Well I finally started my treatment and the first week was quite a roller coaster. Day 1 ,I was only 10 minutes into the treatment and I had a severe reaction. Blood pressure dropped to 70/30 , hot flashes, chills, nausea but 5 nurses did their thing and reversed it pretty quickly. Completed the dose but took over 6 hours.
Day 2. Was there for 8 hours. I did well as they reduced the infusion rate because of my reaction on day 1 until we had 30 minutes left and the rate had just been elevated to the max of 200. They would increase it every 15 minutes if everything was ok. With 30 minutes to go, I starting itching and had a rash appeared on my head and chest. Benadryl and steroids to the rescue just like day 1!
Two days later I go in for blood work and find out the following. My hemoglobin crashed from 9.0 to 7.4 .
I was given a blood transfusion (one unit). Despite drinking 50-80 ounces of water a day , including 50 oz the morning I went in for my blood test, my Bun had doubled from 20 to 40. So I was put on an IV. I was also given calcium as that dropped also below acceptable limits. WBC went from 26.0 to 1.0. ANC dropped from .9 to .6. Phos- 4.7, rbc-2.2
It's been 4 days now since last infusion and I feel better as I go back on tues to see where we go from here.
I must say this has been somewhat unsettling. I've read that things may improve as far as reactions as my body adjusts? Do my reactions suggest the drug is working or is it trying to tell me something else. I know everyone is different. Intuitively if nothing happened one might wonder if it was doing anything??I just thought I'd go for more thana 10 minutes before going into a tailspin. Any insight would be appreciated.
General FYI--I was started on calquence last Oct and my numbers tanked in just 4 weeks . Anc went to .14. Treatment was stopped. WBC also went from 23 to 3.6? I pray I am able to take the V+O treatment!🙏🙏
Happy Father's Day!
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Rico49
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Having reactions to the initial infusion is common. Most report no problem after the inital infusion. IMO the drug is working, but I do think you are sort of unlucky in that both your RBC's *and* neuts have been affected. Some people have only 1 cell type affected out of neuts, RBC's, platelets, some have all 3 affected. You had 2 out of 3. I think your body is handling the stresses of quickly killing CLL cells fairly well, or you would have been admitted to the hospital. A transient rise in BUN, calcium changes, etc. are normal and expected when the drug is working. I would imagine you will get repeat bloodwork on Tues, then depending on the results, a decision will be made of how to continue.
It is unsettling, but the other option would be to get stuck in the hospital, with a constant IV, sleeping in a noisy room on a strange uncomfortable bed eating hospital food. It's somewhat uncomfortable to go through this process, but at least the comforts of home are available! Hang in there, we're rooting for you!
thank you Sofia. I guess I was taken back that it happened within 10 minutes Plus the fact that I had to have a blood transfusion after only the first cycle.Hope I don't react the same way going forward. is IOM- I imagine??
Given your "WBC went from 26.0 to 1.0. ANC dropped from .9 to .6." , the balance of your WBC drop will have mainly been lymphocytes, mostly CLL cells, so yes, the infusions are working - but all the infusion reactions are telling you is that you don't like foreign material entering your blood supply. I'm sorry to hear that your bone marrow is sensitive to the infusions, but the worst should now be behind you. The reduction in CLL bone marrow infiltration should be providing more room for your bone marrow to improve its blood cell production, just give it some time to heal from the CLL damage.
You've been rather unlucky having two strong infusion reactions. Most don't even have the one, but when they do, they do tend to come on hard and fast. I too had one (and only one - with my first infusion) that came on rapidly and just after my observations had been checked by my nurse. Thankfully my wife was with me and quickly sought medical intervention. My first infusion finished about 11:30PM. While my other infusions went without incident (I fell asleep during my third), they do take a long while. There's the initial settling in, then administration of the pre-meds, waiting an hour for them to take effect, then the measured progression to faster infusion rates if you can tolerate them.
Wishing you smooth sailing for the rest of your V&O experience and a very long remission.
Hi Rico49 , i had a similar reaction to calquence it just took a few months to continue to tank my numbers .. then i started gazyva ; i had a reaction jn the first 1/2 hour . more benedryl and steroids .. then continued 100 mg. infusion .. second day 900 mg .slight reaction ... next day blood transfusion ... following week 1000 milligrams ,next day blood transfusion ... now; gazyva infusions completed and 4 months into full dose of venetoclax and doing well . 😊.. drinks lots of water - keep looking up and praying and you should be fine .. blessings , james 3rd. John verse 2
I read your post and thought for a minute I had written it. 🤣I am hoping to skip another transfusion.?? Thanks for your post . I'm drinking enough to float a boat!
During initial ramp up of both O and V, lymph cells are being destroyed at a high rate. Water in quantity is vital. Once up to full dose and off Allopurinol the water intake may be reduced.
Thought as my WBC was way down and lumps had gone I could get away with a reduction to less than 2L/day in cycle 3 but they still have me on Allopurinol and I found that needs water as well. I got a burning rash. Back up to 3.2L (3.4 US quart) a day has put the fire out and the rash is fading.
With a WBC of 125 x10^9/L (125k/uL) I too had an infusion reaction in the first few minutes on day with the 100mg bag. Stopped for blood test and some antihistamine, then restarted at half rate. 8 hour infusion finished a half past midnight, they wouldn't put the rate back up as I had a 38°C (100.4°F) temp throughout.
Yes/No, the NHS link below says "if". The only doctor that ever told me to drink water was the one that did the work-up, last seen February. None of the Doctors I've seen since being prescribed V+O and starting on Allopurinol in April have told me to drink water.
I was unable to find definitive instructions for water and Gazyva. An AI search on Microsoft firstt took me to drug .com but it went directly to Venclexta I guess since they are generally given together. When I challenged the result ,it apoligized and said: According to Chemocare, there is no information available on how much water to drink with Gazyva.
The Venclexta Medical guide says to drink 56 ozs a day.
I'm going to ask the infusion people next week. I know if you get a transfusion they say drink lots of water. After my first cycle ,only on Gazyva, my BUN doubled and they said I wasn't getting enough fluids. I had been drinking at least 84 ozs a day and I still had to get an iV.
I'm going to keep drinking water. I don't start Venclexta for a couple weeks.
I took my late wife there in the 90's. It was the best Cancer Center I have been to this day. They were pioneers and treating the whole body not just chemo.
I went into anaphylactic shock within 5 minutes of gazyva infusion, but it was hard to tell due to length of infusion tubing. Next go around they shortened the tubing and timed release.
The doctors gave me a choice of repeating B+R treatment or trying a 100 mg dose next day. I elected to try reduced dose due to all the positive comments on this forum of getting past first dose. They were right, all the rest of infusions were uneventful. Blessings.
I feel your pain. I have had a reaction to each of my rituximab infusion. The last time they had to use an epi pen. Infusions are now on hold. I am told though I am in a very small minority group to which this happens. Hopefully your next cycles will be easier.
I had a similar case with my first O infusion.Two hours in i needed to go to toilet and when I came back to my chair I started shaking uncontrollably. I had to get oxygen and the nurses were wrapping blankets round me and I received steroids too .This session was abandoned and I got admitted for four nights so that the medical staff could monitor me.
Thats been the only set back.
This was in May last year.I am now in remission but still get lots of shooting pains in my limbs mainly my arms and I wear compression sleeves when its really sore.
Thank you for sharing. Congratulations on remission. I hope that is my next stop and the worst is behind me. I had a large lymph node under my left arm that has almost disappeared after only one Gazyva treatment. Amazing!
I certainly feel for you, but I think it will get better over time.
I was considered to be a risk for TLS (Tumor Lysis Syndrome) due to high ALC (80K), splenomegaly, and a large node, and I had high uric acid. So M.D. Anderson admitted me for the first Obinutuzumab infusion.
I had an infusion reaction to Obinutuzumab in the first few minutes as well - sudden diarrhea, bp drop, sweating and chills, and a fever rose to 102.7F/39.3C. Eventually they resumed the Day 1 dose at ha;f the rate, but skipped Day 2 dose entirely. I stayed in the hospital for 3 days due to continued fever. I had major swelling on my infusion arm, and an ultrasound concluded that I had a thrombophlebitis. When they finally took the IV out, the skin came off wherever the tape was.
I learned that infusion reactions are unrelated to TLS. They're a type of allergic reaction due to all the cytokines released when the new substance is first detected, plus B and T-cell reactions. In most cases, it's not an anaphylactic reaction. i.e. I did not have mouth swelling and breathing problems (well, I did hyperventilate a little). Eventually the body does adapt - T cells calm the reaction by producing anti-inflammatory cytokines. There's probably hormonal reactions, too.
I did have some TLS, too. They distinguish a Laboratory TLS from a Clinical TLS, which is more severe. I had the milder Laboratory TLS.
For Day 8, they admitted me again, and split the dose into 2 halves across 2 days, and slowed the pump. I had no further trouble. I did Day 15 as outpatient at the normal rates with no trouble, and my subsequent infusions have been problem free.
At the time I was getting the first Obinutuzumab, I was also getting Pirtobrutinib. I'm in a treatment naive trial for it. So my situation may be somewhat different in that respect.
Within a few hours of the infusion reaction, my bloods showed LDH increased from 496 to an eventual peak of 1701 within 2 days . My WBC dropped from a high of 101,2J 2 days after the infusion to 12K on the 3rd day. It varied around that number for a month or so before dropping to 5.9K last week - after 4 months of Obin, Pirto, and Venetoclax. My ALC went from 88K 2 days after the first infusion to 2.2K after a week, and was 1.3K last week.
Although my numbers dropped to almost normal after a month of O and P, I think the addition of Venetoclax dropped them further. Within a month of the first infusion, I had 1365 CD19+ lymphocytes. Last week, I had none. This is a potent combo, but I think the addition of the Venetoclax is what dropped it from 1365 to 0.
I hope they continue the premeds and slow the infusion if you have a reaction again. You might ask if you could supplement with another antihistamine - I take Allegra (Fexofenadine) 180mg for pollen allergies on top of the Benadryl they give me. MDA had no problem with me doing so. I've read posts here about others taking Zyrtec ( levocetirizine) or Claritin (loratadine), and there are others, I'm sure. I think they have a choice whether to give steroids or just the benadryl or montelukast. I only got steroids on the first infusion.
Take comfort in knowing that some of the reaction came from your B-cells, which are now dying. Your CD4 T-cells will try to calm the reaction. Obin doesn't kill those.
The Obin really clears the marrow, I hear. So I think it's worth it to plow through if you can. But if you find that you cannot bear it, the infusions that you've already have done significant good, and the Venetoclax is quite potent by itself.
I do think you could increase your fluid intake to 64 to 96oz, especially as the Venetoclax ramps up. After reading many posts here, I think significant fluid intake reduces side effects from all sorts of drugs. I use my FitBit app to track my water intake, but there are other apps out there. With my benign prostate hyperplasia, I do have major inconvenience of trips to the toilet to pee. I pee several times during my infusions. I count it as exercise. Load up on water before and during the infusion. I get 32oz before the infusion, and another 16-32 during. Try to keep your urine a light straw color. My urine was darkest during my first few infusions, and got dark again when Venetoclax ramped to 400mg.
Thanks Seymor. Very helpful information.I hope I have been thru the worst . I had a large lymph node swollen under my arm that is almost gone after one treatment that they did over two days. Wow!
Amazing how the body works and we are all different! I had to smile about the trips to the bathroom- I feel like I could have been on roller skates as I went constantly. Slowed down now 4 days after last infusion and a blood transfusion.. The day I got the transfusion I had had over 50 oz s of water before noon and my bun was still saying I needed more fluids- so I got an IV. Good luck to you!! I start Venetoclax in a couple weeks- I hope!
I had actually had an anaphylactic reaction to obinatuzamab. I stopped breathing 13 minutes into the first infusion. It was really bad, but I had an excellent team and after being hospitalized for a few days everything from then on went very very well with added medication and slowing the infusion rate. After one year with the combo of O & V, I am now uMRD. Now I worry about how long it will last.
oh my! So glad it went smoothly for you after the initial set back.I think we are all lucky that this field of medicine is progressing so quickly. if it does come back I'm sure there are other options available. for now I hope you are celebrating your new remission. I hope I am able to achieve that same end. Good luck going forward and thank you for sharing.
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