Treatment Started

[Jollyboyjohn]

Hello All I've been reading the forum for sometime but this is my first post. I was diagnosed with CLL 3 years ago in August. And apart for being hospitalised on 6 different occasions due to Cellulitis, various infections and pneumonia. I was only attending my local hospital every two months for check up on my blood counts.

December last year my white cell count hit 200 and was advised the the time had come to start treatment, I had previously been told I had 17p deletion and that chemotherapy would not be an option.

I was started in Ibrutinib (excuse spelling) and within 5 days I was admitted to hospital due to severe bruising and swelling. I was on IV antibiotics and the tablets were stopped, after about a week or so I was advised to start again on a lesser dose 2 tablets once a day. This was ok for a month or so I could live with the bruising. In May I ended up with a lump on my right side where my kidneys are and brusing round it tracking done round my waist, I lasted 4 days taking painkillers. I finally called my consultant on Thursday and was told to come in the next morning. Upon seeing it I was advised my consultant was going to see direction for a professor colleague.

On the Monday I was admitted to hospital with a cellulitis in left hand and arm which after few days spread to my right hand and arm. All in all I spent just under three weeks in Hospital. I have been started on Venaflaxin (once again excuse spelling) so for all is going well apart from being hospitalised for two nights a week as the dose is increased. Has anyone else had the same issues I had with Ibrutinib and any feedback on Venaflaxin would be greatly appreciated.

John.

[Cllcanada Top Poster CURE Hero]

Boy you had a rough go... and welcome...

Venlafaxine is Effexor an antidepressant, I was on for years...

I think the drug name you want is Venclexta (venetoclax)? Its a

new small molecule CLL drug... with a ramp-up in dose.

~chris

[mrsjsmith]

Hello John,

Beautiful cat, and I hope you are still jolly, even after what you have been through. I have a friend who got cellulitis from a cat bite, so I know how unpleasant it can be. Let’s hope the Venatoclax works for you. It is also worth asking about IVIG monthly infusions of immunoglobulins. Since I started because of Sinus problems my infections have reduced.

Wishing you good health

Colette

[Jollyboyjohn in reply to mrsjsmith]

Hi Colette. I'm not having sinus problems as such but have noticedy nose is blocked with debris (for want of a better expression) since I started.

[mrsjsmith in reply to Jollyboyjohn]

Hi John,

It’s still worth asking about, as fingers crossed I have not had a cold since I started on it. Some Health authorities might not be so keen to offer as its expensive, but mine was approved by the Prof in charge of the department.

Re the nose, might be worth trying Sterimar, or more of a fiddle NelMed. Both available over the counter from Boots. Both a salt wash for clearing ‘gunk’

Colette

[Bubnojay]

Just wanted to sympathise with the bad time you have had, and wish you better times ahead.

Some are doing very well others struggle a bit and I am sure someone will be along who has had experience of ventoclax to share their experience.

Please keep us posted on how things are going, always nice to have support from your community.

Best wishes

Bubnjay1

[annmcgowan]

Hi John sorry to hear you have been having such a bad time. I am not on Venetoclax but I did attend a CLL conference recently where the trials for this drug in the U.K. were discussed in very positive terms. You may wish to look at postings promoting the work of Professor Hillman Head of research at Leeds.

I wish you all the luck in the world and hope you begin to feel better soon. Keep us updated on your progress.

Ann

[Ohannie236]

Just wanted to say welcome and glad you're here, though sorry for the reason. I don't have any specific knowledge to offer (I'm in treatment with FCR), but you're in the right place to find lots of great advice and support. Prayers from Ohio, and I wish you all the best going forward.

[tedrog]

All the best from Florida, John!

[casanova]

Cellulitis is pretty horrible, a friend has recently been treated for the condition, I hope yours has improved.

I had to come off Ibrutinib due to severe bruising and am now being treated with Venetaclax: started last August. During the ramp up period I felt pretty wiped out but then everything settled, cell counts in the main returning to normal. Venetaclax for me has been great.

I wish you well on this new drug and hope things improve for you.

Maureen UK

[Jollyboyjohn in reply to casanova]

That's good to know Maureen, I hope I experience the same results.

[Nanno77]

Oh John...my heart hurts for you...you have been through the wringer! I too am 17p so understand that we are in the high risk group.

Hugs and warm regards, nanno.

[MsLockYourPosts Passed Volunteer]

John - Ask to have your IgG level tested. If it is low IVIG can help your system fight infections in general, not just sinus infections.

[Mystic75]

Hi John,

I am so sorry you have gone through such a tough time but so very glad you found this forum.

Venetoclax is a very effective drug. I haven't read too many examples where someone had to stop taking it due to side effects. There is more written about the side effects of ibrutinib but then more people are on it. My husband just finished his ramp up on venetoclax and hasn't had any issues so far (knock on wood).

I hope you have turned a corner where your cellulitis is resolved and you can begin to see the benefits of venetoclax.

All the best to you and please keep us updated on how you are doing.

Big hug,

D.

[pkpayne]

John I didn't have any issues with Ibrutinib but after 3 months my wbc was still high so I too had to go into the hospital for the first 3 ramp ups. After that it was fine. I haven't had any side effects that I can't deal with. I hope the Venetoclax will be the answer for you. Best of luck and welcome to our group.

Paula

[Fastbike14]

Hi , really sorry to hear of the problems you've been having. I've been on ibrutinib 30 months with no side effects. Hope it works out for you.

Regards

Newton