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

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

  1. noeleaser

    noeleaser Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Sending some positive vibes your way..
     
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  2. Mecha

    Mecha Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    O' Captain, My Captain.. Dear Brother, and fellow Warrior. I will be praying for you Chris. Cancer is a journey. You're about to climb a giant mountain, but look around you. You're not alone. YOU CAN DO THIS and we're all here cheering you on and screaming at you to keep going.

    'Fearless' by Pink Floyd really helped lift me up when I'd get down. So did Miles Davis's Pangea CD. Drum N Bass did too, but that's a given!

    Im going to give it to you as real as I got it given to me.

    You need to stay positive, that is 1/2 of the fight. Im serious. Toys, tunes, friends. Whatever brings you joy surround yourself with it. hold onto that light brother.

    I had to endure 3 separate neck surgeries and then radiation for 6 weeks Mon-Fri. Granted it was 6 min a dose, but put a piece of raw bacon in your microwave and zap the same piece for 6 min every day for 6 weeks.. I had cisplatin Chemo for my HPV P16 head and neck cancer. I was lucky and only had to endure 2 bags, but the second one almost put me in the hospital. I have permanent tinnitus from the platinum, but im here.. I ended up getting a C Diff infection and had to take anti thrush meds because the antibiotics were so strong i could've gotten a yeast infection in my mouth. awesome huh? Ask them if you're looking at getting C Diff infection possibly and for them to be ready to get you the antibiotics. dont be shocked if they have to be kept cold and taste like shit. they will.

    Make sure you stay on top of your anti-nausea meds. Like, take your next pill 25 min before its due. time it if you have to. You'll stay ahead of it that way. If you miss a dose, get ready for painful vomiting. I'd stock up on some liquid motrin too. you will get some fevers from the chemo treatment most likely. liquid motrin works fast to cut the fevers. like in minutes. you might also experience mouth sores from the chemo. ask them what you can do to keep them under control. hopefully you wont have that side effect.

    Make sure they give you adequate pain control and dont be afraid to ask for it. Be a patient, patient. It goes a long way if you dont rage out on the people taking care of you. They will do their best to keep you comfortable, but dont be afraid to ask for more drugs. you'll need them. you're entitled to them as part of your care plan.

    if you know any marijuana smokers, you might want to start smoking here and there when you start the chemo regiment. the dank too, not that crap brick weed. the CBD's and THC in the leaf will help keep your appetite up. Plus, it will take the edge off, big time. Its way better than grabbing a drink and better for you than drinking. If you know any one who grows (or a friend who might), you can always seek out some weed butter. you can eat that by the spoon, put it on toast/bagel whatever.

    when you start chemo, this little voice in your head might try to tell you that you can eat later, sleep for a while. its a total mind fuck. the problem is, it will keep telling you that. dont listen to it. you need to make sure you keep your weight up as best you can. even if you dont feel like eating, make sure you do. BTW..food might start to taste differently. Hopefully it wont, not sure with the type of chemo you're getting. With my rad, my tastebuds died for a little while. food tasted like nothing. imagine it smelling great, but tasting like shit. total mind fuck.. hopefully that won't happen with your chemo. just trying to prepare you for the worst.

    get a blender if you dont have one. Buy some whey protein powder and mix that with some chocolate (or your flavor of choice) ice cream. Add a banana to it and some organic honey too. The MD and cancer team should hopefully give you access to free Ensure drinks. (or at least can get you a discount to get some) the chocolate ones are terrific. I would put one in my shakes too. Those will help keep your vitamin and mineral intake up. they are essential in repairing the damage the cells will take from the chemo. Gatorade frozen was a nice treat to drink. the electrolytes will help. you might get real tired of water, esp if your taste buds go south for a while.

    here if you need anything, and if you want my # pm me. i'll talk to you whenever you need. You will beat this and come out on the other side stronger than you went in.

    God bless and God speed.. we're all pulling for you.
     
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  3. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    @Mecha thanks for al lthe tips. My chemo is ABVD (initials of the drugs I don't feel like looking up lol) with an added Rituxan antibody. My chemo is going to be long- as in 6 hrs the first time and 4.5 hrs every two weeks after. Also going on till March at least.They are going to mitigate side effects by giving me liquid tylenol for one of them as well as anti nausea meds prior to chemo (plus send me home with some of them). I know to drink, and definitely eat beforehand. My friend in NYC gives me edibles once in awhile think I have two cubes left so that's 8 doses (I cut them into quarters-strong). Good tip! Didn't think about Ensure or beverages but those ideas sound great.

    I just want chemo to start working on these swollen lymph nodes as my neck and armpit are all swolen and even if I get some bad side effects fro mthe chemo at least I know it's going in the right direction. also really want this cough to stop, I already have lots of fevers and chills so....
     
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  4. ultrakaiju

    ultrakaiju Die-Cast Staff Member

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I think Tony summed it up very well (and better than I could have) already, Chris, so I will just say wishing you all the best. I know it is daunting and - rightfully - worrying, but you will get there. We are all pulling for you.
     
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  5. poysntixels

    poysntixels Post Pimp

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Good luck and keep your attitude up. You seem very well informed about your condition and it sounds as if you have a high likelihood of a good outcome. Fight the good fight and let us know how you're doing! Get well!
     
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  6. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Thanks guys! Yeah I'm going to kick this things ass and never look back. Got my flu shot as a precaution this morning (compromised immune system week after chemo). Just going to keep myself informed, tie up lots of loose ends in the next two weeks, and then just treat it like some awful job I have to do for 6 months lol. Everyone finds a way to deal with adversity and I'm no different.
     
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  7. Nate

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Lixx we wish you the best. Keep up the positive attitude it will help your body and mind. Speaking of mental health, I would suggest that you seek out a support group. It will help with coping with the chemo and stress of your diagnosis. Don't struggle with this alone.
     
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  8. chimply.kaiju

    chimply.kaiju Side Dealer

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Wow Chris, sorry to hear it. Stay strong buddy. You can kick the crap out of it and beat it!
     
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  9. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    So I haven't updated about my treatment in a long time (since I started) so I figured I'm bored might as well.

    Treatment and the hope of knocking this out is a bit of a mixed bag at this point. I had my 6 weeks straight of Rixtuan antibody back in Oct/Nov. I finished my 6th chemo (ABVD) on 12/29 (NYE sucked lol and I've had a bit of a cold since) and I'm due to have my 7th chemo of the 12 rounds this Friday 1/12. Chemo was delayed twice in Oct and Nov because of staph infections (if I never ever have to take another antibiotic again I'll be happy) so I'm not sure if this might have affected the outcome of my interim pet scan which the doctor was overconfident I believe in ordering. He ordered it after I had only had 4 chemos (and 2 of those were delayed like I said by a week). The interim pet scan only showed a 15-20% reduction in swollen lymph node size and virtually no change in SUV (cancer activity) which remains in the 30's.

    Good news, which they didn't seem to convey until I kept saying to them "Isn't that good?", is that it is gone from my spleen and appears to be gone from my spine. Problem with all these mixed signals in my onc (who is a good doc) started the results convo with "Nothing about your diagnosis or treatment has been normal!" and laughed. Then followed it with I might want you to see a lymphoma specialist down the road. Now I know the guy is trying to keep my spirits up but geez man...now I have abnormal hard case cancer planted in my head! Makes me think I've been misdiagnosed and he's over his head as a generalized (albeit 40 years experience) cancer guy. By all accounts R-ABVD wipes out my version of hodgkins NLPHL easily.

    I have this one lymph node in my neck that blows up a few times a day then shrinks. No one has any explanation for it. So it's concerning.

    I got a appointment to see a specialist at Jefferson in Philly finally after Christmas but it was cancelled the same day because they don't take my insurance (when my treatment team swore they did). I've called all over Philly (Fox Chase, Penn, etc) no one takes my version of Medicaid. I could easily switch to one that does BUT I worry if that will mess up my current chemo treatment. What if I switch and the new medicaid provider says "Oh pre -existing, we won't pay for your last few rounds of chemo or next interim pet scan!" Kind of a double-edged sword if there ever was one.

    Chemo is really wearing me down. I use to recover after 4-5 days now it's like 11 days of feeling like shit, 3 days feeling ok then back at it.

    I mean I totally didn't have high hopes because I didn't want to be disappointed on my last pet scan back in early Dec. But this next scan, probably in February I'm thinking is life or death! I need massive reduction in lymph nodes and cancer activity. Good news is so far I've done 3 going on 4 chemos without any delays.
     
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  10. Purple Bat

    Purple Bat Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Hey Chris, I know that we haven't always gotten along smoothly since I showed up here, but I hope that all goes well with your treatment. I've wanted to say something since you broke the news of your diagnosis, but I didn't want to either pry or be depressing.

    Please don't give up man!
     
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  11. EtR_Wolf

    EtR_Wolf Comment King

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Man have things changed since I've been away from these forums for a coups of years.. So sorry to hear that your dealing with this shit... The shrinking and disappearing sounds like good news. I understand that you don't want to get your hopes up too high, but also try not to get them too low. Stress and depression can also have a negative impact on your health, so this is where finding happy outlets is important. Family, friends, toys, nature, whatever floats your happy boat is good to surround yourself with.

    As far as the feeling bad part after chemo, do you take anything in addition to what the doctors give you? When my dad was going through treatments he was also taking a bunch of supplements to kind of five his body a boost. Off the top of my head, transfer factor multi-immune wad one of them. It's to help boost your immunity and such. While it's no miracle supplement, my dad did feel much better than others did after chemo. Now whether or not that was the supplements he took, I'm not sure, but it definitely was something that he did differently than others.

    My husband's mom had a type of lymphoma and also took frankincense oils on top of her treatments which she swears by (supposedly they are researching the effectiveness that frankincense has against cancer)..

    Anoter thing that I have researched a few years ago is CBD cannabis oil. This has not necessarily been tested by pharmaceutical companies, but I have read quite a bit of articles and posts by people who say that they have had super positive results with these oils.

    Everyone is different and not everyone wants to try other things (to be used in addition to standard treatment). I figured that I could put this info out there for you to read if you want. If you'd like more info on what I've mentioned, send me a message and I can send you a few links.

    I do wish you well and a full recovery/remission. Cancer sucks, you need to kick it in the arse and get it out of your body!
     
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  12. hellointerloper

    hellointerloper S7 Royalty

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I want to like your latest post because it's just been so long since we had a big update and it's good to know what's happening, but damn... I just can't.
    What in the holy hell is wrong with our healthcare system where you get denied vital care?! Jeez, insurance is a mess. I hope that you can get everything sorted out.

    Also, if money becomes an issue, don't hesitate to hit up the mods and see if a raffle/fundraiser can be arranged. I'd be more than willing to donate to help out. You've got friends here, and we don't want to lose you.
     
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  13. poysntixels

    poysntixels Post Pimp

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Keep slogging, it may not be major improvement, but it sounds like things are changing for you. Spouse has several very sick relatives and it all seems to be down to dogged persistence, patience, rest and a hell of a lot of chemistry. So please hang in there, we’d all love to see you stick around!
     
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  14. foto junkaay

    foto junkaay Addicted

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Oh Chris, I really hope that the treatments are working and that things are turning around. I can't imagine going to what you are but just know you aren't alone any any of this even if you get the feeling that you are. Thank you for continuing to keep us updated and sharing your story <3 positive vibes coming at you for whatever that is worth <3
     
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  15. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Thanks guys and gals! @Purple Bat I can't ever recall having issue with you? Was it a n00b hazing thing lol? If so sorry.

    @hellointerloper OMG is the healthcare industry sucky. This was my day yesterday. I called my insurance and they could not find an actual lymphoma specialist. They said they found 4 oncologists in my area. I said thanks I could have done that on your site and already have an oncologist! I called 3 cancer centers in Philly- Fox Chase etc. All want me to switch my insurance. I even called the place that cancelled my appointment to see if there was a cash option. Response: Oh not really that might be in the thousands if they decide to treat you during consultation! I'm like fuck I have the pathology slides and pet scan cds I just need a second set of eyes to check the diagnosis. It's so frustrating!

    Yeah trying to stay positive but I'm results oriented, and unfortunately I'm not Superman and can't x-ray into my own body every day to see progress. I feel this stupid neck lymph node going crazy all the time and I'm always thinking fuck me is this bad that it's doing that?

    Also when I feel like shit sometimes (unless its an obvious side effect from chemo) it's hard to tell if it's the Hodge, chemo, or just a infection/cold from chemo.
     
    Last edited: Jan 10, 2018
  16. Nuggets303420

    Nuggets303420 Toy Prince

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    When my friend was 8 his mom and dad had just reunited after a separation and their family was getting things back together. Until his dad got diagnosed. They didn't have money or insurance, or at least good insurance, so the doctor straight up told his mom either pay the money or say goodbye. Well, they had to say goodbye. It's one of the saddest things I have ever heard. The healthcare system is a joke. Other smaller countries have free health care. Cuba has some of the best in the world. Ya, big bad Cuba. This country needs to look in the mirror. The greed is off the charts. Pay or die. That's our system.... Anyway, you got this man. You have to stay positive. It's in the dark places where you have to find the light.
     
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  17. chimply.kaiju

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    You can pull through buddy and beat it! Keep strong Chris.
     
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  18. ungawa222

    ungawa222 Mini Boss

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Thinking of you, Chris. Thanks for the update. Wishing you the very best as you continue to move through this.
     
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  19. Alebrije

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    You are going to win this Chris!
    Wish you the best!
     
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  20. Michael Beverage

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Hang in there Chris, we are all rooting for you. Kick that cancer's ass. I think it's encouraging that it's gone from your spleen and spine. I'm sorry the fucking doctors and insurance companies are giving you the runaround.

    Yeah I echo Maddie, if you get to a point where a fundraiser would help your situation because of the shitty insurance industry, we are here and the community will rally. Let us know how we can help!
     
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  21. ultrakaiju

    ultrakaiju Die-Cast Staff Member

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Hey Chris, keep on beating the ever-lovin'-tar outta that shit. We are all pulling for you and know you can do it. Chemo is incredibly rough, but I agree with looking into other methods that might boost your general well-being, or just morale, for all those down downs after. The results from the scans sound positive, so that is some good news to focus on. I really hope you can find the specialist soon, and got all the fingers and toes crossed for you to be approaching the final treatment steps. As for medical care, well, with full recognition of certain people here perhaps taking issue, I think by and large the majority of common sense people here (and elsewhere) would agree it is such a broken system, and hopefully - as sad as this is - there is enough bureaucratic BS in the US to still stop certain cheetoheaded doofuses and their ilk from dismantling what little is available. It is well past time for a change, and there is certainly no shortage of alternative models elsewhere in the world to use as guides.

    :thumbsup: Thumbs up and hairy bear hugs, Chris.
     
  22. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    Yeah basically that's how this country is run. Greedy as fuck and it's baffling that we are one of the wealthiest nations and can't even give people affordable options. How people vote against their own interests in favor of rich fucktards dismantling every agency and system in place to make more money and can't even see it gives me fits. I'm fully confident cheetohead is going down and even if he squirms his way out he will be powerless by mid terms 2018.

    Having said that, the woman who originally made the appointment (and cancelled it because they did not accept my medicaid provider) called me back. I reached out to her and she had a wealth of info for me. She gave me the only other hospital in the area that accepts my insurance but did say she also spoke to someone about what would happen if I switch to the medicaid provider they accept. There is no denial based on pre-existing, so if my current doctors I receive treatment from accept this I'm going to switch. I checked the provider site (Keystone) and it looks like they do but I want to confirm before I swtich.
     
  23. EtR_Wolf

    EtR_Wolf Comment King

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    I would say triple check on both ends. Since cheetohead has been in office, many laws and policies have been and are continuing to change. Get it in writing if you can.

    And yeah, greed is a major problem - in the government, big corporations, insurance companies, big Pharma, (everywhere really)... I honestly do believe that there would be a lot more progress and/or cures out there if medicine would be not for profit. A majority of medications out there treat symptoms. If the underlying issue is still there, you will need to continuously purchase the medications to help alleviate the symptoms (it's a cash cow). If they cure you, you pay them one and done. There would be no continuous cash flow. This is a bad business model. This is why I wish they would take away the business part and be there for what medicine is originally supposed to be there for: helping/curing mankind (and animals).
     
  24. poysntixels

    poysntixels Post Pimp

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    ditto on the "get it in writing" part. Keep sluggin'!
     
  25. Lixx

    Lixx Mr. Grumpy™

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    So yeah I've been diagnosed with Hodgkin's Lymphoma...
    You guys are not going to believe this! So back in December they re- pet scanned me varied results. One thing for certain was that the lymph nodes that are the cancer centers were not decreasing that much in size. They were optimistic saying maybe it was the delays in treatment from infections.

    Me on the other hand put my science hat on and went to work. See NLPHL is a rare form of Hodgkins more closely related to Non Hodgkins. In fact NLPHL can transform in to DLBCL (Diffuse Large B-Cell Lymphoma- a form of Non Hodgkins with a less favorable outcome) years down the road. In fact many of the protein markers like CD20 are positive in both and markers like CD30 and CD15 are negative in both. I suspected since the chemo treatments for NLPHL which is Rituxan ABVD and DLBCL which is Rituxan CHOP are different and the ABVD I'm currently working on (did 8 out of 12 chemos) which are not shrinking the lymph nodes, that maybe I have DLBCL or a different lymphoma. Of course we saw some results in the beginning because they both use Rituxan the antibody.

    Now I've been on my soapbox since Christmas about this but have been getting the brush off and "hmmm this is abnormal maybe see a specialist". So my cough came back pretty bad. This was present before I started treatment in October because my chest lymph nodes were so swollen they pressed on my left lung. I thought today I might just have pneumonia and have been coughing up phlegm with blood but a chest x-ray proved otherwise, but guess what the doctor suddenly thinks? I'm right! They now are questioning pathology because these lymph nodes should have been gone by now and think either I have a resilient form of NLPHL requiring aggressive treatment or I was misdiagnosed like I said.

    So I'm going in tomorrow and they now want to do another pet scan and probably another biopsy that requires I go under to see what pathology says.

    I'm telling myself right now if pathology got this wrong I WILL find a way to sue the hospital. Going through 5 months of the wrong chemo thus weakening my body and lowering my chances of taking care of the actual cancer I have? I will have a field day in court. I hope I'm wrong but I'm often not.
     
    Last edited: Feb 8, 2018

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