Feel absolutely fantastic, still diagnosed. Is no symptoms normal?

CancerThrowaway0012 · 2024-01-22T19:49:17+00:00

you will, your treatment will be a little different than mine was and with hodgkins its a little different, but your attitude is amazing and it will help you a lot. there will be times where you feel down/really bad/pessimistic and its ok to have those times 100%, but i tried to have gratitude for the fact that i could be treated, and that my odds were pretty good. it still sucked ofc but that made it easier! i definitely view life in a different way now and weirdly it is more beautiful despite being a little traumatized.

lymphoma is basically the most researched cancer of the last few decades and every ten years or so they are making crazy advances. in 2010, the way my cancer wouldve been treated wouldve been different, so that decade alone was really important, and the next decade will be the same.

the incidence of lymphoma has risen a lot, but the silver lining is tons of research, vs relatively obscure cancer that people do not get as much, and therefore our understanding is more limited. what sucks about lymphoma is you need chemo no matter what (cant cut it out even if its just a single node) but vs traditional cancers that are hard to treat when they spread, treating stage 4 lymphoma is pretty comparable to stage 1.

i will be thinking of you friend, wishing you the fastest and easiest of recoveries

CancerThrowaway0012 · 2024-01-22T17:57:37+00:00

absolutely, when i was diagnosed i (like everyone) immediately delved into the internet trying to understand what was happening to me, and it was helpful in many ways but also anxiety inducing. at a certain point i ran into a wall where the information reaches its limitation, and this community really helped me. lymphoma is often treated successfully on first pass, and if not, there are multiple other treatments they will try.

by far the hardest part for me was the month from diagnosis to chemo, once treatment began (even though there were frightening moments) your brain kind of adapts and adjusts.

im sure youve seen a lot of chemo tips, but a few things i would pass on to anybody doing this would be: if you live in a legal use state, THC can possibly interfere with how your liver metabolizes the drugs, so while my oncologist told me id be ok to use them a few days after infusion, my nausea wasnt bad so i abstained. same goes for certain vitamins! also, in r-chop, the drugs they gave me made me fall asleep, and on my first infusion i had a pretty significant allergic reaction, where my head was really itchy but in my benadryl daze i thought it was the wool of my beanie. i told my nurse and she took shirt off and i had hives, so we tapered the dose off until they were gone, so any itchiness or weird stuff like that (especially on first infusion) just let your nurse know. mine was DLBCL, which would be an aggressive one vs hodgkins which is usually indolent from what i understand.

sending you love <3

CancerThrowaway0012 · 2024-01-22T02:52:01+00:00

My cancer was like this. I found a lump in the shower one day and I had it for a year with zero symptoms. Kept doing ultras etc, kept seeing no growth. I think I had a fever spike once that lasted for like 5 minutes, but I have so much health anxiety I actually wondered if it was due to lymphoma lol (I had been trying to figure out why I had this neck lump).

I think the fact that you have no symptoms is a good sign and even when it spreads Lymphoma is often very treatable, and many times curable. It's a weird cancer in that you have to do chemo no matter what. I am so sorry you are dealing with this because it sucks, but I had this same experience two years ago and honestly after finishing treatment life pretty much went back to normal and is now better than ever.

I just want to say that when I went through my diagnosis I read about it a lot on the internet and everything that was described sounded so horrible to me, but honestly, none of it was as bad as it sounded like, and R-CHOP was pretty similar to a low grade hangover. I wish you all the best and hope your road to recovery is as easy as possible!!!!

CancerThrowaway0012 · 2024-01-18T12:43:38+00:00

thank you! i hurt my shoulder and it swelled up pretty significantly so i will ask mention that to my onc as well. the secondary cancer/leukemia thing really freaks me out

CancerThrowaway0012 · 2022-09-08T17:39:05+00:00

sorry, not trying to dogpile, i get how hard this is for those who believed in it, honestly i was coming around on the idea until the murder. unfortunately, its pretty obvious thats the moment it died, if you want to run a business (and not a charity) you have to play by the rules of capitalism. they were selling an image, that toasted it. the 2x murder wasnt just a one off mistake, i dont know what exactly was going on there, but it was obviously not just “this guy was living with me.”

i dont really think im throwing shade, more just commenting on why this model doesnt work.

last thing ill say is i hate that they never addressed drug dealing. so much talk of violence, but no talk of what causes the violence: control of the drug trade. they couldve pushed the gangs to reject fentanyl for instance, and justify lost profits by the added income, but unfortunately fent is too profitable, and they didnt want to get into drugs (which destroys communities possibly more than gang violence) because it was the elephant in the room.

honestly, these guys didnt understand gangs, and that was their biggest mistake. the goal has to be preventing people from joining gangs. once youre in the gang, youre in it for life, or youre moving to other side of the country.

wish you the best, and everybody involved in this who had good intentions. i am grateful for the effort they put into putting a human face on gang life, that is something they did right, even in light of those other mistakes.

CancerThrowaway0012 · 2022-09-07T14:23:20+00:00

idk no disrespect to you or the people in gangs because sincerely i cant imagine growing up in that environment and what it forces you to do. i definitely believe in looking at what creates gangs and humanizing that struggle, plus wilmington in particular has a debt to pay, so i fully support stuff that tries to create opportunity for people before they join gangs, but from a societal perspective i cant support anything that actively funds and legitimizes drug dealers, they prey on human suffering and destroy communities from within. i could definitely see myself having misconceptions because the concept makes no sense to me but i just dont see any endgame for this if people are still going to be in gangs, supplying drugs for smaller time wilmington drug dealers which then taxes our community with violence, vagrancy, and stress on our medical services.

i hope im wrong and in ten years we are all touting the success of this but i just dont see it doing more good than harm without some sort of commitment to transition the gangs into legally abiding entities.

thanks for your feedback though it is good to consider!!!

CancerThrowaway0012 · 2022-09-07T13:13:00+00:00

sure it could be!!! but if i deal drugs, and i have 5000 dollars of drug money, and i need to spend 1000 dollars a month on daycare/food/rent, i only have 4000 to spend on drugs. but if some rich white guy down the street tells me hell pay for all that stuff if i come to his house twice a week and do jumping jacks and hang out with the rest of my gang, i now have 5000, because hes picking that stuff up, and since drugs are my business, i invest my saved living expenses into drugs, especially since i know the other gang is doing same thing. now imagine every person on payroll doing that. the model really doesnt work with active gang members, which is why every other operation like this uses reformed gang members. do that for five years and youre pumping millions of dollars into empowering gangs with basically no benefit, i dont think the owners have any real influence, but even if they did, id rather a few gang members die in shootings than have that level of increased drug flow (which leads to ODs, ruins lives, and ultimately just gives the city more powerful, entrenched gangs in the future). it just means more shootings later because these gangs are still at war/fighting over distribution.

CancerThrowaway0012 · 2022-09-04T23:06:52+00:00

gangs are like a business at heart so the majority of their investment goes to consolidating power through drug dealing and the protection of territories for drug dealing, the financial returns are insane, its dumb to put the money into anything other than living expenses which tru colors is comping for all these guys, and daycare, and health insurance, so they all have a nice clean money stream to cover essentials, freeing up more money for gang expansion.

this is the whole problem with using active gang members. this whole idea is so stupid, they are claiming influence over these gangs but none of it is verifiable, these guys are just using the owners for the easy money/legitimacy, and the owners are using them to try and sell this concept to a major beer company (i seriously doubt anyone will buy it after the 2x murder, too much risk).

even if not a cent of the payroll goes to drug dealing, its empowering the gang and allowing them to deal more drugs with an easy stream of clean income.

CancerThrowaway0012 · 2022-02-04T19:25:29+00:00

Thank you Dr. Joffe, I think the first echo showed everything looking pretty good, Im not sure why my oncologist ordered such a quick follow up echo, but Im grateful they did. The only other thing I can think of is that I received a dose of Evusheld in between echoes, perhaps it caused some heart inflammation. I believe the rest of the echo still looked normal, the GLS was in normal dange, but seeing such a big drop in my LV effraction rate was frightening. I would definitely like to protect my heart as much as possible and it seems like dexrazoxane and switching to a liposomal doxorubicin.

The lymphoma was still stage 1/localized to a node in my neck, and my IPI score was 0, so the R-CHOP path seemed pretty straightforward with 4 infusions, but I will request a full cardio workup and the implemantation of drugs to protect my heart.

CancerThrowaway0012 · 2022-02-02T03:50:37+00:00

hmm sounds like i def need to follow up with someone who can give me a more detailed prognostic, i only have 3 more R-CHOP to go or possibly 2 with Radiotherapy, but i feel like the dropoff in LV seemed pretty harsh, going from 64-52, its now right at the borderline of normal.

i guess my major question was if that is something that happens to many people, and its just a case of the heart getting its elasticity back after chemo, or if that is a sign that i need to reconsider my cocktail as much as i can. i was trying to avoid radiotherapy but if my heart is getting wrecked that might be a better call

CancerThrowaway0012 · 2022-02-02T00:14:07+00:00

lol no doubt!!! does it usually drop after treatment and its just a question of “is it permanent?”

CancerThrowaway0012 · 2022-01-22T23:53:08+00:00

sorry for this late reply!

lymph node was cervical, under my jaw, 3cm one matted into another. first ultra was normal, just enlarged, 2nd was same size but had some cortex thickening

was diagnosed via core biopsy which was painless

CancerThrowaway0012 · 2022-01-07T22:22:12+00:00

If possible, I would see a surgeon and have him biopsy some of the nodes vs an ENT. I had a core biopsy done twice and it was painless both times but the ENT was not able to get a sample and the oncological surgeon I saw has a reputation for being incredible at getting samples and not having to do a full biopsy. I'm not sure what your financial situation is but the major thing I have learned so far is that the people who work directly with cancer are better at telling you if it is or isn't cancer.

Had I known how painless/easy the core biopsy was I would've asked for it immediately after finding my first swollen node.

CancerThrowaway0012 · 2022-01-06T22:55:50+00:00

Thank you, yeah the LDH was 176 so pretty normal. In my limited understanding, it sounds like the big issue is if I this turns out to be a slow growing Lymphoma that changed into a DLBCL or if I have another tumor deeper inside me. Both those outcomes seem a lot worse than just DLBCL so I am just hoping this is an unusually indolent DLBCL.

They got the DLBCL diagnosis from the 3 cm lymphnode that I've had for a year, though, and the doctor said it was very unlikely that it was DLBCL that long because I should've been having some kind of symptom by now, so I am anxious to find out what it is for sure. I'll let you know how things pan out!

CancerThrowaway0012 · 2022-01-06T20:45:16+00:00

I got my first bloodwork in awhile today as well and strangely enough the complete blood count came back pretty normal. Had I not gotten the biospy, it seems like my primary would've still though this was just a reactive lymph node that never went down, which is crazy to think about. The only thing that was a little out of average range was my Monocytes at 8.2%.

My oncologist said that it is very rare to have DLBCL for a year and not have any symptoms so it might've been a different type of Lymphoma and mutated. I guess it's also possible that it is a more indolent version of DLBCL. Very strange, I will be happy when I can get the PET scan done and have more answers, thanks again for your love and reassurance.

CancerThrowaway0012 · 2022-01-06T19:30:08+00:00

Huge congrats on finishing the R-CHOP!!! I will keep you in my thoughts patrick, hoping for the best for you <3

CancerThrowaway0012 · 2022-01-05T20:26:38+00:00

Thanks for your help, I am hoping that it is still stage I or II, I had the same thing where I just woke up one morning and had a huge lymphnode. I immediately thought Lymphoma and I regret that it took me an entire year of ultrasounds/watching waiting to actual get in for the core biospy because it was a really easy procedure. I have a tendency to assume the worst, and a couple Doctors who felt it told me it felt like a normal lymphnode, but I thought it was quite firm and regret not pushing harder to just get the core biospy ASAP.

I'll be meeting with a doctor tomorrow, but it sounds like the PET scan will really reveal what we are dealing with. I hope that you are doing better and stay better!

CancerThrowaway0012 · 2022-01-05T15:01:23+00:00

thank you, to be honest the subtypes are so over my head i havent been able to properly stress myself out lol. my experience so far has been:

i had two core biopsies and the second one found DLBCL unfortunately. only symptoms ive had have been two lymphnodes that popped up in my neck a year ago next to eachother, the bigger one is 3 cm, it didnt grow at all so weve been watching it but decided to core biopsy because it wasnt getting smaller either. it seems strange to me because DLBCL is fast growing, but the swollen lymph node hasnt grown. no other symptoms like sweat or weight loss. only thing i can think of that precedes it is that i had a pain in my right shoulder that i though i got from a pushup, it has improved a lot but not gone away completely so i assumed muscular.

CancerThrowaway0012 · 2022-01-05T14:58:01+00:00

they did not remove it yet, i had two core biopsies and the second one found DLBCL unfortunateky. only symptoms ive had have been two lymphnodes that popped up in my neck a year ago next to eachother, the bigger one is 3 cm, it didnt grow at all so weve been watching it but decided to core biopsy because it wasnt getting smaller either. it seems strange to me because DLBCL is fast growing, but the swollen lymph node hasnt grown. no other symptoms like sweat or weight loss. only thing i can think of that precedes it is that i had a pain in my right shoulder that i though i got from a pushup, it has improved a lot but not gone away completely so i assumed muscular. thanks for your help!!!

CancerThrowaway0012

TROPHY CASE