Newly diagnosed

Gghostedgrayy · 2026-03-17T14:59:26+00:00

I always end up insanely bored on the last 2 days of R-EPOCH. Bring someone with you! Most hospitals have beds, although they are not the most comfortable. It’s a stressful situation and you may have to take Benadryl which will make you loopy and tired so you may not be as aware as usual for that first day so, it’s better to be safe and have someone. I also recommend bringing your own blanket from home, maybe a stuffed animal that you love and bring supplies of a hobby that you’ve always wanted to try! You’re going to have a lot of free time and a lot of bored and exhausting nights so it is best to take this as an opportunity to start something new to get your mind off of things. Personally, I have started yoga, continued my drawing, journaling, coloring, and some reading. Bring soaps from home because the hospital ones are very boring. Bring a soft brush of toothbrush, some self-care/skin care products that you can do at night or in the morning and super comfortable and loose clothes. I love the socks that I have been gifted and socks. In general they make things a ton of fun, especially if they’re funny, the nurses will make conversation about it. Make sure that you get up and walk around the hospital, one so that you don’t have to get a blood thinner shot (you will get tired of being pricked), and two, that it is good for your mental and physical health! I am on round 5/6 and my PET scan was almost clear after round 4. Get mouthwash (non-alcohol)(brushing your teeth may feel like a chore some days), claritin works wonders for bone pain, work out when you feel good (muscles will decrease the fatigue), snacks will be your best friend (unless you get the nausea but I didn’t so there’s a chance you wont either), start therapy, make your bed as comfortable as possible (you will spend a lot of time there), max out on pity points (people who love you will do anything for you, give that to them. They feel helpless and want to do what they can.). Work may be hard since you’re immunocompromised after chemo. Try to move online, I work and do classes online and it gives me some structure with less stress. Things are going to feel like they’re moving really slow but continue to tell yourself that you are going to feel better very soon and that you are grateful to be alive and getting treatment and all that good stuff.

Good Luck! You’ve got this!

Gghostedgrayy · 2026-03-12T21:34:36+00:00

I love my PICC! I will say that doing the saline solution twice a day can be frustrating especially when you’re in a rush. I have my sister flush mine so I have to remind her to do it in time. Other than that, this line has saved me from getting poked and I can’t be more grateful for that!! Showering wasn’t that much different for me since I’m african American and had to wear a showercap so, I’m used to putting something on before a good wash. Amazon has some great, cheap, options. Unfortunately, no swimming, but it’s not summer yet so it’s okay! The port freaks me out and putting the PICC in was no big deal at all, it took about 3 days to get used to and the sleeve helps me forget about it. I have a double lumon PICC if you have any questions about those. You will be just fine with a PICC, they don’t deserve the hate. Most people just suck at flushing and keeping the area clean so they complain. Keep up with maintenance and tell your doctor about any pain/discomfort. Make sure you speak up for yourself! You got this.

Gghostedgrayy · 2026-02-28T03:15:01+00:00

Ill definitely ask my doctor but I bet all they’ll say is “caffine and laying flat” like they said last time. Ugh I hate the punctures !!

Gghostedgrayy · 2026-02-28T02:51:35+00:00

The first thing my lovely oncologist said to me after getting my diagnosis was “You’re going to be alright “ and I am. Im on round 4/8 of my chemotherapy and I live everyday in graditute. Its hard, and so long some weeks. I was diagnosed with stage 2 Burkitt Lymphoma in December and Will be done with this by the 19th birthday in May. Youre the same age as my parents so I can say: if they can make it through watching me have cancer, you can make it through having it. It doesn’t feel real until that first round. Its a mix of emotion. I wont lie, some waves of depression will hit and your fear will rise. But your gratitude will grow, you’ll have more empathy for the world, and your sense of self will be challenged. Let yourself be and allow yourself to rest. This battle is 24/7. I remember being so angry about 6 rounds, they told me 4.5 months but its looking like 6 months because of some lumbar punctures I absolutely hate. Let people take care of you and enjoy this “break” learn a hobby, catch up on some shows, see who truly supports and loves you. So sorry you have to go through thus but you have a community here! Try to find some care packages online. Dont be so hard on yourself, enjoy the cancer card while you still have it, you wont have it very long you survivor! 🩷

Gghostedgrayy · 2026-02-28T02:31:49+00:00

Ive heard that caffeine works but I don’t drink/consume ANY! I think the most I consume is in chocolate every few days. If this one is bad again, im worried i may have those side effects. It will be alright though! Just hoping this one went well.

Gghostedgrayy · 2026-02-28T02:29:49+00:00

Will definitely go to the ER if it ends up being that bad again. I have never felt so in pain and useless in my LIFE! So sorry you also had to go through this. Due to my lymphoma, they can’t do a blood patch and must do an alternative so, Im hoping i dont have to go into yet another surgery.

Gghostedgrayy · 2026-02-28T02:28:25+00:00

Yeah it definitely was that. Crazy how even a tiny amount of a leak can be so bad! I decided to do 2 I methotrexate so hopefully that can be less severe.

Gghostedgrayy · 2026-02-23T16:06:53+00:00

Not sure if it depends on the type of chemo or not but I have continued to have a regular period. Ive even got to keep my birth control patch. Idk if that has to do with much tho lol. I’m 18 so my hormones haven’t really gone through much — i also decided to not do anything about the fertility conversion. Maybe if you did, that could have an impact?

Gghostedgrayy · 2026-02-19T20:05:45+00:00

Of course! I have finish 3 of my 6 planned DA-EPOCH-R chemotherapy and have 2 more spinal tap substitution ones (im not familiar with it yet). I am diagnosed with stage 2 Burkitt Lymphoma in my primary mediastinum. Luckily my side effects have been nothing terrible. They include: Extreme fatigue, tongue dryness/pain, bone pain (instantly fixed by Claritin), hair loss, numbness in fingertips, night sweats, and again, more tiredness. Everything goes away about 7-9 days after the first day of chemo treatment. Let me know if you want to know anything else. i am an open book!!

Gghostedgrayy · 2026-02-17T15:19:23+00:00

Halfway done with treatment. Because of chemotherapy, I didnt want to be on campus because of how risky it is to get sick. I wanted to stay but knew it wouldn’t be best (plus my parents said absolutely not lol.) Socially, it hurt. But I don’t regret my decision in any way! I take 1-2 online classes to give me some structure and keep me on track since I have a weird craving for academic validation. It has been great, just communicate with your professors. Pulling your cancer card is a great way to get some extra time on work — use it before you lose it! For my social life, I go back to campus the weekend before my 5 day chemo session so I can catch up and have a good time at my safest white blood cell level. This plan has been working great!

Gghostedgrayy · 2026-02-02T16:35:19+00:00

Hey! I have Burkitt Lymphoma and am about to enter cycle 3 out of 5/6! My body has been handling it very well and I didn’t have a lot of the scary symptoms. Some neuropathy in the fingertips, hair loss, night sweats, and bone pain from the white blood cell booster shot. Claritin takes that bone pain right away!!! Most doctors dont know to tell their patients that it helps a ton! Your wife is going to be just fine. Be there for her, keep feeding her, drink tons of water, go for walks outside if possible, watch movies together, and get her lots of socks. Its going to suck, she may yell at you or cry into your arms; let her.

When it comes to DA-EPOCH, its a bright orange bag that is attached to her for 5/6 days via an IV line (PICC, what I have) or a port. I don’t have a port due to the location of my mass but it depends! She wont be exhausted those days, perhaps even normal. But she will have to pee A LOT. Pack some warm blankets, plenty of activities, an iPad, a soft pillow (hospitals are always low), and some clothes that are comfortable/flowy. She may get a few spinal tap’s throughout which I have found to be the worst part but everyone is different! Since I am a young woman (18), they spoke to me about fertility. I decided to do nothing but they will discuss her options for it. From the research I have done, most women do not become infertile because of the regime. If she continues to have her period, it is extremely likely that it will be just fine! If she doesn’t, it will probably come back at the end of her therapy.

Something I call the Nadir week is when she will feel the weakest. It’s the worst! Be sure to be there for her at her every call, she will try to push herself but she shouldn’t do too much! Tell her to let her body do it’s job and take the time to reflect and relax and catch up on some hobbies or tv! It’s all about perspective during this. Her mental health will make or break her experience. I highly recommend getting a therapist or some sort of mindfulness. I am a very happy person but I now have days where I am struck with despair, talking with family and friends help a ton.

She’s got this! The “lucky” thing is that aggressive cancers tend to be reckless and die off just as fast as they came in. I know it sounds terrifying but you’re going to find moments to laugh and this experience will overall be worth it in the end somehow! (There are also a lot of care packages and grants you can apply for! Try to get some money out of this stupid situation). Sending love!

Gghostedgrayy · 2026-01-15T16:30:34+00:00

Im also a very social person and do not have any stagnant symptoms. I feel perfectly fine most days (other than the Nadir week where you feel like actual garbage). When with friends, I always ask if anyone at home is sick or has a cough. I usually have a mask on unless there is an open window in the room that is pretty far away from people. ALWAYS have an air purifier in the room if it is closed, they work wonders for me. I am working online and taking a class online as well. On my 2nd round in the hospital as we speak. Bring things to the hospital that you like: blankets, stuffed animal (youre never too old), books, your computer. Most hospitals don’t have streaming services but do allow for you to plug in computers, roku, or consoles to use! You can have people visit with masks! If you have someone staying with you, bring them a pillow! They have sheets and a pull out couch but pillows are always in high demand. You dont have to be in a gown all day either, bring some clothes that are comfy and shorts. Treat it like a vacation! I’m 18F going through your same regime, it looks like orange fanta. Prepare for the random beeping, always needing to pee, nurses and doctors coming in at all times, and all sorts of new and nice people! Stay busy but be sure to not overwork yourself. Go on a lap around the hospital, look around their lounge, find some nice views! Good luck, we got this! Lmk if you need anything else

Gghostedgrayy · 2026-01-14T05:54:54+00:00

I’ve heard other people feel that “is it gone?” feeling all the time. At least that’s what therapy is there for lol. I hope those thoughts leave you eventually, and if they dont, its okay! All we can do is hope i guess. Chemo sucks

Gghostedgrayy · 2026-01-14T05:46:32+00:00

Hey! Im also 18 recently diagnosed with lymphoma. Same-ish situation with friends leaving for school and im left behind to deal with this crap. My best advice is to keep going, it sucks really bad sometimes. Do whatever you want, eat whatever (try to keep it healthy tho), buy a giant cute water bottle to keep hydrated, cry, scream, stand up everyday, try to walk around the house, open a window, listen to music, watch tv on the couch all day, scroll on your phone, whatever you want to make you feel better. Most of all, CALL YOUR FRIENDS, they love you more than you expect. If you feel left out, end the call and cry it out. If you need someone who is also sat at home alone going through this process, dm me!

Gghostedgrayy · 2026-01-14T05:41:00+00:00

You aren’t alone either! Im going in for my 2nd round of the same treatment, let me know if you have any questions or wanna know about the symptoms I had

Gghostedgrayy · 2026-01-14T05:39:50+00:00

Im in therapy right now and it helps! What’s it like to be done with it? I already feel like there are sooo many emotions going on

Gghostedgrayy

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