Father of three recently diagnosed with Non-Hodgkin Lymphoma

Hi guys,

I am a 25 year old male MMA enthusiast, I have three kids (Hayley who's 7, Michelle who's 7 and Ethan who's 3 with twins on the way) and I was recently diagnosed with Non-Hodgkin Lymphoma. I had noticed that I had started getting really tired, I'd sweat more than usual especially at home, I had swollen lymph nodes around my arm pit and neck, lots of itching & soreness, I had head aches, fever, shortness of breath (especially troublesome since I'm in good shape and having trouble catching my breath especially after using a training mask), pain in my bones especially in my shoulders, upper arms, ribs and chest, not really hungry and I really noticed that weight was coming off more than I wanted and more rapidly than I wanted especially since I was getting ready for an amateur fight.

I went to the doctor and they did their blood work about 6 weeks ago after I told them about all my troubling symptoms. I got a call a few days later telling me I needed to come into the office, I was then told in the office that I had Non-Hodgkin Lymphoma and that they thought I was stage 2 boardering on being stage 3. I was then referred to an oncologist who basically confirmed my general doctor's diagnosis. I was then booked for surgery to remove the affected lymph nodes. I think it's the first time I cried since I was a little kid.

My oncologist and I are now talking about getting a port and starting chemotherapy. I am so scared to start chemotherapy because its such an unknown. I've had a PICC line before because I had Lyme Disease when I was a teenager from a Boy Scout camping trip.

Can you tell me what your experience was like getting a port put in?
What can I expect getting it?
What was your first week like with it?
What's it like getting Chemo treatments?
Will I lose my hair getting these treatments? How long will I be bald? Will I regrow my hair before my treatments are over?
How did you break the news to your kids and how did they react?
Were you in the hospital for any of your treatments?

Thank you so much.

Comments

  • 4 Comments sorted by Votes Date Added
  • I got a port earlier this year finally... It's a relatively short easy procedure but I was anxious because I don't like needles/scapels and such - I let them know ahead of time I wanted to be as sedated as possible and they accommodated so I don't remember most of it except some pushing and pulling of my skin towards the end. It was sore for a few days but nothing too bad, and since has been very convenient for all my blood draws and hospital stays - they were able to start using the port right away.

    I can't comment on the specifics of your chemo treatments... And I have no kids. I have metastatic melanoma so mostly have received immunotherapy and some targeted therapy. I did get a week of chemo once and lost my hair, I can't remember specifically but seems like it started growing back fairly soon after my treatment.

    I have been hospitalized multiple times for treatments or other issues - when I am super sick I don't care much (or maybe that was the Ativan they gave me) and when I start feeling better the hospital is boring. They wake you up a fair amount for blood draws and vitals which is annoying but I always feel better having care a button push away when really needed. The majority of my treatments have been outpatient though, which is great.
  • Hi mmafan97! I'm sorry to hear about your diagnosis. But now is the time to fight like you have never fought before. Think of your lymphoma as the ugliest, smelliest, most disgusting opponent to step into the octagon and go kick it's ass!

    I was diagnosed with acute lymphoblastic leukemia many many years ago, so I cannot comment on your upcoming treatment. But you should go to the Leukemia and Lymphoma society website ( http://www.lls.org/ ) for answers. They have many resources, including local chapters and support groups. The help you get will likely be more specific to your lymphoma.

    I wish you the best! Keep fighting!!!
  • emkatemkat Community Member
    @andrewdcarlson great reference about the opponent and octagon!

    @mmafan97 I'm so sorry to hear about your diagnosis. I have stage 4 metastatic lung cancer and have a port myself. I assume you've had your port put in and now know it's a super quick and simple procedure that makes chemo life much easier! I just wanted to let you know what you could possibly encounter with your port in the future. Occasionally my port will ache or itch and there seems to be no rhyme or reason to it. Seatbelts can be annoying, possibly look into getting a cushion for your strap if it bothers you. People will stare, but not often, most people don't even notice. I've had my port for two years and I still pick clothing that hides it. And although I'm used to it, I still think I look part robot and that there's a piece of spaghetti, or a worm, stuck under my skin making it's way to my neck. So while it does get easier, and you get used to it over time, expect to have moments where you're just like, what the eff is this thing and why does it feel like ________ all of a sudden?? And even with that being said, I love my port, it has made my life so much easier and I truly hope it does the same for you! Go kick some cancer ass!!
  • Hi there! I dont have hodgkins but i do have leukemia which is grouped together as blood diseases. Im 24 about to turn 25.
    1. Getting a port in is not bad. I was awake and they used lidocaine to numb it up. It is just sore for a bit. Eventually it sinks in and not too noticeable.
    2. I've had a lot of chemo both inpatient and outpatient. It really isn't bad. The worst part for me was the nausea. It really hit me on the second day and like the following week after. You can eat sour candy like lemon heads. My hospital actually gives them out on the cancer floor bc it gets rid of the metallic taste.
    3. I lost my hair twice. For me it was after the first round of consolidation chemo and it took about 2 weeks after chemo for it to fall out in clumps. It’s honestly better to shave it when it starts falling out with a cool hair design bc it’s kinda sad when it’s constantly shedding everywhere. My hair started growing back 2 months after chemo.
    4. I don’t have kids but I wish I knew what to tell you!
    Also check out the leukemia lymphoma society I know they recently opened grants for treatment for specific types.
    Good luck with everything! Feel free to message for any questions about inpatient or outpatient chemo. I’m headed to a bone marrow transplant soon :)

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