First of all, thank you very much for all the help and care I have always found on HealthUnlocked. I had my first infusion of obinituzumab and in my case, mainly due to my nephrotic syndrome kidney problem, I had a few problems.
High fevers, which are common
Attacks of hiccups that last for hours along with spasms in the esophagus but now controllable by medication.
In the meantime I've been in hospital because of this and some bleeding I had during the night.
After the treatment my platelets, which were 120,000, dropped to 19,000. Yesterday I had a platelet transfusion, but it had practically no impact and now I'm afraid. I wasn't really interested in bone marrow transplants, but I know it's just a possibility. Anyone with a different experience with Obinituzumab?
Thank you all so much for your enormous support and strength
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BMFCDRW
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I'm sorry to hear it hasn't been smooth sailing. It is often the case if you start when you are quite unwell, there are no reserves to dip into. It was similar for me. My platelets dropped after the first infusion, not as low as yours but around 60. They did recover reasonably quickly and after that stayed within a safe range. Hopefully it will be the same for you. I think your body/bone marrow needs a little bit more time to recover. My Hb dipped after the infusion too and then again when I started to ramp up on V. Every single dose increase caused my Hb to dip. I needed a few blood transfusions. At this point, I would try to relax, rest, eat well, drink plenty and let your body process the drugs and wait. I feel quite optimistic that it will settle, you just need more time. When did you have the infusion? Only one at this point? All the best. Petra ❤️
My husband's counts dropped, that is what the treatment does unfortunately, but you should see improvement over the first few weeks- months if v+o is right for you. My husband had multiple transfusions during his year long treatment, which included a auto transplant to treat his cns lymphoma. His counts were pretty much zero throughout, but once he completed treatment, his bone marrow started to recover and his counts did as well.
The doctors will guide you on what is safe. I was also alarmed at how low my partner's counts were and for how long. He even got covid while waiting for engraftment during his stem cell transplant, at which point his neutrophil count was literally 0. But he pulled through each time and has been in remission for over a year now.
The doctors don't know everything and each patient is different, but you should expect your treatments to suppress your immune system before it improves. Be sure to alert your treatment team to any new symptoms though and do ask for transfusions and supporting meds if you have that option.
Drink plenty of water on v+o and confirm whether it is safe to take an electrolyte supplement to help you maintain proper hydration. I used to give my husband gatorade/lucozade once a day as a simple way of doing this. Now he takes potassium, magnesium, iron, b12 and a few other essential vitamins.
The doctors may say supplements make no difference because you can get most from a balanced diet, but my husband wasn't able to eat normally throughout treatment for various reasons, so they did make a difference to him.
The bleeding could also be prolonging the recovery of your platelets. You may need just a few more days for them to improve, but also, they might remain pretty low for a while depending on how you respond to the treatment. Hydration, rest and eating well go a long way, though. A bone marrow biopsy may be indicated in the future, but it's probably too soon to make that decision.
I had hiccups with obinutuzumab also. I suffered with what I referred to as Super Hiccups. Unfortunately, I had them after each infusion and they would last two to four days. The episodes were from 30 minutes to two hours in length. It helped to minimize the effect if I took opempresole every day.
I remember thinking about the person who had to sit next to me on my flight home from the treatment center while I convulsed a enthusiastic Hiiyeeecuh repeatedly. You could tell that their initial aggravation soon transformed into a sorrowful compassion.
Hope you get some relief.
The price for shopping at the Gazyva store I guess.
Please give the treatment a chance to work. Not everyone has wild swings in other cell lines, some do. Hang in there, you'll get through this. You could have had the same side effect had you chosen a bone marrow transplant, no one can tell side effects of these medications ahead of time. You got to the hospital, and while it's stressful to have to be admitted, you are being monitored.
You may be one of those where rituximab might be better for continued treatment of your CLL. It does not tend to affect platelets as much as obinituzumab, and in fact can be used to raise them. Rituximab is also used in conjunction with venetoclax for CLL.
My platelets dropped from 100K to 60K after 1 Obin infusion and stayed low for about 4 months. Then they slowly started to raise and at 13 months in to V + O I am higher than I've been in a decade, 140K consistently. Not sure of an answer for you.
As a surgeon, I know that a "6 pack of platelets" we give for emergency surgery usually remain functional for about 2 weeks.
God bless you and good luck!!!!!!
Skipro
PS
The director of the CLL Society, Brian Koffman had a huge drop in platelets at one point, down to less than 10K.
If you log on to the CLL Society web site, I think you can find his bio and see what he did with the low platelet counts.
I'm sorry for only replying now, but I've been hospitalized, mainly because my platelets have dropped a lot and also because of my kidney function. As my CLL was very infiltrated in the kidneys, my kidney values are very high. Creatinine was first 4, then 3.5, 3, and now 2.5. The kidneys seem to have helped after the first treatment with obinutuzumab, but I'm still very swollen due to proteinuria. Thank you very much for your reply and help! I wish you all the best
I had the first two O last month, which cost me two weeks in hospital. Platelets dropped from 280 to 3, CRP climbed to 200, temperature was 41 degC for days. Several platelet infusions made for a small increase. I continued to deteriorate on IV antibiotics and only turned around once they switched to a stronger IV antibiotic - meropenim.
On the plus side, those first two days of O knocked most numbers down to normal, making for a good start with venetoclax, which yesterday just upped to 400mg. On the negative side, there was concern that receiving further O might have a worse outcome.
Currently waiting on the lab investigation as to what happened. I have been switched to V plus Rituximab, with the first Rituximab due next Thursday.
Meanwhile, platelets now seem to be increasing by 50 every week and are at 400. Hopefully that will tail off soon!
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Blood transfusion after first round of FCR
Platelets and starting treatment
Obinutuzumab
