Hi, those of you who are on combined Avastin + Lomustine for recurrence and struggling with blood counts, what is your experience, which treatment your oncologist prioritizes in need?
My husband who is a 32 months survivor with multifocal GBM progressed during his 2nd radiotherapy and his doctor gave up on him stating that he had less than 1 month of life expectancy. But luckily he reacted well to Avastin and his serious symptoms disappeared within days after the 1st infusion.
Together with the 2nd infusion we added lomustine (90 mg / m2) and it messed up with his blood counts on week 4 and 6 so his oncologist postponed both treatments. Plus, a few days after the combination treatment he started having severe diarrhea that is still ongoing and it didn't improve on those 2 weeks when we paused Avastin. He became weaker and weaker gradually.
Shortly after finally receiving the 4th Avastin with delay, he ended up in the ER due to confusion and seizures that we didn't experience in the past 3 months at all. Seizures were the first signs of tumor progression back in April so now we're frightened. Methylprednisolone was doubled to 64 mg (equivalent of 13 mg dex), Keppra was increased to 3000 mg. Symptoms disappeared within 2 days. Emergency CT showed only a very slight swelling which is actually an improvement compared to the last MRI in late August.
Today we were on pins and needles to finally start the 2nd cycle of Lomustine (we're already in more than 2 weeks delay) after his blood work results came back as perfect (BP 220,000, WBC 6.8) but the oncologist advised "Don't risk Avastin."
Avastin is a palliative treatment while chemo can really help if someone has a good reaction to it (TMZ helped him for 2 years) so I don't understand why the oncologist put Lomustine on hold in favor of Avastin considering that it is very likely that the tumors are progressing again? What's the point in using Avastin if he still needs tremendous amounts of steroids, plus he lays in bed most of the day despite the treatment? Next MRI will be in early December.
By the way, we sourced Lomustine from India because the oncologist wasn't able to prescribe it due to local protocols. He is only allowed to prescribe it after the failure of Avastin so we're actually not depending on his decision, it's just not a wise thing to disagree with your doctor.
My main concern is that there's some evidence that no chemo is able to help after the failure of Avastin so I can't see the reason why to wait for further progression in order to continue Lomustine, providing that his blood counts are perfect at the moment.
Thank you for any advice that you can provide.
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