So yeah I've been diagnosed with Hodgkin's Lymphoma...

Discussion in 'Whatever' started by Lixx, Aug 18, 2017.

  1. Brooklyn_Vinyl

    Brooklyn_Vinyl Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Jeeeeeeeesus. So if you were misdiagnosed what would the treatment regimen entail? You'd have the do the chemo again???
     
  2. Purple Bat

    Purple Bat Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I'm sorry @Lixx but your theory seems like it would be par for the course.

    My Mom actually got too much radiation when they were doing her breast cancer treatment. Not enough for radiation poisoning or anything, but it left a radiation burn that she might still be dealing with months later. I'll have to ask. I know that the medical professionals aren't going to be perfect, but come on!
     
  3. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    If it's another cancer like DLCBL you bet, I'd have to start all over! If it's an aggressive form of the one I originally was diagnosed with I'd have to get a more aggressive chemo/ stem cell transplant requiring in hospital stay. Either way I'm screwed. I'm just mad I did 8 chemos going back to the beginning of October which have literally devastated my body (I already have had to see a cardiologist because of a abnormality in my diastolic rate from chemo) and it's done nothing on the cancer front. Also cancer- in my case was stage 4, and yeah sure its lymphoma but you don't want to play around with time and treatment. Meaning 8 months have passed giving whatever it is (if misdiagnosed) a chance to become much worse.

    My thoughts exactly. I mean again hoping I'm wrong about this. But I can just see it now it was late the lab guy mixed up the results...Who the fuck knows.
     
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  4. hellointerloper

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Ugh, no matter how you look at this, it's a mess! I just hope that no matter what, that you have a fighting chance to beat its ass.
     
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  5. ungawa222

    ungawa222 Mini Boss

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Jesus fucking Christ. So sorry to read this, Chris. FUCK.
     
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  6. poysntixels

    poysntixels Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Most doctors seem to have taken extra courses in arrogance and cluelessness, sort of like airline pilots who can score drugs... hang in there!
     
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  7. bryce_r

    bryce_r Die-Cast

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Postive karma and thoughts regardless...
     
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  8. boon velvet

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I've got some stories that would make you seriously think about doing your own surgeries.

    I hope you're wrong too, Chris. I'm glad they're finally hearing you tho and you'll find out for sure soon. Best wishes , man.
     
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  9. ultrakaiju

    ultrakaiju Die-Cast Staff Member

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I am sorry to hear about these further developments, Chris. It is good that you can devote your own time to building the knowledge and trying to further your treatment. Doctors are only people after all, and no matter how good/on top of the latest thing they may be, they can't know everything. Not that I am suggesting you potentially didn't also have completely inept diagnoses, that is equally possible. The main thing is to be moving forward and keeping your eye on the closer you get to proper identification, the more accurate your treatment will be. Wishing you all the best man.
     
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  10. Mr. Humphreys

    Mr. Humphreys S7 Royalty

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Can't imagine how frustrating this must be Chris. My thoughts and prayers go with you. Don't be afraid to ask for a second and third opinion. I agree that the more research you do to try to figure out what's going on, the better equipped you are to discuss the diagnosis with the doctor(s), and the less scary things will be. An informed approach is the best strategy to help yourself and to really have a voice/determination in your course of treatment when communicating with all of those doctors. Any decent doctor wouldn't balk at questions and prolonged discussions. Too many people are afraid to speak up about what they're experiencing and how treatment will proceed. They forget it's their health and life at stake, so you can still be very frank and aggressive, as long as you communicate respectfully. I had to weed through a lot of doctors who cared for my Mom. It was worth it in the end though, she had really good doctors looking after her, who weren't afraid of detailed questions, discussing alternate treatments, taking the time to explain things, and being open to changing tactics and addressing concerns. Eat healthy, be sure to get your rest, try to keep to a regular routine. We're here for you!
     
  11. paulk

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Oh man, that's awful Chris. I'm so sorry. Wishing you the very best and hoping that now you will get correct treatment to fight this.
     
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  12. cyberann

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Stay Strong, Chris! Sending you a warm hug all the way from Rio!
     
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  13. chimply.kaiju

    chimply.kaiju Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    So sorry to hear that. As always stay strong buddy.
     
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  14. Mecha

    Mecha Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I bet your mom has a malpractice case on her hands. These people get paid big money to make sure the pt gets the correct dose. They go to school for years to make sure they know what they are doing and are precepted before being allowed to work - to make sure they run the equipment correctly and the pt is measured for the correct dose. They check and then double check b4 giving the dose.

    shit like this makes me so angry for you PB and Lixx. I was fortunate to be at UVA for my radiation and granted it was only 6 min a dose Mon-Fri. I received the correct dose, but the care team checked 3x's before they left the room and turned the machine on. the neck spasm pain i have to this day is horrible. it comes out of no where and I look like i am turning into Ben Grimm's The Thing when it happens. My neck muscles push out and get all block looking.

    It can last a few seconds, or over a minute. i also have permanent tinnitus from the chemo i had. Due to the platinum in the drug, it permanently courses through my blood stream. my ears ring and wont ever stop until i leave this earth.

    @Lixx you have been more than a patient, patient through this war. i would be pissed and would let them know you want to speak to the head of the oncology department. you want to find out how and who fucked this all up. file a complaint. I would even go as far as finding out the person who botched this and file a complaint with the state licensing board. fuck that. you have rights. you're not a number or a $ sign. you're a human. i think you should talk to a medical malpractice lawyer. see if you can find a pro bono one who will only get paid if you win. that is garbage they did this to you and now you get to crawl back through hell again on your knees. I realize you dont have a choice brother, but you have a VOICE. use that shit. go get a second opinion. fuck that and tell them to shove that bill up their ass. You deserve answers. Demand them.

    i was very fortunate i only needed 2 bags of cisplatin chemo. but the second one nearly destroyed me. i got a c diff infection and the antibiotic needed to fight it was a liquid med and had to be kept in the fridge. it tasted like pure death or what i can imagine it would taste like. i had to grab the sink counter to fight my gag reflex to even get the crap down, and i had to take it 4xs' a day.

    the chemo MD wanted to push a 3rd bag and my HPV cancer only called for 2 per my RAD MD. had Sheila not been there to say, "No, You tell ME why he needs a 3rd bag...Dr Read said he only had to do 2 for his cancer.." to which get ready... the MD goes, (after sitting back for 15 seconds to formulate an answer) "well, I just wanted to see if he could handle a 3rd bag.." bag # 3 would've put me in the hospital, guaranteed.

    i actually started to piss myself and then told her she could take the 3rd bag for me. she actually wanted to write a paper about me,

    Patient X...we gave him 3 bags of cisplatin, we should give others the same regiment for that type of HPV cancer, since he made it through it.

    the tinnitus came from bag # 2 and was so loud, i was nearly deaf for like 1 month. slowly it turned down, over time - but its still at a med level of noise.

    stay strong brother. we are all behind you.
     
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  15. Purple Bat

    Purple Bat Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Mecha Not to hijack Lixx's thread, but my folks were looking into their options about that. I don't want to push, but I do hope they take it to at least the Medical Board.

    I'm sorry to hear about your "side effects." Might I recommend that you try the Dale Snale Youtube Channel? Dale is an audio engineer and electronic musician who uploads lots of lengthy soundscapes in a variety of frequencies, and some people find listening to them can temporarily relieve the tinnitus. I know the type you have is not very likely to respond to sound therapy, but here's to hoping! :dam:
     
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  16. jojo the dog faced boy

    jojo the dog faced boy Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    FUCK! So sorry to hear about your trials and tribulations regarding diagnosis and treatments.
    Sending nothing but good thoughts and prayers your way.
    Stay strong!!
     
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  17. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Mecha Yeah I'm as pissed as you vocalize in your reply and them some for sure. One thing I have to say and this is sort of a silver lining in all of this: I'm unemployed. Thus I'm on medicaid. Trust me I don't want to be unemployed but when I got back to PA and was looking for work the federal mandate was still in effect so I had to sign up. Turns out it's a blessing in disguise because the most I've paid is small $3 amounts for tests and prescriptions. I can't imagine what this all would have cost normally.

    I switched medicaid insurance plans (March 1st goes into effect) because even with medicaid certain hospitals/doctors have their preference. Mine was accepted where I currently receive treatment but not many other places. Thankfully the one I switched to is accepted and my current oncology office and several specialists I need to see.

    My main thing now is to get to the bottom of killing whatever cancer I have regardless if it's a different one (misdiagnosis and my preferred outcome) or a crazy resillient strain of NLPHL. My next move is a new pet scan and biopsy of another node. Take those results and the new results to the lymphoma specialist in March. Since everything hinges on the results of another it's hard to make appointments until I have a surgery date. Once I get going on that and I know we're finally going in the right direction with a new treatment plan if it was misdiagnosis I'm contacting a lawyer. Count on it.

    What sucks is the wait now. My hodge symtoms are still omnipresent. Like every night I sweat through 2-3 t-shirts. Constantly washing sheets. Fevers, cough, basically no energy what so ever.
     
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  18. EtR_Wolf

    EtR_Wolf Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Lixx , hopefully whatever you have will be correctly diagnosed, treated properly, and that you'll be able to get rid of that cancer! Chemo is nothing you want to take for shits and giggles. Having you sit through all of those treatments that were incorrect is incredibly messed up! Do your best to treat your body during this waiting period so that you can handle the next course of treatments whatever they may be.

    @Mecha - Did you report that doctor who wanted to give you a 3rd bag? WTF..? And just to see if you could handle it so he could write a book? That MD should have his/her licence taken away. That's also incredibly messed up!

    The older I get, the less trust I seem to have in modern medicine... And stories like these definitely add to the reasoning.
     
  19. Mecha

    Mecha Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    No, I did one better. I requested a new Chemo MD (and got one) and also wrote a letter complaining about her level of care. They had me waiting over an hour and 30 min one day to get blood drawn.

    When you get chemo, they have to check your blood regularly, to make sure certain levels dont crash. I am a patient patient, but there wasnt a huge wait that day. They were not busy at all and took patient after patient before me. Even ones who came in well after I had been waiting around. Awesome huh? Before that appt, i had a dose of Rad. After you have one of those, you get really tired. (in addition to the insurmountable pain..)

    It was a Friday and i had a 2 hr ride home to enjoy the weekend, before going back Monday for that day's dose.

    Due to them not being on their game, I ended up leaving. They called an hour into my drive and I told them to go shove. Then I had to get blood drawn somewhere else outside of UVA health, and sent them the bill for the huge inconvenience.

    appreciate the word, I dont want to derail the love that Lixx needs with his battle.

    This is his thread.
     
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  20. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Mecha derail away I don't care. I think the topic of cancer care is almost as important as battling cancer. I've been lucky in regards that I've had the most pleasant staff doing blood draws, administering chemo etc. If I call with concerns they get back to me right away etc. Now if only they can get the right diagnosis lol.

    Man I'm really battling through this now. So I kept thinking I should start to feel better since I'm not doing chemo at the moment but I think the disease has kicked back in full throttle. Either that or these chemo drugs take months to leave you. Right now this is what I'm going through:

    - Mouth so dry that if I wake up in the middle of the night and try to drink it feels like someone poured sand down my throat.
    - Fatigue that limits me to seriously only about 1500-2000 steps a day.
    - Dry cough that makes me heave so hard I feel like I'm going to vomit.
    - Complete loss of appetite. I literally have to force myself to eat and even then it's hard.
    - Night sweats that soak through 2-3 t-shirts a night.

    I think 1 and 2 are chemo side effects and I'm tired because I'm now anemic and barely eating. 3,4,5 I think are from the cancer as I have swollen chest nodes that are pressing on a lung, cancer makes you lose your appetite, and night sweats are common.
     
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  21. Mecha

    Mecha Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Lixx,.. i know those feelings brother. try to remember, that pain is weakness leaving the body.

    Fight it man. Punch, kick and scream at that monster. Keep beating the fuck out of it.

    Hopefully, the chemo has not compromised your taste buds. I didnt want to eat either. the rad burned my tastebuds for months. Imagine smelling food and when you put it in your mouth. it tastes like nothing. it can literally drive you to the edge.

    With the chemo- It was like a little voice in my head was telling me..."its ok Tony, we'll eat later. you're not hungry right now." Sheila luckily kept kicking my ass and making me eat. literally, it was the chemo, or satan himself. i could hear it in my head..

    I hope you (or a friend has a blender they can let you use) This is where the shakes with a banana, whey protein powder, ice cream, and honey would really help out. You need to keep something in you. Your cells will relish in those nutrients, and it will help your WBCs.

    Shit, throw some honey nut cheerios or honey nut chex in there with it too and blend that up.

    the shakes saved my ass and it was the only thing I could get down at a certain point once the opiates stopped taking the pain away from my throat. skip bluberries though. i hear its not wise to eat those while on chemo. cant recall why, but they told me to stay away from them.

    if you arent up on the yoga breathing technique, youtube it. that will help and the main benefit is- it helps put more o2 in your bloodstream. you need that during this war. it will also help you find a calming point in meditation. i did it too much at one time and blacked out for a second. :lol: so be careful and dont let that happen to you.

    once i finished rad, I had a spit cup. i was so done with water, i thought i would hate it forever. i dont, but swishing it around and spitting it out helped. get some gatorade. buy a few small bottles and throw them in the freezer till it gets slushy. that will help with the throat issue a little.
     
  22. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Mecha brother I'm already on it. Yeah gatorade is my friend (I only like lemon lime original flavor). Hmmm I never knew you could freeze those! Sometimes it's rough because my taste buds are all kinds of fucked up. Water is weird- sometimes it tastes thick and metallic sometimes not. I chug a hell of a lot of it. I suck on Outshine Lime juice pops- makes my throat feel a little better. I finally broke down today and got some Ensure shakes (24). Haven't tried one yet but I hear good things.
     
  23. Mecha

    Mecha Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    ENSURE RULES!! Get the milk chocolate ones. all of their flavors are great, but the chocolate ones are the HEAT. Put the gatorade in a freezer safe bottle. *gotta watch those BPAs that are not freezable. P1 and P2 plastic bottles should not go in the freezer. Put that ish in a coffee mug. or a beer sized glass.

    Pound those Ensures. they are essential. put them in the blender too with the other fun stuff. shake them up really good before you open.

    yes, water was the same way for me. i was so tired of it. it tasted like sludge to me.

    yeah man, toss those gatorades in the freezer for 35-40 min and they should be gold. i wish i was closer to you.

    I'd bring some weed butter from my grower friends and stock you up on stuff.
     
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  24. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I’m writing this as I’ve just learned that my Lymphoma is terminal and there is nothing they can do. I love you guys and wanted to thank you for all of your support. They could not do anything to stop it. I do not have much time left. If there is anyone that wants to help my family sell my toys, please reach out to my sister Jen, jennetwery@comcast.net. Thanks and take care
     
  25. hellscrape

    hellscrape Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I'm so sorry to hear this. I never really knew you very well, but always appreciated what you had to say. I love you and wish you and your family strength and peace.
     

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