Starting V+O immunotherapy

[jimwilmes]

I'm a U.S. citizen living in Peru, where the only treatment option for my CLL through the government health system would have been chemotherapy. My hemoglobin had been falling below 8 pretty consistently for the past two months, so my hematologist recommended I begin treatment in the U.S.

I started looking for information about treatment centers that were closest to where one of my relatives live, and was pleasantly surprised to find out that my sister lives just 45 minutes from the Mayo Clinic in La Crosse, Wisconsin, so I decided to stay with her during treatment. It took a couple of weeks to get scheduled for treatment, but last Thursday I started -- obinutuzumab and venetoclax. I had to be transfused the day before because my hemoglobin and dropped to 7.

The first infusion of obinutuzumab caused a strong reaction of chills and trembling, which they were able to treat with Demerol. They said it was the worst reaction they had seen. After infusing just 26mg of the planned 100mg, they sent me home. But with just that small amount, my leukocytes dropped from 148 that day to 40 the next day. On Friday I had another treatment of 900mg (uneventful, but with lots of premeds including corticosteroids and more Demerol). Today my leukocytes are at 2.

I felt weaker and dizzy and more breathless this morning, so they asked me to come in to do some lab tests. They didn't find anything concerning. I'm still trying to figure out what my "new normal" is, so that I don't become alarmed by symptoms that aren't indicative of danger.

My treatment plan is four infusions of obinutuzumab during the first month, then one each for 5 more months. I'll start venetoclax on day 22 and continue to take it for a year.

[jimwilmes]

Thanks, Tom. Some very good advice.

I have never have any physical symptoms like night sweats or swollen lymph nodes -- just slowly declining hemoglobin and platelets. I've become used to fatigue and breathlessness because of my anemia (and it doesn't help that I live at 11,000 feet above sea level!). So if constant fatigue is my companion for the next year, I think I can live with that, hoping that it will improve a few months after I finish treatment.

[SEB0607]

hi there, good luck on your V&O journey, main tip from me is to drink lots and I mean lots of water and exercise as much as you can. I am on week 28 of the 48 week programme identical to yours and other than chills on first O infusion and feeling tired in first 2 weeks, so far have had no side effects, am back to being full of energy, my bloods are in a great place and other than taking my tablets every day I don’t feel like I am on treatment. Most people find the first two weeks most difficult and the first 9 weeks are intensive with all of the hospital visits but after that it gets easier and now I only have to go for a blood test and see my consultant once every 2 months. I am back to running, skiing, swimming etc. I am keeping away from groups of people to minimise my infection risk although planning to open up more after next month (which will be 3 months post my last infusion). I do hope your journey is as smooth.

[jimwilmes in reply to SEB0607]

Thanks for the advice and the hope. I've had very low hemoglobin for months, so my hematologist had advised me to stop exercising until it's under control. I'm sure the lack of exercise has only contributed to my fatigue, so I'm eager to get started again. And I carry my water bottle with me wherever I go so that I'm constantly reminded to drink.

[SEB0607 in reply to jimwilmes]

I hope that the treatment works as well for you, my haemoglobin was 83 and is now 136 which is the highest it has ever been in my life! I agree exercise really helps to reduce any fatigue for me so hope you can get back to doing things soon. Good luck

[Skyshark]

Clinics need better plans for reactions. 50% of patients have an IRR on first IV of Obinutuzumab. I see so many that when they have an IRR that's it, sent home with a fraction of the first 100mg dose.

First dose of Obinutuzumab I was in hospital on a ward this gave them time to complete the full dose. My IRR was within 5 minutes of starting, 2ml/2mg, My temperature spiked to over 38°C (100.4°F). They stopped the IV and did a blood test for infections. Restarted at half rate, temperature stayed high so they never managed to increase the rate. IV finished at half past midnight.

[SUN5H1N3]

My experience was not great. After first O infusion I ended up in hospital for 3 days due to fever and extreme headache. All the rest of the infusions went well. V made me nauseas the whole time I was on it. Little energy and messed with me mentally and emotionally.

I was on ZANU for a year before that and I was sick the whole time. I chose the VO and even with all the unwell feeling I’m grateful to have gotten to do it because it was time limited and now that I’ve been off for over a month I am feeling better, more energy, still nauseas and not feeling well a few times a week but hopeful with time that it will get better.

Just know this is my personal experiences with treatments and you could have a better experience. Praying you feel better soon and your issues clear up.

[DanBro1]

I went through this regimen 4 years ago. You are pretty normal in your response, so I would not worry too much about it. The docs there have all seen that response, I'm sure. The first week is the hardest. My biggest issues were chills and fatigue, but then all was OK. Good luck!

[Palmetto]

Are you sure Demerol and not dexamethasone? Never heard of that for reaction since it is a strong pain killer. My husband never was able to tolerate doses of Ven. He would get neutropenic every time. So even with 3 months on O and very low doses intermittently of V he is over 3 years with no evidence of disease and without treatment. It is very common to have reaction on first dose. Wishing you well.

[Swissnology]

I have just completed v and o. I highly recommend it. it's horrible to get a needle for 7 hours for the obin, but by the second bag you feel better I want from 55,000 lymphocytes 24 in 2 weeks