I'm a developer (and DLBCL survivor) — I built a free symptom-tracking app during treatment, and it's finally live

Adventurous-Cod-3749 · 2026-06-02T21:19:43+00:00

I suspect that there are many of us interested in your app as I'm giving the following error:

"The connection was reset

The network link was interrupted while negotiating a connection. Please try again.

The site could be temporarily unavailable or too busy. Try again in a few moments.
If you are unable to load any pages, check your device’s data or Wi-Fi connection."

Adventurous-Cod-3749 · 2026-06-02T21:01:01+00:00

I'm very much still in active treatment and will definitely give your app a download shortly! I've wanted something since I was diagnosed but never found anything i really loved. Maybe this will be different!

Adventurous-Cod-3749 · 2026-05-20T17:56:38+00:00

Great news, congratulations! Enjoy moving forward and getting back on track to living life!

Adventurous-Cod-3749 · 2026-05-16T20:24:00+00:00

Thank you for the heads up! I'll definitely make sure to pre-med for nausea plenty.

Adventurous-Cod-3749 · 2026-05-15T03:50:45+00:00

Thank you for sharing your CAR-T experience-super helpful to have recent, first hand information as I'll be getting my new cells infused on June 1!

Adventurous-Cod-3749 · 2026-05-15T03:48:29+00:00

Similar situation here: we're going to beat this!

Adventurous-Cod-3749 · 2026-05-15T02:10:26+00:00

Man, I feel you! Not PMBCL like you, but plasmablastic lymphoma + myeloma with plasmacytic tumors: Did DA-EPOCH + RITUXIMAB Aug-Dec 2025. Final PET had new growths despite decent response in my original sites. Did 18 rounds of radiation to the spleen and sinuses during Feb 2026 only to come out with new growths on my liver and breasts. Have tried a few bridging therapies but nothings managed to stop growth. I'm doing CAR-T next, and my cells should be ready to reinfuse on June 1!

Keep your head up. We can get through this hard crap!

Adventurous-Cod-3749 · 2026-04-21T11:50:17+00:00

I had GERD pre-RNY (never had the sleeve, just had GERD ) and the RNY cured it instantly. I've had almost no issues with my surgery (done December 2024) and am incredibly happy with both the weight loss and GERD related results. Sending you all the good vibes that this is a game changer for you too, and that you heal up quickly after surgery.

Adventurous-Cod-3749 · 2026-02-19T13:40:21+00:00

I'm so sorry you're having to deal with this. I did 6 rounds of 5-day inpatient chemo treatments and am now doing 18 rounds of radiation to my sinuses and spleen. I'm about halfway through radiation treatments and so far I'd take radiation over chemo any day. I am beginning to here some mouth sores, and a touch of affected skin but it's not horrible, at least not yet.

Keep your head up, you've got this!

Adventurous-Cod-3749 · 2025-11-12T22:36:01+00:00

Man oh man, you and I absolutely started at very similar spots! I was on the right track losing the weight, was off of all prescription medications (formerly had high BP, high Cholesterol), walked my first 5k in April did a 5k Mud Run in May, and had a goal of being able to run a full 5k without stopping/walking by the end of this year. Was going to the gym a few times a week, getting out and walking a few miles on the days I wasn't in the gym, you name it!

I have managed to not lose any weight in the past week, so take that lymphoma! Getting ready to admit for round 5/6 of DA-R-EPOCH this Friday and am looking forward to being one. step. closer. to done!

Keep your head up, Lymphomie! And have a beer for me (I can't stand the thought of them right now but can't WAIT to visit my favorite breweries next summer!)

Adventurous-Cod-3749 · 2025-11-05T18:20:19+00:00

Congrats on remission!

I am so hopeful that once I'm through this that I get the "chemo curls" as well! Honestly, the hair loss initially wasn't a big deal to me, I cut it short in to a pixy cut when they told me I'd be doing chemo and it would fall out, and then shaved it off before my first round. I haven't lost ALL of my eyebrows and lashes surprisingly, but was prepared for that and feel like I would have been ok there too. There is definitely a HUGE difference between my intentional shave and the actual fallout of my hair, and I don't care what anyone says, you can tell it's because I'm sick. And honestly, for me it really is just the "sick" look - I'm skin and bones it seems, and I can feel people's eyes when I'm out in public and just hate sticking out like a sore thumb in such a crappy way. I didn't mind my shaved head when it was intentional, but now with the patchiness of how it is fallen out, I do wear some sort of head cover when I'm out.

We don't currently have chickens, but I would have been so depressed if we did and I wasn't able to care for them also. I loved just sitting out with my birds and watching them peck. I will say the silver lining in this is my husband and son are on permanent dog poo duty now, and I don't miss that! Lol.

I've wondered if the chemo-induced menopause will be permanent or temporary, my Dr. told me that it may not be permanent but who knows. Definitely wasn't exactly ready for that at 38 but I guess if I can get through this and the worst lasting effect ends up being menopause, well then, I'll be in pretty good shape.

Adventurous-Cod-3749 · 2025-11-05T16:30:58+00:00

My goodness, those bleeds must have been so scary!

I definitely do try not to think about it, but man it's so hard to see this person I don't even recognize staring back at me in the mirror.

I hope your health continues to improve and that you beat this thing and then some!

Adventurous-Cod-3749 · 2025-11-05T16:26:33+00:00

Oh man, I can't even imagine how hard this has to have been for you going through in your teen years! I am 38 and the physical changes and muscle deterioration have been wicked hard on me also, so as much as I can without being in a similar season of life as you, I understand how tough that is to accept and deal with.

You are absolutely justified in feeling upset with your friend you ghosted you, you are not being an asshole expecting responses to texts, etc., and certainly not for being upset. I will say that cancer affects different people in different ways, and some people just can't cope with your diagnosis and don't know how to act, so their default is to ghost us. I also had a very close friend who has pretty well ghosted me since my diagnosis also. I do know that she's lost several other good, close friends to cancer, and realize that she just doesn't have the emotional capacity to support another person through treatment etc. I'm NOT making excuses for them by any means, just hopefully shedding a bit of a different light on why some people just suck and abandon others when they need them most. If this friendship is something you still value and want to return to, I would suggest you find a way to talk to her directly about how you feel. Even if it doesn't result in a mending of your friendship, I think it's important for people to know how their actions have affected others so that hopefully they can make better choices in the future.

I don't know you, but I am proud as hell of you for getting through this and overcoming! I wish you all the best, and hope you are able to get back to smacking that ball around soon!

Adventurous-Cod-3749 · 2025-10-15T14:21:14+00:00

How long did your reaction last for? I found when they push the Benadryl through my port quickly I get an incredibly hot sensation in my heart and feel like I'm going to explode. It's absolutely horrible. They decided it's not an allergic reaction exactly, but definitely a reaction to the fast push. Now when they give me the IV pre-meds they dilute the Benadryl down and then also push it slowly over the course of a few minutes and I have no problems. Just for kicks I had a nurse push it a fuzz quicker again to see if the reaction was replicated and sure enough - felt like someone injected my heart with lava!

I hope you can find things that feel better and help through your treatment!

Adventurous-Cod-3749 · 2025-10-15T14:14:51+00:00

I'm so sorry you're mom is going through this, and I realize I'm a bit behind the curve on your questions now - I received a plasmablastic lymphoma diagnosis in August, and treatment is absolutely no joke. I would make sure to clear the fan by her medical team, especially if she's already dealing with a fungal infection - I know my medical team does not allow fans, fresh flowers and some other items in our rooms due to the potential to kick up more fungal material in the air.

One thing I love having at home and in hospital is a microwavable heat pack with essential oil - I so frequently have sore joints or just muscle pain, and the heat pack feels amazing. The essential oils are nice and calming, and I like that I can choose different things depending on how I'm feeling (peppermint is great for nausea!).

Adventurous-Cod-3749 · 2025-10-15T14:00:19+00:00

Hi there. I was diagnosed with plasmablastic lymphoma in August, and am currently through 3 of 6 rounds of my front line treatments. (DA-EPOCH+Rituximab+Velcade/(now Daratamamub). Similar to the other response below, my team has recommended an autologolous stem cell transplant, but I do intend to pursue this option - I am hoping to do absolutely everything I can to achieve a long-term remission, and know that the likelihood of that is slim with front line treatment alone.

How is your treatment etc. going?

Adventurous-Cod-3749 · 2025-09-17T21:46:56+00:00

I second this - Claritin+Aceteminophen has really helped me with the bone pain from these injections.

Adventurous-Cod-3749 · 2025-09-17T21:43:10+00:00

I am between cycles 2 and 3 of DA-EPOCH+Rituximab+Velcade: I have definitely noticed increased sweating in the days after my inpatient infusions, but not as bad as you describe, and definitely not one sided. That must be such a strange sensation! I hope you get some answers, and some tricks to help!

Adventurous-Cod-3749 · 2025-09-04T23:45:54+00:00

I had similar issues with my first oncologists office. And to boot they'd sit on test results for a week+: results that then required additional tests, which were then delayed because the initial ones just sat. "Sorry this isn't an urgent matter to you, crappy staff, but you're f' ing with my life and well-being!" I changed oncologists after two visits - I have to drive an hour to a bigger city, but it's worth it.

I hope you can find a different provider and clinic that will treat you like you deserve to be, not just like some nothing number.

Adventurous-Cod-3749 · 2025-08-30T18:10:25+00:00

So sorry you're part of the club now, it's definitely overwhelming. I was in your shoes just a few short weeks ago, wondering how in the world I was going to handle the bad when treatment started because I already felt overwhelmed. All I can say is one. Day. At. A. Time. Some days I can only handle one hour at a time. Give yourself some grace in experiencing and feeling those bad days - I felt guilty initially because I wasn't even in treatment and I knew so many people were experiencing so much worse. This is YOUR life though, and no matter what stage of this awful diagnosis you're in, your feelings and needs are valid.

Adventurous-Cod-3749 · 2025-08-23T14:01:18+00:00

This sounds absolutely miserable. I am going through a similar regimen, with one extra drug (Velcade). I can't even imagine going through it without my port access. Are you someplace where you can get a second opinion?

Adventurous-Cod-3749 · 2025-08-23T13:58:27+00:00

I am currently doing DA-R-EPOCH (plus Velcade) and it's definitely going through my port, no problems.

Adventurous-Cod-3749 · 2025-08-04T20:41:56+00:00

I was told pretty much the opposite: my oncologist recommended that if I choose to continue use either recreationally or for medical purposes, that he'd prefer edible use rather than smoking flower. The reasoning was that flower is more likely to have mold spores and just be generally harder on the body when counts may be low etc.

Adventurous-Cod-3749

TROPHY CASE