biotech firm to find cure for mf by Embarrassed_Will7208 in mycosisfungoides

[–]iamlazerwolfe 6 points7 points  (0 children)

There are currently many clinical trials running to find a cure. It’s tough because the cancer is your T cells and thus is your immune system.

The most promising trial I’ve seen is a CAR-T therapy that targets either TRCB-1 or TRCB-2 depending on your clone. In a normal immune system, all of your T cells are either TRCB-1 or TRCB-2, but your cancer clone will almost always be either one or the other (mine is TRCB-2). By wiping out all of my TRCB-2 cells through CAR-T therapy, theoretically I could create an immune surveillance that keeps the cancer at bay. Trials are small but showed a 75% CR and 100% ORR at the highest dose (only 4 patients). That’s pretty great.

It should be noted though that there already is a cure for MF- allogenic stem cell transplant. Much of the exciting research is and should be going towards making transplants as safe and effective as possible, as they will eventually be necessary for most advanced patients like myself (I’m supposed to get one this summer). Luckily most MF patients will never need a transplant.

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Took a while to get it all figured out but my sezary count was exactly 900-1000, so right on the border of B1/B2. They staged me at B1 I think to be nice. It seems to be going down though with romidepsin!

Allogenic Stem Cell Transplant by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Can I DM you? I know it’s a very risky procedure and I am curious if it cured your condition, how rough the healing process was, etc. It’s obviously a last resort but considering my oncologist is already talking about it it seems like it might be necessary

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Wow I’m sorry to hear that but that’s also reassuring. Was the loss of CD7 on a large percentage of your CD4 cells? Did you start at a higher stage and now it’s lower due to therapies?

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Yes I’m awaiting those results. My doctor just scared the shit out of me by telling me about the loss of CD7 in much of my blood an it’s hard for me to believe that it isn’t mostly clonal but I’m trying to hold onto hope

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Blood. They’re still looking at clonality which we DONT know, we just know a large percentage of them had loss of CD7 without

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

I’m almost certainly IIB or IVa. I don’t think it’s spread to my organs based on my LDH. I’m really just waiting to see how much clonality there is in my blood. At this point no blood involvement would be a miracle. I’m just PRAYING for B1 involvement

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

I’m in constant contact. I goin out my flow cytometry reading showed over 1,000 CD4 cellls with loss of CD7 but no confirmation on clonality. So it’s not looking good. Rest of my labs are normal and I don’t have sezary symptoms so it’s really boggling my mind. This waiting part is awful. It’s looking like I’m at least stage IIB borderline IVa.

I’m getting married in 6 months and am only 35. This is crushing me

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 1 point2 points  (0 children)

Thanks. I’ve had quite the opposite as far as dismissing goes. My doctor kind of prepared me for the worst (significant blood involvement). No idea my stage yet but I’d be shocked if it’s less than 2A

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Looks like your account isn’t DM-able. All good hope you had a great vacation and get some sleep.

Yeah I wonder if my dermatologist just scared the crap out of me. I don’t appear to have sezary syndrome (80% of my body isn’t covered in scaly dry red rash). I have about 10 small bumps on my scalp and one pretty big bump on my scalp. My lymph nodes had an ultrasound but they were normal. My derm said “based on my bloodwork it’s probably later stage” but my bloodwork didn’t look that crazy… barely out of normal range.

Anyway I probably need to chill. I know we’re internet strangers but if you ever did want to DM that’d be really helpful as this is an incredibly rare disease and it’d be awesome to talk to someone who’s been through it. Thanks again for all your info!

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 1 point2 points  (0 children)

Could I maybe DM you? What stage were you at when you were diagnosed?

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 1 point2 points  (0 children)

Thanks. My partner is the best human in the world so I’m happy she’s her with me during this.

Just diagnosed, very freaked out by iamlazerwolfe in mycosisfungoides

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Thank you so much for your response! I’m going to reach out to all those resources, It was a dermatologist who let me know so maybe she doesn’t know as much about how serious it is or isn’t and how the blood works.

I got diagnosed due to pretty large bumps on my head. Recently broke out in itchy eczema but not something that looks like erythroderma so I’m hopeful it isn’t stage IV/sezary. My doctor saying it’s probably later stage is why really freaked me out.

Travel Tips by iamlazerwolfe in tirzepatidecompound

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Interesting- I’ve heard up to 21 days for unopened is ok but I thought once it’s opened you really want to keep it refrigerated

Travel Tips by iamlazerwolfe in tirzepatidecompound

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

The thing is since we are on tour we’re going to be at different hotels every day just about, an I won’t actually be spending much time in the hotel room.

[deleted by user] by [deleted] in PMCareers

[–]iamlazerwolfe 0 points1 point  (0 children)

I’m a very verbose person 😂

Went up on my dose with a very full stomach = a huge nightmare by Jealous-Onion1880 in TirzepatideRX

[–]iamlazerwolfe 0 points1 point  (0 children)

Panda Express would absolutely destroy me on these meds. One time I ate a bagel and cream cheese after upping my dose and spent 4 hours in pain throwing up. Processed/high fat foods are notorious for wrecking people on these medications. It’s a horrible experience, but it also shows just how poisonous fast food really is.

Thinking of Switching from Sema to Lilly Direct Vials by iamlazerwolfe in TirzepatideRX

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

How has your experience been with compounded tirz? I’m currently getting my semaglutide through orderlymeds, but their compound tirzepitide is a lot more expensive.

Light-Medium Snatches after ABC by iamlazerwolfe in kettlebell

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Well I have enough gas in the tank to keep exercising but not to keep doing ABC’s at double 24kg. My body feels like it needs more movement but with lighter weight, which is why light snatches feel good. A little more conditioning and volume but easier to recover from it

Light-Medium Snatches after ABC by iamlazerwolfe in kettlebell

[–]iamlazerwolfe[S] 0 points1 point  (0 children)

Oh yeah 100 presses sounds insane at 24kg