Infection, hospitalisation and future treatment with Ibrutinib or trial drug.

[Mick491]

As many of you are aware I was hospitalised last Tuesday when I visited clinic and the good news is I am going home later today after responding to 5 days of IV antibiotics. Im making an appointment for clinic to discus treatment for CLL and the consultant stated i am now eligble for Ibrutinib. I am also considering the trial of Ibrutinib and venetoclax. However, i need to fully recover. But things are looking good after a very rough ride.

[fell]

Great news! I’m in an I/V trial and doing well. Whether you choose I or I/V, you will feel so much better once you begin treatment. You’ve truly been a champion for yourself and so many others!

Wishing you all the best.

Fell

[Mick491 in reply to fell]

Thanks. Hope you continue to improve. Mick

[fell in reply to Mick491]

Thanks! 🙏

[Newdawn Administrator]

This is not just good news, it’s brilliant news Mick and I’m so glad to hear it! 😊 Your experience set into focus the Ibrutinib funding issue and served as the perfect example of why it just had to be overturned. Your story could be any of our stories.

Thankfully, Ibrutinib is now available to you plus the possibility of the trial.

There’s no place like home and there’s nothing better than the hope for a healthier future that these drugs offer.

Best wishes going forward.

Newdawn

[Mick491 in reply to Newdawn]

Thanks. I must say I feel more positive than I have in a long while.

[GMa27 in reply to Mick491]

My post got attached to Marti by mistake.

[MartiP2009]

I’m glad you are doing better. I did Ibrutinib for 4 years, went into remission only after 4 months! Sadly the disease started to progress and was switched to venetoclax but did very poorly, only able to take it for first week as I am allergic to it. Now waiting to see a cll specialist at Moffitt in Tampa on Sept 6th but if they can’t push my appointment for an earlier date I will most likely start other treatment after my oncology visit on August 20th. Last week I was feeling very fatigue and tired, yesterday was the best day in weeks of unable to sleep, but last couple nights able to sleep all night and woke up with lots more energy. Wish you lots of luck!

[Mick491 in reply to MartiP2009]

Thanks. I hope you get an earlier appointment. Good luck.

[GMa27 in reply to MartiP2009]

I went to Moffitt for my second opinion. They were great but it took 2 visits to get final recommendation. They repeated FISH and Flow tests since I hadn't had them in 12 years. If you already sent them tests, then they should be able to recommend treatment in one visit. I did my CT scan with my local oncologist so there weren't more tests or appts needed at Moffitt. Since I am 4 hours from the Center, I am being treated by my home. Is Moffitt far from where you live? I saw Dr. Pinilla. He was very good! Ask to record your meeting with him. A lot of information and worth listening to later on. Hopefully you will also have someone with you for extra set of ears. Keep calling to see if they had any cancellations. Good luck!

[MartiP2009 in reply to GMa27]

I live in Collier County about 3 hours south of Tampa, I will also see Dr Pinilla-Ibarz. I have all my records with me only thing I need are the cd’s of my recent scans. How do I record the meeting with him? I’m technologically challanged 🤪

[GMa27 in reply to MartiP2009]

Practice on your cell phone. There should be an app already on your phone for recording. If you can't figure it out, ask a friend or go to your cell phone store. Glad you have all tests done. He has a heavy accent so extra ears and recording would be helpful. I took some notes too. I had my questions listed too so I just had to fill in his responses.

[MartiP2009 in reply to GMa27]

I speak Spanish, my husband will benefit from that since even thou he speaks English, Spanish is easier for him to understand. I will ask my sons about the phone thing.

[Kwenda]

SUPER SUPER NEWS...

Always we seem to end up with difficult choices as to our treatment.

However from what one reads Ibrutinib and Venetoclax has produced some excellent results thus far.

Good luck with what ever you choose, and keep us informed.

Dick

[Mick491 in reply to Kwenda]

Thanks Sick. I will keep posting here. I have read good things about the trial which at present is my preference. However, it was due to be started this month but there has been a problem. Under the new guidelines Ibrutinib won't be available to new people for 2 weeks so there maybe a choice. But I do need to start treatment therefore may have to be Ibrutinib. Will let you know how things go.

[Bubnojay]

As always Mick, rooting for you. Well done in motivating us all.

Bubnjay1

[JR1964]

Mick, A big HOORAY from Texas. I have heard a ton of good stuff about the I plus V combination. The Ibrutinib alone has worked magic for many. STAY STRONG J.R. 🤠🤠🤠🤠

[Mick491 in reply to JR1964]

Thankyou Texas

[annmcgowan]

Great news Mick. Good luck whichever treatment route you choose. Keep us updated.

Ann

[dmmck]

It looks like you have two good options now. Best of luck to you!

[Jem67]

Fantastic news, Mick. Good Luck with whichever treatment you have. Joy

[Wroxham]

Just pleased you are home.

Choose carefully.

Best wishes.

Sue

[dandelup]

Glad your feeling better and are on your way home, whatever course of treatment you end up on I hope it gives you years of feeling well again, very best wishes.

[pati23]

Best Wishes after such an uphill struggle

Pat

[Fran57]

Fantastic news Mick!

So glad things are improving and thanks for your hard work - my husband may well need Ibrutinib in the not so distant future and he is almost 3 years post fcr.

I'm looking forward to hearing how well you'll soon be doing!

Fran 😉