Sarcoma Ninja

Wife, Patient Advocate, Proud Mama Bear, All Things Sarcoma

[Sarcoma Ninja @SarcomaNinja]

It’s great to shine a light on this disease! “Fascinating” it is not. My husband was diagnosed with Pulmonary Arterial Intimal Sarcoma after emergency open heart surgery one year ago. Misdiagnosed 2x. Let’s look deeper when symptoms present as clot/thrombosis 🙏🏻

[Dr. Purvi Parwani @purviparwani]

A 66-year-old male with HTN, HL presents with crushing chest pain.

Who would have thought of this?
A fascinating case of PA sarcoma on #yesCCT

#ACCImaging #CVimaging
#JACCcasereports

https://t.co/nEmrTBMdKT

[Sarcoma Ninja @SarcomaNinja]

@LondonBreed Homelessness in SF is big business and profitable, will never stop. City Hall should survey where the homeless are from/when they arrived here and why SF. Start looking at trends and reach out to the cities they are coming from.

[Sarcoma Ninja @SarcomaNinja]

@DeanPreston @shamannwalton Have either of you inspected how the housing provided to homeless looks after 2 wks of occupancy? I dare you to inspect. B4 housing is offered training and consequences re: behavior that disturbs other tenants/sm business must be implemented. Invite them to ur home!

[Sarcoma Ninja @SarcomaNinja]

@schoffski I’d love to tell you about #pembrolizumab (#keytruda) treatment @ $130k per for Intimal sarcoma pulmonary artery- caused husband’s immune system to attack myelin sheath around spine paralyzing him 7 months #gbs

[Sarcoma Ninja @SarcomaNinja]

@matt_castaldo I’m sorry you have to deal w this. These are recent shots across St from @stregishotels @SFMOMA @thefourseasons in @YBGFestival Homelessness is big big business here in SF and not going away. More lucrative than tourism. Deep dive into the budget for answers @LondonBreed

[Sarcoma Ninja @SarcomaNinja]

@dlschermd @ColumbiaMed @PennMedicine You’ve been a great friend and supporter for our family. We couldn’t have made it this far without you and Pam. The info you’ve provided us has been lifesaving. ❤️🙏🏻 #sarcoma @UCSFCancer

[Sarcoma Ninja @SarcomaNinja]

@JeanBismuth Why do you each look like ur up to no good?

[Sarcoma Ninja @SarcomaNinja]

Just another #sundayvibes walking the dog in SF. @YBGFestival @LondonBreed @GavinNewsom @MattHaneySF @sfchronicle @kron4news @chesaboudin What about my #mentalhealth having to see this after losing a nephew to #heroine Husband has #sarcoma and we just want to enjoy the park.

[Sarcoma Ninja @SarcomaNinja]

@schoffski Thank you for this! 💕🙏🏻

[Sarcoma Ninja @SarcomaNinja]

@jhoronjeff @savvy_coop I have over 100 discs 🫀🫁 now all sarcoma Medical records, current meds, treatments, timelines and images stored w easy access from any computer @ciitizen @UnblockHealth

[💬Jen Horonjeff | #askpatients @jhoronjeff]

We can send another billionaire to space today, but I get sent my medical records like this.

Do any of them have a time machine so I can go back to 1998 and use a CD-ROM? #medtwitter #askpatients

[Sarcoma Ninja @SarcomaNinja]

@GavinNewsom Wake TF up California. Another play from the Pelosi handbook.

[Sarcoma Ninja @SarcomaNinja]

@vinodravi Please someone communicate this info to @GavinNewsom @LondonBreed before back 2 lockdown here in SF.

[Sarcoma Ninja @SarcomaNinja]

Dan received his custom wheelchair this am. #pinksocks 💕. Look at the color he chose! We will never forget the ❤️ and support from @nickisnpdx and the #pinksickstribe Dan is in the middle of emergency radiation @UCSFCancer 🙏🏻Dr. Ross Okimoto @KristenGanjoo @StanfordCancer

[Sarcoma Ninja @SarcomaNinja]

Does @cordanidavid @cigna know that since switching from #carecentrix to #Evicore there is no prior authorization for wheelchair parts-insured needs 2 sign waiver accept $ responsibility for $15,000 or no wheelchair built My husband paralyzed #keytruda #CIDP #pinksocks

[Sarcoma Ninja @SarcomaNinja]

My husband had 3 rounds of #Pembrolizumab #keytruda to treat #sarcoma and now paralyzed both legs partial arms Immune system attacked #myelinsheath #CIDP #neuropathy #GBS - has tried #IVIG & #plasmapheresis no response. #pinksocks #mayoclinic Is there anyone who can help us?

[Sarcoma Ninja @SarcomaNinja]

@GraceCordovano How about this one. My husband is in acute rehabilitation with GBS as a result of Keytruda, feet, legs, hips paralyzed. Has active sarcoma of pulmonary artery and as his caregiver can’t attend video appts (Covid) w oncologist or neurologist, only Two Way. WTF?

[Sarcoma Ninja @SarcomaNinja]

@coffeemommy You are.

[Sarcoma Ninja @SarcomaNinja]

@GraceCordovano D2.0

[Sarcoma Ninja @SarcomaNinja]

@GraceCordovano @JoeBabaian @AaronMiri @cmd418 @HealthPrivacy @ePatientDave Amen @GraceCordovano It’s a collective effort!

[Sarcoma Ninja @SarcomaNinja]

@bjmillermd @drdavenicol We live in Sausalito and would like to reach you, how do we do that?