Has anyone started V-0 treatment recently with positive results?

[unairdefamille]

I am due to start OBIMUTUZUMAB & VENETOCLAX it next week after Acalabrutinib caused afib and I am on it 1/2 dose with 1 beta blocker and blood thinner that cause stress and fatigue. I would like to be reassured as at the moment I am a nervous wreck. Thank you.

[MalcT]

I am really satisfied with my results. I started beginning of June with O. weekly and V. in July.

Now I am on monthy treatment with O. and daily V. 400mg.

I had an enlarged spleen which shrank in the first month. My bloodtest is back to normal.

And I am much better in myself than I ever can remember.

No side effects from O. and only since being on V. 400mg it effected my face and flared up my roscea. Plus I have feelings of sickness but I can control it by getting outside into the fresh air without taking anti sickness tablets.

You will be fine.

[unairdefamille in reply to MalcT]

Thank you so much for your response. 🙂I wish you to continue feeling so much wellbeing! BTW, did you have to be hospitalized at the beginning or do you get your infusions as outpatient?

[MalcT in reply to unairdefamille]

Infusions as outpateint. I was Stage 3 in the severity of my CLL.

[unairdefamille in reply to MalcT]

Thanks, I feel relieved.👍

[Pacificview]

Hello,Most everyone achieves very good results with the O & V protocol. I have my final infusion tomorrow. You may have a minor reaction to the first 100mg obin, most of us do. The nurses easily take care of it with generally a short pause. Giving more benedryl and restarting after an half an hour to an hour.

Search through the site typing in "Obinutuzumab and Venetoclax"

You will find all you need to know about what to expect. It really is a good treatment and if you do have side effects they are usually easily handled at home.

I have experienced no heart issues and my blood numbers have been quite good. All the best to you, its going to be just fine.

John

[unairdefamille in reply to Pacificview]

WOW, thank You, John. I appreciate. BEST to you too 💖

[Thundercat2 in reply to unairdefamille]

Hi unairdefamille,

I vividly recall being where you are and fearing oncoming treatment! I tried Obinutuzumab and Ibrutinib first in a clinical trial. I had so much joint pain on Ibrutinib and then an Afib episode so had to discontinue.

Fast forward to today, I just finished my limited term treatment of V+O and according to my hemo/onc am in a very deep deep remission (uMRd-). I had a reaction to the Obin the second time through but it was handled so quickly I recovered super fast. I had also had a severe infection so that probably contributed. Other than some hair thinning and minor stomach upset, Venetoclax was much kinder in terms of side effects. It depends on your doc, your numbers and the facility whether you need to go in for the ramp up, but that is just dealing with the inconvenience.

I am so happy and grateful for the results. We have so much more knowledge now about these drugs you can feel certain that you will get through this just fine. Best wishes!

[unairdefamille in reply to Thundercat2]

Thundercat, Thank you for the reassurance and good wishes. Congratulation on your deep deep remission. Enjoy your life 👏💖

[Pacificview in reply to unairdefamille]

I also would like to encourage you to prepare a kit for any side effects that arrise. While I was in the infusion chair during my 2nd of 9. I developed a bad case of hickups. I asked the nurse if she had anything for them? She was about ready to give me demoral to cure them. Then my oncologist walks in and told the nurse I don't give that to my patients. Meanwhile, I am sitting there with serious hickups. That would produce a double or a tripple at a time. So, no hiccup medicine at the infusion center. So I sent a message to my oncology team to call in Baclofen. So every infusion I bring my own basket of drugs. Baclofen 10mg, Benedryl high strength 50mg, 8 hr tylenol 650mg, antinausea Ondansetron 8mg, tums antacid, cranberry pills in case of any signs of UTI, your prescription pain pill for just in case, Senna-S 50mg stool softener/laxative from walgreens, flonase in case for quick relief head histamine reaction, lip balm, eye drops like visine, thermometer. Oh, and mirrolax for home.

Over the course of this treatment. These items are what I have needed. The treatment can cause serious constipation. Prior to treatment I would use metamucil once in a while if needed. I was told do not take metamucil! Mirrolax and seena- s work much better. I will take 1 to 2 , 14 oz glasses of Mirrolax. Once at breakfast time and one after dinner. Taking 2 senna-s pills along with mirrolax morning and night. Depending on how well its working, I will vary from half of above to all of above. That has worked best for me.

With Metamucil I came very close to going to the ER for a clog extraction.

So I bring this little basket with my side effect drugs with me wherever I go. Leaving them in the car if I am out and about. I like to have them right by me in my home. Currently Benedryl seems to be my best friend. As I currently start to get allergic reactions to the Ven. It starts as a slight itch here and there. I like to catch it before it spreads too far. Then its easier to beat down with less benedryl dosage.

Its a crap shoot on side effects, but its best to be preparred. Drink plenty of water while on treatment. 57 oz a day as advertised in the paperwork is correct. If I did not get enough water I would feel misserable, so hydrate. The worst of it for me was Obin side effects the first month. I seemed to be dehydrated even though I drank 57oz through the day. What I found out for me was that if I took Ven at dinner. I would awake in the morning feeling aweful. So I learned if I sipped water through my sleeping hours I would feel better. I then shifted my pill taking to breakfast time. With the idea I could hydrate easier and deal with side effects prior to going to bed. I have stuck with that pill taking timing for a month now. It works far better for my body. As a note, during Ven ramp up you cannot change your pill taking timing. Once you get through Ven ramp up you can adjust timing to see what works best to make you feel better.

Thats all I can think of right now. Many people have no side effects. Lord willing may you fall into that group.

John

[unairdefamille in reply to Pacificview]

Aw, John, you are such a sweety. I love your practical approach. Better be prepared than sorry. Thank you. I am grateful and I'll prepare a care kit. Blessing to you on your journey. 🙂

[unairdefamille in reply to unairdefamille]

I read your profile, John, no wonder you are so efficient, having been a pilot.. you have great sense of humor too. 👏😊

[CoachVera55 in reply to Pacificview]

I love this John, better safe than sorry🙌🏾 Forewarned is Forearmed 💪🏾

[Pacificview in reply to unairdefamille]

I was in error about if an anti nausea or anti hiccup medicine comes in fast acting available formula. Check with your Doc or pharmacist on that question please.I deleted one sentence that I wrote you in the response above. So I would not mislead you or anyone else.

I have never cared whether it took an hour to work or not myself. But for some patients in might. Sorry about my error.

John

[Livingwith67 in reply to Pacificview]

John, I too have my last infusion today, so wishing you well and hoping you celebrate in some way. I feel half way deserves some acknowledgment,

Unairdefamille good luck, you will be well looked after by the nurses. It’s Normal to feel anxious, just ask as many questions as you can.

[Pacificview in reply to Livingwith67]

Wow, can't track much closer to that in treatment schedule. May the remainder of Ven go without hickups for you!John

[Gardengirl44]

God bless your 83 year old self! Yes good results here. My 56 year old self had WW for 1 year and treatment V and O as part of a trial, and I had good results. Hope you do well. Any questions just feel free to ask.

[unairdefamille in reply to Gardengirl44]

BLESSINGS to you too, GardenGirl. I will ask soon... 😊

[unairdefamille in reply to unairdefamille]

Gardengirl... My question, do you relate to John who kindly shared how he handled side effects? Did you have any, if so how did you handle then.

[Hilo13]

Hi I have 19 more days of ventoclax to go having completed 11 cycles this is the last .not that I’m counting 😂 My blood results and lymph node shrinkage have been excellent .I count myself very fortunate too have been offered this treatment it certainly seems to have given me a good result .

I have experienced a few stomach issues and the nausea lasts every morning for an hour or two nothing I can’t cope with . I had no side effects to the obinutuzumab . I feel good and am looking forward to NO MORE TABLETS for a while . Good luck as you can see from the comments here O and V is a very good treatment .

[Murmeli]

Few months left for me on V only. (V&O regimen). No severe side effets, but constipation despite the fact that I drink a lot of water, tea. I take Metamucil since recently and it helps tremendously. I was told to take it about two 2h apart from V intake, not to harm absorption of V.

I suffer from constant cold symptoms since months, which may be a side effect of V I was told, not much I can do to solve. Or I catch every virus in the air…but it is not something to worry, just a bit annoying. Hopefully it will go away when finishing tratment.

I am so grateful for this treatment, overall much better, energised, no muscle pains anymore and I can enjoy sports again since I am not suffering from heavy legs after a bit of exercise.

Don‘t worry, accept the treatment, look positively into the near future! It will be fine.

[Bill1288]

Unairdefamille: I just finished Obin infusion yesterday and have one more to go. Started 400 mg venetoclax Tuesday. All good. I was on acalabrutinib for 3 and a half years and then it stopped working for me. So now, staying on acalabrutinib, obin and venetoclax. Plan is to stay on acalabrutinib and venetoclax for the near future. Did not have any problems with infusions, except for minor hiccups. Believe it or not peanut butter and a slice of bread helped me? I was on Imbruvica before acalabrutinib and it gave me afib. My Dr. is watching me closely with platelets. As of this week they are at 51, I am taking eliquis for afib and will have to stop if platelets get lower.

But I am feeling a lot better every day. Leg and muscle pain minimal and it was a big problem before.

You will do fine. Best wishes,

Bill1288

[Wendy328]

I have my 3rd infusion today. I started a little differently and started with Venetoclax in March. I did have some minor blips. A little nausea at first Ondansetron worked great and a little constipation. Venetoclax seemed to work too fast and threw my blood levels off. I was hospitalized twice for 3 days each time, but I felt fine. If it wasn’t for blood work I would not have known anything was wrong I was carefully monitored. Obinutuzumab infusion have gone smoothly. Some restless legs the first night and maybe feeling a little off two days after But I continued to work at my part time job, maybe a little slower than us usual. I am 73 work one day a week at a florist. Good Luck to you!! Keep in touch so we know how you are doing. I too keep supplies on hand per John. Lymph nodes disappeared. I feel blessed this treatment is available. I was on W&W for 6 years.

[Poodle2]

I can say it's a miracle drug. Please feel free to read my posts. I was sharing updates throughout my treatment journey. I started off bumpy but it eventually settled and although I did have quite a lot of side effects, none that I could not cope with. Neutropenia was the worst one really as it caused a few infections to develop and linger (but I have three small kids so we all expected it to be an issue)...but luckily, all infections were managed well with the help of my team. Lost a lot of weight to begin with, put it all back on🙂I had a terrible diarrhoea and stomach cramps while on V but it settled with time and was not as regular as it was at the beginning of treatment. Sore gums - managed with salty water and mouthwash. Heartburn - settled with avoiding spicy food and taking the V in the evening...

I think you will do great. The first two to three months can be challenging but once you ramp up, you will find your new routines and settle into a new kind of pace.

All the best to you, keep us informed.

Petra ❤️

[Gamgam]

I had almost all positive experience with both. Only negative was mouth ulcers occasionally. Treated with Peridex and lidocaine.

[IRN83]

I had it three years ago and got to UMRD. But it only lasted two years and I have been treated with it again for the past 1.5 years.

[laurieq]

My husband is in a clinical trial at MD Anderson with Obin- Veneteclax and Pirtobrutinib for Richter's Transformation. He has done well so far - ramping up on the Veneteclax to 50 mg this week. Labs are good. Can't really tell a difference in the lymph nodes yet - anyone have any thoughts on how long that takes? He also has Afib - the dose of Veneteclax would have to be half dose if he continued on it, so he was switched to Metoprolol Succinate and is doing well. Hope your journey is uncomplicated. God Bless all of you! I'm so appreciative of all the information shared in this group!

[Skyshark in reply to laurieq]

Started V+O week before Easter. All the softer lymph nodes had gone by end of week 3 but CT scan showed I was still at risk of TLS due to internal nodes. A small hard lump under my chin was gone by end of week 2 of cycle 3 just as I started 200mg V. The week before I had expressed concern to the doctor that the lump was still there and then it was gone.

[DanBro1]

O+V is good stuff. I had mild side effects when I started Obinutuzumab (mild chills + fever), but after the first month of low dosage infusions, no issues. I had zero problems with 400 MG daily Venclexta. One year later, I was in remission, i.e., no detectable CLL. Stop worrying. 😁

[xpetes]

I started V+O in June. The first tiny infusion of O made me feel awful, but only temporary. But after the 2nd day I ended up in the E/R with a slow heartbeat (35). They did an EKG and sent me home. Next night I spiked a fever of >103 and was back in the E/R, this time I was admitted for 3 days with neutropenia. We took a couple of weeks off for me to recover and then resumed the program. Since then there have been no issues with the O infusions and I had no issues ramping on on the V. Yes, the start was 'bumpy', but its been fine since then. The infusions are a little disruptive since the benadryl makes me sleepy that day, and then it wears off and the steriod (dex) makes sleeping impossible that night, so its two days you have to keep relatively free of commitments, but other then that it seems fine. And my blood labs have been greatly improved, so the stuff is really working!

[81ue]

I started 2 1/2 years of venclexta plus rituximab (an older -mab than O) after imbruvica failed. I'm now in remission and off medications 8 months now. Everyone's situation is different, there are no guarantees with any course of treatment we try, yet be assured that our doctors will try to find the best treatment options for us. It's my hope that you will respond favorably and find it to be an effective treatment

[Rico49]

yes. I started v+o on June 12.I had an interesting reaction on first dose , which is quite common, but nothing since then. I've had no side effects amazingly from the gazyva but appear to have had side effects from compazine which I was taking as a precaution. Never had any nausea. Changing to zofran for next cycle.

My anc went to. 4 my hemoglobin dropped to 7.2 and platelets were 32 after initial dose. I had a shot of Udenyca and two units of blood and everything turned around.

in only 5 weeks my hgb went to 8.7, platelets to 186 and anc 2.8.

started venclexta 6 days ago.

Praying for continued progess.

my progreess so far has exceeded my expectations.

Hgb up to 9.7 this week so marrow is starting to work again. I feel very fortunate.

Good luck with your treatment.

[Skyshark]

Infusion reactions are common on first two days, be prepared pack a bag. My first infusion was at half rate, took 8 hours and with the time they took to sort it out and restart it ended after midnight. I was so disappointed and worried about the next days IV.

Day 2 and all others infusions have gone just fine. Easy peasy.

I advocate for PICC lines until after cycle 3 infusion, first 9 weeks. That avoids 6 cannula for infusions and about 18 punctures for blood tests, or 30 if high risk TLS. The chemo nurses were disappointed when I had it removed as they would have liked it to stay until the last infusion on cycle 6, 9 IV and 21/33 blood tests. Even with a dressing change it's less trouble and risk for them. The odd thing was although the chemo nurses are all for a PICC line, my doctor was somewhat dismissive and didn't offer it, l had to demand it.

[Big_Dee]

Hello unairdefamille

I am 8 months into V&O and bloods are acceptable. I however was placed on 200 mg max dose of Venetoclax due to very mild beta blocker. I convinced my CLL Specialist that I did not need beta blocker or nitro. After review by my GP, I dropped beta blocker and went to full 400 mg full dose. The Obinutuzumab can be rough on first IV, but had clear sailing after that. Blessings.

[Gradyboy]

I am 8 months in on this treatment and other than being a little tired after workI haven't had any side effects. Well a little constipation here and there. I highly recommend taking your Venclexta right after dinner. I was advised by many others to do this and I have never had any nausea. I seriously can't even tell I've taken anything. My blood work is excellent and had a Pet scan last Friday that showed no lymph nodes cancer, spleen went from 21cm to normal. So far I am very pleased with this treatment. This is my first treatment. Best wishes to you and try not to be scared. Many people have little to no side effects and great results. I started right before my 61st birthday.

[unairdefamille in reply to Gradyboy]

Thanks Gradyboy. WOW, I do wish my journey is as smooth as yours. Wishing you to continue progressing to great health 😊💚

[Classicaljazz]

Like you I also had some heart problems from acalabrutinib but none with O+V! The best part is that after completing the 12 months, now I do not take anything for CLL. I am soooo happy that I feel good now -- I was very sick when I started treatment and feel quite normal now. I needed a beta blocker also after acalabrutinib, which made me feel poorly. During the months of O+V my cardiologist let me reduce the metoprolol dosage slowly while wearing a Holter monitor for a month, and finally stopping the beta blocker. That also improved life a lot.

[unairdefamille in reply to Classicaljazz]

Great to hear Classicaljazz. May you continue to feel good and happy. ENJOY YOUR LIFE 💚

[Pearlpink]

I’m on O &V and I too think they are miracle drugs.

My spleen was massive and after 4 weeks it had halved in size, and now normal. One of my relatives died many years ago of a different blood cancer, when she had to have a splenectomy for a massive spleen. It’s amazing to think that now we have drugs that melt away the big spleens away in weeks!

I feel very lucky! I also feel very lucky to have met so many people during my infusions. They will always be friends. Weirdly I miss those infusions because of the incredible support you get, just when you need it!

Now, in an incredibly efficient manner, I get my venetoclax tablets in the post every month, and only have bloods every 8 weeks. But I miss the camaraderie so that’s why I think this site is so wonderful!!

I’ve not got long to go on the tablets!!!

Good luck!

[skipro]

I had an unusual problem for the first couple weeks and other than intermittent nausea and diarrhea have done well for 6 months

God bless and good luck to you