Recently diagnosed with stage 3 Hodgkin's Lymphoma

Hey everyone I am 26 and was just diagnosed with Hodgkin's lymphoma last month. I'm already in the middle of my first round of ABVD chemo. I was hoping to find people going through or that have had treatment for Hodgkin's to talk to and see what I'm in for. The first treatment wasn't too bad, mostly just nausea and body aches, for about 4 days. I've lost my appetite lately and have dropped weight like crazy. I'd love to hear from any of you, even if you're being treated for something other than HL.

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  • sdvillasdvilla Community Member
    Hi Britt - I'm just a caregiver on the other side of chemo and a stem cell transplant. My hubby had acute lymphoblastic leukemia and went through several rounds of chemo, experimental drugs, radiation and a stem cell transplant back in 2012. The biggest advice I would give you is to eat. I know that's a lot easier said than done but we were told malnutrition from a loss of appetite is what can hurt people the most. So please try to eat something. The higher the calories the better. My hubby ate a lot of rotisserie chicken and macaroni and cheese. Also, lime popsicles really helped with his nausea for some reason. Best of luck. When you get through this it will all seem like a bad dream and you won't believe that it actually happened :)
  • Thank you so much for the advice. I've been eating a lot of chicken and as much veggies, fruits, and crabs as I can. I'll definitely keep the lime popsicles in mind. I hope your husband is doing well. Thank you again.
  • I just finished my fifth round r-epoc for NHL and each round affected my diet differently. One thing I could stomach as I lost my tastebuds and got naseaous earlier was Greek lemon rice chicken soup with two more fresh squeezed lemons. It gets tougher as the treatments go on and I would get the weirdest sideffects like the shakes. Claritin helps for the body aches so I take that towards the end of my cycle as my side effects start
  • I'll definitely have to keep the soup in mind. After my first treatment I didn't want to eat for about four days. I did manage to eat some plain chicken breasts and a couple different veggies though. Mostly bland stuff. I've seen several people talk about Claritin helping so I'll have to try that. Mostly I get aches in my back and left shoulder especially during work. Thank you for your input though. I hope your treatments are going well.
  • i try to stray strong mentally even as my body gets rekt. The soreness and aches tend to mess with your head because sometimes they last for days. But if I tell myself it's just my body riding along while the chemo and lymphoma battle it out, I can grind my way through it. Working is difficult because sometimes people don't kniw how painful it is. There's a light at the end of the tunnel though. You'll get through this, you're on the right track.
  • Working is definitely difficult. I've always been a keep busy kind of person and I've had to learn to slow down when my body starts hurting. I believe if we can mentally keep in check it'll help a lot. I've been ok most days, but this morning I noticed my hair is starting to fall out and that was rough. But I believe you're on the right track too! And I hope you're doing well.
  • I'm lucky because my managers and coworkers are pretty supportive and will tell me to go home if they think I'm pushing it. I wish the chemo didn't kill your hair follicles. It's so much easier to cope with having took go thru treatment without having to worry about how you look. I still haven't gotten used to it though so I'm always wearing at hat and scarf. The nurses give me compliments because I always manage to find matching colors. Lately I've been a fan of following other survivors like https://youtu.be/JG2W4ESvGTI on YouTube showing how they coped thru their cycles. Keep fighting and get as much support as you need from everyone close to you, they are all pulling for you to recover from this too.
  • It's so good to hear that your managers and coworkers are so supportive! Mine have been great as well, along with my family. Friday morning as I was getting ready to go in for chemo I was washing my hair and a clump was left in my hand. I have to say it's pretty devastating even when you know it's coming. I've been looking for some lightweight beanies to wear since summer is coming and I don't think I really want a wig. You seem like you are handling everything very well and I hope that continues for you!
  • Yeah, my doctor warned me that I would lose my hair after the second round.  I didn't think he was serious, but sure enough two days after I got out of the hospital I looked down at my hand and saw a big mat of hair. ugh. At that point, my heart just sank.  Damn, I thought, everything they say is going to happen, will happen. Now that I'm going to my sixth treatment they were right. The chemo brain, the dizziness, tingly fingers, everything. It's bearable though and I still consider myself lucky.  Soon enough It'll be the end of summer and you'll be finishing up your final treatment and getting your life back to normal. This is just a temporary time out in your life.  If you're looking for something lightweight just picked a bunch of these knit caps from Amazon now that it's gotten warmer:  http://www.amazon.com/Depot-700WH-WA9-Knit-Visor-Hat-6colors/dp/B014Q16CKU/ref=pd_sim_193_12?ie=UTF8&dpID=51iSAahWNEL&dpSrc=sims&preST=_AC_UL200_SR160%2C200_&refRID=141PQKEEAWCYE8AWXA38

    http://www.amazon.com/Casualbox-Beanie-Summer-Slouch-Unisex/dp/B00J49XCGW?ie=UTF8&psc=1&redirect=true&ref_=oh_aui_detailpage_o04_s00
  • Thank you so much for the links! And also for being so positive and uplifting!
  • Hey Britt, My name is Katelyn, I was diagnosed two and a half years ago when I was 23 (I'm 26 now). I went through ABVD chemotherapy and dealt with all the things that went along with it. Let me know if you have any questions, I love to share my experiences whenever I can. Keep fighting the good fight, Katelyn
  • Thank you! I feel like I've been getting through the treatments pretty well. Although I just finished my third one. I do have one question that maybe you could answer. Did you have mouth soreness, and if you did what was the best remedy for it? Thank you again for sharing your journey!
  • After the nulasta shot? For me it was avoiding acidic foods and eating soft food until it subsided. Pineapple juice DESTROYED my mouth the first time I drank it after the shot. My nurses told me to take Tylenol and Bendaryl to help, and it did a little for me, but not a complete eradication of the pain.

    This woman in a pharmacy told me to try this one Mexican soup that her mother had drank when she had cancer. I can't remember for the life of me what it's called, but it's in a yellow bag and you mix it with water. When my mouth hurt is was about the only thing I could eat without discomfort. If it pops into my head later I'll let you know.
  • Hey, My name is Stephenee. I was diagnosed in Feb of 2016 at age 20 with stage 3B Hodgkin's Lymphoma. My journey was probably a little different than yours, which is a good thing. My body was trying to hard to kill me and it almost succeeded. I dealt with my tumor that was 11 1/2 cm in size on my heart, then my heart filled up with fluid and had to have two surgeries on that. Than my first AVBD cancer treatment was emergency to try and stop the fluid. Which both nearly killed me. I was in the hospital for quite a long time at the beginning and had many surgeries and complications. The effect of chemo lasted about 4 days for me as well, and each treatment there was always something new or different you may think that you have the routine down but it always surprises you. Claritin will help you when you get Nupagen shots that boost your immune system. Nupagen shots remake your WBC's, it pulls from your bone marrow so that's why you are usually in the extreme amounts of pain and body aches. Did you have a port placed? Or a pick line? Those are going to be a life saver for your veins and it is much easier I feel like. I have a port, still do. I just finished with treatment 3 weeks ago, and next week I start radiation. Which I have no idea what to expect i'm very nervous about it. 
    One thing I thought was always helpful that the day I had chemo, I would make sure to eat something small and filling like a PB&J or soup, or a sandwhich just little things a couple hours before my chemo appointment. It seemed if I ate it too soon to chemo it would make me sick, definitely don't eat anything DURING chemo treatment. I was crazy enough to do that one time, and now I can no longer eat a hamburger which are my favorite. So just as long as you have something in your stomach a couple hours before, and then eat later after chemo if you can. It really does help, it helped me anyways. Also to keep your nutrients up I drank protein shakes. Which sometimes I couldn't stomach at all, and other times that's what kept me going. Drink lots of water also before treatments and try to stay on it after them. I know how hard it is when you are so sick and ill. 
    Also have you had a bone marrow biopsy? I'm sure you would have to have been diagnosed with stage 3. That's another thing that you have to not necessarily look forward to, but it will be in your future if you haven't had one already. 
    You will also get "chemo brain" is what I call it. It's like a fog cap and you forget things so easily and you misplace things as well. It's just one of those things you have to learn to deal with. But i'm hoping it comes back eventually. 
    Another thing, I had my first two treatments and then I shaved my head because I couldn't watch my long and beautiful hair fall out. It makes it easier in the end. I'm still waiting for mine to grow back. 
    Definitely make sure to wear masks when you are going out in public for the first few days after chemo if you even get the chance to go out, I know how hard it gets. Around anyone who is sick, or thinks they are sick. Wash your hands a lot and take hand sanitizer everywhere. Do your best to not touch door handles, and gas pumps and things like that. Cause anything out there you are so very susceptible to. That's when you will get hospitalized and that is never a good time.  
    I got mouth sourness once or twice, but it was never too bad. I know my doctor prescribed me this really strong numbing mouth wash that helped it. Ask your doctor if that's something you could look into? 
    I think the most annoying side effect of chemo for me was my eye sight would get blurry, and I could hardly see anything. 
    Most the time I was sick, I would still eat even if i threw it up later just because I knew I had tried. 
    Also, instead of wearing scarves which I did for the first couple months but I got sick of them. I started wearing wigs, they bring your self confidence up a ton. They suck, but they also make you feel like you suck less.
    Like I said I just finished my treatment. So I am still on the journey. I have radiation next week. And I am still waiting for my hair to grow back. I also have a lot of emotions hit me when I finally beat the damn cycle, It's like kinda what do I do now? I can't just go back to my normal life any longer but all I want so bad is to be normal again. My suggestion would be to see a counselor now, and continue it so they help you with the emotional roller coaster of all of this. We are young, and nobody this young should have to go through such tragic times. But the best thing to do is be positive, and take each day as a new day. My favorite saying is " I'm on a roller coaster that can only go up" which is actually from my favorite movie "The Fault in Our Stars."
    I hoped some of this helped. Just know you are not alone. And if you have any questions feel free to ask. Also just spend time with friends and family that make you laugh and get their support through it all.
  • Try marinol! Appetite inducing miracle drugfor me!!!
  • It's been a while since I've checked in on here. I finished chemo September 3rd. Then when they did the PET scan more lymph nodes showed up positive for cancer. I just had a biopsy 2 weeks ago, and now we're waiting on results and a plan.

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