I’m starting V&O in mid-March and wanted to ask the collective group for any (non-medical) suggestions to prepare for treatment. CT Scan & Bone Marrow Biopsy completed.
I’ve been prescribed acyclovir and allopurinol for a couple of weeks prior, and then Prednisone the night before and day of the first Gazyva infusion.
The Genentech site recommends drinking extra water a few days before treatment and the day of and after.
Does anyone who's been down this road have any suggestions on what action were helpful for them, or things they wish they had known to do beforehand? Anything to bring with me for the infusions?
Thank you
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RufusHank104
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Excuse this medical tip, but it's very important, because you won't be making any antibodies from infections or vaccinations for up to a year after your last obinutuzumab infusion. Are you up to date with all your non-live vaccinations/boosters? healthunlocked.com/cllsuppo... You may still have time to squeeze in what could be life saving vaccinations, healthunlocked.com/cllsuppo... The big ones being prevnar (prevnar20 if you can find it) for pneumonia - the most common risky infection when you are in treatment and a bivalent COVID-19 booster. It takes about 2 weeks for healthy B lymphocytes to mature into plasma cells that churn out what can be life saving antibodies. When you start treatment, the V&O kills off healthy B cells as well as CLL cells.
With respect to non-medical tips, obinutuzumab infusions take a long time (5 to 6 hours minimum), particularly if they need to be temporarily slowed or stopped. So be prepared with plenty of reading, listening and viewing material. It's not unusual to have a dramatic infusion reaction to your first obinutuzumab infusion, then it's quite rare to have another one with the remaining infusions. During your infusions, be alert for any change in how you feel and alert the nursing staff promptly. You'll find it reassuring if your partner or a friend can be with you during at least your first infusion.
You really shouldn't drive after your infusions due to the effect of the premeds and infusion on your alertness.
You are embarking on a well trod path - there are lots of shared experiences in the Related Posts section below or to the right of your post. Let us know how you go.
Thanks Neil - Yes, I'm up to date with all my vaccines. I appreciate the info/advice. My wife will be taking me and good idea to bring reading material. It has been very reassuring to see all the folks on this site and the positive responses.
Hi Neil, I Was initially given misinformation by a regional heamo in Aust about vaccinations so it was a bit of a rush to try and get them in pre treatment. I had the two shingrix shots and all the covid boosters and evusheld and flu shot. I also had one Prevnar 13 shot and was told by my gp that they do a further pneumonia shot 12 months from the first one (but that would be mid treatment on O+V combination.) I also had 2 HepB shots pre treatment but need a 3rd one in a couple of months. Will those shots mid treatment still have some effect do you think?
You've done well! T cells are barely affected by CLL treatments, so you should still get a cellular immunity boost and possibly a boost from your memory B cells to improve your existing antibody protection.
Hi Neal. My Dr just decided to start me on v+o . We meet next wed to discuss when.
I have taken your advise and reviewed my Vac status with my primary care Dr. I am in good shape except for one possible addition. I have had Prevnar 13 and 23. She said the CDC doesn't make a specific recommendation on Prevnar 20.. My primary care Dr recommends I get it. I saw CLLEROZ's info under support but am still looking for specifics for Prevnar 20. Or is this just up to your Dr's preference? Any ideas? Thanks
The Pneumovax 23 protects against 23 common strains of pneumonia, the Prevnar 20 has 19 of these 23. So *if* that last strain of the Prevnar20 that is not in the Prevnar 13 or Pnemovax23 combo, is a common one in your region, it would make sense to get the Prevnar 20 IMO. You don't say how long ago you had the Prevnar 23, if it's been since 2021, or if you've had infection problems, your doc may be concerned about coverage with the one extra strain. Especially if it's prevalent in your region. Your doc can verify this by local/regional published antibiograms. FWIW my CLL Specialist recommended Prevnar23 for me, in the Rocky Mountain region. I also had an earlier pneumococcal vaccine.
Another thought, is that the Prevnar 20 and Pneumovax 23 are different types of vaccines. One is a polysaccharide, the other is a conjugate. Who knows if one works better in an immune compromised patient. Getting both, if not otherwise contraindicated, may provide extra protection. Especially if some time has elapsed between the vaccines.
Hi Rico, It's great to hear of your good result from your review of your protection against severe infections provided by your vaccination coverage. With respect to bacterial pneumonia protection, I see my Aussie admin colleague has answered this question by you in our pinned post on vaccines; healthunlocked.com/cllsuppo...
Further to SofiaDeo 's reply here, this 2018 Swedish study pubmed.ncbi.nlm.nih.gov/297... confirmed earlier CLL specialist advice that the prevnar Pneumococcal conjugate vaccine triggers a better immune response than pneumococcal polysaccharide vaccine in patients with chronic lymphocytic leukemia.
With the current catch up efforts of the prevnar vaccine to match or better the bacterial serotype coverage provided by the older pneumovax vaccine, official advice can also be in catch up mode , which is why both the CLL Society and our community provide regular updates.
I think you are all set. I don't know how you feel and if you are symptomatic but even though my journey was a bit bumpy to begin with, I felt better straight after the first infusion. To me, it felt like magic, really. I try to post as I go through my cycles so you can read about my journey. If you use the search button at the top and type Obinutuzumab and Venetoclax it will bring up all the posts where it has been mentioned. I think I read pretty much all of them before I started and it was good as I felt prepared for the first infusion (and a lot of other things) as almost everyone reacts - some with very mild symptoms and some quite dramatic. It was reassuring to read how the teams are absolutely always prepared for that and how quickly they act and as Neil said, once that is out of the way it is usually plain sailing afterwards in terms of O related reactions. It's a great treatment, very intense during the first 2 months as it's a lot of infusions, lots of hospital visits during the ramp up for V and lots of blood tests but it's all worth it. Good luck with your treatment. Petra
Petra, Thank you for the note back. Just read your posts. Glad that you are doing well, despite all the colds and infections. I'm hoping I have an easy time with this!
Bring snacks or lunch depending what time you have treatment. I always get really hungry during infusion. I usually sleep the first two hours from the benadryl then just kick back and watch TV for the remaining couple hours. I always feel fine after, maybe a little off but not sick. The steroids they give me pre infusion wire me for a couple of days. I just had my 5th cycle on Monday and will have my last infusion 3/20/23. Then I just take my pills everyday and live a very normal life. This treatment has been very easy for me. Hope it will be for you also. Is it the first time you have been treated for your CLL?
Good idea on the snacks. Yes, first time to be treated. I'm 55 and been on W&W since 2016 (I've been lucky). I appreciate you taking the time to help me ease the anxiety. good luck with the last infusion next month!! congrats
My first treatment also. I just turned 61. Physically I feel just fine. I just need to get there emotionally. LOL I read great things about this treatment, praying it works well for all of us. Best of luck to you. Keep us posted.
The Benadryl can be a good thing. I didn't expect it to knock me out, but it did. My wife who drove me there always knew id be in coma for a few hours. Water helps take your premeds plenty of snacks. Some have no problems others struggle. Seems the cure is just a fickle as the disease. I'm on venetoclax now due for my 6 month checkup and will see where i am at. Prayers that you have no issues and that the treatments are successful.
I was freezing cold and felt icky for the first 30 of the O treatment, but it passed quickly. I had to ramp up V in the hospital and I was out of my mind with boredom and generally feeling sorry for myself, so download lots of great movies or bring something else to do. And yes, snacks are a good idea. I should have thought of that at the time. We did get fed a sandwich during the O treatment but my current UC trial has no food and I was in a panic the first day because I was there 12 hours (I eventually realized I could get food delivered), so you'll probably want to make sure you are covered. You'll do great!
I think the water is one of the most important thing, so I take a couple of travel mugs with me that you can top up easy while attached to drip.
After being admitted one time (not scarey, just for a temperature) I have earphones, charger, some good audiobooks on my phone, and some snacks because I’m coeliac.
Have made some good friends, and wonderful nurses who keep you wonderfully safe. I will miss them all when I stop infusions I think!
Good luck! It’s an incredible set of drugs and you literally feel it working!
My laymen suggestions. have someone go with you for driving and most importantly to watch you during infusions. Those infusion nurses are very busy and I had anaphylactic shock on first infusion, were it not for observant infusion patient next to me, I would not be here. Due to hot flashes, I took portable fan and lots of food as long long day after blood tests, doctor consult and infusion. Blessings.
However much water they tell you to drink, drink more. Especially after the Benadryl and when the first dose of V gets going. They first day was tough for me. Much better after that. Good luck.
Put into practice as many health oriented habits as you can and plan on continuation throughout therapy and beyond. E.g, exercise, diet, hydration, assertive hygiene behavior such as appropriate hand washing, disinfecting surfaces, avoid face touching, and limit exposure to risky environments like crowded indoor gathering and close contact.
Familiarize yourself with the measures on your blood labs with a particular interest on creatinine in relation to your hydration habits, and develop an awareness for fever to prevent progressive infection.
Continue to maintain the balanced perspective with regard to everything else in your life.
I had O + V. I am giving the bad first. My doctor told me the 1st couple of weeks of treatment would be rough. My first day of O was rough and got easier after that. I needed 2 blood transfusions at the beginning of treatment because of my blood counts. I had one trip to the ER because of a fever. Within a couple ofof weeks, my lymph nodes got smaller and I finally had a neck again. I exercised every day. At the start, it was usually walks. I also found getting up and walking around the infusion center helped. Yep, I walked around with the pole while getting the infusion. I also brought stuff to read, listened to podcasts and downloaded stuff to watch. I was there for several hours. Within a couple months, my doctor me I was normal. I said that I have a few friends who would disagree. He clarified my bloodwork was normal. Having a sense of humor help.s. With V, I drank a lot of water for the entire treatment. It is highly recommended to drink a lot of water.
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T cells are barely affected by CLL treatments, so you should still get a cellular immunity boost and possibly a boost from your memory B cells to improve your existing antibody protection. 
Starting V & O combination therapy
Finished 1 year V&O
Starting V+R 
V&O treatment is over
