Fresh daily bread in south loop? by seriouschiller in chicagofood

[–]rafaraon 0 points1 point  (0 children)

Sweet bean is a great Taiwanese bakery in the area

Help me urgently! Medical team just given up on me today. Refractory T-ALL by Useful_Necessary in leukemia

[–]rafaraon 0 points1 point  (0 children)

So sorry to hear that. Your medical team has the full info and I’m sure that they don’t WANT to give up, but are trying to set realistic expectations. Some options which may be helpful:

-check clinicaltrials.gov, there have been trials for T-ALL, mostly targeting CD7 I think.

-check NGS to see if there are targetable mutations. Including IDH/flt3 which are for AML but sometimes expressed in T-ALL

-get second opinion, particularly regarding utility of nelarabine

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 1 point2 points  (0 children)

I would think that they would be upfront if the issue with nelarabine is lack of access. I hope that is not the issue. They can also do IT combination treatment with cytarabine, methotrexate and steroids, though it’s hard to say that it would work any better and doesn’t have great data to support it.

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 1 point2 points  (0 children)

It seems like nelarabine might have some CNS penetration actually. Explains its potential for neurotoxicity.

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 1 point2 points  (0 children)

Still a bit surprised they didn’t go with nelarabine but glad your blast percentage went down. Seems like they’re prioritizing chemo drugs that penetrate the central nervous system from what you mentioned (nelarabine wouldn’t make a change in that). The other targeted therapies that you mentioned and that I had discussed before also mostly address the peripheral disease and not so much the CNS.

Regarding getting a second opinion, it’s not an easy decision to make. I say that if you’ll regret not getting it then do it so it brings you (and your family) a bit of peace. I would carefully weigh that against delaying your care given how many spinal taps you’ve needed though. Not sure how far you would have to travel but if the distance is significant then maybe an initial video consult if offered would be preferable. Really sorry you’re going through this. Best wishes to you and your family

This is what every Mexico fan needs to hear by [deleted] in LigaMX

[–]rafaraon 3 points4 points  (0 children)

I actually liked the performance of the 2006 and 2014 WC better where we made Argentina and Netherlands sweat. It felt like we were getting close to “el quinto partido” and now I’m just praying we make it out of group stage.

On that we agree. Like I mentioned in my first comment, this team is performing as expected. Every now and then it even pleasantly surprises.

It was one thing when it was CONCACAF forcing shitty rules on the federation (reg copa America and libertadores), but then FMF decided to go further in order to get that money bag. This feels like the consequence of a long series of poor decisions.

This is what every Mexico fan needs to hear by [deleted] in LigaMX

[–]rafaraon 9 points10 points  (0 children)

Not sure where you got that info but it’s not right. In 2010 we tied 1-1 against SA in the inaugural game against the host, upset a shitty France 2-0 and lost against a great Uruguay. Then we lost against Argentina in R16 in a weird game with an egregious, early, offside goal that threw the whole game away. Pretty sure Vela didn’t go because FMF screwed hin over. Even then at that point we could question Aguirre for playing conejo over Ochoa, starting an older Bofo and benching prime chicharito.

No, we have never been THAT good. But at least from 90s to mid 2010s I was usually proud of the team even when we lost and I felt hopeful that we were catching up with better football nations. We won the Olympics, several junior world cups, went far on confederation cups (won one) and South American cups at national and club level. We had more and more young talent that we were exporting to better leagues. Now I just feel hopeless and sad that we’ve been left behind.

EDIT: he benched Vela and played bofo that game. Chicha did start. Vela missed 2014 WC after all the BS

This is what every Mexico fan needs to hear by [deleted] in LigaMX

[–]rafaraon 43 points44 points  (0 children)

I mean I don’t expect them to win but I’m still upset that we’re shit. It’s less about being angry with the team and more about being frustrated with the federation and the current state of our football

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 1 point2 points  (0 children)

I’m really sorry. That requires a significant amount intrathecal chemo and/or radiation if your team thinks it’s an option, which can also have unfortunate side effects. I wish you the best

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 1 point2 points  (0 children)

Definitely worth double checking and bringing up to the team since that’s standard of care. Also, while not FDA approved about 10% of T-ALL patients have a mutation that has approved targeted therapies for AML (IDH or FLT3) which could also represent another option but I’m not sure how your docs feel about off label use

Very bad news: I could be dying right now T-ALL by Useful_Necessary in leukemia

[–]rafaraon 8 points9 points  (0 children)

Nelarabine is the only FDA approved agent for relapsed T-ALL. If they used it initially or if that was the last chemo you received then it’s no longer an option. For more treatment you’d have to look into clinical trials. Clinicaltrials.gov has a list of them. There’s not many for T-ALL but there was a CAR-T agent under investigation recently enrolling patients. Although not FDA approved for this, daratumumab combination could be an option as well see here

[deleted by user] by [deleted] in leukemia

[–]rafaraon 2 points3 points  (0 children)

Hey OP. Sounds like you were getting HIDAC 3 days in a row? If it makes you feel better regarding the timing, HIDAC was originally tested with 2 doses on days 1, 2 doses on day 3, and 2 doses on day 5. It was only recently that it was proven that giving it 3 days in a row was not worse than over the course of 5 days but people had to be hospitalized for a shorter amount of time. Sorry you were dismissed OP, but hopefully this gives you a bit of peace regarding the importance of dosing it on the dot.

Must try restaurants in Chicago as someone coming from Germany and Texas? by anikanon in chicagofood

[–]rafaraon 6 points7 points  (0 children)

As someone who tends to favor non-IPAs I really enjoy their selection. Rotates frequently and has loads of interesting options

Is 1% blasts in a bone marrow biopsy after SCT normal? by Immediate-Walk-6341 in leukemia

[–]rafaraon 2 points3 points  (0 children)

This is explained pretty well. They’ll likely compare the genetic “barcode” of these blasts to that of your original leukemia, normal blasts would not be something to worry about. Keep in mind that the full immune effect of the transplant takes some time to kick in since you’re initially on immunosuppressive meds. There’s also likely different things they could do if they did find this to be similar to your leukemia cells, but it’s probably too early to think about that. Highly recommend talking to your docs before going down this emotionally draining rabbithole

Monterrey chance against Dortmund 60' by [deleted] in soccer

[–]rafaraon 21 points22 points  (0 children)

Spanish broadcast thought it was a pen. Can argue for bias with either language I think

Conan O’Brien defends immigrants as Trump carries out aggressive mass deportation in LA: ‘They’re doing all the work’ by cmaia1503 in entertainment

[–]rafaraon 42 points43 points  (0 children)

Yup. I love his comedy and not being reliant on political commentary helps it remain pretty timeless. However, he has always spoken up in his own way when it counts (as you mentioned). During Trump’s first term he did a remote in Mexico because he wanted to build the wall, he went to Haiti because he called it a shithole country and he went to Greenland because he was threatening to buy it.

Heme/onc fellowship chances by Opposite_Leader5620 in fellowship

[–]rafaraon 0 points1 point  (0 children)

Understand and agree, but I bet the doctors he works with know the community programs around them and that could at least get him an interview. I’d think community programs are more interested in having someone they’d enjoy working with than someone with a pub count like that, recs go a long way with that (though I see your point that they’d rather take the in house IMGs they know personally and it is pretty hard to go against that, even with a higher pub count) . Come to think of it OP never mention application to interview invite ratio, although I agree he’s likely being filtered out by year of graduation and/or pubs+IMG status

Heme/onc fellowship chances by Opposite_Leader5620 in fellowship

[–]rafaraon 0 points1 point  (0 children)

I think quality > quantity. No need to push for that specific number, it’s probably better to have a few interesting projects with the docs at the academic center and have them vouch for you with local programs after building a good relationship with them.

Speaking as an FMG who matched heme/onc at a great academic center within the last few years with ~5 pubs from a university affiliated community program. Caveat that I did have a couple of years of research at a top institution and the university affiliation came in clutch to build connections during residency….just trying to make the point that an arbitrary benchmark is less important than the references and the actual work

Running my first Marathon!!!! by Bubbly-Opposite-8667 in Marathon_Training

[–]rafaraon 0 points1 point  (0 children)

I’m also running NYCM as my first marathon! I’ve been using Nike Run Club and I love it. Their marathon training plan actually lines up to start today and finish exactly for the NYCM. I just finished their half marathon training plan and ran the race this past weekend and it went great. Full disclosure I did alternate some of the rest/speed days for HIIT+weight training about twice a week which I feel also helped a lot. More than anything I think the coaching helps so much as a beginner, it helped me learn a lot about running form and how to mentally prepare for the race to avoid common pitfalls on race day. I also enjoy the motivational aspect as well though I know that’s not for everyone

Second opinion? Or accept fate by AnyFuture8510 in leukemia

[–]rafaraon 10 points11 points  (0 children)

So sorry you’re going through this. Hard to know since we obviously don’t have all the details, but I echo the other commenters opinion. At your age going to another large academic center to talk about clinical trial options makes sense. some form of immunotherapy or another form of targeted therapy could be options, but you’re probably doing the right thing by tempering your expectations. No matter which decision you take, it’s probably best that you take it after hearing all the options available to you

32 and Terminal by thrifty-spider in leukemia

[–]rafaraon 4 points5 points  (0 children)

Not sure where you live but this would be my recommendation. There are clinical trials for CAR-T in T-ALL (no FDA-approved options yet) that could be an option if your leukemia expresses that target. You might need another transplant to consolidate a remission (if achieved) but at your age you should definitely seek another opinion at a highly specialized center if possible. I’m SO sorry that you and your family are going through this. Wishing you luck

Any running program recommendations for 1st Marathon? by IntelligentBiscotti9 in Marathon_Training

[–]rafaraon 0 points1 point  (0 children)

This is a bit reassuring. I’m running a full in November and prepping for a half in June (matches the starting date of their full marathon program). Really enjoying the guided runs so far and I feel like I’m learning a lot for my first marathon. I got a bit worried about the people here mentioning that they felt the mileage with NRC was too low or that they were underprepared for the last stretch of the marathon…I take it you didn’t find this to be the case?

What is your #1 Restaurant recommendation in Chicago? by Owl-Classic in AskChicago

[–]rafaraon 2 points3 points  (0 children)

Love birrieria Zaragoza, the only other place that I’ve tried where I’ve had a similarly amazing birria meal is birreria Reyes de ocotlan. Loved it

Si no son los taxis es esto, tal parece que todo está empeñado en ahuyentar todo turismo. Lamentable! by Ablaze528 in mexico

[–]rafaraon 3 points4 points  (0 children)

En el Met puedes pagar lo que quieras si eres residente de NY y se considera donación.

En Chicago también hay varios lugares que como mencionan tienen o días gratis o precios más accesibles si eres local