@barackobama@mariashriver
It's Multiple Myeloma Awareness month
Can I get a retweet? https://t.co/fe3AclrKUA
I am a 15 year Myeloma warrior. I fight for my kid.
Not sure why he would deny patients the opportunity to try Selinexor. I have been on it since September of 2019. We manage the side effects and I am alive because of this drug. All patients should deserve a chance at more special moments with their loved ones. #selinexor
@AaronGoodman33 @DrChrisHourigan Do you feel you could change your stance on Selinexor? Give patients a chance to see if it is of value to fighting their disease? As an 14 year myeloma patient, I had nothing else. It has given me over 14 more months to be a mom.
@Karyopharm
@AaronGoodman33 @Abdallah81MD@VPrasadMDMPH
....continued.
I heard scary things about Selinexor and wasn't going to try it. Then, I saw an interview that @MyelomaTeacher did with Dr. J. It explained the possible side effects and how to treat them. I found hope.
@MedpageOnco@VPrasadMDMPH @AaronGoodman33 @Abdallah81MD@ASH_hematology What a shame that they didn't tell the true stories of those patients who got to have another holiday with their loved ones. Thanks to Selinexor,
I was able to see my son turn 16. He was a year old when I was dx.
Don't we want all patients to have equal treatment opportunities?
#MedTwitter
These Myeloma doctors are doing a disservice to their patients. I have been on this drug for 15 months. I have had a good QOL. We have treated any unfavorable side effects. Selinexor is 100% easier than DVT-Pace, but gave no real response.
https://t.co/H9OfAVxIaM
@AaronGoodman33 @Abdallah81MD@VPrasadMDMPH
I have been inspired to tweet! I read an interview the three of you did about Selinexor. I feel the need to set the record straight!
See my profile for my medical info.
I have been on Selinexor for 16 months. It was my last hope.
@AaronGoodman33 @Karyopharm@Abdallah81MD@VPrasadMDMPH@MyelomaTeacher
....continued
I found hope that I could have a QOL and still kill cancer cells. I am a non-secretor and had many plasmacytomas. One month after 100mg of Selinexor/Velcade/DeX, all of the tumors were gone.
#MedTwitter
This group of myeloma doctors are not suggesting Selinexor to their patients. I have tolerated it for 16 months and have a good QOL. Shame on them for doing this disservice to their patients.
@Karyopharm @AaronGoodman33 @Abdallah81MD@MyelomaTeacher@VPrasadMDMPH
...continued
How can you not give your patients the opportunity to not try this drug? You are doing a disservice. I feel as if you are acting irresponsibly and it hurts my heart. Myeloma patients need this.