O & V treatment and lymph nodes

[Gradyboy]

Please can someone who has CLL and swollen neck nodes tell me how long into treatment with Gazyva and Venclexta does it take for nodes to shrink and stay shrunk. Mine go down when I get the the steroid with treatment but return in about 5/6 days. I'm so discouraged. Haven't started Venclexta yet.

[Shepherd777]

My wife started on Imbruvica and noticed the walnut size nodes on her neck and smaller ones on her collar bones began to shrink in the first week. By 4 weeks it was hard to see or feel any of them. My understanding is venetoclax works well too, but we did not get on Venetoclax until her nodes were gone.

[Gradyboy in reply to Shepherd777]

Thank you!

[Naka]

I did V&O. Started with 4 weekly infusions then added the V at the 4th week. Nodes were gone at around the time I started V.

[Gradyboy in reply to Naka]

Thank you. Did they kind of go up and down before she started the Venclexta? Mine went way down right after infusion but kind of puff up right before the next infusion. I'm wondering if the steroid is what causes the shrinking then wears off.

[Naka in reply to Gradyboy]

No all my nodes were gone by week 3 before I started the V and stayed away. Could be something else like an infection of some sort since the infusions cause the WBC,ALC &ANC (neutrophils) to drop very low and the immune system is extremely low.

[Gradyboy in reply to Naka]

My blood work is all in perfect range, so I don't think there is an infection. My nodes were really big. Under my left arm was like a golf ball. And neck and collarbone also huge. They are better but the steroid they give before O treatment takes them down for about five days they they start getting bigger by the next treatment. This week I start Venclexta hopefully that will be the key for permanent decrease in these ugly nodes.

[mickimauser11]

it takes a little longer Btki works faster. This is my experience. I did OV treatment.

[Gradyboy in reply to mickimauser11]

Thank you❤️

[Winegrape]

Mine began slowly shrinking with Gyzyva and stayed down.

[LeggyP]

I had a lot of visibly swollen lymph nodes when I started on V+O treatment; my neck and armpits were particularly bad. Even though my bloods improved straight away, my lymph nodes didn’t really start to go down until I got up to the 400mg dose of Venetoclax, and even then they shrunk quite slowly (the ones that I could see/feel). I have had a few short courses of steroids before and during treatment (because I have been super uncomfortable at times), and this calmed the swollen nodes right down. However, like you, they came back again up after about a week. I think we are all different in how our bodies react to these drugs, so please don’t get disheartened - just give it some more time.

[Gradyboy in reply to LeggyP]

Thank you so much for your reply. With me after my infusion they shrink to a comfortable point then about five days and they come back. They give a nice dose of steroids before the Gazyva so I'm sure that's it. My blood counts went back to perfect and I guess that's good. I start Venclexta this coming week, but no Gazyva for two weeks so not sure how big they will get this time. It gets so uncomfortable. How do you tolerate the Venclexta?

[Tangolover in reply to Gradyboy]

I find that if I take the Venetoclax with a large, fatty (real butter, etc) meal it keeps me from getting nauseated. I have lately taken it while in the middle of my meal. I eat about half, take the Venetoclax, and then finish my meal. No problems at all with that strategy!!

[Gradyboy in reply to Tangolover]

Do you take it with your evening meal? Does V mess with your sleep?

[Tangolover in reply to Gradyboy]

Yes, with my evening meal. It is more consistent than my other meals. I have always had insomnia, so not sure Venetoclax is affecting it or not. I will say that when I did get nauseated with venetoclax, I would wake up in the night sick but fine the next day.

[Gradyboy in reply to LeggyP]

Are you still on treatment?

[LeggyP in reply to Gradyboy]

Yes, I have just finished cycle 6 and have had the last of my O infusions, for now. What happens next for me depends on the results of a PET/CT that I had last week (they discovered that I also have thyroid cancer when they were initially investigating the CLL, which has complicated things). I take my Venetoclax with my evening meal as I have found that it actually makes me sleepy - if I took it in the morning I felt like I needed a nap not long after. I started getting nausea when I got to the high dose, but it happens randomly during the day, rather around the time I take the tablets, so I haven’t worked out how how to avoid it. Plus anti-sickness meds work pretty well for me.

[Tangolover in reply to LeggyP]

I also had thyroid cancer but had it removed before I started treatment. Best of luck to you!

[Tangolover]

Six months of Rituxan did nothing to my nodes. Venetoclax knocked mine out within the first month. No visible sign at all now.

[Gradyboy in reply to Tangolover]

Thank you. All your replies are making me feel better. When your only symptom is enlarged lymph nodes and they keep coming back it's discouraging. But to hear of others who have been there helps.

[angelikab]

I’ve had 4 O treatments (no V yet but in January) and the swelling went down after the second one and is staying down.

[Gradyboy in reply to angelikab]

Did you have a lot of swollen nodes?

[Smakwater]

Gradyboy,

My nodes reduced noticeably after 3 Gazyva infusions, and measured within normal range by the time I started Venetoclax. There were others in the trial though with differing responses. Some due to more aggressive individual manifestation of cll in the nodes, and others were influenced by substances that they were using such as CBD's.

JM

[Gradyboy in reply to Smakwater]

Thank you! I had my third treatment Gazyva treatment yesterday and they are small we will see for how long. Start Venclexta Thursday. How long ago did you do the trial?

[Smakwater in reply to Gradyboy]

Started in October 2018 and completed December 2019.

[Gradyboy in reply to Smakwater]

Are you doing well now?

[Smakwater in reply to Gradyboy]

I am having a very good remission. The problem is that since I am living longer, I now get to experience all the challenges of aging.🤣

[Gradyboy in reply to Smakwater]

Well I hope you get to enjoy the aging process for decades ahead. You have been so helpful to me.

[Smakwater in reply to Gradyboy]

Thanks Gradyboy, I wish you the best as well.

[JerrysGirl3 in reply to Smakwater]

Hahahaha!! I agree lol!!!

[Smakwater in reply to JerrysGirl3]

My oncologist Dr. Sharman has a great sense of humor. I remember at a visit after my nodes shrunk. I put my hands around my neck and said to him, I have not been able to do this in a while". He replied, " Well, that will work good if you ever want to choke yourself". 😂 I still get a laugh out of that line.

[JerrysGirl3 in reply to Smakwater]

HAHAHAHAHAHA!!!

[Gradyboy in reply to Smakwater]

That's funny.

[Pearlpink]

This is so interesting! I have sleep apnoea and noticed that I had to reduce the length of the neck strap by 3inches in the first few weeks. However maybe mine was the initial steroids too as mine are bit up again now.

My neck nodes were never huge and they haven’t gone down much and I’m only in 8th week obinutuzumab, and into 2/3 week full dose venetoclax (I’m not very good at counting them!) My spleen was my biggest problem.

My oxygen on pulse oximeter had been 93-94 for 3-4years. My friend who works in haematology said I wouldn’t believe the effect of shrinking my spleen. She’s right. Within first week of treatment my oxygen went up to 98! I think my large spleen was splinting my diaphragm and reducing lung size!

However although the spleen discomfort had reduced, and oxygen gone up, I can see my spleen is still pretty big, but not as prominent. So I’m not getting the pressure on my guts anymore, but it’s certainly still big.

So I guess we really all different like everyone says!

My bloods are great now! That’s despite pretty low platelets and Hb at 3 infusions of obinutuzumab. It then started to reverse, and Hb best for years, and wbc and platelets normal. So mine appears to be slow but sure with minimal drama!

[Gradyboy]

How was it starting Venclexta? I start Thursday? Any issues or suggestions?

[patagozon in reply to Gradyboy]

I'm also in the O+V treatment protocol. After four weeks of ramping up on V (20mg, 50mg, 100mg, and 200mg), I started on 400mg three days ago. The only side effect I've had so far is weight gain. I've upped the amount I exercise and decreased my caloric intake. Hopefully, that'll keep my weight in check.

[Gradyboy in reply to patagozon]

A lot of weight gain? I don't need that. LOL Since starting Gazyva infusions I have lost 17 lbs.

[Poodle2]

Hi Gradyboy, I'm on O+V, half way through cycle 5. My nodes shrank literally overnight, that's those under my jaw, I could not see them after the first two infusions. The rest of my nodes took a bit longer, they were getting smaller but slowly. When I started the V tablets, that's when the persistent nodes started to shrink as well. It took about two months in total for them to go completely though, at least.

I had a massive spleen (21-22cm) that went back to normal within a week - 10 days!

They will go, don't worry, wait for the V tablets, they will do the job, trust me.

All the best

Petra ❤️

[Gradyboy]

Thank you so much. Do you tolerate the V well? I haven't had any issue with the O.

[Pearlpink]

hi Gradyboy. I haven’t really had any problems with venetoclax, having been on max dose for nearly three weeks (touch wood)! I got infection after my first obinutuzumab but that settled quickly and was never scarey because of the wonderful staff.

I was at moderate risk of TLS so I was on the day unit until my 6 hr blood test having fluids. I have drunk masses of water on the days the V is increased. I’m not quite as good on the rest of the week but it really makes a difference.

I do find I get very tired the night it is increased, and I’m quite stiff the following morning, but that then goes off within couple of days.

Everything that everyone says is true. I feel a little sickly having just got to maximum dose so I follow the advice I got and always take it with food with some fat in, and with lots of water. It’s really worth reading the instructions.

I’ve put on a bit of weight but I think that’s just because of eating a bit more frequently because if slight nausea. I think that will go away when I’m used to this dose. I got used to the other doses.

What I have wonderful is that I have flashes of feeling great. I’ve had severe fatigue for years and it feels wonderful to get snippets of the real me!

I still have fatigue but it’s not as much post exertional now - just more ordinary tiredness. So again that’s exciting, and I can wait!

Also having had a foggy brain for years I can remember a six digit number for up to a couple of minutes which I had lost 5 years ago!

I feel very grateful being able to take venclexta. It does make you feel a bit tired but I’m sure that will go.

Otherwise I have had no problems. My neutrophils and HB dropped initially but then turned around and started to go normal!

There’s quite a lot of running around having blood tests initially, but great that they keep such a good watch. Then all of a sudden you get to max dose and they let you go for a month between obinutuzumab infusions which is great!

Good luck!

[Gradyboy in reply to Pearlpink]

Were you on allopurinol for tumor lysis prevention? If yes how long did you take it?

[Pearlpink]

hi. Yes I was on allopurinol. It was started before I started the venetoclax. I initially had rasouricase iv instead, when I started the obinutuzumab, anx then swapped to allopurinol.

I have just stopped the allopurinol a week after I got up to highest dose of venetoclax and have been fine. I think it depends on your uric acid level, the breakdown product that can cause gout.

My uric acid was little raised at first on obinutuzumab, but had settled before the venetoclax. Good luck!