SLL, Starting Venetoclax, Night Sweats

[Hock1]

Hello, I’m new to this forum. I came across it while googling info pertaining to my Husbands SLL. Reading through the questions & responses from everyone has been a Godsend. It helps when you talk to someone going through the same experiences.

My husband was diagnosed in 2012. He is 58 yrs. old

He recently ( almost 2 wks ago) went off Ibrutinib and started taking Venetoclax.

Right away he developed a painful lump below his rt. armpit and along rt. Jaw.

The armpit lump has gone away and there’s still slight swelling, tenderness by his jaw.

He’s mentioned getting Night sweats, approx. 6 nights, where he needed to change his t-shirt. Has anyone else starting the Venetoclax experienced these Night Sweats? He’s on the 50mg right now.

Also has anyone gained weight on the Ibrutinib? He’s gained 30 pounds and is very frustrated with this.

Thank you for any input.

[Justasheet1]

Why did he come off the ibrutinib? Was it due to intolerance of side effects or progression?

How long was he off the ibrutinib before he began taking the Venetoclax and will he be getting rituxin or obinutuzamab infusions?

Is he seeing a CLL specialist and are they aware of these symptoms that he’s having? If not, they need to ASAP. I don’t want to be an alarmist but he needs a thorough exam to rule out various reasons to include a transformation to a more aggressive form of leukemia.

What were his deletions and mutation status?

The CLL can come roaring back when you stop one drug that’s why I’m told that they often overlap the two initially.

Jeff

[Hock1 in reply to Justasheet1]

He went off the Ibrutinib due to Mild Progression of his abdominal lymph nodes.

He was only off the Ibrutinib one day before starting the Venetoclax.

He is seeing an Oncologist that specializes in CLL/ SLL and she is aware of his symptoms.

His FISH test was negative for mutations or deletions.

Shortly after diagnosis he was treated with Bendamustine/ Rituxan. He developed an allergic reaction to the Rituxan and discontinued taking that. He did the remainder of the 6 mos. on Bendamustine only. This was 2013. The results weren’t what they had hoped for. Only about 30% reduction of lymph nodes.

He started the Ibrutinib Dec., 2015. And now the Venetoclax.

Hopefully the night sweats will stop. Just wondering if anyone else experienced Night sweats or painful lymph node swelling after stopping Ibrutinib and starting right away on the Venetoclax.

He’s hoping to lose the weight he gained too.

[Justasheet1 in reply to Hock1]

I’m not on Venetoclax so I can’t comment on it. I did receive BR and also had a reaction to the rituxin but after the first infusion, I did great with it.

There are many reasons he could be having night sweats but with painful and swollen nodes I hope that the Venetoclax starts doing it’s job. He’s still in the ramp up stage.

What did his doctor say? FISH doesn’t look for mutational status. His CLL is very active so I assume that he is unmutated.

Has the doctor said anything about adding obinutuzamab to the Venetoclax?

Jeff

[Hock1 in reply to Justasheet1]

Nothing mentioned about adding Obinutuzamab to the Venetoclax.

Each day he seems better. No Night sweats last night.

Thanks for your input Jeff.

[Justasheet1 in reply to Hock1]

I’m happy that he had a good night. Sleep is under rated 🎉😴

[Hock1 in reply to Justasheet1]

Yes it is!

[LovecuresCLL in reply to Hock1]

On Venetoclax (week 9-10) and doing well now at 400 mg 62 year old male 11q ATM BIRC3. Not getting night sweats but did get a second bout with shingles. Nodes have been shrinking with Venetoclax. Labs are excellent. I have back pain, but it’s may be related to shingles.

Something is amiss here your husband.....I agree with Just a Sheet1. I would not drop your current doctor but I would go to another center and get a second opinion from another CLL specialist especially if that jaw “tenderness” doesn’t subside in a month, as it’s only been two weeks and this is the beginning of the ramp up of V I am assuming it may be a treatment effect.

Venetoclax is supposed to “lyse” the tumor in the lymph nodes and in the bone marrow.

The jaw tenderness may be “bone pain” or a lymph node shrinking or shrinking of the bad lymphocytes in the salivary glands. I would not worry about transformation yourself, but make sure doctor examines these sites under arm and on the face and does additional radiology studies if any lumps or bumps or spleen enlarges in the next couple of weeks, if needed. Just a Sheet is wise to be concerned of these things just to be sure.

I would find out more information about his mutational status. You are missing some data here. I know all this medical stuff must be daunting, but keep reading it will help you ...,help your doctor stay on top of things.

Just bring up every issue by writing them down no matter how big or small.

Best wishes, welcome and hang in there. It is going to be alright.

John

[Hock1 in reply to LovecuresCLL]

Thanks John. I’ll have to look back through his reports about mutation.

We’re going to UWMadison. Ed’s Lymphoma Oncologist also discusses his case with other CLL/SLL Specialists in her group.

Back when he was diagnosed, we were going elsewhere and weren’t happy there, but feel we’re at the right place now.

Thank you.