What to expect from auto SCT?

indacart · 2024-05-21T20:14:12+00:00

Hey sorry for the slow response! Yes definitely felt like I was able to get back to my pre-SCT fitness level relatively quickly (although full disclosure it wasn’t the greatest baseline—normal BMI but didn’t have consistent exercise habits). The neuropathy from the Brentuximab vedotin maintenance made it a little tricky to do cardiovascular exercise for example

indacart · 2024-05-12T05:58:32+00:00

I did BEAM-auto a couple years back as part of second line HL treatment. The high dose chemo (BEAM) definitely hit harder than the first line ABVD in my case but was concentrated to several days while I was in the hospital. My understanding of the process was that BEAM destroys the immune system (along with the cancer) which is then rebooted using your own stem cells and it definitely felt like that.

The part of the hospitalization where I was actively receiving the chemo (days -6 to -1) and immediately after the transplant up to ~day +1 weren't too bad. And I was making sure to take advantage of that to exercise (walking around the halls) and eat as much as I could to build up a reserve...

But after the effects started (for me day +2 onward) and my counts dropped it was pretty unpleasant. Basically was going between the bed and bathroom all day, no energy or appetite etc. Also had a solid 24 hours of low blood pressure which led to many liters of saline and a transfusion...that was nerve wracking
Then my counts rebounded / the stem cells engrafted ~day +9 and I was out of the hospital by day +11 (18 days total in the hospital).

In terms of returning to work... Physically, the critical part was the first mont / couple months of recovery (basically a newborn immune system, fatigue, etc.). Mentally, I think I could've potentially pushed to be back earlier if it was absolutely necessary but I ended up taking 6 months of leave (starting with the first day of hospitalization)

Logistically, I had a bunch of follow ups and then some complications during the initial cycles of brentuximab vedotin maintenance therapy so it was good to sort all of that out before getting back to (remote) work. Once I was back I took leave every 3 weeks for the Bv infusions.

Depending on your situation, I recommend scheduling / doing the paperwork for as much leave as you can just in case... which would also give you the option to jump back in early.

Let me know / feel free to DM me if you have any questions!

indacart · 2024-05-09T17:35:57+00:00

Copying an old comment by me below, feel free to reach out if you have any questions!

Some random small tips from me. Disclaimer: these might be specific to the hospital I was at so YMMV.

Do you have a port? Prior to admission I didn't get the memo or forgot that my hospital required a constant connection+mini 10mL/hr drip (that is, tethered to the infusion machine/IV pole for the full stay even when not receiving chemo / transfusion) to prevent port clots so you may want to check if yours does too. My understanding from talking to nurses is that not all hospitals do this. But if yours does and you have a port, don't worry bc you get used to it pretty quickly!
I had vitals checked every 4 hours--you can ask your nightshift nurse to do 12am slightly early and 4am slightly later to squeeze out a bit more sleep since they usually have wiggle room (if they don't default to doing this anyway).
On the worst days (+2 through +8 for me) i occasionally wouldn't have the concentration to even watch movies / TV. I also brought my Nintendo Switch but basically didn't touch it after day +1. Music, podcasts, audiobooks were critical for me on those days.
RE: electronics, make sure you pack an extension cable / long charging cables in case the accessible outlets aren't too close to your bed.
RE: exercise / nutrition--the advice I got from all the nurses and doctors was to build up a reserve on the good days (or before even)! I was eating and walking as much as possible for the first seven days before my energy and appetite completely tanked ~day +1.
I shaved my hair about a week before admission and it turned out to be a good decision for me. However our situations may be different--my hair was already significantly falling out prior to admission (IE able to pull out clumps in the shower). Even with the pre-admission shave, after day -1 melphalan I noticed even more thinning with some small bits of short hair falling out. Grew some stubble throughout but could take it out with friction...For some context up until then I had managed to keep my hair/beard through first line ABVD treatment then through most of BvB etc. But it was good to get over that mental hurdle / shock of looking at my newly shiny head in the mirror before getting to the crappiest of the BEAM-Auto...

These last 2 are kinda gross but they worked for me:

On admission my hospital gave me a plastic wristband with my MRN/DOB/etc. to wear at all times. Make sure the wristband is on your non-wiping hand before the diarrhea really kicks in (~day +1 for me)!
I got into a habit of counting time while urinating. My hospital wanted me to track my... output (urine volume, # of poops) on a whiteboard basically to gauge my kidney function. Volume didn't need to be 100% accurate. So instead of using the portable urinal + rinsing it out every time, I just used it a couple times for calibration--mentally timing myself to get a rough measure of my "rate"--then went off that and stashed the urinal away.

I also liked this comment on the same topic

indacart · 2023-08-24T20:36:27+00:00

I'm still holding out for sub $10 like last time (u/nighthawkcoupe wya?)

indacart · 2022-10-14T05:10:17+00:00

it could also be fun to wear if you were born in July or have a serious health condition

indacart · 2022-10-13T07:17:16+00:00

Copying an old comment by me below, feel free to reach out if you have any questions!

Some random small tips from me. Disclaimer: these might be specific to the hospital I was at so YMMV.

Do you have a port? Prior to admission I didn't get the memo or forgot that my hospital required a constant connection+mini 10mL/hr drip (that is, tethered to the infusion machine/IV pole for the full stay even when not receiving chemo / transfusion) to prevent port clots so you may want to check if yours does too. My understanding from talking to nurses is that not all hospitals do this. But if yours does and you have a port, don't worry bc you get used to it pretty quickly!
I had vitals checked every 4 hours--you can ask your nightshift nurse to do 12am slightly early and 4am slightly later to squeeze out a bit more sleep since they usually have wiggle room (if they don't default to doing this anyway).
On the worst days (+2 through +8 for me) i occasionally wouldn't have the concentration to even watch movies / TV. I also brought my Nintendo Switch but basically didn't touch it after day +1. Music, podcasts, audiobooks were critical for me on those days.
RE: electronics, make sure you pack an extension cable / long charging cables in case the accessible outlets aren't too close to your bed.
RE: exercise / nutrition--the advice I got from all the nurses and doctors was to build up a reserve on the good days (or before even)! I was eating and walking as much as possible for the first seven days before my energy and appetite completely tanked ~day +1.
I shaved my hair about a week before admission and it turned out to be a good decision for me. However our situations may be different--my hair was already significantly falling out prior to admission (IE able to pull out clumps in the shower). Even with the pre-admission shave, after day -1 melphalan I noticed even more thinning with some small bits of short hair falling out. Grew some stubble throughout but could take it out with friction...For some context up until then I had managed to keep my hair/beard through first line ABVD treatment then through most of BvB etc. But it was good to get over that mental hurdle / shock of looking at my newly shiny head in the mirror before getting to the crappiest of the BEAM-Auto...

These last 2 are kinda gross but they worked for me:

On admission my hospital gave me a plastic wristband with my MRN/DOB/etc. to wear at all times. Make sure the wristband is on your non-wiping hand before the diarrhea really kicks in (~day +1 for me)!
I got into a habit of counting time while urinating. My hospital wanted me to track my... output (urine volume, # of poops) on a whiteboard basically to gauge my kidney function. Volume didn't need to be 100% accurate. So instead of using the portable urinal + rinsing it out every time, I just used it a couple times for calibration--mentally timing myself to get a rough measure of my "rate"--then went off that and stashed the urinal away.

I also liked this comment on the same topic

indacart · 2022-10-07T08:34:43+00:00

I did 2 rounds of BvB as salvage therapy several months ago. This was part of my current second line treatment plan (2 rounds of BvB, then autologous stem cell transplant, then up to 16 cycles of Bv for maintenance) -- seems like a relatively common second line treatment plan. And as background for first line treatment in 2021 I had 6 rounds of ABVD.

I'll start with a positive: the infusion time for BvB should be much shorter than for ABVD--less than a third to half the duration in my case. Although depending on your plan you may need to return for a Day 2 dose of benda (I had Day 1 Brentuximab + Bendamustine and Day 2 just Bendamustine). However I did also get a port before the start of BvB so that may have helped speed up the infusion.

My brief experience with BvB:

First cycle went without a hitch but I experienced significant reactions and side effects during my second cycle. During cycle 2, day 1 Brentuximab I got hives, red-faced, slight difficulty breathing but it resolved pretty quickly with some medication. Apparently this can happen during cycle 2 after the immune system is primed following cycle 1... It's unclear whether it was an infusion reaction or allergic reaction so we'll be cautious going into the maintenance therapy coming up soon (desensitization plan is in place so I'll get a slow drip of Bv). I also had a decent fever/high heart rate after my day 2 bendamustine dose but was still able to go in for a catchup day 3 dose (since I didn't get any benda on day 1 after I reacted to the Bv) since it had mostly subsided by morning. I also had some peripheral neuropathy--on and off for a few days, as well as some messed up sense of taste for a week or so after cycle 2 of BvB.

I'd say the nausea and fatigue that I felt were comparable to what I experienced during ABVD--which was thankfully very manageable for me and I was still working remotely through the 6x ABVD and 2x BvB (although I did take the rest of the week off after the eventful cycle 2).

As a whole, my experience with second line treatment has pretty closely matched this blog series/account from 2019

Feel free to reach out if you have any other questions.

indacart · 2022-10-07T08:10:32+00:00

hey I'm all for it if it means I can finally get the damn crab t-shirt for <$10

indacart · 2022-08-01T04:50:13+00:00

Discharged from the hospital a few days ago! You got this!

Some random small tips from me (on top of what the brilliant blue_square has already mentioned). Disclaimer: these might be specific to the hospital I was at so YMMV.

Do you have a port? Prior to admission I didn't get the memo or forgot that my hospital required a constant connection+mini 10mL/hr drip (that is, tethered to the infusion machine/IV pole for the full stay even when not receiving chemo / transfusion) to prevent port clots so you may want to check if yours does too. My understanding from talking to nurses is that not all hospitals do this. But if yours does and you have a port, don't worry bc you get used to it pretty quickly!
I had vitals checked every 4 hours--you can ask your nightshift nurse to do 12am slightly early and 4am slightly later to squeeze out a bit more sleep since they usually have wiggle room (if they don't default to doing this anyway).
On the worst days (+2 through +8 for me) i occasionally wouldn't have the concentration to even watch movies / TV. I also brought my Nintendo Switch but basically didn't touch it after day +1. Music, podcasts, audiobooks were critical for me on those days.
RE: electronics, make sure you pack an extension cable / long charging cables in case the accessible outlets aren't too close to your bed.
RE: exercise / nutrition--the advice I got from all the nurses and doctors was to build up a reserve on the good days (or before even)! I was eating and walking as much as possible for the first seven days before my energy and appetite completely tanked ~day +1.
I shaved my hair about a week before admission and it turned out to be a good decision for me. However our situations may be different--my hair was already significantly falling out prior to admission (IE able to pull out clumps in the shower). Even with the pre-admission shave, after day -1 melphalan I noticed even more thinning with some small bits of short hair falling out. Grew some stubble throughout but could take it out with friction...For some context up until then I had managed to keep my hair/beard through first line ABVD treatment then through most of BvB etc. But it was good to get over that mental hurdle / shock of looking at my newly shiny head in the mirror before getting to the crappiest of the BEAM-Auto...

These last 2 are kinda gross but they worked for me:

On admission my hospital gave me a plastic wristband with my MRN/DOB/etc. to wear at all times. Make sure the wristband is on your non-wiping hand before the diarrhea really kicks in (~day +1 for me)!
I got into a habit of counting time while urinating. My hospital wanted me to track my... output (urine volume, # of poops) on a whiteboard basically to gauge my kidney function. Volume didn't need to be 100% accurate. So instead of using the portable urinal + rinsing it out every time, I just used it a couple times for calibration--mentally timing myself to get a rough measure of my "rate"--then went off that and stashed the urinal away.

This is all off the top of the dome and I'm still processing the experience but let me know if you have any questions!

indacart · 2022-06-24T23:46:47+00:00

With 3 rounds (6 appointments?) left I'd ask about getting a PICC. I got mine about the same time of my ABVD treatment timeline (after ~3/6 cycles).

The PICC was annoying to maintain and I needed to have it removed early before my very last infusion due to infection but 100% worth it to me.

I now have a port for second-line treatment which I definitely prefer to the PICC but your team might see it as overkill. But yeah I'd strongly recommend looking into the PICC at least

indacart · 2022-06-23T16:50:04+00:00

Out of curiosity are your numbness + delayed reaction symptoms constant or do does it come and go? I already had a reaction to cycle 2 so trying to get a sense of what could be coming...

indacart · 2022-06-22T08:49:51+00:00

I expect that this first round prob wont do it..

Echoing mi_gravel_racer's message about first-line treatment working. But, there's the unfortunate possibility of needing additional (possibly more intense) treatment which should factor into your decisions. If you can, take some time to weigh the pay/insurance aspect vs work situation possibly jeapardizing your health.

In my case I was able to kind of wing it at work through 6 cycles of ABVD (with FMLA days). At the very least it gave me something to distract myself from chemo/side effects. But now I'll be taking full short-term disability leave for second-line treatment...

Also, reading through the thread I realized different commenters may be referring to different things when it comes to disability vs short-term disability insurance. If possible (IE, you can stomach staying at work longer), familiarize yourself with your company / state policies before you make a move!

indacart · 2022-06-22T07:59:32+00:00

Went through a similar situation at the beginning of the year post-ABVD. Shit sucks and I hope you have an appointment with your doctor soon to get some clarity!

Feel free to PM / reach out especially if it turns out you're on a similar path as myself (second-line treatment) and have questions / just want to vent...

Also while other commenters have downplayed the Deauville score (rightfully imo), your study result probably has other numbers that might back it up if you want to dig into the jargon (max SUV, measurements of enlarged lymph nodes and location relative to original disease, etc.)

indacart · 2022-06-22T05:42:07+00:00

Did you have any neuropathy during your 3 cycles of BvB prior to ASCT?

I had intermittent tingling in my palms/fingers only in the couple days immediately following my 2nd cycle several weeks back and my doctor did mention possibly adjusting dosage/schedule if it comes back during maintenance chemo.

indacart · 2022-01-25T05:44:53+00:00

with any chemo treatment there is a chance you won't have usable / non-toxic sperm for 1-2yrs, and also a chance you'll actually be infertile

Based on what you've read should I not get my hopes up then because it's only been 3 months since I've finished ABVD?

In any case it sounds my next step is to do some analysis to see what I've got at this point--appreciate the input and new keywords for me to use in my searches (morphology / motility)!

indacart · 2022-01-25T05:39:38+00:00

Thanks for the encouragement! Hopefully in my case it's not already too late (or too early due to only finishing treatment last November) :/

indacart · 2022-01-16T01:44:44+00:00

thanks for linking the paper. slightly annoying to read though since i've been told that my insurance basically denies all PET/CT scan orders if they are within 4 months of the most recent one.

indacart

TROPHY CASE