#BTSM Transcript
Healthcare social media transcript of the #BTSM hashtag.
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See #BTSM Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Liz Salmi @TheLizArmy @adamhayden Are you still using your phone for the tweet chat? #newbie #btsm |
 | St_Molly_AgentofChaos @Lifeiskitsch I do it from my phone, too... o.O #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch #btsm MOLLY. Age 37. Grade 3, Anaplastic Astrocytoma. Diagnosed last October, post-left temporal craniotomy. |
| Liz Salmi @TheLizArmy @BTSMchat Liz here. Dx'd w/grade II astrocytoma in 2008. 2 brain surgeries. 24 months Temodar. Damage to parietal lobe. Etc. #btsm |
 | Melanie Kabo @MelanieKabo Melanie here, with a rediagnosis after surg #5 last July of AA3, and currently on Temador (again) while doing IMRT radiation(1st time) #btsm |
| Liz Salmi @TheLizArmy @MelanieKabo Great to see you here Melanie! Thanks for jumping over from the Facebook side. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch #btsm some of my Henry Ford Hospital (@HenryFordNews) patients, nurses, cancer team friends may be silently observing this discussion, btw. |
 | Erica Robinson @eleighrobs Just listening @BTSMchat #btsm 👋🏻 |
| Liz Salmi @TheLizArmy @adamhayden Man, that sounds like the intro to a rap song. #btsm |
 | Dr. rer. pol.Sabine Schwab @Sabine_NJ I'll be following the #btsm tweet chat tonight. All tweets within the next 60 min will be related to this chat. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ Hi! It's Sabine! AA3, 3.5 years stable as of last Friday! BT advocate and ABTA Advisory Council Member. #btsm |
 | Kathy @kschrock997 Just listening 18 months post dx GBM #BTSM |
 | Charlie Blotner @CBlotner_ @BTSMchat Hi everyone! Tuning in from a cafe in Seattle this evening. 5 years since my grade II astro resection w/o recurrence! #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch Welcome to @HenryFordNews friends! We love Molly. #btsm |
 | Emily K. Drake @EK_Drake @BTSMchat #BTSM - Emily Drake - #PhD #Health student. Just listening while I work away! Love to you all! |
| Liz Salmi @TheLizArmy @kschrock997 Welcome Kathy! We've got other GBM-ers here tonight as well. Jump in anytime. #btsm |
| Charlie Blotner @CBlotner_ @kschrock997 Thanks for joining us tonight, Kathy! Is this your first chat? We love having newcomers. :) #btsm |
| Charlie Blotner @CBlotner_ @adamhayden @TheLizArmy The best looking up button ups and jeans, I might add. #btsm |
| Liz Salmi @TheLizArmy @adamhayden I'm curious about ages here. It seems like there are quite a few of us in our 30s. 38 and proud over here! #btsm |
| Kathy @kschrock997 Yes, 1st chat #btsm |
| Ina Cunningham @inacunningham14 #BTSM |
| Kathy @kschrock997 46 #btsm |
| Liz Salmi @TheLizArmy @cre8ivered Welcome, Rebecca and hubs! I am also at UCSF. Dr. Clarke patient, myself. #btsm |
| Liz Salmi @TheLizArmy @InaCunningham14 We see you, Ina! Welcome. Jump in anytime. #btsm |
 | Michael Nathanson @Nathanson_MJ #BTSM |
| Charlie Blotner @CBlotner_ @cre8ivered High-5 for the five year mark - same here! I'm a UCSF patient with Dr. Berger. #btsm |
 | The Brain Institute of America @brainamerica yes first chat 36 started my company after my father passed of stage 4 GBM #btsm |
| Liz Salmi @TheLizArmy @Nathanson_MJ WHAT! Is Michael Nathanson in the house tonight?! We might be in for a treat. :) #btsm |
| Charlie Blotner @CBlotner_ @Nathanson_MJ Thanks for joining tonight! Feel free to chime in whenever. We're always happy to have NBTS faces in the mix. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch (#btsm btw, I’ll be sharing this convo with my neuro team...) |
| Charlie Blotner @CBlotner_ @adamhayden @LisaJaayyy That makes three of us. (insert open mouth teeth emoji) #btsm |
| Liz Salmi @TheLizArmy @braininstitute1 Wow! How long was it since he has passed? #btsm |
| Kathy @kschrock997 #btsm heard about it, but no |
 | Guy Lipof - גיא @Project2Program I'm Guy, husband of Susie who is a long term survivor of 17 years (G3 OA and G4 Secondary GBM, #IDH1). I work on #IBMWatson. #BTSM |
| Liz Salmi @TheLizArmy @cre8ivered She's so great. I am friends with a few of her patients. She's a new doc for me. Just saw her in May for 1st time. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T1: Yes, kept, but stopped. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch #btsm T1. Currently about 2 months into keto, but only a few more months of Temodar left. Late start. Not “perfect” w the diet. |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ kept = keto (autocorrect error) #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch Oooh! Let us know what your neuro-team thinks about this convo. :D #btsm |
| Charlie Blotner @CBlotner_ How cool is it that #btsm patient conversations get relayed to the neuro team at @HenryFordNews to improve care? https://t.co/ZDSf8FuKgY |
| Liz Salmi @TheLizArmy @BTSMchat T1: Heard abt it, but no. I am curious about keto. Neurologist told me about the diet for seizure control back in 2008. #btsm |
| Guy Lipof - גיא @Project2Program I'll mostly be listening, as we do not have first hand experience w/ ketogenic diet. #btsm |
| Liz Salmi @TheLizArmy @Project2Program Guy! Welcome. Please tell Susie I say hello. #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch Were you advised to start right away with the diet? #btsm |
| Melanie Kabo @MelanieKabo Heard about Keto, but no, I follow a raw vegan diet and wouldn't know how to make that keto. #btsm |
| Liz Salmi @TheLizArmy @2016KMR Thanks for listening! Feel free to jump in anytime. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat T1. Heard about it, but no. One of my summer campers years ago was using for epilepsy. Ended up looking it up to learn more! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy No, I just seem to recall the speakers from @theABTA saying to start ASAP. But that may be a false memory... #btsm |
| Liz Salmi @TheLizArmy @adamhayden @MelanieKabo Yes, seems difficult. If only there was a Blue Apron for keto... #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ I had the same thought the other day! @TheLizArmy: @adamhayden @MelanieKabo If only there was a Blue Apron for keto... #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat Can I just say that I love that "keto" has become a verb in regards to this conversation and the promo for it? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ @TheLizArmy @adamhayden @MelanieKabo That would be the best thing ever... seriously. #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ If you like "keto" as a verb, blame @adamhayden, who designed tonight's topic questions. ;) #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T2: Books, online, nutritionist, and keto support groups #btsm |
| Melanie Kabo @MelanieKabo "Eco-Atkins" 😂😂😂 https://t.co/auAmxnQF1p |
 | Yarrow @yarrowsr @BTSMchat Yarrow, 48, on #keto for #epilepsy 16 months & still seizure free. #btsm |
| Emily K. Drake @EK_Drake #btsm chat going on now for all who are interested!! |
| Liz Salmi @TheLizArmy @Lifeiskitsch @Sabine_NJ @adamhayden @MelanieKabo So if @blueapron made a ketogenic box offering, are we all in? #btsm |
| Liz Salmi @TheLizArmy @elkmama3 How long did you have epilepsy before starting the keto diet? Congrats on the seizure control, BTW. #btsm |
| Melanie Kabo @MelanieKabo @TheLizArmy @Lifeiskitsch @Sabine_NJ @adamhayden @MelanieKabo @blueapron If they made one raw vegan, I'd do it in a heartbeat!! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @Sabine_NJ @adamhayden @MelanieKabo @blueapron I would say @realhomechef because that’s what we do, but YES, #keto please! #btsm |
| The Brain Institute of America @brainamerica Cellular metabolism is largely disrupted in tumors, especially brain tumors. keep a low sugar diet if possible. #btsm |
| Charlie Blotner @CBlotner_ T2: I learned @QuestNutrition have an entire line of keto foods from @Carefree411! Epilepsy and brain cancer became a market - hah! #btsm |
| Charlie Blotner @CBlotner_ @elkmama3 Wow! At what point do you think being #keto started making a difference for you? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden @TheLizArmy @theABTA Wait. Definitely yes. She wrote me an email back so I could send to diet person at my hospital. #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T2: I haven't tried the keto diet. I was turned off by the Atkins craze in the mid-2000s, and keto sounds similar. Thoughts? #btsm |
| Liz Salmi @TheLizArmy @EK_Drake Thanks for joining the convo and promoting, Emily! Great to see your face in the #BTSM tweets. |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T2. Well, @ascarbs (UK) is great. I also emailed 2 people who gave talk at @theABTA conference. Also, friends who do keto. #btsm |
 | Debi Cirasole @DebiCasserole @BTSMchat #BTSM Fashionably late, to listen. |
| Debi Cirasole @DebiCasserole RT @Lifeiskitsch: One thing I get a LOT is how healthy I look. Which is super. But I have cancer. In my brain. Sooo I look fine, but also am not fine. #btsm |
| Yarrow @yarrowsr @TheLizArmy 25 years. Was able to titrate off meds w/ keto last year. Now only take rescue meds a few times a month. #btsm |
| Liz Salmi @TheLizArmy @DebiCasserole Great to have you here! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden @TheLizArmy @theABTA I actually sent her info to the HF dietician. So hopefully they were able to connect. #btsm |
| Liz Salmi @TheLizArmy MOST IMPORTANT QUESTION OF THE NIGHT: Can you drink black coffee on the ketogenic diet? #btsm |
| Charlie Blotner @CBlotner_ T2 cont. I also wonder how many ppl with #epilepsy/who are #keto actually know about @QuestNutrition's line? https://t.co/tAzN9hMdRw #btsm |
| Melanie Kabo @MelanieKabo How much weight did you lose, if any? https://t.co/nJyCK9JjgT |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden T2. I really struggle with getting scrambled, so the books I have don’t help. I must have simple instructions... 1/3 #btsm |
| Charlie Blotner @CBlotner_ @elkmama3 Ok, not I'm impressed. How would you compare quality of life pre-post being #keto in terms of food satisfaction? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @btsmchat You can absolutely drink black coffee! #btsm |
| Melanie Kabo @MelanieKabo @TheLizArmy Or Green Tea for us non coffee drinkers (sorry Liz, lol)? #btsm |
| Charlie Blotner @CBlotner_ @CBlotner_ @elkmama3 *now I'm impressed! #btsm |
| Melanie Kabo @MelanieKabo RT @Sabine_NJ: @TheLizArmy @btsmchat You can absolutely drink black coffee! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden T2. ... & why I’m always “winging” things. 2/2 #btsm |
| Debi Cirasole @DebiCasserole @BTSMchat T1: Heard abt it, but no. My N.O. says it's not proven + low blood sugar is a seizure trigger for me. #btsm |
| Guy Lipof - גיא @Project2Program T1: Heard about diet, but appetite was a significant issue during treatments. Even without Keto, experienced significant weight loss. #BTSM |
| Glioman @glioman_ @adamhayden @BTSMchat T1. Quite similar here: this week one 53h fast + 2x 24h fast, but I usually do 16-8 at least twice weekly. #btsm |
| Liz Salmi @TheLizArmy @adamhayden By "hit the books," do you mean do your own research, look up journal articles, but you're having problems w/paywalls? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @MelanieKabo @TheLizArmy @btsmchat Yes! I don't drink coffee either, but 64oz of green tea per day. No problem while on keto! #btsm |
| Yarrow @yarrowsr @CBlotner_ When I was able to titrate off two AED's without seizures. Still taking it a day at time though. Notice more auras if I'm not careful. #btsm |
| Emily K. Drake @EK_Drake @TheLizArmy Thanks! Wish I could join more!! You guys do such great work! All of you in the #BTSM community |
| Charlie Blotner @CBlotner_ @glioman_ @BTSMchat Great to hear about the easy transition! Don't forget to use https://t.co/XpTSa38Ja1 or add #btsm at the end of each tweet so all can see. |
| St_Molly_AgentofChaos @Lifeiskitsch @MelanieKabo You’re not asking me, but I’m only down 6lbs but also still on a big dose of steroids (kicks out of ketosis) for 5 days every month. 😑 #btsm |
| Debi Cirasole @DebiCasserole @TheLizArmy @BTSMchat Yes, it is very similar to Atkins. #btsm |
| Liz Salmi @TheLizArmy QOL, so important. If I only have X yrs left to live, I want slices of birthday cake. #BTSM https://t.co/LzTyz4GC7n |
| Charlie Blotner @CBlotner_ The important questions. ☕️ #btsm https://t.co/fsU6VbhZjX |
| Melanie Kabo @MelanieKabo Love my @NumiTea Gunpowder Green Tea!! It's my savior while on radiation and this round of chemo. https://t.co/WlkqmGqr4D |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ 1/2 T3: NO wanted me to do it supervised, e.g. with nutritionist. Here is the irony: Sloan's in-house nutritionist #btsm |
| The Brain Institute of America @brainamerica who is having challenges with paywalls? #btsm |
| Yarrow @yarrowsr @CBlotner_ It has been a challenge, I was a chef so that helped. Going out is hard. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ 2/2 T3: was not allowed to counsel on the keto diet. I ended up using somebody else. #btsm |
| Glioman @glioman_ @BTSMchat T3. But when sharing study results and rationale behind keto, they seem to open up a bit. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ @TheLizArmy @BTSMchat But why would you do that when you can make creamy, butter coffee? #btsm https://t.co/OldTqKitgf |
| Liz Salmi @TheLizArmy @braininstitute1 We all have challenges with getting access to journal articles. Most things beyond abstract cost $$. #btsm |
| Melanie Kabo @MelanieKabo @Lifeiskitsch 6 pounds is still weight lost. Weight gain is one of my fears in going Keto #BTSM |
| Liz Salmi @TheLizArmy @cre8ivered I have NOT asked Dr. C about this. After this chat I am planning to bring up when I see her in November. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T3. Generally, they will support me with it but can’t offer much more than what I already know. #btsm |
| Debi Cirasole @DebiCasserole @BTSMchat T3: My neuro-oncologist said, "there is no conclusive evidence that it works and previous studies have shown that it's ineffective". #btsm |
| Yarrow @yarrowsr @CBlotner_ Finally getting off AED's has been such an improvement in quality life. Going #keto totally worth it. #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch I have yet to try butter coffee! I totally will. Keto or not! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @MelanieKabo Nah, you really would have to be “doing it wrong” to gain, I would think. #btsm |
| Charlie Blotner @CBlotner_ @DebiCasserole How might we use data the #btsm & #epilepsy communities have gathered to fuel a #keto patient reported outcomes study? #medx |
| Liz Salmi @TheLizArmy @elkmama3 I love the idea of going off AEDs, but if I have a seizure, there goes my driver's license. Priorities. #btsm |
| Glioman @glioman_ @elkmama3 @BTSMchat @TheLizArmy Going out hard but not as hard as for a vegan.Matter of choosing dish that fits the most, not eat too much, get calories at home. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @Lifeiskitsch @MelanieKabo Agreed! I was never "healthier" than I was during my keto days....well... except the bt diagnosis ;-) #btsm |
 | Dr. Miriam Knoll @MKnoll_MD #btsm https://t.co/UmYLQcDOkG |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy It’s so fraking good. I was hooked on it when I was doing “paleo” diet a few years ago. People thought I was nuts. But it’s awesome. #btsm |
| Charlie Blotner @CBlotner_ @adamhayden @QuestNutrition Uh...pretty sure you're a body builder. Building all of our bodies and brains up with knowledge, that is. #btsm 💪🤓💪🤓💪🤓💪 |
| Liz Salmi @TheLizArmy @MKnoll_MD Thanks, Dr. K. #btsm |
| Glioman @glioman_ @BTSMchat T2. DietDoctor, pubmed, dom d'Agostino, YouTube, etc. #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy @elkmama3 High stakes indeed. #btsm |
| Guy Lipof - גיא @Project2Program T3: We've had nutritionists mention caloric restricted diets, but never as a mono-therapy and more around trying to combat fatigue. #BTSM |
| Liz Salmi @TheLizArmy @MelanieKabo @Lifeiskitsch I imagine going keto is not enough. Along w/diet change, would I also need to alter exercise behavior? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @MelanieKabo @Lifeiskitsch to achieve what exactly, Liz? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @MelanieKabo As far as I understand, you shouldn’t need to exercise at all. I do it because I’m stubborn. #btsm |
| Liz Salmi @TheLizArmy @Project2Program Keto was originally "prescribed" to decrease seizure activity. Recent research suggests helpful for ppl w/glioma. #btsm |
| Liz Salmi @TheLizArmy @adamhayden What is MCT oil? I've heard you mention that a few times. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @adamhayden @Sabine_NJ @TheLizArmy @BTSMchat Lol, I don’t have those issues! My body is like a fine-tuned machine! #btsm |
| The Brain Institute of America @brainamerica well let me know if 1 or 2 papers interest you and let me see if i can request through our library #btsm |
| Guy Lipof - גיא @Project2Program Yarrow, how has getting off AEDs improved your quality of life? Did you experience significant side effects? @elkmama3 @CBlotner_ #BTSM |
| Charlie Blotner @CBlotner_ @TheLizArmy How would we measure patient "adherence" to something like this? By increase/decrease in seizures? Doesn't work for all..? #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ If there is a diet change as extreme as keto, would it necessitate a corresponding change in activity level? #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy @Sabine_NJ It sure would for me! I'd imagine there would be far fewer naps + far more time in the day to get things done. #btsm |
| Liz Salmi @TheLizArmy @CBlotner_ There would have to be a food log, and ppl would have to be meticulous at tracking that plus seizure activity. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy @btsmchat I see. Not at all. I felt fitter and had more energy, so I was more active naturally. #btsm |
| Liz Salmi @TheLizArmy @adamhayden: @braininstitute1 is offering to get you beyond some paywalls. #btsm |
| Melanie Kabo @MelanieKabo Does anyone on keto worry about their hearts with all the cholesterol? #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @CBlotner_ @TheLizArmy See, that’s the hardest part I think. It’s REALLY hard to do the diet right without being 100% observed. #btsm |
| Yarrow @yarrowsr @Project2Program @CBlotner_ Yes, lethargy, brain fog, memory issues, cognitive decline, weight gain, heart palpitations, etc. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @MelanieKabo My nutritionist was more worried about the liver bc of the high fat. #btsm |
 | Shirley Otis-Green @sotisgreen In the audience-but only briefly! @SenSanders #btsm @BTSMchat https://t.co/oQ0KW4gEzc |
| Liz Salmi @TheLizArmy @Sabine_NJ I exercise a lot already. Lots of strength training. W/keto I'd be concerned I would burn out halfway through workout. #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy Hmm. That's what I did for my camper. She was new to keto but already not a fan. Change in diet for kiddos tougher I bet. #btsm |
| Liz Salmi @TheLizArmy @sotisgreen Hey Shirley! And thanks for tagging... @SenSanders? ;) #btsm |
| Guy Lipof - גיא @Project2Program @TheLizArmy Yep, problem is Susie LOVES sugar and cream in her coffee every morning. Nevertheless, we have thought about how to get off AEDs. #BTSM |
| Melanie Kabo @MelanieKabo A4- my NO said diets that are good for the heart are good for the brain, He like a Mediterranean diet, but I don't do that either. #btsm |
| Glioman @glioman_ @MelanieKabo @BTSMchat Got my blood tested after 5m on keto. Every single measure was way better than normal, Inc chol, tryglicerides, liver function #btsm |
| Liz Salmi @TheLizArmy @BTSMchat T4: I 1st heard about keto here on the #BTSM Twitter-webs. This convo might've convinced me to at least ask my doc about it. |
| Charlie Blotner @CBlotner_ A4: Probably more research showing significance of the usage or not. If I'm going to butter&ranch my food away, I want to know impact. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @BTSMchat T4. I don’t need my mind changed. I just need help to know if I’m doing it right. Will the hospital know the proper bloodwork? #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy MCT=medium-chain triglycerides, a saturated fatty acid. Easier to digest than LCT (L=long) and more health benefits #btsm |
| Liz Salmi @TheLizArmy @adamhayden We are here, Adam: https://t.co/30IUumTbsF #btsm |
| Shirley Otis-Green @sotisgreen So happy for that news! @CBlotner_ #BTSM https://t.co/XErQeYqJkb |
 | Matt Cotcher @MLCotcher A4: I'm open to the idea of keto, but need hard scientific evidence that it is a substantial improvement over nutrition & exercise. #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ So what you are saying is, keeping eating all the almonds, salmon and avocado I already eat? #btsm |
| Yarrow @yarrowsr @CBlotner_ @TheLizArmy This is why it wasn't used for adults in the past. Need serious patient dedication, education, self observation ,etc. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @Sabine_NJ I ran 9 miles today, Liz. I didn’t eat. I had Bulletproof Coffee before— that’s all. I was fine. Good, even. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy Eactly! That is what I am doing since I came off of keto. #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy @Sabine_NJ Granted, make sure you’re used to MCT oil before doing something like that or you’ll need to take a poop in the middle of the run. #btsm |
| Liz Salmi @TheLizArmy @Lifeiskitsch Wait, you ran 9mi but didn't eat anything other than coffee & butter? If it works for you, cool. Would not work for me. #btsm |
| Charlie Blotner @CBlotner_ Community involvement leads to patient engagement during appointments. #btsm https://t.co/Mq1fVVLZOP |
| Liz Salmi @TheLizArmy @Sabine_NJ Oh! Then that is how I already eat. But I also consume fruits and vegetables that contain carbohydrates. #btsm |
| Charlie Blotner @CBlotner_ @LisaJaayyy This just popped up in my feed again, and I read it as "very awake cranio," to which I replied aloud: "same" #btsm 😂 |
| St_Molly_AgentofChaos @Lifeiskitsch @TheLizArmy Oh, & a spoonful of peanut butter. You will be surprised at how full that coffee will make you! #btsm |
| Glioman @glioman_ @Lifeiskitsch @BTSMchat All cholesterol + tryglicerides+ liver function seems pretty standard to me. Issue chores from sdLDL not being standard bloodwork #btsm |
| Charlie Blotner @CBlotner_ @melissamazza @Lifeiskitsch @BTSMchat @TheLizArmy Explain what you mean with "MAD"? And, don't forget to add #btsm to the end of your tweets so that everyone can see! |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ @TheLizArmy So do I - now. I learned to listen to my body while on keto. I quit bc I wanted to cut out dairy. #btsm |
| Charlie Blotner @CBlotner_ @EmilySuess We're always happy to have you, regardless of the time you can make it! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ @MelanieKabo Nah, not at this time. #btsm |
| Melanie Kabo @MelanieKabo Signing off early to cut my 8 year old son's hair! Night all. Have a great October and talk to you in November. #btsm |
| Glioman @glioman_ @Lifeiskitsch @BTSMchat @CBlotner_ @TheLizArmy I do it on my own, with an optium neo meter to check for glucose + ketosis. Then I adapt based on how I feel. So far, great. #btsm |
| Liz Salmi @TheLizArmy @Sabine_NJ I'll pull a Michael Pollen: Don't eat anything your great-grandmother wouldn't recognize as food. #btsm |
 | melissamazza @melissamazza @CBlotner_ @Lifeiskitsch @BTSMchat @TheLizArmy Sorry! Modified Atkins which is a less stringent version of ketogenic which allows more protein intake. #btsm |
| Charlie Blotner @CBlotner_ @MelanieKabo I love the haircuts that you give your kiddos! Have a good night! #btsm |
| Glioman @glioman_ @BTSMchat We need more human-based trials, but very tough when it comes to diet. Until then everyone is a guinea pig. #btsm |
| Liz Salmi @TheLizArmy @KennyKane We've been Kenny Kane-d! #btsm |
| Liz Salmi @TheLizArmy @glioman_ Great point! Who makes money off of diet modifications? No one, if it's real food. That's why this research isn't happening #btsm |
| Glioman @glioman_ @BTSMchat Also, one should not engage into it looking for a cure, but just if the diet seems enjoyable to them. Works well for me thus far. #btsm |
| Liz Salmi @TheLizArmy @EmilySuess That #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ T4: I like that nutrition finally becomes part of symptom management! Yay for integrative approaches! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @Sabine_NJ @TheLizArmy I eat a lot of fish now & sometimes my protein is much higher than it should be. Today it was higher than my fat! 😤 #btsm |
| The Brain Institute of America @brainamerica also a tough thing to put in a clinical trial. exercise and nutrition is just coming into the clinic for breast and other tumors. #btsm |
| Liz Salmi @TheLizArmy @cblotner_ @glioman_ This could be a @PCORI project. #btsm |
| Charlie Blotner @CBlotner_ @BTSMchat Hmmm. Is my limited knowledge base about #keto re: butter and ranch true? How often do those who #keto each butter & ranch? #btsm |
| The Brain Institute of America @brainamerica will take some time in the brain cancer space. but if patients push for it. it would help #btsm |
| Liz Salmi @TheLizArmy @braininstitute1 When ppl are on clinical trials, are they asked about diet and exercise factors? #btsm |
| melissamazza @melissamazza @CBlotner_ @Lifeiskitsch @BTSMchat @TheLizArmy I find I have more energy and less pain. I am also exercising which is the other key.#btsm |
| Glioman @glioman_ @TheLizArmy That and the control vs keto. What do you compare with? What do keto people eat? Keto is just a word, many foods can be in it. #btsm |
| melissamazza @melissamazza @CBlotner_ @Lifeiskitsch @BTSMchat @TheLizArmy I have Cowdens and have had thyroid, breast and brain tumors. Epilepsy and trigeminal neuralgia are as result of brain surgery#btsm |
| Liz Salmi @TheLizArmy @CBlotner_ I am dying about how obsessed you are over ranch and butter. #btsm |
| Dr. rer. pol.Sabine Schwab @Sabine_NJ RT @BTSMchat: Mark your calendars for the next #BTSM chat: Sunday, November 5 (first day of Daylight Saving Time)! |
| The Brain Institute of America @brainamerica @TheLizArmy depends on researcher. my institute is more than biomedical. trying to bridge clinic with academics. could look into it #btsm |
| Charlie Blotner @CBlotner_ @TheLizArmy 🤷🏻♂️🤷🏻♂️🤷🏻♂️🤷🏻♂️🤷🏻♂️ #btsm |
| Guy Lipof - גיא @Project2Program @CBlotner_ The diet is highly restrictive. There are athletic study results comparing standard, cyclical and targeted keto diets. #BTSM |
| St_Molly_AgentofChaos @Lifeiskitsch AFTERTHOUGHT: seems like 1 thing I told at hospital before this diet was, “cut down the sugar.” That & the carbs— that’s something. #btsm |
| Glioman @glioman_ @BTSMchat Example of a standard keto day, based on a 16-8 fast: lunch 2pm (omelette + avocado + spinach + French vintage cheese) [1/2] #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch @Project2Program @CBlotner_ It’s so hard. I hate being such a speaker for it because I know I’m not doing it right.. #btsm |
| Liz Salmi @TheLizArmy My big takeaway from tonight's #BTSM chat: Ppl living w/brain tumors just want to know what's healthy. We will do it, we just want guidance. https://t.co/jeitsfxBzu |
| Rob Thomas @Homeopath20Rob RT @TheLizArmy: My big takeaway from tonight's #BTSM chat: My big takeaway from tonight's #BTSM chat: Ppl living w/brain tumors just want to know what's healthy. We will do it, we just want guidance. https://t.co/jeitsfxBzu |
| The Brain Institute of America @brainamerica https://t.co/sCIXjSrM0M #btsm |
| Charlie Blotner @CBlotner_ @adamhayden @BTSMchat Tbh this is the answer we all want and need to hear, @TheLizArmy. #btsm |
| Matt Cotcher @MLCotcher For great insight into the Keto diet & glioma patient's perspectives on it, be sure to read @BTSMchat's chat on it. Solid info! #btsm |
| The Brain Institute of America @brainamerica @adamhayden send topics again, i can try to find papers if want #btsm |
| Glioman @glioman_ @BTSMchat Dinner: cod liver/mackerels/salmon/sardines+avocado+berries+92% dark choc+Mac. Nuts+Chestnut. With lunch+dinner: tea w/ mct oil. [2/2] #btsm |
 | Robyn Stoller @CancerHawk RT @CBlotner_: The adolescent & young adult cancer community, organizations that serve, & issues at hand are back in action 10/3 @ 5pm PT/8ET #ayacsm #btsm https://t.co/8dtuL3CdAI |
| Guy Lipof - גיא @Project2Program @Lifeiskitsch @CBlotner_ I have a tough time planning dinners in general, and that's without restrictions :-). #BTSM |
| Liz Salmi @TheLizArmy @Project2Program A few of us were saying there needs to be a @blueapron for Keto (if keto is indeed recommended) @Lifeiskitsch #btsm |
| Liz Salmi @TheLizArmy RT @MLCotcher: For great insight into the Keto diet & glioma patient's perspectives on it, be sure to read @BTSMchat's chat on it. Solid info! #btsm |
| Guy Lipof - גיא @Project2Program Thanks @BTSMchat and everyone involved today! I have some food for thought to consider. Until next month, ciao! #BTSM |
| Glioman @glioman_ @CBlotner_ @adamhayden @BTSMchat @TheLizArmy Yes, for all meat, I always go for grass-fed (which I don't believe is always the case): best Omega 3-Omega 6 ratio #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch RT @MLCotcher: For great insight into the Keto diet & glioma patient's perspectives on it, be sure to read @BTSMchat's chat on it. Solid info! #btsm |
| St_Molly_AgentofChaos @Lifeiskitsch Good to check this out! https://t.co/flhAiVNWIZ |
| The Brain Institute of America @brainamerica now i want salmon or cod. thanks #btsm ! better than my veggie pizza #btsm |
#BTSM content from Twitter.