I feel great after a few infusions and am starting pills next week. My bloodwork was normal for the first time in 10 years. I seem to be nervous about everything. My lymph nodes were down and now I feel a little one back. Should I be concerned or is this what happens. I go back next weeks for infusions and start pills. I'm a pretty chill person but I'm now worrying about everything. Any advice? Is the lymph node thing normal?
Thanks for your support.
I started V+O in April. I know exactly how you are feeling. The first few months of our treatments are tough mentally. Waiting for results of blood tests. Waiting for your name to be called at infusion. Heart rate hitting 160/100 before appointments with your oncologist. After three months, my anxiety improved. My blood work was good week after week. I started realizing that V+O is a kick ass medication. It takes a while to develop faith in a medicine. You will feel much better by Halloween. I promise.
Thanks soo much!
Mention it your doctor but I don't think it is something you should worry about at this point. My nodes literally melted overnight after the first infusion but I had a few that wouldn't shift. It was only after I started V that they all disappeared pretty quickly. It's a really stressful time. Once you just about get the anxiety in check after your O infusions, you are about to start with the V pills. I'm sure there will be no palpable nodes in a few weeks time. All the best.
I started the same treatment on June 13, 2023. My ct chest scan and pet scan had me light up like a Christmas tree. My spleen was also enlarged. In September we redid a pet scan. Everything was gone. Amazing.
I finished O in Dec and V in July of this year. In remission for now. Had my first blood test in August after stopping V in July.
My blood has not been this good for 10 years.
I wish you and everyone fighting CLL the same results. I'm 75 yrs old and I shot a 74 playing golf this week. I've been blessed. This is my second time to survive cancer. I realize I'm not cured but I'll take this result graciously! I survived advanced head neck cancer in 1996. The medicines are so much better. Good luck during the remainder of your treatment. 🙏
As already suggested by others, you will see results rather quickly in the reduction of enlarged lymph nodes. Questions you have here be sure to present to your medical team. If too medical ask them to put it in layman’s terms.
Be sure to drink lots of water!
When I started V&O I was one big lymph node. They reduced in size after O infusion but would increase a little between infusions. Once I started the V they disappeared never to return. I wouldn't be concerned at all if you still can feel some. I believe I asked this same question around two years ago. Best of luck in your journey. I had excellent results with O &V with no side effects except my hair needed coloring more often than before treatment. I can live with that. In October I will hit year one in remission.
thanks so much. I do feel great. I start v Tuesday. Hopefully I’ll have no side effects. I do worry about being with people and getting sick so I’m pretty careful. I stopped coloring my hair a couple of years ago. It was liberating. Xo
I don't know if anyone has told you this. When you start the pills most people do best to take them with their evening meal. I use to take mine smack dab in the middle of my meal. Many of us have had great results with no stomach upset taking them in the evening.
good advice. My doc told me to take them in the morning with food to start. I’ll ask about that. I’m a thin short person. I really don’t want to lose my appetite or lose weight.
You need to take them in the morning during ramp-up as TLS blood test times are critical.
Low/med risk TLS first 20mg and 50mg tablets the blood tests are 6-8 hours after and 24 hours after. Can't go home until the 6-8hr test is OKed. Can't take the 2nd tablet until the 24 hour test is OKed. 100mg, 200mg, 400mg there is only a before blood test. If you are high risk TLS there are a lot more blood tests and 100mg, 200mg, 400mg blood test are 6-8hours and 24 hours like the 20/50mg low/medium risk. 20/50mg are as inpatient with 5 blood tests each, before (up to 72 hours), 4 hr, 8 hr, 12 hr, 24 hr.
They aren't about to open the clinic at 2-4am and 8pm, because that's 6-8 hr and 24 hr after you took the first one with an evening meal. Then after the 8pm one you could be waiting until midnight for the results to be told you can take the 2nd.
My hospital threw 20mg tablets in me at 8pm, midday, 9am, then did the same trick for 50mg, 4:10pm, 11:45am, 10am. To compensate for their inability to plan a schedule they rewarded me with 5 extra TLS blood tests for each stay.
If you have a blood test booked for 2pm and they haven't done it by 3pm start kicking up. I wasn't given OK to go home until 5:30pm and the doors shut at 6pm, couldn't find a doctor after 5pm to OK the TLS test. Staff nurse was there ready and waiting for me after that.
interesting. I never had to do any of that?? Like someone else earrlier I took my 400mg after dinner. usually about an hour. I had 0 side effects.
Maybe your protocal was because you were in the hospital???
No. that's step 3 of the TLS monitoring for first 5 weeks.
venclextahcp.com/cll/dosing...
Edit You can do what you like once you are on cycle 3 at 400mg.
You are normal.... Don't sweat the small stuff, your nodes will gradually shrink. In 12 months, you will be amazed at how well O+V works for you. I was diagnosed in November 2020, began 12 months treatment in March 2021, been uMRD for 2 years and see my oncologist every 6 months, now. All the best to you!
Consider avoiding any supplement that influences cll cells to migrate into the lymph nodes. E.g, CBD.
Obinutuzumab does a great deal of its pre treat magic in the peripheral blood. You want to keep the cll in the PB while on O. CLL is easier to treat if it is not hiding in the nodes and spleen etc...
Supplements can help us feel better, E.g, less nausea, better appetite etc... However, some are known to cause cll to migrate into the lymph nodes.
ncbi.nlm.nih.gov/pmc/articl...
JM
I take Crestor. Calcium vitamin d and theratears for dry eyes. My doc says all are ok. Is there anything about those that I should know about?
I have not found a published interaction data or study that indicates this type of influence for Crestor, calcium, or vitamin D.
As you may know, crestor is a very common treatment for cholesterol and one would suspect that it is highly observed by oncologists treating cll. Calcium and vitamin D are commonly recommended to cll patients that experience treatment influenced depletions.
I am betting that your doctor is good to go on crestor, D, and calcium. Mostly be cautious and well studied on the general consensus curatives.
elm1 - It’s hard to be relaxed going thru treatment but the experience of others may increase your comfort level. You are depending on these medications to help you which may be disconcerting if you like to take charge.
all the comments are comforting. Thanks
Is it Venetoclax en Obinutuzumab you are refering to?
yes. Those long names are hard to remember!!
I'd put the calcium on hold during Venetoclax ramp-up. It may mask a fall in calcium levels that are due to TLS.
After one year on Ibrutinib, BEST NEWS EVER!!
Starting V&O - how strict should I be with contacts/travel/work?
Can't accept CLL diagnosis.
Lymph nodes pain
