Just took my first Pirtobrutinib pill today

[ReneeSusan]

I can’t thank my doctor and Upenn enough for acting so quickly in getting pirto approved by insurance company and getting me co-pay assistance. The drug arrived yesterday and this morning I took my first dose! Just in time because my lymph nodes in my neck and abdomen have gotten so much bigger and I have not been able to eat much and now having headache and pain on one side.

Hoping the nodes shrink fast! I’ll update my journey in a few days.

Renee

[Justasheet1]

I’m so happy for you and excited to hear about your progress.

Jeff

[42828]

Fantastic news for you. I also need Pirtobrutinib but, for me, it's not available. I'm not in private health care and there's no insurance policy in place. I'm worried because I'm taking idelalisib but now it's failing. I don't know what to do. It's my last chance as I've had all other treatments in the past.

[RogerPinner in reply to 42828]

Tony, I have recently started Idela + Rituximab, after FCR, Ibrutinib and venetoclax (separate treatments), all stopped being effective (similar to you I think). I was offered a Pirtobrutinib trial,, randomised with Idela plus rituximab, but failed one of the blood tests, so Idela +R without the Pirtobrutinib fall back was the only option.

I'm not sure if that particular trial is still open (it's not at my hospital), but I believe there are open Pirtobrutinib trials being run at the ChurchilL in Oxford (Toby Eyre), Derriford Hospital in Plymouth (Claire hutchinson), and the Leicester Royal Infirmary (Rebecca Allchin). Aussieneil posted about these a few days ago but I'm sorry I haven't the link; also I don't know where you are in UK.

Also there are new drugs that work in a similar way to Pirtobrutinib either being tested or about to be tested, ask your cll team to investigate for you. Please let me know how you get on, I expect to be in a similar position to you in the not too distant future.

Best wishes

Roger

[42828 in reply to RogerPinner]

Morning Roger, many thanks for your help my friend. I'll be giving you a thoughtful response later in the day, family matters are dictating things this morning. You are right to assume my previous treatments what you outlined for yourself, I've had and eventually failed. I'll get back to you.😊🙏

[42828 in reply to 42828]

I've had all treatment available, venetoclax, ibrutinib, rituximab, FCR, idelalisib. It looks like I'm in the last chance hotel 🥴.There are possible trials... I'll have more info tomorrow. My hope springs eternal.

[RogerPinner in reply to 42828]

Tony, I'm going abroad for two weeks tomorrow morning and won't always be able to access e-mail. But I will be happy to help if I can on my return. In the meantime if i were you I would pursue the possibility of a trial.

Roger

[ReneeSusan in reply to 42828]

Are you in the US or UK? My doc applied for it under Compassionate Care as I am out of options. I understand the UK has the same system in place.

[DaveCll in reply to ReneeSusan]

I am in the U S A

[ReneeSusan in reply to DaveCll]

I approached my doc and adked her to see if could get it thru compassionare care. Upenn called my insurance company, got it approved and got me co-pay assistance thru the Pan Foundation

[42828 in reply to ReneeSusan]

I'm in the UK. Having heard what you've said, I'll be talking to my haematologist tomorrow.Thank you 😊

[ReneeSusan in reply to 42828]

Best of luck to you!

[DaveCll]

Good news Renee. Just wondering what your doctors said to get it approved so your insurance will cover it?

[ReneeSusan in reply to DaveCll]

I asked my doc to apply under Compassionate Care as I am out of other options.

[Mystic75]

All the best to you, Renee!D.