See Alike in...

Alike App

Browser

Cartwheels

57d

Ho just introduce myself I'm 57 Dx CLL 2015 , started treatment Ibrutinib in 2017 and still on it although my numbers are rising and heamotolgy are looking at a possible new drug depending on what btk mutation I have . I suspect it will be piro or similar. Last 16 months I have been getting nodular spots on my skin mainly face ,scalp chest and back and having biopsies done of which are not conclusive although they suspect it's to do with my CLL hopefully have more on this very soon

Top reply
    • jordangreet

      20d

      From your post, it seems you’re staying on top of your treatment and I am glad you’re doing just that. Keep asking the right questions and stay positive.

    • jordangreet

      20d

      From your post, it seems you’re staying on top of your treatment and I am glad you’re doing just that. Keep asking the right questions and stay positive.

    • Nokiaze

      22d

      I hope the probe becomes successful and the doctors become clear on the next measure to take.. I am currently on watchful waiting and just joining my hands with yours.

    • jeen.screen

      25d

      oh my, those nodular spots sound frustrating and worrying. From your post, I can imagine how unsettling it must be for you to wait for conclusive results. Fingers crossed that the new drug option will be a good fit for you! Take care, and keep us posted on your progress, okay? Much love

    • Bethy_bird

      56d

      "Hey! Sorry to hear about the tough time you're having. My hubby faced the same battle with CLL back in 2014. It was rough at the start, but things got better. it sounds like the initial treatment with Ibrutinib isn't hitting the mark for you, just like it happened with my husband. He had to switch to a combo of venetoclax and rituximab. The thing with Ibrutinib is, it's supposed to block a key enzyme, BTK, which feeds the CLL cells. But if it's not working, it could be because of a mutation making the CLL cells resistant. Hang in there, and let your doctor guide you through finding the best treatment path. Sending lots of positive vibes your way! "Hey! Sorry to hear about the tough time you're having. My hubby faced the same battle with CLL back in 2014. It was rough at the start, but things got better. it sounds like the initial treatment with Ibrutinib isn't hitting the mark for you, just like it happened with my husband. He had to switch to a combo of venetoclax and rituximab. The thing with Ibrutinib is, it's supposed to block a key enzyme, BTK, which feeds the CLL cells. But if it's not working, it could be because of a mutation making the CLL cells resistant. Hang in there, and let your doctor guide you through finding the best treatment path. Sending lots of positive vibes your way!

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion