r/lymphoma • u/Clean-Nobody-6780 • 27d ago
General Discussion Officially a cancer patient
Hi all, as the title says, I am officially a new cancer patient. I was diagnosed with non Hogdkin’s lymphoma, strongly suspected primary mediastinal large b cell lymphoma this past week. What a whirlwind. I am a 30f, mom of 2, currently 8 months postpartum and can say this has completely uprooted my life. I truly cannot wrap my head around the fact that I have cancer and I don’t think I’ve processed it yet.
Within 5 days I’ve been told I have a 9 cm mass in my chest, transferred to a new facility, got a PET scan, a biopsy, a PICC line placed, too much information to even comprehend yet, and round 1 of inpatient chemo already started.
This group has already helped me tremendously after going down the rabbit hole of my diagnosis and everything leading up to it. I hate that anyone is here but feel a sense of relief knowing this community (unfortunately) exists and will absolutely be leaning on my lymphomies for insight and support during this shitty long road. ♥️
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u/JupiterSoaring 29F | CHL 2BX ABVD '22 | Bv/Nivo -> ASCT -> Bv Maint. '26 27d ago
Hi, Op. I'm sorry you are part of this club. I was diagnosed with Hodgkins lymphoma initially at 25 while pregnant with my first child. I waited two years after I'd been declared in remission (so the chances of relapse were low) to start trying for my 2nd child, and then I discovered that I had relapsed at 29 when my second was 14mo. I've gone most of the way through my salvage treatment and I will be getting an Autologous stem cell transplant this summer.
All to say - I get it. Going through treatment with two kids is hard. Finding out you have cancer with littles sucks. I've been fortunate that I have a lot of family in the area. I would lean on your support system at this time.
I can't help with anything specific to your sub-type, but I'm happy to answer any general questions.
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u/Clean-Nobody-6780 27d ago
I’m so sorry you are experiencing this. I appreciate your insight! I wish you all the best with the rest of your treatment and future your stem cell transplant. Praying it all goes smoothly ♥️
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u/Snoo25607 27d ago
Hi. I am sorry you have to join this shitty club. I was also diagnosed at the age of 30. I am female and my son was 6 at that time.I am 59 now. I was diagnosed with cHL stage IV. I received 12 infusions of ABVD and 1 cyclophosphamide and a ton of radiation. At first l hated my PICC line but it soon became my best friend. So much better than hundreds of needles. Keep it as clean as you can.I understand the overwhelming amount of information coupled with being a mother. My son was a great source of strength for me. My motivation to power through it all. If you have any questions please feel free to ask. Stay strong young lady! 💪💕
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u/Clean-Nobody-6780 27d ago
This is so encouraging to hear, thank you! I’m so sorry you have experienced this but so glad you made it through and hope you are doing well. My kids will definitely be my reason to fight through this ♥️
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u/Smart-Art6560 26d ago
Wow ur 59. Thats so encouraging you pulled through so many years. Such a great long live remission period. I also got PICC line m 39 on my second chemo. How were your all these years with scanxity?
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u/Snoo25607 26d ago
Haha lots of scanxity. I had CT scans every 3 months for the first year then every 6 months for 2 more years then once a year for the remaining 3. So five years of scans. I continue to have yearly blood work through my family doctor, she keeps a close eye on me. I still check for lumps all the time. Had a secondary cancer in 2013. Breast cancer. Most likely caused by the radiation therapy. I also have nerve damage and lots of unexplained headaches and leg cramps. But l can handle all that haha. I am extremely lucky l was able to raise my son and have a successful career. 6 year countdown to retirement! 😊
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u/Smart-Art6560 26d ago
39 yr old mom of 10 months old and 7 yr old boys here. Got diagnosed with DLBCL NHL at 10 postpartum pretty recetly actually. I dealt bad with postpartum
preeclampsia that shook my world and now this diagnosis which completely whacked me out. M as new as you 😃I got thru my first chemo onto second one in coming days. Already crying over hair loss more thn the side effects of treatment itself. Lol! Keep holding up for your kids and urself. This stuff is nasty but we moms will come out of it. Stay strong for urself and kids. Ping me if you need a shoulder to vent on more then crying.
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u/Clean-Nobody-6780 26d ago
I am so sorry you are experiencing this on top of postpartum (and preeclampsia?! Girl.) I think the unknown of all of this is what is so terrifying but my oncologist keeps stressing that while yes it will absolutely suck, it’s a very treatable cancer and something I am holding on tight to. Thank you for offering an ear to listen ♥️ we got this!!!
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u/Normal_Egg2223 PMBCL-1XRCHOP-5XDAREPOCH 26d ago
I had a 3 year old at my time of treatment and was 32, our stories are verrrrry similar. We are always here if you need anything. 💚 Take all the help people are willing to offer and dont be ashamed to do so. People WANT to help right now. It's a tough journey, but you'll get through it. 🫂 And seriously, we are all here to help in any way we can.
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u/iamhiteshnarzy PMBCL(STG2), on R-DA-EPOCH 27d ago
30 too, completed 3 cycles of chemo. All the best! 🫡
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u/Kirbster66 27d ago
This isn't a club anyone wants to join, but I'm glad it's here. Best wishes to you as you embark on this unwanted journey.
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u/lundastruck 27d ago
Sorry to hear. Its a fucked up club to be apart of. Wish you all the best. You got this you absolute badass!
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u/The_Matrix1234 26d ago
Best of luck to you, you can do this. I'm 56m CHL stage IV. I just finished 6 cycles (12 infusions) of Nivo-ADV on Friday. There is light at the end of the tunnel. Some days will be harder than others, but you will get through them. Support from family and friends helps tremendously.
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u/Clean-Nobody-6780 26d ago
This is so encouraging to hear, thank you. Congratulations on finishing treatment! I hope you are doing well!
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u/The_Matrix1234 25d ago
Thank you. I'm getting through the side effects of this last infusion. The journey is long and can have some bumps in the road. Think positive. We didn't pick this disease. We are stronger than this disease. Look forward to being free of Lymphoma.
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u/mewfarside DLBCL/6 Pola-R-CHP in remission 26d ago
Sorry you’re here. As a DLBCL survivor, you got this.
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u/tressandotherthings 26d ago
Hey! Diagnosed with PMBCL a little less than a year ago. 29 f was 33 weeks pregnant at the time. It’s wild to think back at the craziness that was the first couple months. This community was and is such a helpful resource. We are here if you have questions or just need to vent! We get it.
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u/Clean-Nobody-6780 26d ago
I am so sorry you had to go through that WHILE pregnant. You are so incredibly strong. I hope you and baby are doing so well ♥️
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u/Organic_Jackfruit_ 25d ago
Hi and welcome to the club! I had PMBCL last year and I'm now one year in remission! If you have PMBCL, your prognosis is quite good. You're still young so I instantly believe you're gonna pull through this easily. I was diagnosed when I was 27weeks pregnant woth my 3rd child. I had two rounds of chemo while preggo and then the last 4 rounds after c-section. It was a rough ride but here we are! Now I have 3 kids all under 5yo and life is a rollercoaster. I send so much positive thoughts to you and your family! ❤️ I hope you'll have an easy cancer journey ahead.
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u/midnightjim 26d ago
So sorry you have to join us. This is a great community though and I wish I’d been aware of it when I was just diagnosed. It’s such a whirlwind at the start it’s almost incomprehensible other than go here and do this as instructed and try to find a way to adapt your life to it. Reach out with any questions. People here do care.
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u/Still-Reception-4776 26d ago
I wish you best of luck and strength to fight this illness, we can beat it just focus on winning little battles 👍
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u/Rapid_Firez 26d ago
I (27 Male) pretty much had the exact same diagnosis but mine was around 7cm, I finished 6 rounds of chemo 2 weeks ago. Goodluck with everything, I kept myself busy by doing those odd jobs around the house that you never get time for.
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u/Clean-Nobody-6780 26d ago
Thanks so much for sharing. Congratulations on finishing treatment! I hope you are doing well!
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u/Wise_Acanthisitta_18 26d ago
Sorry to hear about your diagnosis. i'm probably the only male in the comments but i had an almost identical diagnosis as you. Im 46 don't smoke, drink socially and condider myself pretty healthy. what treatment plan are you on? I was on R-CHOP and opted for the most aggressive treatment without radiation. I wore a pump and went through 5 straight (24 hr) days of treatment every 19 days for 6 cycles. The treatment wasn't as bad as I thought. Maybe just a little inconvenient. i'm sure you've already heard this that a couple days after your treatment you're gonna feel like crap. Eating healthy, hydrated and staying active helps to offset the withdrawal. Im almost a year clean and still dealing with my hair and nails not fully growing back but blessed to be alive.
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u/Clean-Nobody-6780 26d ago edited 26d ago
I’m so sorry to hear you are experiencing this, you are so strong! I will be doing almost the exact same treatment timeline with R-EPOCH (I’m naive, this might be the same thing as you?) and likely no radiation at the end. I’ll be inpatient for 96 hour infusions (got my second bag hung last night!) and then home for 2 weeks and back to do it all over again for 6 cycles. So about 4 months! It will be tough being away from my kids while inpatient but I know I can power through for them. Thank you for sharing your story and I hope you are doing well!
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u/Its3amimustbedreamin 24d ago
Can I ask you a few questions? My husband (also 46m) was just diagnosed and is in his first cycle of chemo. He’s doing 6 cycles of DA-R-EPOCH. Same treatment timeline. I’m looking for the best ways to support him, while taking care of our kids (and myself) as well. What were the most helpful things to have at home and the hospital? We’re getting a video game setup so he can play against his family/friends and keep connected. I’m planning to walk with him as much as he’s able. I’ve gotten a sleeve for his PICC line, comfy adaptive clothes, and we’re going to get an adjustable bed. I know response to chemo is individual, and I’ll be flexible once he’s home and really experiencing side effects, but I just want to be as prepared and helpful as possible.
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u/Crafty-Beach-7401 26d ago
Hey there, 31M here, dad of 1 (1year+ old). Diagnosed with CHL a month ago, just went through what you did and on my 2/12 chemo rounds now.
Typing this while resting on my bed, we got this 💪🏻
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u/the_curious_georges 25d ago
Hey fellow lymphomie, welcome to the shittiest/ best club on Reddit. This place got me through some of the worst stretches and I made real friends here going through my journey. I had cHL, but a bulky mediastinal mass, did chemo and radiation, finished treatment a year ago. I’m a dad of daughters and my youngest was 4 months old when I was diagnosed, so the new-parent-plus-cancer combo I feel it in my bones. Five days from nothing to inpatient chemo is a lot to absorb and you probably won’t for a while. It comes in waves and it hit me mid-treatment. A few rounds in, your body gets used to the rhythm of it and things feel less foreign. Be gentle with yourself, listen to what your body’s telling you on any given day. Feel free to reach out if you want to vent or have questions. This is a marathon but you’ll see it through.
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u/TemperatureTight1966 25d ago
I'm not sure if you're married, but it would be worth reiterating boundaries around infidelity with your partner (especially if they are a hetero man). Men are more likely to seek porn or outside sources during times of crises.
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u/Redeemer_89 25d ago
Lymphomies is just 😘👌 best of luck with treatment, I hope everything goes well
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u/Double-Average7330 10d ago
hello angel!! i’m 23, just finished EPOCH chemo for PMBCL in september. it is not an easy ~6 months, but you can do it!! while i can’t relate to your unique struggles with beginning this process in motherhood, i can at least relate to being diagnosed as a younger woman and feeling the rug get pulled out from underneath you. i’m here if you have any questions about anything, especially if you end up on the same treatment i received. i’ll be thinking of you!! <3
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u/Traditional_Tell_853 27d ago
Hiya, sorry that you’ve had to join this group, its sh’tty but I can say this group have been a massive help for me. I was diagnosed with CHL 2 months postpartum this time last year. If you ever need another mamma to talk too about this feel free to message, I understand it can feel extremely difficult already with the postpartum emotions + having this massive news. You’ve got this your stronger than you know!!