Starting treatment

[jjaarons]

I am 60 year old male 13q mutated. My white count is about 150,000. I have had a year of progressively worsening fatigue and can not do my job. I could wait longer for treatment since my other counts are normal but getting up every day is a struggle. I have decided along with my oncologist to start V+O at the end of the month. I know I could wait longer based on my other blood work but my life is miserable now. What is the average white count that people have reached when they started their treatment? I know everyone is different. Thanks.

[Canuck901]

Good choice 👍 v plus O is very good and you will only be offered in first treatment so should be excellent

[jjaarons in reply to Canuck901]

Thanks

[cajunjeff]

I was at about 250k wbc when I started. But I wouldn’t focus on wbc too much. I don’t see it as a predictor of much. People can can have a much lower wbc than you and have much more advanced Cll.

What is more important is that you have 13q Cll with mutated IGHV. No matter which treatment you choose, you are statistically very likely to do well.

People with 13q Cll who do ibrutinb often see their wbc jump dramatically when they start treatment and it can take a few years for their wbc to reach normal levels. As it turns out, that’s a good sign. My wbc only just recently moved into normal range, two years after starting ibrutinb.

Venetoclax should work much faster than ibrutinib in getting your wbc back to normal. It’s good to see wbc normalize fast, but how fast we get our wbc back to normal doesn’t seem to influence two much more important metrics, progression free survival and overall survival.

I think you should do very well on V plus O. You would probably do great on ibrutinib too. FCR could get you an indefinite remission. But I like the choice you made. Good luck to you.

[jjaarons in reply to cajunjeff]

Thank you. I was afraid of FCR due to the risk of delayed bone marrow cancers. Hoping for the best.

[cajunjeff in reply to jjaarons]

I think you made a good choice. Some doctors prefer fcr with young and mutated patients because of the high rate of possible cures. Others say that young and mutated Cll-ers will do well with most treatment options and to go for the one with the least toxicity. V plus O might produce FCR type remissions with less secondary cancer issues. Time will tell.

[jjaarons in reply to cajunjeff]

Thanks

[Smith123456]

your wbc and alc will drop pretty quick. However-fatigue-is a separate issue. No guarantees that will improve.

[jjaarons in reply to Smith123456]

I have heard that. I know that is a possibility.

[GMa27]

I was 63 and 13q mutated. I opted for FCR to just get it over with. Was my last chance to try chemo. Not recommended after 65. My WBC was 225k. Only needed 3 rounds. Was very uneventful. Remission 2+ years.

The option you picked is popular too.

We do have very favorable markers.

Good luck! 💕

[jjaarons in reply to GMa27]

Thank you

[Downriver555]

I am also 60 and just finished May 2020 with v&o. My blood results after I finished my treatment was MRD negative. I had no side effects will on this medication. I was also 13q mutated. Here’s to your good health and longevity

[jjaarons in reply to Downriver555]

That’s good news😀

[SofiaDeo]

I have different markers than you, but I too had terrible fatigue even when hemoglobin, platelets, etc. were all normal or only slightly low. My need to treat was like you, based on fatigue, inability to concentrate, and severe night sweats that woke me several times a night. I too couldn't do my job. My first major treatment happened to occur when my WBC was around 180K and over 90% of that was lymphocytes. My symptoms started/got diagnosed when my WBC was about 50K, as cajunjeff said, it's more symptoms and cell count trends that determine treatment, not a specific "number."

[jjaarons]

Thanks. Sounds a lot like me

[pilantd]

I was diagnosed 13q at the age of 54 in 2014. My count was only 180 but I was bulging with lumps so Oregon Health Science University recommended me to start FCR after about 6 months. I felt some fatigue before stating. My remission was about 18 months and then they recommended Ibrutinib. I’ve been on IB for almost 4 years.

[jjaarons in reply to pilantd]

Thanks

[spanglem123 in reply to pilantd]

Wow!!! I work at OHSU. am a nurse. Was diagnosed almost 1 yr ago. Have been on this site since and find it incredibly useful. I am w/w for now. 13q mutated. Its nice to see someone from my neck of the woods on an international forum. 😀

[Phyllis731]

My WBC count was up to 350K before doc said time to start Imbruvica. In just 2 months of use, my count came down to 220K. I am grateful...it seems to be working.

[jjaarons in reply to Phyllis731]

That’s a high wbc count. Wish I could wait that long

[Pageboy]

My WBC was around 200k, but the decision to treat was made on my RBC just dipping into anaemia and my spleen being very large. I don’t have your favourable markers (11q unmutated) which is why in discussing treatment we arrived at Acalabrutinib as the best first choice for me. According to my consultant, V + O is showing similar outcomes as FCR for your favourable markers in so much as - early days as it is with data - there’s a strong chance it will give indefinite remission. So on that basis, it is a good choice for you. I hope it goes well and your energy is back in no time.

[jjaarons in reply to Pageboy]

Thank yoy

[dvd1955]

Hi, I started V+O with WBC=78 and Abs. Lymphocytes at 70. My oncologist was more concerned with the increase in these numbers than the actual number itself. In 6 months my WBC was up by 4X, and my ABS-L was up by 4.5X. That was when the decision was made to start treatment. As to the fatigue, I can't address that as I have not experienced that.

[jjaarons in reply to dvd1955]

Thank you

[Ptown]

Hello! Just wanted to wish you well as you begin this new part of your journey with your medications. I like to think about all the hard work and dedication that is the underpinnings of the creation of medicines. When we stop to reflect on the collective years of study from countless people we will never meet, all coming together to help us when we need it most, it is humbling. Let us know how you do with this new health regimen- we are rooting for you! Carolyn

[jjaarons in reply to Ptown]

Thank you

[Gridleythedog]

175,000. I have been taking Imbruvica 420 Mg for two and one half years. Recently lowered the dose to 280 mg. My lymphocytes are now 17,000. Oncologist is pleased. I am 88 years old and feel well.

[jjaarons in reply to Gridleythedog]

Perfectly

[Big_Dee]

Hello jjaarons

It used to be a few years back that reaching 100K WBC was the trigger for treatment, not so today. most people try to go as long as they can before having treatment because the treatment time gets shorter and shorter between treatments. With so many options for treatment today there may not be as big an advantage to prolonging time to treatment. Blessings.

[jjaarons in reply to Big_Dee]

Thanks

[JigFettler Volunteer]

I am also 13q mutated. I wanted V - back then V+I!

I really really wanted that.

I was 59.

A 2nd opinion from a CLL World Leader (2nd opinion) advised FCR!!

NOT what I wanted to hear.

I had a 6 hrs drive home (UK) thinking about the advice.

As I pulled up outside my home - I decided.

FCR.

Which I did. 3 cycles in full remission. Did the full 6 cycles.

Year 3+ still well.

If I had my time again... now... what would I do?

Maybe V + O. Like you canvas opinion. Tricky - some looooong remissions arise from FCR and 13q mutations.

Stay safe.

Jig

[jjaarons in reply to JigFettler]

Very true. Thanks

[jjaarons in reply to jjaarons]

Very true. Thanks

[DanBro1]

I begin my CLL V+O treatment March 1st. Recently, my dentist noticed a number of swollen lymph nodes in my neck and recommended that I have it further checked out. Biopsy, CT, MRI exams revealed orange and lemon size swollen nodes in my abdomen, yet I feel well and all things considered I am asymptomatic - except for the FATIGUE and swollen lymph nodes. My WBC is 25M and climbing - which is not bad after reading some of the WBC numbers on this board, and I am clueless on your marker code-talk of 13q, 11q, etc. I will post my progress as I embark on this journey March 1st. Good luck jjaarons!

[jjaarons in reply to DanBro1]

Good luck to you as well

[tizhmslf]

I was about the same when my oncologist started chemo: gazavya and columbucil. That didn't work so i've been on Imbruvica for about 4 years and doing OK.

[jjaarons in reply to tizhmslf]

Good to know. Thanks

[Smac29]

Hi Jjaarons,

I am currently on V & O. I’m also 13q and mutated. My lymphocytes went to 180,000 and my hemoglobin was starting to fall and eventually went down to 10.2 when I decided to start treatment. So far everything has been going really well and I have more energy.

Good luck with your treatment!

Sheryl

[jjaarons in reply to Smac29]

Thanks

[CBeauty]

Congrats on making your choice and moving forward with treatment. It's a big step and you are on your way to feeling much better!

[jjaarons in reply to CBeauty]

Thanks