk yet again—though this time we aren't measuring in centimeters, but in millimeters—and we are genuinely relieved to see things moving in the right direction with no signs of metastasis. Our patient doesn't even look like someone battling an illness; he feels incredible, and his lab results consistently come back excellent. He sticks strictly to a healthy diet and stays incredibly active. He remains cheerful, full of life, and absolutely refuses to be broken by this. We have hope for everything, and we are certainly not surrendering. Sending my best to all of you and wishing you strength in this battle.

I can outline exactly what we’ve been incorporating into our routine, which might offer some useful guidance for your situation as well.
- quail eggs
- royal jelly
- turkey oil and seeds
- Imuno Power
- brewer's yeast
- homemade juice made from apple, beet, carrot, and lemon (half a liter daily)
- Propolis
We have completely overhauled the entire diet. We stripped out all white bread, sugar, salt, and heavy fats.
Every single meal now centers around vegetables; essentially, everything boils down to strict, healthy nutrition.
That said, we didn't force our patient into this lifestyle against his will; instead, we engaged him in conversation and provided books that he chose to read himself, which eventually helped him realize that a change was necessary. So far, there hasn't been a single complaint or any whining about missing unhealthy foods. He likely recognizes the progress being made, which fuels his belief in the power of a clean diet. Good luck!

It’s been quite a while since I last checked in on this thread... and honestly, every single time I drop by and see more of us fighting this absolute evil alongside our loved ones, I am hit with this overwhelming wave of sadness.
Our patient just finished his ninth round of treatment today. Given how devastatingly everything started for us here, I have officially moved into the territory of believing in miracles. At the very beginning, just within the first month, he dropped 14 pounds and couldn't even touch food for days following that initial therapy. Now? He has gained all that weight back; he looks like a perfectly healthy man, and frankly, he carries himself like one too. His blood work following today's session is actually better than it was when he was admitted to the hospital five days ago. All his levels are looking excellent, with the exception of his hemoglobin being slightly below the normal range. After every single CT scan, we've received news that the tumor has shrunk and there are no metastases. To me, this whole situation feels like nothing short of a miracle... now we are waiting on the next CT, praying that at the very least it stays stable if it hasn't shrunk further. Just hang in there and keep fighting, because I know for a fact that miracles exist.

My deepest sympathies go out to everyone here who has lost someone in this fight.
Your stories truly touch my heart.
Things are going incredibly well on our end. My father-in-law handled his 7th cycle of chemotherapy exceptionally well. I honestly believe that after every successful CT scan showing a reduction in the tumor, he gains even more strength to keep pushing forward. He is being as disciplined as possible and refuses to let himself break. When I think back to the very beginning of this hell, I can hardly believe he’s the same man. Back then, he was just lying there in his room, refusing to eat, and he actually dropped 14 pounds, but now, everything is wonderful. He’s regained his weight and, more importantly, his will to live. He is the one in control of this situation, not the cancer.
Stay strong, everyone, and keep fighting with courage... cancer happens, but we believe it doesn't have to be the end.

Greetings everyone, especially 🙂 fadedtrucker5. I am genuinely relieved to hear that you’re doing well; please, keep pushing forward just as you have been. It has been quite some time since I last checked in here, but I am returning today bearing wonderful news. The tumor has shrunk by 5 cm—Yippeeeeeeeeeee! We are absolutely overjoyed that we've seen significant progress again after these three cycles. My father-in-law is feeling fantastic; he has actually gained 13 kg, which is a massive victory considering how much weight he lost at the start of this journey. His blood work looks excellent, and we are now fully prepared to move forward with the next three prescribed cycles to see where things lead. He truly feels like his old self again, and our whole family is walking on air. Please, do not give up hope, because there is always a way forward. Warmest regards.

Angela Wright said:It’s an incredibly individual process, frankly. Generally speaking, you follow the protocol and then wait to see if there’s any kind of response. A "response" is defined as either an improvement or at least a stabilization where the disease stops progressing. You keep pushing through treatments as long as viable options exist and the condition hasn't entered remission. Predicting when that happens, or how long the fight lasts, is nearly impossible. For many, life becomes a cycle of moving from one therapy to the next, or from one clinical trial to another, stretching out over years. It eventually just becomes a permanent fixture of your existence, much like how dialysis becomes a way of life for people whose kidneys have failed.

That’s exactly what I was anticipating, but I simply wanted someone with actual experience and a deeper understanding to confirm it for me. Thank you so much for such a quick reply.

We are currently approaching the end of the sixth chemotherapy cycle. Following the third round, they ran all the necessary tests, including CT scans and everything else, and we’ll be doing the exact same thing once this sixth cycle wraps up. After those first three treatments, the results were nothing short of fantastic—the tumor actually shrank by about 3cm. While the blood work always takes a hit immediately following a cycle, we consistently manage to get it back on track and essentially perfect before the next round begins.
I am genuinely curious about how many cycles one can actually undergo. Perhaps that sounds like a foolish question, but I truly have no idea how this entire process is supposed to unfold moving forward. Our patient feels incredible; he isn't experiencing any symptoms whatsoever, which honestly seems to catch even the doctors off guard sometimes. His treatment lasts five days, and during that time, he doesn't experience a single moment of weakness, loss of appetite, or nausea.
I really have to commend his discipline; his commitment to his diet is absolutely remarkable. We visit him constantly during those five days he spends at the hospital receiving therapy, and we see so many other patients there, yet not a single one of them follows their regimen even half as strictly as he does. Maybe that level of discipline is what keeps him strong or helps maintain his blood counts... I honestly don't know. If anyone out there can shed some light on how this path continues and just how far these treatments can be pushed, I would be deeply grateful. Thank you so much.

We throw everything and anything at the problem, and every single time we manage to overhaul their blood counts and bring them back toward perfection, even if the levels inevitably crash once the therapy concludes.
We have implemented a strict regimen involving two glasses of beet, carrot, apple, and lemon juice daily, supplemented by nettle tea, propolis, beta-glucan, nutritional yeast, flaxseed oil, hemp seed, flaxseeds, quail eggs, and various other small additions... but the most critical factor is that we have completely overhauled the entire diet and refuse to deviate from it even by a millimeter. We lean heavily on spinach, broccoli, and other leafy greens paired with fish, veal, and various organ meats—pork liver being the absolute best. For the most part, everything is boiled or sautéed in olive oil. As far as bread goes, we exclusively use homemade varieties made from buckwheat or barley flour. We have also significantly cut back on dairy, opting only for fresh, unpasteurized milk or yogurt. We are constantly preparing vegetable soups and incorporating plenty of fruit; specifically, they eat at least one citrus fruit every day—orange, lemon, grapefruit, or tangerine—because the body supposedly absorbs iron much more efficiently when combined with Vitamin C. I am curious to hear your thoughts on this approach, but for us, this method consistently succeeds in driving blood levels up to an excellent range. Best regards.