Posts by placidbear10

I’ll go ahead and drop my lab results here as well—here are the values
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Values
Reference ranges
anti dsDNA 144
histone 154
antinuclear antibodies (ANA) positive
ANA titer 1.57 ratio : >1.20
C3 0.88
aCL IgM at 41, though it has gone as high as 88, has never dipped below 36, and usually sits above 70
aCL IgG occasionally positive
IgM 3.25
ASTO 378
Jo-1 15 (borderline, where >15 is positive)
Scl-70 negative, but on the last checkup it was 10 U/ml (limit: 10-15)

The following results are from Johns Hopkins Hospital (essentially the CDC)
Varicella Ig (chickenpox at age 8) 21 VE positive (pos. >11)
Rubella IgG (rubella at age 21) 184 IU/ml positive (pos. >11)
EBV VCA IgG 122 AU/ml positive (pos. >=20)
EBV EA IgG 24 positive (pos. >=20)
EBNA IgG 149 positive (pos. >=20)
CMV IgG 7.4 positive (pos. >0.4)
B. burgdorferi IgM 23 BBU/ml positive (pos. >11)
By the way, I tested negative for HIV; I've already had that checked.

Ever since 1990, my balance hasn't truly returned to normal; I deal with weakness in my left leg, which gets worse in both legs when it's cold out. I also get paresthesia in my hands, feet, and face, which then spreads to my entire limbs; sometimes my vision gets blurry for a moment, and quite often things look wavy to me—similar to how the air shimmers over hot asphalt on a summer day; straight lines, like door frames or window panes, seem to bend while I'm looking at them, along with any other straight edge.
It happens almost every day that I suddenly lose my balance for a second; it feels just like someone gave me a sudden shove or like I slipped on ice; less frequently, I have brief dizzy spells that only last a few seconds.
I should mention that this has been happening all this time; even when my X-rays for my spine—both cervical and others—came back completely clear; honestly, there were times when it felt even worse! My spine curved significantly in a very short period: within two years, yet my audiovestibulogram/ENG in 2004 was perfectly normal.

Sorry everyone, I know I've written a massive wall of text here... but it would be so incredibly helpful if anyone could find themselves in this pile of information.

I want to apologize in advance because I know I’m basically about to dump an entire book on you all here!
It honestly feels like I’m some sort of blend of Woodie Allen-Jeremija...

I’ve decided to upload all my lab results from back in 1990 just to get them out there. I’m doing this because I’m honestly exhausted by the way doctors handle checkups lately; it feels like nobody actually looks at the big picture anymore. Everyone just stays in their own little lane and ignores how everything connects. Take my last neurologist, for example—I saw her twice, and frankly, I’m never stepping foot in her office again while I hunt for a new specialist. She tried to tell me that my vision issues were nothing more than a simple need for a new prescription. When I asked her about my VEP results, she basically brushed me off. This was frustrating because I had just seen an ophthalmologist right before that appointment, and I already had a fresh prescription and new glasses. My vision has never been perfect, but even with my current glasses, I see things clearly enough. If it were just a matter of needing a better prescription, I wouldn't be having these specific issues. Besides, my last VEP test was somewhere around 2003 or 2004, which means we're looking at an eight-year gap. It’s entirely possible things have worsened since then. But she just insisted that wasn't possible, arguing that without a recent VEP report showing conduction issues or optic nerve lesions, there was nothing to worry about. According to her, it had zero impact on my sight. She even made this sweeping claim that when people have optic nerve damage, they actually end up seeing better—which isn't describing my experience at all, but it's certainly an interesting take.

Back in 1989, I caught the Rubella, and things went south pretty quickly when I actually lost consciousness during the infection. About eight months later, out of nowhere, my sense of balance just completely vanished, and it took nearly a full year to start feeling even remotely normal again. It wasn't just being dizzy; it felt like I was constantly walking on ice while people were shoving me around from every direction, all while having this bizarre sensation that I’d been stuffed into a sack and was being tossed about. My vision was a mess, too—everything looked like I was looking through a tunnel or using binoculars, where I could only focus on what was right in front of me. At the time, my VEP results came back fine, and all the tests we ran seemed okay, though I never had a lumbar puncture or an MRI performed, even though the neurophysiologist strongly suggested them because of my symptoms and the fact that my abdominal reflexes were missing—she actually suspected it might be MS. Eventually, they explained to me that it was most likely post-infectious encephalomyelitis, but it makes you wonder how you're even supposed to go back and diagnose something like that after the fact.

Here are the diagnoses:
The diagnosis is an undifferentiated systemic connective tissue disease, specifically listed under code M35.9.
Antiphospholipid syndrome is one of those conditions that really keeps you on your toes because it’s so much more than just a simple diagnosis. It essentially means your immune system is acting a bit erratically, producing these antibodies that can trigger blood clots or complications during pregnancy. Dealing with it requires a lot of patience and a very steady hand from your medical team, but once you understand how it affects your body, you can start to manage it with a lot more confidence.
The patient is presenting with mild left-sided spastic hemiparesis.
There’s some suspicion that we might be looking at post-infectious encephalomyelitis disseminata.
Trigeminal neuralgia (G50.0) is something that really demands your full attention if you're dealing with it.
Mitral valve prolapse (I34.1)
Mitral valve insufficiency (I34.0) can be quite a heavy diagnosis to process when you first hear it, but it essentially means that one of the valves in your heart isn't closing quite as tightly as it should. Because the valve doesn't seal perfectly, some of the blood leaks backward instead of being pumped forward through the heart, which can eventually put extra strain on your system if it isn't managed properly. It’s one of those things where doctors usually want to keep a very close eye on how much leakage is actually happening to decide if you just need regular monitoring or if more active intervention is necessary.
The diagnosis is symptomatic epilepsy, specifically G40.4, though that label has actually been on the record since 2000, back when all the EEGs were being performed.
Everything was going perfectly fine, and then out of nowhere, I get hit with a diagnosis like that.
L5 nerve root radiculopathy on the right side along with bilateral S1 involvement, coded as G54.4.
Peripheral neuropathy in the lower extremities.
I've been dealing with some pretty intense cervical and brachial syndrome along with lumbar issues, specifically classified under M51.5.

Here’s what the rest of my results look like:

The upper and middle abdominal reflexes have been symmetrically absent since 1990, according to the most recent findings:
The KTR looks pretty weak on the left side during the middle stages, and honestly, everyone else just seems to be missing in action.
Back in 1990, I was dealing with platelet hyperaggregation.
The biopsy results came back showing lymphocytic hyperplasia, which basically means reactive lymphadenopathy—just a fancy way of saying the lymph nodes are reacting to something.
The EMNG results came back, and they show some chronic nerve damage in the muscles of the left lower leg as well as both sides.
Well, that's just great. My motor conduction velocity for the left peroneal nerve came back lower than it should be, and the right side is looking pretty similar.
The results show a symmetrical pattern characterized by prolonged distal latencies on both sides, which strongly suggests the presence of polyneuropathy.
I’ve been noticing some changes in my legs lately, specifically related to my diagnosis of L5 left-sided foraminal radiculopathy and bilateral sacroiliac joint issues.
The test results for my hands and feet show that I've got some moderate chronic radial nerve damage.
The distribution is hitting both sides of the L5 myotome, though it's more pronounced on the right, and the S1 myotome is also showing up bilaterally, just a bit more mild.
It looks like there's some bilateral involvement at the C7/C8 levels, specifically showing moderate chronic neural lesions within the muscles of the feet, though it’s more pronounced on the right side.
The analysis shows that both lists indicate a milder level of involvement within the hand muscles.
The Schirmer test results came back at 1mm for both eyes.
VEP: One finding shows that during stimulation of both eyes, the P100 wave amplitude is right on the borderline, accompanied by some prolonged latency.
The results show some latency issues, specifically indicating conduction delays in both pathways.
The results from both tests show that the P100 waves are registering with normal latency, though the amplitudes are coming in a bit lower than we typically like to see.
The results show that things are significantly lower on the left side compared to the right. Based on what the report is saying, the primary takeaway here points toward a neuronal lesion.
The left side looks fine, but the right side is coming back borderline.
The latest test results came back, and they show some neuronal lesions on both sides of the pathway, which might lead to some conduction issues or even more significant disruptions.
I’ve been thinking quite a bit lately about how strange it is when you start noticing a narrowing of your peripheral vision, almost like you're looking through a tunnel. It’s one of those subtle things that creeps up on you until you realize your field of view just isn't as wide as it used to be. If you're experiencing this, I really can't stress enough how important it is to get it checked out by an eye specialist right away, because you definitely don't want to ignore those kinds of visual changes.
The fourth result shows that when we stimulate the left eye, there’s a low-amplitude P100 wave present, though the latencies themselves look perfectly normal.
It’s really just about those upper quadrant fibers where you see that extended latency, which is exactly what we need to focus on if we're looking to trigger some effective stimulation.
The EEG shows some pretty clear P100 waves with steady amplitudes, though the latencies are definitely running a bit long. That’s what the findings show.
He’s talking about how there's some interference during both runs, specifically noting that it pulls significantly more to the right, and also regarding...
The scan showed a neuronal lesion in the lateral ventricular pathway.
The lumbar puncture results came back, and looking at the CSF protein electrophoresis, everything seems to be functioning normally aside from those elevated levels.
My prealbumin levels came back at 7.3, which seems to be a bit on the low side relative to the normal range.
BAER results basically point toward some kind of dysfunction within the auditory nerve pathway.
And his little nuggets, too.
When I'm sitting in the AG position, I’ve noticed that my left arm tends to oscillate and just sort of give out.
I noticed that the plantar reflexes seem to be weakened on the left side.
I've been dealing with some pretty intense diarrhea on my left side lately.
There's some noticeable loss of pigment on the tip of my nose.
In the Romberg position, there's noticeable instability when leaning back or toward the left.
The Romberg test—where you stand with your feet wide apart while holding onto something for balance—is a pretty straightforward way to check things out.
I've been dealing with some pretty intense trigeminal neuralgia lately, specifically targeting the areas covered by the second and third branches of the nerve on my right side.
The patient is presenting with some mild left-sided weakness, specifically a slight hemiparesis on the left side along with some facial drooping caused by a central type of seventh cranial nerve palsy on the left, while also experiencing decreased sensation, or hypesthesia, on that same side.
It looks like there might be some foreign objects more prominently visible on the leg.
The brain MRI came back looking good, though they did note a small, minor lesion.
Looking back at my neck MRI from 2006, the results showed a slight curve to the left, which they called a discrete left-convex scoliosis, along with some dorsal osteophytosis.
There is a circular zone of increased signal intensity located within the right area.
The MRI results show hyperintensities in the C3 and Th1 vertebral bodies on the T2-weighted images.
When you're looking at those T1-weighted MRI scans, seeing areas that show up as hypointense—basically, those darker spots on the image—is something we have to pay close attention to. It essentially means there's less signal coming from those specific tissues compared to the surrounding area, which can be caused by all sorts of things ranging from simple fluid buildup to more complex structural changes.
The X-ray results for the lumbar spine are back, showing dextroconvex scoliosis, hyperlordosis, and partial sacralization.
It looks like I'm dealing with some pseudoarthrosis, along with some subchondral sclerosis and narrowing in the L5-S1 disc space.
The imaging shows some subchondral sclerosis along the articular surfaces, along with some osteophyte formation in that specific zone.
It looks like we’re dealing with some bone density loss of unknown origin, specifically localized around the joints.
The imaging results show some sclerosis in the facet joints and there's a suspicion of spondylolysis, which basically means there might be a small stress fracture in the vertebrae. It looks like the issues are concentrated in the lower lumbar region.
The results regarding the joints show some concerning markers, so I’d definitely suggest looking into clinical correlation and scheduling some follow-up diagnostic testing to get a clearer picture, though nothing has been officially set in motion just yet.
I mean, nobody even suggested that it was necessary; they told me the results were perfectly fine, so why worry?
migraines
enteritis
My thyroid gland appears to be enlarged, though all of my hormone levels came back completely normal.
The echocardiogram results came back, and it looks like there is some mild telesystolic prolapse of the posterior mitral valve leaflet, along with a trace amount of mitral regurgitation.
It looks like we're looking at sinus tachycardia here.
The heart shows rhythmic activity, though you might notice it speeding up whenever there's a change in body position, and there is a mesosystolic murmur detected in the second intercostal space.
Since having my stroke, I’ve been dealing with these bouts of tachycardia that just seem to kick in out of nowhere, most of the time without any warning at all.
Whenever I change positions or try doing something like a few squats, my heart rate just spikes straight past 200 beats per minute.
Kidney biopsy results came back showing bilateral hydronephrosis.
Dynamic renal scintigraphy performed while sitting up shows that the right kidney has dropped down quite a bit.
I’ve been looking at my entire data set and comparing it against that baseline study we discussed earlier.
When looking at the results in a lying position, the renogram curve for the right kidney indicates that...
It looks like there’s a bit of a delay in reaching the peak secretion levels, along with a slightly slower elimination process than what we typically expect to see.
When you start looking into the activities occurring within the renal pelvis and the collecting system, you really begin to see how much heavy lifting the kidneys are doing behind the scenes. It isn't just about simple filtration; there is a whole sequence of movements and pressure changes that ensure everything flows exactly where it needs to go. You have to account for the way the urine moves through those various channels, following the structural layout of the renal pelvis to make sure the entire process stays efficient and steady.
- low potassium levels
- EEG results have been inconsistent, swinging between normal readings and occasional abnormalities, such as those dysrhythmic patterns
appearing in the left temporoparietal region and subparietal areas
- I've dealt with all sorts of skin issues on my face, ranging from eczema and rosacea to fungal infections
- My creatinine clearance is running a bit low, sitting somewhere around the 68-72 range

Thank you all for such kind words...
I’ve been listening to "gde biti sad moj prijatel" by Drago Diklić lately... it's one of those songs people rarely stop to remember, but you really should listen to the lyrics; while Albinoni is absolutely beautiful, there is something about this track that feels so much warmer and hits much closer to the heart.

My father passed away early this morning at 5:50 a.m.

velvetgull9 Asks:
Hey everyone, hope you're all doing well.

Lately, I’ve found myself diving incredibly deep into everything there is to know about nutrition while going through chemotherapy, and honestly, the more I learn, the more I realize how much those little details actually matter. It turns out that what you put in your body during this time isn't just about staying full; it's about managing side effects and helping your system stay resilient, and I've picked up a few crucial insights along the way that I think are worth sharing.

Taking extra vitamins in their synthetic, "chemical" form might actually do more harm than good when you're undergoing treatment. You see, these medications are specifically designed to hunt down cells with damaged DNA to do their job, but when you flood your system with high doses of Vitamins A, C, and E, they essentially step in to "patch up" that DNA, which can end up sabotaging the drugs and making them far less effective.

When you find yourself dealing with neutropenia—that's when your neutrophil levels drop down too low—you really have to be careful about what you're putting in your body. You should steer clear of anything dairy-based, like yogurt, and stick strictly to cooked foods to stay safe.

The most important thing to remember here is to stay incredibly hydrated and make sure you're rinsing your mouth out with sage tea about 10 to 15 times throughout the day, just to clear away as many dead cells as possible and stop any issues from developing in your gums.

The oncology institute in Ljubljana has a massive amount of research and literature available online, which is actually quite helpful if you're looking for deep dives. maybe someone else might find this helpful.

That’s exactly right, and honestly, it isn't very smart or even particularly useful to go around popping all sorts of different vitamins and minerals in pill form. While sticking to a healthy diet is obviously great, taking things like antioxidants while you're undergoing radiation can actually be counterproductive because they end up protecting the cells you're actually trying to target, which prevents the radiotherapy from doing its job properly. Afterwards It sounds like finishing radiation therapy is a solid milestone to reach, and honestly, that’s exactly what the oncologist at the Tumor Clinic in NYC told us as well. My mom went through a lot back in 2002 when she was diagnosed with breast cancer, followed by thyroid cancer in 2003, which meant navigating surgery, chemo, radiation, Tamoxifen, and then Arimidex. On top of that, my aunt dealt with breast cancer about twenty years ago, going through the whole gauntlet of surgery, chemo, and radiation, only to face it again a few years back in her other breast—meaning another round of surgery, chemo, and radiation. Because of all this, focusing on healthy eating and maintaining a specific diet during chemo and radiation has been a way of life for our family for over two decades now. At this point, I feel like if I just stand in the kitchen long enough, a healthy meal might practically grow right out of the floorboards. 🙂
My biggest struggle right now is that my dad is incredibly stubborn, and he just refuses to listen to any advice I give him. Ever since he switched over to his new chemotherapy regimen, he’s been feeling absolutely miserable. He already dealt with chronically dry mucous membranes, but now, between the Docetaxel, Estramustine, Zomet, and Decortin, everything has gone from bad to worse. He constantly feels this sensation like there's something stuck in his throat, which makes swallowing anything a total chore, and it actually hurts when he tries to eat. He went through similar issues—actually, they were even more intense—right when he first started the Docetaxel. His oncologist prescribed some Tantum spray, but it didn't provide much relief at all. He tried gargling with a mixture of water and baking soda, but he couldn't stand the taste of salt, so he eventually stopped doing that too. Then there are the candies; I've been trying to find various throat lozenges or herbal drops to help. I usually pick up these specific soothing lozenges at Muller that are packed with botanical extracts because, unfortunately, the selection in our local grocery stores is pretty pathetic. They have some basic stuff at CVS, but nothing works for him except for options that aren't just overwhelming menthol. Honestly, his main issue now is with liquids; anything thin, like water, light juices, tea, or milk, seems to trigger his discomfort.
I was just reading up on how people dealing with dysphagia—which is the official medical term for swallowing difficulties—actually find it much easier to drink or eat thicker, pureed juices and foods. It turns out that thin liquids like watery soups or clear juices are usually way harder for them to swallow, and seeing him struggle with those lighter textures really confirmed that this is exactly what he's going through.
Marshmallow tea and a bit of honey can really go a long way when you're looking to protect your mucous membranes, since they work together to create that soothing, protective layer of mucus.

I’ve been doing some reading lately on the latest treatment options for metastatic prostate cancer, and honestly, looking at the price tags here in the States—though I suspect they aren't much different anywhere else—is pretty eye-opening:
- A monthly dose of Jevtana runs about $19,200, which adds up to a staggering $48,000 total over a cycle.
- Then there's Provenge, which costs $93,000 a month, though you only get three doses over a single month and then you're done, unlike the usual ongoing chemotherapy rounds.

So, let's put this to a vote—even if the cost of these drugs were to drop by, say, 50% down the road, how much time would it actually take for them to be added to any official drug formulary in America?
(Or more realistically, will the planet even still be spinning by the time that happens?)

Chloe Flores95 said:Dear placidbear10, I haven't checked my blood work yet, but I'll be facing that next week too... I hear people drink Endovita syrup when they go into chemo. For now, I'm just boosting my dad up with those Biota juices you can find at DM—specifically the one with beet, carrot, potato, and celery.

My dad was also drinking Brezov juice. We used to make it ourselves back in 2002 when Mom was battling breast cancer. I actually picked some up at DM just yesterday. I just got back from the oncologist; for now, he’s off therapy for one more week, though he is still taking Decortina, before moving on to Estracyt. I really have a feeling this doctor is fantastic (which is quite a change from that first oncologist we saw; that's a whole other story for a private conversation, and I don't want to sound like I'm badmouthing anyone—people often jump to blame doctors when things go wrong, but that isn't the case here. It’s just a rational question of why, if the blood work looks good and the metastases are receding, a patient is taken off therapy when people abroad continue receiving it for years... maybe the answer is money, or issues with Social Security or the Ministry of Health... but honestly, I wouldn't care about that part, I'd gladly pay those $267 a month myself if that were the issue, just please give me some indication or let me know!). Since Dad was vomiting yesterday and hasn't been able to eat anything (he's struggling even to take Torecan because Reglan isn't doing much, and while he'd prefer to take as few pills as possible, which is understandable, sometimes you just have to make things easier; it might even be kidney stones rather than the therapy, but we'll see next week), I went to discuss the future treatment plan, and I truly walked away with a positive impression. I asked her questions, I talked it through with her... and I finally felt like I was dealing with a real, decent human being in a white coat. So, for the moment, everything seems okay; she mentioned she'll review all his previous results and study them thoroughly. I have a very good feeling about her.
Let me know how your dad is doing; what kind of therapy is he on, and has he had any side effects?

Chloe Flores95 said:placidbear10 you’re doing so great, and honestly, it sounds like things might be looking up just a little bit... what can we even do? We just keep fighting. My dad is actually a huge fan of creamy soups, so I always tell him, thank God for the immersion blender. I actually went to see Mrs. Tonković yesterday afternoon—she’s a nutritionist and biochemist—and she gave me some dietary guidelines for my dad. Everything she suggested actually makes a lot of sense to me. Given the type of cancer my dad is dealing with—an adenocarcinoma of the stomach with liver metastases—bitter and alkaline foods are really important. She recommended plenty of nettle tea and oak bark tea, strictly forbidding fruit, avoiding green vegetables entirely, and having a tiny bit of baking soda dissolved in water after every meal. She shared a lot of other tips too, and I really liked them... we don't exactly have anything to lose. He starts chemo this Monday, and he's actually looking forward to it. The poor man is just so hopeful that someone will eventually be able to just go in and remove the tumor, but...

Thanks!
Well, you don't really have much of a choice other than to keep moving forward and find your own way to push through and endure.
I just pulled up my dad's recent blood work—CBC, metabolic panel, and everything else. What really bothers me is the way they handle patients at that one hospital up on the hill in NYC. Looking at his results (his new oncologist actually prescribed a new drug, Estracyt, but then had to pull him off it temporarily due to anemia and thrombocytopenia), I can see he's still anemic and his platelet count is still low. But what strikes me is that his levels were basically the same a few months ago; they've just fluctuated slightly, but they've always been low (platelets around 100-125), along with his RBC and hemoglobin. Not a single oncologist at that clinic even blinked at those numbers. Now, the new oncologist at the clinic was actually quite surprised by the latest labs (though I have no idea if she even looked at his old ones), but since she's staying on with him, I'm going to try to find out tomorrow how his previous results compared to today's. But, like I said, they operate on this system where oncologists rotate constantly. You don't even see your own doctor before treatment; instead, you see whoever happens to be working in the Chemotherapy Clinic that day. You end up meeting a whole parade of doctors—my dad has seen six different oncologists during his treatment, and this new lady is number seven. And because you aren't technically "their" patient, it's hard to actually have a real conversation. They just tell you to ask your primary oncologist, but your oncologist is either a) on vacation, b) out with the flu or gallstones, c) at a symposium, or d) somewhere else on the planet for professional development... so it's constant restarts. Essentially, you're left to fend for yourself—which I think we all know by now.
I tried searching for anyone in the US who is currently taking Estracyt, but I didn't have much luck. So, I'm going to look internationally, because I really want to hear about people's experiences with this specific medication. It's always helpful to hear what others have gone through.
It's actually estramustin (manufactured by Pliva under the name Estracyt).
As for friends... I might get a bit repetitive with quotes, but I love them (if anyone is interested, back in the '70s there was this wonderful "Great Epohin Encyclopedia of Aphorisms"—a brilliant little book with all the best bits in one place);
- A friend becomes a true friend only when our crisis ends.
But there's also this one that's quite funny:
- Friend, to cheer you up, let me tell you about my latest misfortune. 🙂

Well, when it comes down to it, no one can truly understand you unless they've lived through something similar. It isn't just about being understood; it's much more important that they accept what you're going through and how you feel, and that they simply stand by you, knowing you'd do the same for them. Sometimes, all you need is someone to help you find the strength to keep going, to relax, to laugh, or to just enjoy a moment. Everyone seems to think you have to talk about the illness constantly, but all the other topics in life still exist, and hey! Let's talk about those too.

I was browsing through some cancer advocacy websites recently, and I have to say, I was pretty disappointed by how lacking they are. They don't even have a dedicated forum, let alone any professional guidance from doctors or psychologists... honestly, nothing at all. It feels like such a missed opportunity because that kind of support is exactly what people need.

So, I wanted to ask everyone here: what have you or your loved ones used to help improve blood counts—specifically for dealing with anemia—and to get those platelet levels up? I came across some information suggesting that taking iron in the form of standard over-the-counter mineral supplements might not be the right move. The idea is that since this isn't a primary iron deficiency, but rather a side effect of the illness or the treatment itself, the iron levels in the body might actually look normal, yet the body just isn't able to utilize it effectively... or something along those lines. I'm really wondering if there's actually anything worth taking. I plan to ask my doctor about it tomorrow, of course. In the meantime, I'll stick to the basics like beets, carrots, and other plant-based options...

Thanks for all the support! (I know the grammar might be slightly off, but since this isn't a school exam, I’m going to take a little liberty—not everything needs to be perfect)

You all know how it goes.
I used to have a relatively large extended family—my mom's brothers and sisters—but none of them had children; they've all passed away now. We were incredibly close, though, talking about absolutely everything; they were like second parents to me.
I'm trying to nudge my dad to stay active and engaged without being too pushy or getting on his nerves. I tend to be a bit of a hyperactive type myself; over the last twenty years, as my aunt, uncle, and another aunt fell ill one after another, we did everything humanly possible to help them heal and feel better—including when Mom was battling cancer. I want to do the same now, but Dad is very much his own man. He isn't like my mom at all, and just as different as they were in their general approach to illness, he is here too. I suppose that makes me even more anxious because, unlike my late mother, he's quite guarded. He doesn't really have any theories to discuss regarding sickness or treatment, even if it's just a common virus.
Actually, things have taken a visible turn for the worse quite suddenly, just in the last few days, ever since he started his new chemotherapy drug, Estramustin. They've actually paused it until week two because of thrombocytopenia and anemia—which are classic side effects of chemo, a whole chapter unto themselves in American oncology; nobody really pays attention to them unless you advocate for yourself, unless you're dealing with nausea.
I know how this specific type of cancer progresses; honestly, anyone who has dealt with a loved one being sick could probably write a master's thesis on it 🙂. But still, all you really want is for that person's quality of life to be better and for them to suffer as little as possible.
Tonight, I'm planning to make a juice recipe I found online. It's beet, carrot, lemon, apple, and honey. I'm constantly cooking up piles of vegetables because he loves thick pureed soups but absolutely hates vegetables unless they're pureed... thank God for the immersion blender!
Tell me how you all are doing, what you're up to, and how you're coping with everything.
As for me, I've been walking like crazy (thankfully I love walking), and I'm checking out tons of books from the library. I've realized that crime novels are incredibly relaxing for me (even though my friend thinks they're trash because he's a bit of an intellectual snob and obsessed with Houellebecq—but whatever, back when things were more or less okay, I didn't mind, but now they just annoy me). So, right now, I'm reading "Ice Princess" and "The Woods" by Cobenov in parallel (though I think "Ice Princess" is totally overrated; Mankell is much better). And yesterday, I hit such a low point that I actually watched something I wouldn't normally watch in a million years: the X-Factor on Vox. It was just such a beautiful view of Till Broenner 🙂

What I’m about to write might come across as selfish, or maybe just like pure self-pity, but that’s honestly how it is.
I feel so incredibly frustrated and alone.
My dad is battling metastatic prostate cancer, and he’s right in the middle of switching up his treatment plan and everything else.
I can see how depressed he is, which isn't surprising at all since my mom passed away this past spring. Now it’s just the two of us left; most of his friends have passed away too, except for one... so yeah, I feel terribly lonely, worried, and honestly a little terrified (even though we went through the whole ordeal of surgery, radiation, and chemotherapy about ten years ago when Mom had her cancer and beat it). He’s also an incredibly stubborn man; whenever things go wrong, he just shuts down and refuses to talk. Right now, he’s in a phase where the medication is making his throat sore and swallowing difficult, he's dealing with nausea, he has no appetite, and he won't even take fluids (; and I just can't talk him into anything anymore. I mean, I'm looking for something to boost his immunity or just give him some strength, etc. The worst part is watching him weaken so much. I try to encourage him to drink some Brezov juice—not to fast, but just to sip on that juice, because it's what Mom used to drink; or maybe some Tahēebo tea... all those things Mom relied on when she was sick; but nothing works. One day he'll agree, then three days he won't, then five days he's willing, then five days he's not.
And I have this feeling like I've caught something contagious; even though I don't talk about this constantly, and truthfully, I don't really talk to anyone about it. When something was weighing on me and I tried to open up to a friend—well, honestly, it really hurt that my two so-called best friends didn't even show up to my mom's funeral, let alone be there for me back then—it felt like I had the plague. I know it’s not a fun topic, but what kind of damn friend are you if you can't tell them what you're afraid of?
So, I just feel so isolated.
Since it's just me and Dad, he's truly the only person I have; I don't have any brothers, sisters, cousins, or close family friends... and I really feel that void right now—I miss having a support system, that sense of having someone in this whole world who is truly mine. Does that sound ridiculous?

Is anyone else here currently taking estramustine (it’s listed under Estracyt by Plivin)?
My dad is dealing with metastatic prostate cancer, and after finishing nine cycles of docetaxel, his doctors have now prescribed him estramustine at a dosage of three 2mg tablets per day alongside Zomet
So, I was really hoping to connect with someone who is undergoing this exact treatment or something very similar.

Hey everyone, I could really use some help here!
I've been hunting for some high-grade, 96% pure ethyl alcohol—the kind that's reagent grade or food-safe—because I'm planning to make a cactus-based tincture.
The problem is, I can't seem to track it down anywhere. Every chemical supply shop I visit only carries industrial-grade stuff that isn't food-safe; even though the label says 96% ethanol, it’s loaded with additives that make it useless for what I'm doing. To make matters worse, local pharmacies and grocery stores aren't allowed to sell the high-proof stuff anymore, leaving me with nothing but 70% solutions that are mostly just distilled water.
Does anyone happen to know where I might be able to pick some up?
I'm based in New York City.

Hey everyone!
I have a question for you all: in my apartment building, I am almost certain that at least 51% of the owners have closed off their balconies to create extra rooms over the last 30 years without any permits whatsoever. By doing this, they’ve essentially increased their living space—and the heating costs associated with it—by about 10%. It is pretty easy to calculate that I have been paying significantly more than my fair share of the building's heating bill for years now; those of us who didn't expand our units are basically subsidizing their extra square footage!
Our local representatives haven't shown any interest in fixing this because some of them actually converted their own balconies into rooms. The last update I heard was from the utility company, stating that the homeowners association has to pay for a new property survey and submit the updated data before they can start billing based on the new square footage.
I was wondering if anyone here has dealt with something similar—what did you end up doing?
And don't even get me started on how this high-rise looks... it's an absolute eyesore. Beyond that, parts of the facade (the railings, the shutters, etc.) are one color, but the crews painting and replacing windows aren't sticking to the original palette anymore, making the whole building look like a Benetton advertisement. Honestly, I don't think that's even legal. If you own a single-family house, sure, paint it however you want; you could draw a bear or a rabbit on the side or roll out some DuPont paint for all I care. But this is a massive high-rise with 140 apartments designed by an architect, and there are actual copyright and aesthetic standards regarding the exterior. We don't have private yards here; everything is visible from the street. Most of these units are owned by investors, but shouldn't the residents be required—under some kind of law (I know I'd have to dig through a mountain of regulations, so I'm asking you first to save myself the trouble)—to get 51% or even 100% approval from the owners before changing the building's exterior?
On top of that, people are tearing down walls left and right, and it makes me wonder if anyone actually knows which walls are load-bearing and which are just partitions. Goodness knows how they are doing it since nobody seems to have oversight—private property is treated like a sacred cow, isn't it?—and I worry about the structural integrity of the entire building.
It's terrible; if you ever feel the urge to stare at pure tastelessness and chaos, just head south toward the Youth Bridge and look right toward Spud and Brooklyn, or check out the high-rises in Trenton... as my friend would say, it's just plain gross!
Is anyone else dealing with this?

Sophia Ortiz13 said:😕

I've been hunting everywhere for a 50g tube of Kalman ointment, but I'm having no luck at all. I already checked with Medical Intertrade and they're out, so I still need to give Walgreens a call and see what they say. Does anyone happen to know if it's available overseas, or maybe someone knows the actual Latin name for this stuff so I can search for it differently?

Bob, has anyone managed to track down some Kalman in the meantime? If you have, please let me know where you found it because I'm really trying to get my hands on some. It's apparently discontinued now, which is such a shame because it works wonders for skin irritation following chemotherapy.

Hi everyone!
My dad has been battling prostate cancer for ten years now; he’s gone through various medications, most recently Casodex. However, his PSA levels started climbing again last year, and they didn't actually start him on chemotherapy until it hit 60.
For the past six months, he’s been on a regimen of docetaxel ( Taxotere ) every three weeks, along with Zometa.
On top of everything else he's dealing with, one of the side effects from the docetaxel is these awful bruises all over his arms and legs. It honestly looks like someone has been hitting him; he’s covered in these red and purple patches that turn into sores if he even grazes them—sometimes they even open up without any contact at all, and they are incredibly slow to heal.
Since he’s been taking acetylsalicylic acid ( aspirin or Advil ) for years due to circulation issues (he has stents in his groin), both my dad and I have tried to have a serious conversation with his doctors about this.
But they just don't seem to care! They act like it’s totally normal. Look, we know it's a side effect, but seriously, what about the aspirin? Every reliable source—including a truly fantastic website about chemo, www.chemocare.com—states that you should consult a physician about every single side effect and that you shouldn't take aspirin without medical approval... but here in America, it feels like all that advice is just empty words. No one pays attention, and people are basically left to fend for themselves, forced to navigate this alone or essentially go out and get a medical degree on their own dime just to understand what's happening. Of course, I want to do everything I can for my father; but shouldn't his doctors be proactive about discussing side effects and necessary precautions?
So, I wanted to ask the group, has anyone else dealt with this exact issue?
His platelet count has been low the entire time (it has consistently hovered around 125), but the doctors insist that it's fine. I mean, I understand that chemotherapy is the treatment, but I really wouldn't want him to bleed out or end up in the hospital because of a hemorrhage! Right now, it's down to 105. His prothrombin time is 1.2.
I'm still feeling uncertain about whether that's okay; my late mother was on warfarin and her level had to be around 0.30, but I can't find any information on whether the same logic applies when someone is taking acetylsalicylic acid. Is a PT around 1 okay in that scenario?
Dad is constantly wrapped in gauze, bandages, and mesh, held together by layers of micropore tape and various patches... and we have to be so careful because his skin is so incredibly sensitive that removing a simple bandage can leave a wound or a bruise behind. We cycle through using mesh, then switching to sensitive DGP tapes from CVS to minimize damage... then there's Octenisept spray, Bepanthen, and panthenol ointment from CVS (which is cheaper than the brand-name Bepanthen $3.25!) ...

Plus, there's another side effect: a terrible cough. He has so much phlegm, and he has tried every syrup and tea under the sun; for five months straight, it's been endless syrups and marshmallow root tea, etc. But there isn't much difference; he'll feel slightly better for a moment, and then it all starts over again. Thankfully, his chest X-ray came back clear. But has anyone else experienced this specific symptom?

Okay, I realize I've rambled quite a bit, and I'm feeling a little embarrassed.

My heart goes out to those who don't have someone to help them or explain what might happen as a result of chemotherapy. It seems like the only way to cope is to have someone who is fluent in English and willing to dive deep into medical studies (oncology, obviously, but also everything else... because every side effect is treated as part of the chemo, yet requires different approaches—maybe you need an antibiotic, or an antifungal...). Honestly, please, if you can, go and help those who don't have family; even just printing out basic advice could make things so much easier for them.

Most people think the only side effects are nausea, vomiting, and hair loss! But that isn't the case for everyone!

They don't realize that some people deal with such severe throat pain that they can't eat anything except pureed food, and even that is a struggle because swallowing hurts so much. You end up having to rinse your mouth and throat every two hours with a baking soda or saline solution. Or applying Gelclair (which you can't theoretically get via prescription, even though it's meant to be a prescription item). Currently, he's using Glandosane spray...

And what all do we end up looking into regarding this topic? The Budwig protocol, Dr. Mark Sircus and his bicarbonate & molasses therapy, baking soda & maple syrup, Megamin, Breuss (not fasting, but teas and juices), alternative therapies... you all know how much information is out there and how much effort and time it takes to sift through it all to find sensible advice that isn't just total nonsense.

I really hope this offers a bit of help to someone out there, and I would honestly love to hear what you all think, or if you have any personal experiences or specific hurdles you’ve faced... and more importantly, how you managed to get through them.
Hi everyone!

P.S. I used to keep my own kombucha starter going, and we used to drink tea made from it all the time; however, I haven't had a batch in a few years now (I kind of let it slide, so it ended up flattening out); I was wondering if anyone in the Chicago area happens to have some and might be willing to gift me a small piece of it? It honestly makes my skin crawl seeing those people online trying to sell kombucha for $200-$100! It just feels so greedy and wrong to me... back when I had plenty, I always used to give it away for free! And goodness knows what kind of conditions those people are even keeping it in before they charge such ridiculous prices. It's clear they know that people facing serious illnesses will do absolutely anything to feel better, and it's heartbreaking to see others taking advantage of that vulnerability.

We just have to stay positive and keep our eyes on the future.

Hello World!
My dad is dealing with metastatic hormone-refractory prostate cancer; he’s actually been fighting prostate cancer for ten years now, and until recently, he was managing quite well on hormone therapy, but since metastases appeared in his bones, he’s moved onto a regimen of docetaxel (Taxotere) and Zometa.
I was wondering if anyone else here is going through a similar treatment plan, and specifically, if anyone deals with hematomas or bruising as a side effect of the chemo—the kind where even a minor bump, like accidentally hitting the corner of a table, leaves these little sores that seem to take forever to heal. His platelet count has dropped a bit and stays consistently between 125 and 135, which the doctors tell us is perfectly fine, and they say the bruising and slow-healing skin issues are just standard consequences of chemotherapy, but so far, I haven't run into anyone else describing this exact problem. On top of that, after his chemo sessions, his throat gets so painful that he can really only manage soft, pureed foods, so we rely on Nestlé Health Science and Abbott Nutrition as supplements during those few days when he can't eat much. I have to say, the website www.chemocare.com has been a real lifeline for me lately. It’s packed with information about chemotherapy and offers answers to just about every question you could have—the kind of stuff your doctors might not mention, either because they’re too overwhelmed with patients or because they’re still one of those types who don't appreciate being questioned.
I’ve spent so much time reading up on prostate cancer, and I would truly love to connect with other people who—unfortunately—are walking this same path, both those facing the illness and those of us supporting them as family members.
Hang in there, everyone, and stay strong! Don't let the skeptics get to you—those people who mock any sort of alternative approach—because I believe a person should utilize every resource available to them alongside conventional medicine (though, of course, you have to use common sense to filter out the nonsense). A doctor I know once told me, "I don't care what my patients do, as long as it isn't hurting them." I also remember reading an interview in a journal where a few women spoke about their journeys with curing breast cancer; one woman mentioned that she was willing to try absolutely anything, and if someone suggested that digging a hole in her backyard might help, she’d probably go right out and do it.
People who ridicule those who are sick and trying to find a way to heal are honestly just cruel. While it’s important to be critical of complementary medicine, there is absolutely nothing wrong with finding a solid program that might support traditional treatments.
After all, Ben Gurion once said, "Anyone who doesn't believe in miracles isn't a realist."

Best to everyone, Gigi

I am honestly so relieved to have stumbled upon this thread. Around here, when someone gets a cancer diagnosis, the family is basically left to navigate the massive wave of information and support all on their own. It drives me absolutely crazy because even though our doctors are incredibly talented, they rarely take the time to address the actual side effects of chemotherapy—unless we're talking about the obvious stuff like hair loss or nausea. I feel less like a family member and more like a full-time researcher; I spend so much time digging through medical sites online that I half expect to receive a medical degree any day now. As for my situation, my father is dealing with metastatic hormone-refractory prostate cancer. He’s been fighting prostate cancer for ten years now and was managed on hormone therapy, but unfortunately, metastases have recently appeared, so he's starting chemotherapy with docetaxel and Zomet.
I wanted to see if anyone else out there is on this specific treatment—or any type of chemo for that matter—who is experiencing spontaneous bruising or hematomas on their arms and legs? These bruises just seem to appear out of nowhere, and even the slightest touch can cause them, sometimes even leading to small sores. I know many side effects are common, but I haven't heard anyone in the US mention this particular one before.
Best, placidbear10

Hey everyone, I'm Giga, and I was wondering if anyone here knows anything about chronic orthostatic intolerance—it’s one of those diagnoses that the American medical establishment and our doctors seemingly refuse to acknowledge exists.
The symptoms include losing your balance, nausea, vomiting, and tachycardia whenever I move around, which basically means any kind of movement can trigger it; sometimes just bending over is enough to make me feel sick to my stomach and start vomiting.
Around here, doctors will only recognize standard orthostatic intolerance, but let me tell you, that isn't the same thing at all!
Does anyone else out there dealing with a similar diagnosis or struggling with these exact same issues, where your doctor hasn't actually given you a definitive answer yet and instead keeps dragging you through endless tests, none of which seem to specifically address COI?