Our Doctor and nurses took every precaution to prevent tumor lysis syndrome and it worked. After a week of Allopurinol to reduce Uric Acid and a ton of premeds ranging from Benedryl to others I cannot pronounce, the first day of infusion went rather smoothly. He did experience some minor nausea, which after he said "no big deal", I immediately alerted the nursing staff. Instantly 6 nurses rushed into the room and began assessing his vitals, gave him more premeds, and turned down the flow. His blood oxygen level went extremely low, down to 88. I was told it was due to the heavy dosage of premeds. I was also told that this was a reaction, not TLS. Whatever it was, it needed to be dealt with. The amazing nurse we had was ready to admit him, after completing treatment with a blood oxygen level of 90 but the doctor sent him home since we had an oximeter at home. He ate well, but the blood oxygen levels never got above 95 and was an occasional 91 or 92. Still too low. He went super early the next day for more testing and premeds. The second day passed with the flow of the Obinutuzumab turned up and no reaction at all!
His numbers have improved dramatically
Before treatment
Platelets - 147
Neutrophils - 6.98
Absolute Lymphocytes 256.69
Hemoglobin - 12.5
WBC - 267
Swollen spleen and CT scan showed swollen lymph nodes throughout, more so in the cervical/neck areas.
After week one:
Platelets - 60
Absolute Neutrophils - 5.19
Hemoglobin - 13.2
WBC - 24.3
The doctor is impressed, a dramatic improvement and no TLS.
He is already experiencing reduced swelling of the lymph nodes in his neck and body.
Also, he is feeling muscle weakness, not sure what that's about. If anyone has any clues, please let us know.
He is hydrating a ton to keep his system flushed.
Will continue with updates in the weeks to come! Again many, many thanks to all in this group. It truly takes a village and we are honored to be part of it!
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lisakc1
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With all the energy needed to metabolize and eliminate those CLL cells, it is no wonder he "feels muscle weakness". He has spent a tremendous amount of energy during this, and probably has very little energy reserves left. If it were me, I would make a note of it, but not get concerned unless I was unable to stand, walk, eat, etc. And remember "too much" hydration can throw off electrolytes. Low potassium can cause muscle weakness.
Good point about hydration… I use a grain or two of Himalayan salt in my water glass during those hot summer days when we all tend to drink more water…
Sometimes I get the unflavored Pedialyte-type stuff and make a "lemonade" with a shot of the Pedialyte, lemon juice, and apple cider vinegar containing the mother. Instead of boring plain electrolyte mix, or the chemically flavored ones. Infusing the water with cucumber slices is another favorite.
Great results! Really happy for your husband. I also have muscle weakness after each infusion but it's nothing major just makes you feel tired. I think a couple of people mentioned this "jelly legs" feeling. As Sofia said, mention it to his doctor but I think it seems in line with what others experience. Hope your husband continues doing well! I'm starting cycle 3 next week. All the best and keep us posted.
Petra ❤
P.S. the jelly legs and fatigue was the worst after week 1, it seems my body is getting used to it so it's easier "to recover" after the infusions.
Good news: His numbers keep falling, WBC down to 2.5, and Absolute lymphocytes down to .60 Platelets and Hemoglobin still too low. Bad News: Extreme lethargy, muscle aches, steroid crash with uncontrollable shaking. The nurse and specialists say this is normal and will improve once his body adjusts in a few weeks. We will see! Infusion number 2 tomorrow!
Great stuff! Brilliant results from his first encounter with Mr O! There will probably be a few bumps along the way but he has started his journey with these amazing drugs and everything should just get better from now on. Just remember to keep drinking water it really helps to keep your system well flushed especially if he goes on to venetoclax. Sounds like he has a great nursing team around him and,of course, you! Lots of luck. Patrick
Yes I had “jelly legs” for a few days after every Obinutuzumab infusion until they stopped giving the premeds (antihistamines and steroids). I’m at the end of cycle 2 now and together with 400 Venetoclax have got to the once a month phase! Feels good and my numbers are all good too so onwards and upwards! Good luck to your husband x
Wow- isn't this exciting- my hubby did well and has been doing well ever since. In fact he had his last obinutuzumab IV last Thursday . He is still on Acalabrutinib and Venetoclax- next month he is scheduled for a bone marrow biopsy to see how well the treatments are working- I will let everyone know the results. Good luck to you and your husband you both will be on my prayers. Ps this community of wonderful folks also helped me and my husband with our fears and to ask the right questions. 😊
Hello lisakc1
I am glad to know your husband is doing well on treatment and everything was handled good by your nurses, doctors and staff.
Sending continued prayers, well wishes, virtual hugs and thoughts to both of you!!
Thank you so much for sharing as we may possibly be heading down this road in the near future.
AussieNeil has really helped me understand the science behind CLL and the treatment. I’m sure he would reply to any concern you have, he is truly amazing!My husband is in the ramp up phase of the “O” drug. First week 2 infusions. Infusion #1 at 200 ml, #2 at 900 mls. Next week will be full strength at 1000 mls. The following week another 1000 mls. After that it another drug Ventoclax will be introduced. There will be a similar ramp up with monitoring in the hospital initially. The “O” drug will be infused monthly for 6 months and he will be on the “V” pill for 1 year. I hope that makes sense. The ramp up periods are the most stressful, as the specialists and staff are on high alert to prevent tumor lysis syndrome and reactions. TLS occurs when the malignant white blood cells are destroyed and release toxic levels of uric acid and potassium. My husband received premeds and did not experience tls at all. Preventing TLS is why he will be monitored in the hospital when he starts on ventoclax. I’m sure your specialist will review your treatment with you. I hope this helps! Looking forward to sunny days and healthy tomorrows!
Please remember that TLS can occur at any point during the O and V ramp up so that's about 2 months in total. The risk is still there during the V ramp up. It's really important that your husband continues to drink throughout the whole period as he was advised and as prbs2707 mentioned and that any symptoms (fever, headache, stomach ache, etc.) that you would normally think nothing of are shared with the team urgently. I think the medical teams are very good at preventing it from happening but it's important that you know the risk is still there.
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Healing CLL naturally
Help! Newly diagnosed 31yr old very confused.
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