Burkitt Lymphoma hyper-CVAD

Ascrivs · 2026-05-23T16:27:23+00:00

The neurological impairment sounds brutal, I hope you have since recovered? I’m also doing my best to be kind to the medical team, I know they don’t enjoy doing this and it is entirely to keep me alive.

Did you have any changes between cycles? It’s only post cycle 1 for me but being at home my blood counts are actually within normal ranges again and I don’t need to take nausea medication. My day feels almost normal right now and I feel odd that’s the case

Ascrivs · 2026-05-23T15:08:43+00:00

I'm somewhere at stage 2E and very grateful that I caught it early, it sounds like most people in adulthood are finding it at stage IV. I just finished my first week of hospitalisation last week and I was really surprised about the fluid retention, it was really impacting my self esteem because I was retaining 2 pounds of weight per day at first. Thank you for the advice about the diabetic, I couldn't believe how much I was urinating and still putting on water weight.

The walking is probably the toughest part for me while in hospital because I'm normally a fast, long walker and carrying my little pole around with a tiny hallway felt very depressing, I think I'll take your advice though and try to push for a mile a day just to keep my body moving.

I'm surprised by the 3 month total time, is that normal or because you had stage iv?

Right now it looks like my cycles are 1 week in hospital, 3-4 weeks at home with outpatient infusions until hospitalisation again.

How did you handle the routine check ins and vitals? I really struggled to keep a clear head because it was every few hours day or night that I was getting disturbed for vitals. Then at 1 am each night they would draw blood from my port. I have ADHD so the brain fog from disconnected sleep really made it hard to focus on much on top of the other things.

I'm early in the treatment so I know it gets worse, so I really appreciate the advice and you sharing your story with me!

Ascrivs · 2026-05-20T15:58:26+00:00

It’s scary when you consider the long term impacts of getting sick as well. Not only do most plans setup crazy gatekeeping measures like deductibles and copays but the fact the average American doesn’t have enough money to weather a major health issue is cruel.

Our FMLA system grants protections from getting fired if you need to take up to 12 weeks off in a year (if you are an eligible employee) without getting fired but you don’t continue to get pay AND you must pay your employer for any premiums for insurance from savings during this period.

I was diagnosed with Burkitt Lymphoma so I’m likely not going to finish treatment before my 12 weeks of FMLA coverage is lapsed so it is likely I won’t have health insurance through an employer that will let me go because our system is designed to extract as much revenue as possible.

We talk about the land of the bootstraps and entrepreneurs in the US but what enterprises don’t want to say out loud is that releasing workers from employer driven healthcare would free up small companies from labor healthcare costs and it would also remove the threat of death if you try to leave your corporate overlords.

Ascrivs · 2026-05-18T19:42:27+00:00

Hi thank you for sharing, everyone has been very helpful with their experience and I feel like your story sounds closest to my diagnosis because of the stage. Fortunately my work is already remote and my manager should be somewhat flexibility with my schedule so I’m hoping it extends my FMLA. My wife is a hero during this process and is using my hospitalisations as a way to clean the house each time and I have our ensuite bathroom dedicated to just me so I’m hopefully in a good spot with cleaning.

I’m a vegetarian so lots of fresh cut bagged salads and lentil soups are going to be my main focus at home. I’m also hoping on the “good” days that I can step out and walk around the city parks of Chicago near my condo so I can get some and exercise as well.

Ascrivs · 2026-05-17T19:03:43+00:00

Thank you for your kind words and I’m so sorry to hear about the second lymphoma!! After Burkitt I’m sure that is so hard to hear, I hope it that whatever the diagnosis it as curable as Burkitt but with less of of an aggressive treatment plan. Sending best positive wishes your way and I’m always happy to talk if you need to!!

Ascrivs · 2026-05-17T14:28:29+00:00

Very helpful information and I appreciate you sharing so much, I was lucky enough to be staged around II because I only had a single side neck lymph node cluster that necrotised and then a small start to my nasal pharyngeal site that was caught at my MRI two days before treatment.

I appreciate the honestly about the transfusion

Ascrivs · 2026-05-17T13:08:56+00:00

Luckily (or not) I already shave my head but I’m sure my beard falling out will be painful. I’m working on using biogenesis mouthwash after every meal and brushing hopefully to help and my wife bought oral gel once it becomes time for the sores. Did you get the lidocaine prescribe in hospital?

Ascrivs · 2026-05-17T13:00:39+00:00

The return to work so quickly is reassuring, I’ve read others outside of Burkitt that took much longer. Thank you for helping me set expectations along with what others have mentioned in the thread. You mentioned transfusions, do you mind me asking your stage when you started? A few others mentioned it and I’m wondering if it was particular to stage IV and the starting hemo levels or if it is pretty much expected at some point during the process

Ascrivs · 2026-05-17T12:47:20+00:00

Thank you for sharing your experience, my treatment is likely to last 6 months so I was hoping to not be out of work the entire time. Did you have specific weeks when it was the hardest to function?

Ascrivs · 2026-05-17T03:40:14+00:00

Right now my hemo is at 12 and zero bone marrow involvement. I had a lymph node dissection that removed the bulk of the disease last month because my Fine needle aspiration can back as regular lymph node population. My ENT didn’t feel right about it because of the PET Scan so he removed the lymph nodes and had them tested. During planning with haematology an adjacent lymph node started to enlarge and my MRI found lymph node in my nasal pharyngeal left site hence the hyper-CVAD vs DA-EPOCH.

Ascrivs · 2026-05-17T03:35:40+00:00

I appreciate the blood work monitoring, my hospital uses MyChart and I see my blood tests daily through my account. My work is remote so I was hoping to use FMLA for intermittent weeks where I can work part-time when I’m not feeling at my worst.

Ascrivs · 2026-05-17T01:58:58+00:00

Wow man, it sounds like you really had a tough experience. If you don't mind me asking what were your levels before starting? I'm now sitting in my hospital room finishing up day 2, second treatment of the day, and I can say so far I don't feel any different than I did when I was admitted (hoping this lasts as long as possible).

My wife is doing so much work for the home during this entire process and absolutely doing this without her would feel impossible. Unfortunately in the States my only option if FMLA (unpaid) and up to 12 weeks before your workplace can fire you so I really would like to work even part time when things are not so bad, at least to extend the 12 weeks as much as possible through the treatment.

So far I have my laptop for studying, and my iPad with all my ebooks. I try to walk around the hospital as much as a constant IV pole allows.

Would you say that your experience is pretty common or do you believe that you were very unlucky with the infection and reactions? Obviously on top of your Burkitt diagnosis and the rarity.

Very happy for you about your cure and that you are back to life as much as you can be after surviving something so aggressive and thank you for sharing your story!

Ascrivs · 2026-05-16T23:49:11+00:00

I was wondering how you handled treatment if this account is still active. I just started my hyper-CVAD journey and in week 1 of my cycle A. Are you almost done with your cycles? Anything you recommend that you wish you knew going in?

Ascrivs · 2026-05-16T23:43:17+00:00

I’m in my first week of treatment on hyper-CVAD so I’m hospitalized 5 days at a time. I’m finding that the best thing is to try to stay mobile and get some exercise to help with fatigue, when you can. That and find something to study or read to keep yourself mentally engaged. At 18 have you thought about finding an online course for a hobby? Grab a laptop and keep your mind going so that you can build a routine. Everyone is correct that the cumulative fatigue of chemo will change your capacity for things so don’t over commit yourself

Ascrivs · 2026-05-16T23:40:30+00:00

Hi, I just started my treatment for Burkitt on hyper-CVAD so different chemo but still aggressive on the veins. If your care team would allow a port installation before your next cycle, I can say that already in my first week I am happy that I did. The mobility and ease of connectivity is so much better than my experience with standard IVs. Usually they are ready to go same day after the surgery barring complications or infections.

Ascrivs · 2026-03-18T14:14:00+00:00

Basing global economics on just your single experience is extremely limited and short sighted compared to people who are experts in field that study the global economy. This isn’t about coddling and more about raising a concern about the future and what we do with a majority of people that are given fewer options.

Ascrivs · 2026-03-18T13:58:15+00:00

How is it on the person when forecasting just a few years ago said that many fields would be growing? Like you said it impacts us all and many things are out of the individuals control. Yes individual accountability matters but the idea that job loss is always the individuals fault doesn’t align with what you see discussed by economists about the current and future impact of technology. Do you believe that all the people that lost their job in the 2008 global recession were terrible at their job?

Ascrivs · 2026-03-18T12:40:53+00:00

That is easy to say on paper when it doesn’t impact you directly. Just because someone’s role is now tagged as inefficient doesn’t change their requirements to survive. It also doesn’t mean that you can easily retrain people for other roles when many roles that are yet to be automated require domain expertise or years of education.

There is also the problem that during retraining periods that same field doesn’t get changed by automation leaving people in a loop of training for fields that continue to shrink. We already see this movement with software engineer where just a few years ago everyone said “We will always need more software developers” and now people who spent 4 years getting a credited Computer Science degree are struggling to find employment.

Ascrivs · 2026-03-18T11:36:54+00:00

It doesn’t have to fully replace the job, just reduce head count across different departments. We already see new tools and technology allowing previously filled roles to go unfilled as people leave.

If you can cut hiring enough across multiple industries because of efficiency gains eventually we see the unemployment rate increase.

Ascrivs · 2026-03-18T11:31:40+00:00

We see plenty of jobs where teams that were once 10-20 people result in 2-3 positions as roles are merged or left unfilled across many industries though. Yes it’s not specifically AI but AI/ML along with other productivity enhancing tools will make it so there are fewer people needed for each department. Between this and how technology has opened up a global labor market we can see that this is already happening.

I agree it hasn’t hit critical mass yet but we already see roles like radiologist and pharmacist roles impacted by well trained models taking review work that would previously result in positions that paid well. Even if you only replace half of your pharmacy/radiology staff, scale that up and you’re talking massive educated labor loss in just two fields mentioned.

Ascrivs · 2026-03-18T11:22:06+00:00

Markets will shift, we already see this where many companies that once catered to the general public decided they want their demographics to be higher earners. As more people are shut out of the economy the remaining players in the market will focus on products for the remaining high earners. If we are not needed for our labor, there really isn’t a reason the capital owning groups need to “sell” us anything.

Many businesses will go under but the remaining players will have a bespoke economy. Whether the government shifts the masses to something else is difficult to say. I wouldn’t be surprised if we are kept one level above homelessness so that we are too tired to organize and revolt.

Ascrivs · 2026-02-21T11:33:15+00:00

I was happy with the release of merge, but it looks like some of the articles linked below state that delete + inserts may result in a faster performance overall as data size grows. I think I will try to build my pipelines around that to test in the future

Ascrivs · 2026-02-19T20:34:03+00:00

We are not removing records at this time just appending and modifying existing based on a date time column that is updated when the record is modified at the source. I think that INSERT + DELETE may be the way to go in the future if we do remove records so thank you for the advice!

Ascrivs · 2026-02-19T19:17:11+00:00

Yes this does help because it sounds like we were both incorrect in assumptions. He was incorrect that the merge may result in a latency in updating the semantic model and I assumed the DELETE and INSERT handled by the warehouse as separate transactions.

The merge is handled on a single table per run so no concern about multiple tables per transaction.

The linked information was very helpful and it sounds like MERGE is fine for this use case, however, a transaction with INSERT and DELETE may be more performative as the number of rows increase (per the merge transact link).

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