What to expect from v + o initial treatment

[ronsolo306]

I am a 77 year old male about to start venetoclax + obinutuzumab. What should I be aware of during the first stages of the treatment? I'm obviously concerned and would like to go in as psychologically prepared as I can be. Thank you in advance for your advice.

[cajunjeff]

I think you can expect some mostly mild and tolerable side effects early on with venetoclax that improve over time, if you have side effects at all. I think you can expect a possible infusion reaction with your first dose of obinutizumab that can be managed by slowing down the infusion rate, and then episode free infusions after your body gets used to the drug. I think you can expect to have a very good chance of getting rid of all detectable cll and having a very long and durable remission.

I am not on that combination, but that's my take based upon reading the experiences of others. Good luck, I bet you do great on this combo.

[LovelyLilyGirl in reply to cajunjeff]

Thanks for the reply and reassurance. I will be starting on V + O March 3 and I am going into it with a very positive outlook for a positive outcome

[RoninKelly in reply to LovelyLilyGirl]

I am right behind you Iris.

[Smakwater in reply to LovelyLilyGirl]

Iris123,

I went through O+V the past 15 months. Jeff pretty well covered it in a nutshell. Here is the medium long version:

My observation in the trial group was that generally we all responded similar with regard to tolerability, that is to say very well. I would add that all in my group were first line patients with no significant comorbidities.

Infusion reactions with the obinutuzumab occurred within the first 3 infusions, but nurses quickly adjusted patients rate of administration, and reaction recovery was attained within 20 - 30 minutes. those reactions were mild rigors, brief nausea, followed by a short lived oral expellation. I know of no-one who had more than one reaction, and there were very few of them. Unfortunately I was one of the few, but it was only one time and just a few minutes long. Expect some hypertension and sleeplessness from the steroids on the night of infusion. Stay close to the restrooms on infusion day and the day after. You will be on an IV from 4 - 6 hours during infusion, and will have periods of sleepiness and feeling cold. Bring fluids, food, and something to occupy time with like a book, or laptop. Expect your blood counts fluctuate out of acceptable range, and do not be overly alarmed, but rather review them with the doctor as this is temporary condition of the drug response.

I know of no significant challenges with our group regarding the venetoclax. Most of the aggravation related to venetoclax started at about two months on full dose and evened out by month seven. All adverse conditions were relatively mild and intermittent . Conditions included rash and itching, muscle cramps especially at night, sinus influence, dry cough, diarrhea, a bit of nausea, and some stated mild UTI's. The most concerning is the neutropenia which not all experienced, and the neutropenia is managed with a G-csf.

Adequate hydration is a key element all during this treatment. I would consume no less than 64 ounces of water throughout each day during the entire treatment.

Currently clinicians have experienced high success with this therapy and the patient history primarily shows favorable tolerability such that the choice for this treatment can be made reasonably with confidence and a sense of contentment.

We are all individuals, and you will have your own unique responses, however, it sounds like you are well prepared. Stay on your game with no obsession, listen to your body , and clearly present your concerns to the medical team with appropriate timing.

You Got this!

JM

[filmcaptive1 in reply to Smakwater]

This was so INCREDIBLY informative!!! I start next week. Thank you.

[DRM18]

Hi ronsolo, Click on my profile; I’ve been on O + V for 2.5 weeks now, & I’ve been posting about my experiences. Good luck to you!

[LovelyLilyGirl]

Im starting V+O March 3 After 10 years of watch and wait. I have heard wonderful results from these drugs and am going into it with a positive outlook. Best wishes to you. You’re going to do great!!!

Namaste

[Sushibruno]

Wow 10 years watch and wait that's amazing. I would've loved that. But i think I'm going into treatment soon after 2 years😥.

[Mldeterm]

Husband is on V+O along with Ibrutinib too and it’s been blissfully uneventful. The venetoclax ramp up was logistically challenging with extra labs but he has not had any negative reaction to either drug and is doing fantastic 11 mos in. Good luck to you!

[Coolerjoe]

I am on the I+O+V trial and in the same cycle as midterms husband. My experience is pretty much as Cajunjeff describes, reaction to the O then the slower ramp up. Neither of the other drugs nor the 2 or 3 drugs that go along with it have given me much issue. Will be taken off V after cycle 14 than a slow cruise to cycle 19. BMB and hopefully be saying i am MRD.

[CLLBGone]

O+V has been a very easy ride for me. I'm 70, and was W&W for five years.

Diagnosed with an enlarged spleen early Oct 2019. Entered an O/V trial in the middle of Oct. As things stand now I only have three more Gazyva treatments left, started with a "baby" dose of Venetoclax middle of Dec, and ramped up to the full 400mg dose by the middle of Jan 2020 and that daily dose should continue thru the end of this year.

I was advised to drink plenty of water which I started doing in early October, right after my enlarged spleen was found. I tried to drink between a half gallon and gallon a day. Currently, my spleen is back to a normal size and my blood work looks very good. In fact, my bloodwork showed significant improvement shortly after my first 100/900 Gazyva infusion. Hopefully things will continue in this positive direction. Good luck with your impending treatment.

[IRN83]

Before I relate the bad news I will begin with the good. I’ve had CLL for 12 years and have had FCR, BR, and IB treatments with poor results. After a year of V&O I am MRD Negative! No cancer cells found in my bone marrow.

IMO, V&O is a cake walk compared to FCR BR and IB. With that said, I did have some serious issues with V&O. During the V ramp up I had very very low platelet levels, hemoglobins and other counts. Also had high potassium and sodium levels. At the end of the V ramp up I ended up in the hospital for 2 weeks with Sepsis and pneumonia. My oncologist almost took me off of the V and put me on CAR T. In my case the V didn’t work until they started the O. My oncologist believes that my bone marrow was so beaten up by the previous treatments that it couldn’t tolerate the high dose of V. Ultimately I was put on a 25% V dosage.

Once I got out of the hospital and after a short break they started the O infusions. I had a few mild reactions to it. Total mind fog for an evening, I couldn’t do simple math. I would get the jitters, hands shaking, etc. I had to let my wife drive. But the next morning I was fine. Compared to the FCR and BR infusions, where I was sick for weeks, and swore I would rather die than go through that gain, this was a piece of cake. I never had any sickness or bad effects.

I actually enjoyed the O infusions. It was relaxing to sit in the chair for 4-6 hours. A break from work. Just a time to Relax.

Yes. I am younger and have been working through all of these treatments.

I pray this treatment works superbly for you and that you don’t have any serious issues.

[Flute117]

I am so glad I found your post. I am about to start O +V treatment - first O infusion in 5 days. I am being treated for SLL (still mostly in lymph nodes - not so much in blood). Was diagnosed 15 months ago with no symptoms (found during a routine cardiac calcium scoring scan) and was in watch and wait until now. A bit anxious about the whole treatment but the responses you have gotten give me a better sense of what to expect. I would love to hear more from others that have gone/about to go through this treatment.

[ronsolo306 in reply to Flute117]

Hi,

I too was very apprehensive. I found a YouTube video from a person who filmed his Gazyva infusions with comment. You can find it on YouTube (My First Obinutuzumab (Gazyva) Infusion). While he had a problem with the first infusion (100 ML), his was much worse than mine. My problem was slight flushing in my face and out of precaution, I mentioned it to the infusion nurse who stopped the infusion and substituted a saline solution for about 15 minutes, did a blood pressure test (all good), and resumed the Gazyva without any incident. Returned yesterday for the remaining 900 ML with absolutely NO issues.

I have 2 more infusions scheduled then start venetoclax. Am anxious about the ramp up period for the venetoclax but am looking forward to positive results.

I wish you All the best and please stay in touch.

[Flute117 in reply to ronsolo306]

Had my first two infusions yesterday and the day before. Absolutely no reactions. I am thoroughly exhausted today. Do you know if that is normal? And if so should I expect to be tired after each infusion?

[ronsolo306 in reply to Flute117]

By the way, remember to stay well hydrated prior to an during the treatment. I'm drinking 2-3 liters of water a day per the advice of many and it seems to be necessary and help

[Flute117 in reply to ronsolo306]

Thanks so much for your responses. It will be helpful to kind of compare notes as we go through this. I asked my specialist about extra hydration before infusions and he said it wasn’t necessary due to the fluids in the IV and that there can actually be too much hydration. I plan to increase my hydration a bit - just don’t want to overdo.

Did they give you a steroid with the infusions? I’ll be getting a high dose of acetaminophen, Benadryl, and dexamethasone (steroid).

Hoping for minimal issues. Fingers crossed. I start in 4 days and will be following same regimen as you with the Venclexta starting the week after the 4th infusion.

[ronsolo306 in reply to Flute117]

Hi,

Like you, the first week I was a bit tired, but have now received my 2nd infusion with no issues and to date no tiredness. Blood counts improved dramatically after the 1st infusion and of course I look forward to continued improvement. Yes, I did receive the same premeds as you with the first treatment. 2nd only Tylenol. My doctor recommends lots of hydration and I don't think that you can overdo it. It helps eliminate the white cells as I understand. Check with you doctor for confirmation on that.

You'll be fine, the 2nd infusion was totally uneventful, and I'm very thankful for that. Please keep us informed on your progress. All the best.

[Canuck901]

It’s a very good treatment , the first infusion seems to have some speed bumps while your body adjusts to the medication , once the first one is over the rest seem to go better.

Then the Venetoclax comes along to knock out the CLL

[ronsolo306 in reply to Canuck901]

Thank you, I actually just began treatment yesterday. First infusion did have a small “speed bump” but resolved in about 30 minutes. Nothing major just some facial flushing. Everything went smooth after that. Today I am receiving the remaining 900 ml Gazyva at a faster infusion rate than yesterday. So far I’m about an hour and a half with no issues and feeling good. I look forward to the balance of the dose being as uneventful.

Will continue to update as this journey continues. I will appreciate your thoughts as to what to expect when venetoclax is added to the program.

Thanks for everyone’s input and advice.