hodgkins lymphoma ? please read!?

Hi,I've posted a couple questions asking this but only got one good answer. I'm 17 years old and was recently diagnosed with cancer,hodgkins lymphoma. I'm not sure when I start abvd chemo because I still have to get a pet scan to find out what stage its in..i just had surgery yesterday to get a medaport put in.. My question is,what's your story? I'd really really love to hear it. Also your experience with the chemo and radiation if you've had that. My moms also trying to get me to go to a support group nut im not sure about that yet,has anyone else gone to one and did it help? Did you lose your hair or gain/lose weight? Please,itd mean alot to hear some others stories. Even it you haven't had it yourself but someone close to you has,let me know ! Details please,im worried even though I know this is very treatable. Thanks for your time

Connie

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  • Anonymous
    8 years ago
    Favorite Answer

    To write out my entire story with Hodgkin's Lymphoma would be challenging here considering that you're restricted to only using a limited number of words. My answer to your previous question was actually quite a bit more detailed (I'm a very wordy girl, haha) but I got an error message when I tried to submit it because it was too long. The omitted portions were really more about practical suggestions rather than personal anecdotes. I'll try to post them again below. I am fairly open about my experiences with HL now, but I still feel a tad bit vulnerable sharing all the intimate details about them on such a public forum as this one. This Y!A account is synced with my Facebook, and though I'm not embarrassed about anything with HL, I'm not entirely comfortable bearing raw emotions about it either. You can read more about my story here if you wish to create an account on the site:

    http://www.ihadcancer.com/SkylarkMelody

    I belonged to a support group for teens with cancer and blood diseases while I was in active treatment, and I highly recommend looking into joining one in your area. Having cancer in your teens can make you feel socially disconnected and fill you up with emotions that you aren't sure of where you can put, and a support group makes you feel less like a freak and allows you to vent in a setting where people will actually get what you're saying. At the hospital I'm treated at (UCLA in Los Angeles) there are social workers specially trained to work with oncology patients and their families, and they are a wonderful resource. Hopefully if you have one he or she can hook you up with a support group. If you can't find one in person, you could try an online group like GroupLoop. Your social worker can also help you to make decisions about your daily life, and can coordinate with your school if necessary.

    I wrote about my hair in the previous answer, so I won't babble on about it here. As far as chemo goes, ABVD is not as horrible as you'd expect. It's not exactly a pleasant experience, but it's not like being racked in the London Tower either. I was given mild sedatives prior to the first few treatments because I had a tremendous amount of anxiety about them, but once I became acclimated to the process I was less afraid of it. My one phobia in life was of needles, and it was to the extent that I didn't even like wearing earrings because it involved being poked, so yeah, I had to fight a beast inside my head in order to overcome the fear. Make sure you bring something to keep you occupied or entertained during the treatment since it can be quite long. At my center we had outlet plugs for laptops and free Wifi, so I always brought my laptop, iPhone, and iPad with me. My local libraries let you download e-books, so I always checked a few out for recreational reading. If you're going to be listening to music or watching a you need to make sure you have quality headphones that will prevent the sound from escaping and disturbing others. Some people like to sleep, so you have to be very mindful of the noise you generate. Also bring a pair of thick, comfortable socks to wear.

    Consider talking with your oncologist about supplemental treatments you can have in conjunction with (not as a replacement to) ABVD that could help to mitigate some of the side effects. UCLA has an exceptional East-West medical clinic, and if your hospital doesn't have one ask about a referral to a reputable OMD Oriental Medical Doctor in your town. I was very reluctant to try acupuncture because of my needle phobia, but I'm so grateful that I did because it was enormously beneficial. It drastically reduced the nausea, fatigue, depression, and "chemo brain" that I had after the first treatment. I rarely needed Zofran. Being as physically active as possible when I felt energetic enough helped me physically and mentally. Yoga is wonderful if you're not feeling up for something more boisterous.

    Radiation is fairly quick. You go in, get it done, and go. It doesn't hurt. However, after it's over you might wonder if you've become a sleepwalker and joined a Fight Club because you'll feel like you've been beat up. All my energy was knocked out of me for a while, but then I'd slowly rise back up. Some people had less severe reactions. It really depends on how extensive your radiation treatments are and how your body responds to them.

    Source(s): (Outta space ^^) As I wrote before, the only thing that was really shockingly painful was neupogen shots, but not everyone needs them. My neutrophil levels were extremely low, so at one point my dad was giving me four shots a day. (Your oncologist shows you a video for how to give yourself the shot or have your parents do it) It really did me me feel like all the bones in my body were being brutally smashed; it was indescribably awful. I tried Vicodin, but it made me too loopy and it didn't really reduce the pain enough to make it worthwhile. It sounds odd, but Claritin, the allergy medication, is sometimes recommended for those getting the neupogen shots to help alleviate the pain. I couldn't take it, though. I hope this is helpful. If you look on the right sidebar of my blog you'll see more resources: http://thesoultodare.blogspot.com/ ~ skylark : )
  • 8 years ago

    Skylark gave such a good answer. I know that the survival rate is very high. I know that the treatment is pretty yuk and takes a while and yes your hair falls out. But you get better, your energy levels return, your hair grows back and then it's back to whatever you were doing before your diagnosis. Join a support group and read up as much you can so you have no surprises. And people who have had an awful illness or accident always turn out to be better, nicer, kinder, more thankful and more grateful people for it. Many people have said that their cancer or other serious illness changed them for the better and they are actually (and weirdly) happy that they got to go through that experience and grow as a person. Wishing you all the best. And skylark has to get "best answer" ok!

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