UPDATE: After a week off of all meds, Absolute Neutrofils have gone DOWN to .60, Absolute Eosinophils down to 0. He will start on GCSF Infusions tomorrow for 4 days. His Specialist is confident that his numbers will go up for FINAL infusion next week. At that point dosage of Venetoclax will be reduced to 300MG for several months and we will take it from there! This is apparently quite common.. insurance would not pay for the injections until we waited a week without the meds. The specialist did not seem overly concerned and felt confident that his numbers would be improving with the injections. Will update in a week! Keeping him in a bubble until 12 hours after the first injection, then he can go out as long as he is masked in public.
Well, just when we thought we were at the halfway point... husband was not allowed to proceed to with his last O infusion due to low Neutrophils and WBC. These are the basic numbers; hoping that next week they will get better when he goes to the infusion center to try again. He is off of Venetoclax for the week in hopes of improving. WBC is 1.7 k/ul. If anyone has any ideas about how to get these numbers back in range, or how common or uncommon this occurrence might be, please share.
Absolute Neutrophil 0.75
Absolute Lymphocyte 0.55
Absolute Monocyte 0.43
Absolute Eosinophil .01
Absolute Basophil .01
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lisakc1
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Delaying the Obin and/or pausing the Venetoclax is fairly standard response to Neutropenia.
Please be aware he is very susceptible to infections during this condition, and take every step possible to prevent his exposure to any bacteria, virus or fungus*. See: webmd.com/a-to-z-guides/neu...
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If your husband's Neuts don't respond quickly, the doctors may use NEUPOGEN® (filgrastim), a daily injectable granulocyte colony-stimulating factor, to wake up his bone marrow.
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*How can you prevent infections if you have neutropenia?
You can take precautions to prevent infections if you know your neutrophil levels are low.
Wash your hands frequently with soap and water, or use an alcohol-based hand sanitizer.
Stay up-to-date on all vaccines, including shots for the flu and COVID-19.
Avoid people who are sick or crowds where you’re likely to come into contact with a sick person.
Avoid injuries like scrapes, tears or cuts (including tattoos and piercings), and care for wounds immediately if your skin is damaged.
Prevent the spread of germs by washing fruits and vegetables, keeping meats away from other foods, preparing meals in a clean kitchen and cooking foods to the proper temperature.
Don’t share utensils, cups, food or drinks with others.
Don’t share towels, razors or toothbrushes with others.
Wear gloves if you’re gardening or working in the yard.
Avoid picking up pet waste or changing a newborn’s diaper (use gloves and wash your hands afterward if you can’t avoid it).
Avoid lakes, ponds, rivers and hot tubs.
Take the prophylactic medications prescribed by your healthcare provider to help prevent infections.
Many of these tips apply to anyone who’s trying to keep from getting sick. If you have neutropenia, you’ll need to take extra care to avoid infection. Ask your provider about additional ways to prevent infection based on your lifestyle and health.
Thank you, we were so looking foward to the completion of infusions and getting a bit pandemic weary, especially since we did NOT participate in many of the holiday festivities this year, similar to previous years since COVID. However, better days ahead when the healthy B cells take over! Thank you again!
Seen many in the infusion room in this situation. They ended up getting the auto Neupogen in the belly patch. I didn't but got infection after infection with 5 courses of antibiotics that wouldn't get rid of it. Suddenly it disappeared, I never stopped O but stopped the V because of the side effects. Luckily my blood has returned to normal.
I am approaching my 5th obinutuzumab infusion in a fortnight . My neutrophils were on the descent after my last infusion and they did recover just enough to continue. I am awaiting the next blood test and in the meantime have been given G-CSF injections to self administer.
I too was disappointed to be told they might halt the medication but apparently it is quite common . After a few tummy issues with Ventoclax I have solved them by taking the medication with my evening meal , advice given on this site by other members . 👍
Hopefully your husband will continue really soon with the treatment and tick off the next cycle making progress on what is really a game changing treatment .
I wish you both well and watch your posts with interest as I feel we are on the same path .
If they don't recover in a week, then he will get the GCSF injections, but needs to go in to get them, they will not allow self administering. I wish he would have gotten started on them yesterday, we will see next week. Did they halt or reduce your V meds? Thank you so much and hoping that we all complete this treatment without further incident!
I am to have my bloods taken in next few days to see if my neutrophils have increased they haven’t reduced or stopped my Ventoclax. I will let you know how I get on after my bloods .
It certainly doesn’t help the stress levels but I have faith in the team at the hospital and know they are doing what’s best .
Its a journey for sure! Given that you are taking GCSF injections, you have every reason to relax and think positively. I believe that my hubbies V dosage will be reduced to 300 mg once his neuts recover, which I'm confident they will. On a positive note, your immune system is rebuilding with healthy B cells, the meds are working. I wish that they would give my husband weekly blood tests to monitor, but insurance is probably not allowing it. There is light at the end of the tunnel, I just know its right around the corner!
No, he will go in next week to see if his Neutrophils recover, if not then he will get GCSF injections and complete the treatment when they do. His V meds are halted for only a week, the dosage may be reduced, we will have to wait to see what next week brings!
This happened to me twice during my Obinituzamab infusions. One time they stopped my Venetoclax for a week and my numbers recovered enough to do the infusion. The following month they were low again and they stopped my Venetoclax again for a week. This time I was getting mouth ulcers and my neutrophils we're .15 so they gave me three days of Neuprogen shots which raised my numbers. This is a pretty common occurrence (low wbc and/or low neutrophils) from what I have read with this treatment.
Did they reduce your V dosage to 300 mg or lower? I believe this is our specialists protocol. Hoping you were able to complete treatment and enjoying a very long remission!
They did lower my Venetoclax to 300mg for the last month of my Obinituzamab infusions. After the infusions, they kept it at 300 mg for an additional month. I have been back at 400 mg since then and will finish my Venetoclax the middle of next month.
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