one year off Ibrutinib. Still well....

[romarin]

Just had 4 month check up and I remain well almost a year after abandoning Ibrutinib due to painful side effects. (See previous posts) My WBC is 16.23. Lymphocytes 74.6% (which seem to interest the medics more than the WBC now...) I may not need treatment for months or years. i.e. they have no idea...me neither. But I feel generally well. Only problem has been vicious dose of athlete's foot which I thought was an insect bite, duet to itchy stinging and swelling. Controlling with anti fungal cream and hydrocortisone but it ain't gone away. Just a little warning that I remain vulnerable.

[cllady01 Former Volunteer]

Thank you for the update. Hoping you can continue without treatment for a long time and that the fungal situation gets sorted and gone soon.

[Cllcanada Top Poster CURE Hero]

That's good news... hope you get another year, but you need a treatment path for the future...

I was off Imbruvica (ibrutinib) for about 14 months, my Hgb and platelets when down, and my absolute lymphocyte count [ALC] increased...

However, my absolute lymphocyte count [ALC] was in the 40K region when I quit Imbruvica (ibrutinib) and it went to 360K during that period, so my disease was progressive...

Now 6 months on idelalisib and rituxan, we are back in the 40K zone again...

Bit of a rollercoaster...

~chris

[romarin in reply to Cllcanada]

You are right re treatment path...but that's the dodgy bit. Just have to hope something appropriate is available on our beloved NHS.... or another trial maybe....bon courage to you.

[Cllcanada Top Poster CURE Hero in reply to romarin]

That was my problem... I was staring at an empty treatment pantry... fortunately Zydelig (idelalisib) was funded before became transfusion dependent and end stage.

I think Zydelig (idelalisib) is available in the U.K. perhaps under the CDF... but don't quote me... As I think Scotland funded it also.

I recall that Venclexta (venetoclax) may be available for compassionate care use from Abbvie... I think someone mentioning that...

Venetoclax and rituxan trial would be nice... 😃

~chris

[Jm954 Administrator in reply to romarin]

Hoping for Venetoclax to be approved soon by NICE in UK for people in your situation. Fingers crossed!

[cartwheels in reply to Cllcanada]

Thats interestingI have heard of the drug combination you are now on in fact I think they are getting a trail together in the UK. I'm on ibrutinib one month so far and doing great I'm 17p so please keep us posted as this is something I may look at in the future if it's suitable for me all the best

[MartyR]

Hi Romarin,

Its so good to hear about your “Ibrutinib Free Year”,

I too am on a similar regime except – starting 1/3/17 and with Idelasilib.

See my post

“CLL Treatment - Give your body a rest?”

Since making this decision & having to return my balance of Idelasilib Tablets – I have not had any Blood tests or Haematology Appointments ---

So I don’t know what has happened to my lymphocyte or other levels – and June 21st will be the next appointment.

Maybe it’s too early to say – but I don’t appear to have any new side effects – and besides I’m still fighting all what I have already!!

But as I mentioned from my post …..

There is an informal paper from ASH 2015, where the question was asked “What happens when CLL Patients stop taking Ibrutinib or Idelalisib.” Whilst you can read the whole paper / conclusion – what does stand out for me is “A significant number of patients who came off these in Inhibitors did not need any immediate treatment as their diseases continued to be well controlled after therapy was discontinued.”

All the best

Marty

[romarin]

Hello Marty,

Just checked back on your previous posts. Lord what a lot you have gone through. But it is interesting to have to take a break.....much encouraged to read about the ASH paper...where can I read that?

[MartyR in reply to romarin]

Hi again Romarin - thanks for your kind words - the ASH paper was just something I found - you know when you follow one link, then another, then ....... Perhaps just try some of the key words on an internet search - like Ash Papers, ibrutanib and Idelasilib - or maybe another CLL Member can help? Meanwhile I hope your choice is the right one - when I was considering this big change my Heamatologist hinted at similar patients have already had 24 months + remissions.

Marty

[terryI_uk]

Good to hear from you romarin, sorry you're having a bad time with athletes foot, I'm still taking ibrutinib on Flair trial after almost two years, fatigue and muscle/joint pain still manageable, back for checks with trial team next week and hopefully results still good, had shoulder op in March so some extra pain resulting from that but getting there I hope, Terry

[splashsplash]

I always wondered what the clinicians meant when they said Ibrutinib was 'irreversible'? It seems from the previous posts that people are doing OK after coming off it.

[AussieNeil Partner Administrator in reply to splashsplash]

I think that you'll find "irreversible" refers to how Ibrutinib bonds chemically in B-lymphocyte cells. It's a very strong covalent bond, whereas biochemical bonding is nearly always far weaker hydrogen bonding. This just means that the Ibrutinib binds so strongly that the bond is "irreversible" and is not related to the treatment choice.

Neil

[Hoffy]

Romarin,

Itching and in sect bites can be caused from high IgE.

It is a side effect of CLL. I have it but is now starting to go down with treatment for my CLL.

There is a specific monoclonal anti-body that can treat it though.

In a lot of ways the itching has been the worst part of CLL for me Except when I got close to treatment. Your IGE is supposed to be less than 99 Mine was 1300. Now it is down to 500 and the itching seems to be improving .

That is great that you are off the drugs. In the future hopefully that will be the standard where you're treated with drugs for a period of time then off and then back on if needed !