Obinutuzumab + venetoclax

[Jasmine_tea]

Scheduled to start treatment end of the month to have CLL under control.Felt fine otherwise and it’s pretty nerve racking going into a year long treatment.Dr mentioned 70% of patience has 5 years remission after treatment….just wish to hear from real patients who have done same treatment to share their personal experience.thank you sincerely❤️

[Dexterdoggg]

I am a little over 7 months into this treatment and a lam doing fine. I had a reaction to my first obinutuzumab infusion. About 30 minutes into it, my ears started getting warm and it traveled to the top of my head. I started sweating a little and started feeling nauseated. They stopped the infusion, and checked my vitals. They gave me a hydration IV and some pepsid and started the infusion again. I had no issues with any of the other infusions. You can check out my numbers in my profile. I have to do a little updating soon but there haven't been any other issues not in my profile.

[Jasmine_tea in reply to Dexterdoggg]

Love your numbers! Thank you for sharing. This is great to know. Best of luck with your treatment

[Lilsa]

Hi Jasmine _tea,

I just completed my 1 year o/v treatment. Please don’t worry about it…. It just becomes part of life and I honestly think a large percentage of patients are extremely tolerant of this treatment and life trundles on very much the same.

In fact I found that about 3 months in I I was feeling so much better. Someone else on this forum described the feeling as sand bags that had been slowing me down for years were lifted off my body! It was a wonderful liberating feeling but as is usual with us humans after a few weeks of amazement, I totally took this new feeling of good health for granted.

My advice is keep up hydration and keep walking.

best wishes

Lilsa

[Jasmine_tea in reply to Lilsa]

Lisa- this is so good to know! Hydration and walking- got it!!

[Murmeli]

Hi Jasmine_tea

I am just a little ahead of you. Started O early September and now at week 2 with V (ramping-up phase, currently 50mg/d.).

I had a fever after the first two splitted i.v. doses. After additional blood test it was proven not to be the TLS, so I took antibiotics and Paracetamol for a few days to protect from potential events, as my L dropped from 202‘000 to 2000. Docs seemed to be a bit worried, but they took good care, no hospitalisation. I mention this not to worry you, but to show how effective this treatment is. Faith and believe in tratment.

My lymph nodes mostly gone, one stuck under my collarbone, I am trustful this will go as well. It is a really good feeling to see those leaving so soon after initiation!

Don‘t worry about the year of treatment, it goes quickly for us.

Infusion day makes me tired, due to concomitant meds; I believe it is the antihistaminic drug, which they give to prevent from allergic reaction. So I take this day fully off work. But besides that feeling well, work 100%., Not up to sports yet, but Yoga is ok for me right now.

I wish you success and confidence in upcoming treatment cycles. They pass one after the other so quickly.

Murmeli

[Jasmine_tea in reply to Murmeli]

Thank you! Will have faith in the upcoming treatment!

[Murmeli]

abd forgot to add: I drink 2 liters when under i.v. treatment at the clinic and try to do so every day. It seems to increase tolerability of these drugs!

[Poodle2]

Hi Jasmine,

I'm in cycle 4 of this treatment and you can read my other posts. My journey has not been straightforward but it also wasn't too dramatic...most importantly, I'm feeling great, the best in a very long time. I would add that there are a lot of links to studies on this treatment in one of my previous posts when I asked this wonderful forum for the pros and cons of this treatment, you should read them. I would also add to your doctor's statement that 70-80% people on this treatment have 5 years remission for now as that's all the data we have for now - the treatment is new - correct me some one if I'm wrong but that's my understanding...so it could be even longer, we just don't have the data for that yet.

All the best.

Petra ❤️

[Jasmine_tea in reply to Poodle2]

Petra, how about this treatment may remove the “CLL” label forever❤️

[Poodle2 in reply to Jasmine_tea]

This might as well be the possibility for some of us, who knows...🙂

[Flute117]

I completed O+V just about a year ago and I am still uMRD. I had one infusion (about halfway through) where I developed a ticklish cough and they suspended the infusion to give me IV Benadryl. As soon as the coughing stopped, they continued. The cough was likely unrelated, but they are always abundantly cautious. I also experienced diarrhea and lost about 12 lbs while on V. I worked with a dietician which helped immensely. I know a year sounds long, but it flew by!

I wish you the best on your treatment journey!

[Jasmine_tea in reply to Flute117]

Thank you! It’s informative to know what could happen and how to address it. I like being prepared going in. Really appreciate it.

[SofiaDeo]

Hi Jasmine, welcome to the group no one really wants to belong to. We have a lot of Pinned Posts that can help educate you about what this diagnosis means, and things to learn so you can achieve the best outcome possible. They are off to the right of the screen if you are using a browser (I don't use the app, so IDK where they are on there). It takes time to soak all this stuff in, don't be concerned if it doesn't make sense at first, or if you don't "get it" easily. Just come here & ask questions when you are stuck, or have concerns.

Patients who learn about, and get involved in, what's going on tend to have better outcomes. They know what to report to the docs, and what isn't worth worrying about too much.

I'll mention that filling out your profile a bit helps us, help you. I don't agree with answering all the questions put out nowadays since this site was purchased by a biomedical research company. Even if I remembered or could look up the answers to a lot of the questions, I think it's none of their business to know exactly this or that. So while I have written extensively in my profile, it's only like 80% complete. If you tap on our avatars, you can see the information and kinds of things we put in our profiles. I mention this, because in medicine, it's not common that a "single thing" like a lab number, standing alone, has a great meaning. It's more the whole picture; other labwork, symptoms, other disease states, other medications. Some of our diagnostic lab results can have a meaning, as well as which country we are in can modify an answer. Many of us will check a profile before answering a question, because of this.

[Jasmine_tea in reply to SofiaDeo]

This is a great forum Sofia! It’s comforting to see how generous everybody is to share their personal experiences in order to help out another! It’s probably take me some time to fully master what this can offer but I truly am very grateful with all these wonderful info I have received.

[craterlake in reply to Jasmine_tea]

Amen to that 👍😊

[Big_Dee]

Hello Jasmine_tea

Everything should be ok. On my first infusion with Obinutuzumab I crashed with anaphylactic shock, but a quick-witted infusion nurse gave me an EmiPin shot and pulled me out. Due to some good advice on this forum, I continued the Obin infusions and have not any farther issues. I will continue Obin infusion for next 5 months. I also started Venetoclax on Sept 29 which caused elevated temp and chills. Doctor had me back off Venetoclax to 10 mg. I have had fever up and down after each pill, however I am turning the corner with temps going down, so will get worked out. After this I should be in good place with smooth sailing. I want very much to complete this treatment rather than do another round of B+R. Blessings.

[Jasmine_tea in reply to Big_Dee]

Thank you for sharing BD. Hope all is good and smooth sail for you from this point on!

[Poodle2 in reply to Big_Dee]

I had fevers after each dose increase of V too, interesting.

[FiddleMD]

Jasmine_tea,

I started the same protocol in March, 2020 and finished in February, 2021. As of today my blood counts are all normal just above the lower ranges. My platelets are 155, up from 77 when I started.

In general I tolerated the drugs fairly well with the following side effects.

1) fairly intense heartburn which became manageable with Pantoprazole.

2) trouble staying asleep. This was manageable with daily Benedril. I’m off the Benedril now and do have issues with continuous sleep.

3) could not tolerate any alcohol

4) could not tolerate any kind of fish

5) periodic fatigue. This was not a constant problem and I attribute that to exercise. The more you do the better you will feel.

6) my hair thinned a bit and went gray during the treatment of

I think that is everything. With the exception of the sleeping issue, and hot flashes which started about 3 months ago I feel good. I really believe exercise is very important when dealing with CLL.

I hope this helps and good luck to you.

John

[craterlake in reply to FiddleMD]

thanks for the details John ... keep looking up . james 👍

[Jasmine_tea in reply to craterlake]

Keep the exercise going John- I got the same advice from another generous feed. That might be the best thing you can do to get rid of the rest lingering issues. Thank you for sharing your journey and how you addressed it. All very helpful!

[Edhair97]

Hi Jasmine,

I started O in June, V in July. I have had no problems with the O. The V has caused some muscle pain and hair shedding. Mild nausea is easily controlled by Zofran ODT and compazine.

I take allopurinol daily to protect kidneys and keep uric acid down.

Protonix for heartburn.

Overall, I feel better since starting treatment.

Swollen lymph nodes and giant spleen are now normal size.

It’s extremely important to drink water and to stay hydrated. I keep an insulated cup of water with me at all times. Also, I drink 1 electrolyte drink daily.

Good luck!

Sallie

[Jasmine_tea]

Thank you Sallie! Noted on drink abundant of water. Hope your treatment continues to be a huge success! Not only you are helping me with your shared info, you are helping everybody who is reading this. Thank you❤️

[OmBewok]

I'm nearly out the other end of my 12 months of V & O, and I could not really have been happier throughout. I was very apprehensive before-hand as I don't manage pain well. In truth, I did have some issues in week 1-2 (including several days in hospital with Neutropenia), but the staff handled the situation very smoothly. I always felt well-supported, and quickly adjusted to the treatment, including the infusions. After a month or so, the days of the O infusions eventually became familiar and mundane; I took my laptop and watched DVDs very comfortably, chatting with staff and other patients, and feeling enormously thankful that I was able to get such good care .

As my specialist had said to me before I commenced my treatment, 'I suspect you'll find it much less problematic than you now imagine.' He was correct. I had virtually no side-effects after week 2 and was back to enjoying life, feeling stronger, within weeks of commencing the O.

Now I have only 6 weeks of V left before I complete the course. I'm hoping for a long remission (isn't everyone!), but looking back, I would recommend V&O enthusiastically. I'm sure you will be fine!

Previous replies have included lots of excellent advice: lots of water, regular exercise, patience, and an eye on the long-term benefits of the treatment.

Good luck and best wishes!

Om