CLL Treatment concerns

[CA28]

Hello all,

I have different options for my treatment, I have a lot of enlarged lymph nodes in my abdomen as per cat scan, it is causing me a lot of discomfort . I am 57 yrs old and my CLL is progressing.

I need a treatment that can work getting my Lymph nodes back to normal size. I had a 6 months of Gazyva infusions 2.5 years ago, so my CLL is very naive to CLL drugs .

My understanding is that BTK inhibitors work well in de bulking the nodes, finding them in hiding places.

can a BCL Inhibitor like Venetoclax help with the same thing? Is anyone in the group taking Venetoclax as only treatment for their CLL.

My Dr is doing a clinical trial with Lisaftoclax (APG -2575) it is a BCL inhibitor. He wants me for the clinical trial of this drug and my concern is that is for life or until stops working.

The other treatment on the table is Rituxan infusions for 6 months in combination with Venetoclax pills for 2 years.

Thanks in advance for your comments.

[johnliston]

I did a 2 year trial of Ibrutinib and Venetoclax combo both drugs together. I remember the Ibrutinib was suppose to work on the nodes and the Venetoclax was suppose to be better for the marrow. It was also thought that using two drugs together would make it harder for CLL to become resistant to either one alone. I got to MRD negitive by the time the trial ended and two and half years later am still in remission , but MRD positive.

Also want to point out if you start on a BTK inhibitor you can probably add a BCL inhibitor later and maybe get a break from treatment.

john

[CA28 in reply to johnliston]

thanks for your information. How did you tolerated both drugs, any side effects ?

[garyherm in reply to CA28]

very early getting 3rd dose this Thursday but so far so good.

[johnliston in reply to CA28]

I had a lot of the usual Ibrutinib side effects. Bone and joint pain for the first three months, bruising, slightly higher blood preasure, chipped nails, and a little weight gain. All resolved after treatment stopped. Nothing from Venetoclax that I'm aware of except some blood work issues during ramp up. There are afib issues with Ibrutinib, but better with newer BTKs. I always thought not bad side effects for a cancer treatment.

Good Luck john

[garyherm in reply to johnliston]

my treatment regime in Australia is Gazyva infusions, (only just started) which will be followed by Venetoclax for a (God willing) fixed term. Sounds more like that last option. I hope you find the best option for you.

[StormySeas_2_0]

I have both enlarged lymph nodes & spleen, so I started off with Gazvya, but they stopped immediately for reactions. Started taking Venclexta two weeks ago. A couple days later, Rituxan was added. Had some early issues, but they stopped/slowed the drip and added a few extra med, which was helpful. Dealing with Uric acid & magnesium issues now, so they added a hydration infusion & a dose of rasburicase. I know it’s early in my treatment, but I’ve noticed no relief yet. I am hopeful, and wish you luck in your journey. It seems everyone has a different experience with CLL. Keep asking questions.

[CA28 in reply to StormySeas_2_0]

Thanks for the information, let us know how it goes, hope you get a good result and feel better.

[akirsch973]

Three years ago I had 3 enlarged lymph nodes in the axilla (armpit) area and 3 in the adjacent sub-pectoral area. I opted for radiation and Rituxan infusions. I had 4 infusions, once - a - week for 4 consecutive weeks. No additional treatments necessary. I undergo periodic PET/CT scans and blood tests. I had an adverse reaction to the first Rituxan treatment. I experienced intense itching around my head for 1.5 hours during the infusion. No other adverse reactions were experienced.

Good luck!

[Big_Dee]

Hello CA28

I am 5 months into V&O. I had massive abdomen lymph nodes which caused a distended stomach. I have not had additional CT scans since I started treatment but my stomach has greatly reduced, so sure lymph nodes are reducing. Blessings.

[rafew]

As a take a hard look at the V+R treatment as a first option. Most of my lymph node involvement has been in the abdomen and I know the discomfort. V+R debulked them quickly. The ramp-up was tiresome and I did experience some TLS, but it was quickly managed. My decision for V+R was that there is the potential for remission and be off treatment for a while. Unfortunately as V+R was my fourth line treatment, and my CLL being a persistent bugger, (11q/Tri-12/unmutated) my remission was short lived (9months) and I am now on Acalabruitnib. Best wishes

[MICHPR]

Hi. I have been on Venetoclax for one and 3/4 yrs. I have always had a lot of enlarged nodes. The Venetoclax got rid of the groin ones but I have a lot of very small hard ones in my neck and they haven't gotten any smaller unfortunately. I finish Venetoclax in about 3 mths- nervous with that. Good luck.❤️

[CA28 in reply to MICHPR]

Thanks for the information, are you taking Venetoclax as a mono therapy?

[MICHPR in reply to CA28]

Yes I did 6 mths of Rituximab when I first started Venetoclax but that is all. A few years ago I did 6 mths of chemo but after 3 yrs the CLL returned.

[Gradyboy]

I started treatment in October with V&O. I had extremely bulky nodes it was horrible. The first month of the infusions helped some but when I started the Venclexta they shrank fast. I am talking overnight fast. After the ramp up they were not visible at all. I could still push and feel them. Now I'm almost done with two months at full dose and they are not even palpable at all, except for one very small one under my arm. That also was the largest one when this all started. Venclexta shrinks them fast, and for me, I have more side effects taking a multi vitamin than I do the Venclexta.