Fluffy Girl

I am a 14 1/2 year Multiple Myeloma warrior. I have had two stem cell transplants and two Car T cell transplants. Have also had 26 chemotherapy drugs.

[Fluffy Girl @fluffyMMwarrior]

15 years ago this month I was told I had 3 years to live with Multiple Myeloma.
Bam! Still here, bitches!
#MultipleMyeloma
#myelomawarrior
#selinexor
#karyopharm
#CARTcell
#celgene
#cancersurvivor
#don'tknowhowtotweet!

[Fluffy Girl @fluffyMMwarrior]

@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.

[Fluffy Girl @fluffyMMwarrior]

multiplemyelomaawarenessmonth
https://t.co/fe3AclrKUA
#multiplemyeloma
#karyopharm
#selinexor

[Fluffy Girl @fluffyMMwarrior]

@AaronGoodman33 you are wrong. #selinexor has been life saving for this 14 year myeloma warrior. Please reconsider. #karyopharm

[Fluffy Girl @fluffyMMwarrior]

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

[Fluffy Girl @fluffyMMwarrior]

@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.

[Fluffy Girl @fluffyMMwarrior]

@BiranNoa I am still alive and kicking. Haven't cheated on you with bone marrow biopsies. You were the last person to stick a needle in my fluff. ;)

[Fluffy Girl @fluffyMMwarrior]

@BiranNoa I am new to Twitter. Nice to see you! I miss you. Am I allowed to tweet that? Lol

[Fluffy Girl @fluffyMMwarrior]

#selinexor

[Fluffy Girl @fluffyMMwarrior]

@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.

[Fluffy Girl @fluffyMMwarrior]

@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?

[Fluffy Girl @fluffyMMwarrior]

#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

[Fluffy Girl @fluffyMMwarrior]

#MedTwitter

[Fluffy Girl @fluffyMMwarrior]

@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.

[Fluffy Girl @fluffyMMwarrior]

#MedTwitter

[Fluffy Girl @fluffyMMwarrior]

#MedTwitter

[Fluffy Girl @fluffyMMwarrior]

@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.

[Fluffy Girl @fluffyMMwarrior]

#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.

[Fluffy Girl @fluffyMMwarrior]

@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.