What a rough two weeks it has been. The IL-2 drug really gave Jonathan a beating but today is the first day I can actually start to relax a bit and think that he is finally recovering from this round of treatment. On Thursday night (5th January) Jonathan started to complain about pain in his legs. Actually by his knee but fortunately it did not last long and I never gave it much thought. On Friday morning - Jonathan complained about both his legs hurting and it was so intense that he was crying out in pain. The disturbing thing was the pain was reminiscent of his bone marrow (cancer) pain just before he was diagnosed with cancer. The scary thing was wondering if this pain was due to his cancer coming back, an infection, or a side effect of the IL-2.
To top it all off, we found out that Jonathan had another bacterial infection - detected from his blood culture, plus a bacterial infection in his stomach - which causes him to have diarrhea. This is one time I didn't mind staying at the hospital because with the infection in his stomach - he poops every hour or two and it isn't easy to clean because of how watery it is - coupled with him being in pain and very weak - going to the toilet was not an option.
The pain in his legs coupled with the two infections delayed our release until Tuesday (10th January) afternoon and it wasn't until today did the pain in his legs finally stopped. Since the pain in his legs was migrating - our doctor didn't feel it was due to an infection so that left us with two options - either a side effect of the IL-2 or his cancer has returned (with a vengeance). Since the ch14.18 protocol is so new - none of the hospital staff had any knowledge about the typical side effects, how long they would last and what is the norm. I remember asking - how long should we keep him on the anti-nausea medicines? To which the reply was - we don't know - because the IL-2 drug is so new.
The main bit of information we really wanted to find out was whether past patients who had this treatment also experienced any leg pain so many days after the treatment ended. Of course not knowing this until today was a major 'headache' as our minds would race on hoping it wasn't the cancer returning. Actually it was Gabby's mind that was racing more than my own : ). We did find out that there were other patients like Jonathan who had leg pain up to five days after receiving their last dose of IL-2 and it so happens that yesterday was the fifth day - so - keeping our fingers cross - that the leg pain truly doesn't come back and then we can chalk it up to the side effect of IL-2.
With the terrible experience of round 2 - I've made a request to have our doctor request from the study team that the dose of IL-2 for his fourth round be reduce - because I don't think I could handle seeing Jonathan get 'mashed up' so much. Besides the leg pains, and the nausea, Jonathan had headaches - only when he was getting the ch14.18, and high fevers for the ENTIRE duration of this treatment. The fevers were a side effect of the IL-2 and ch14.18 and with his NG tube still not being placed it was quite a task to get him to take his medicine in his mouth.
We resorted to mixing his grape flavored Tyenol with grape juice but Jonathan was able to taste it or feel the texture of the medicine in the juice. This trick got cold quickly - but it did allow us to go a couple days of giving him Tyenol via his mouth. Since he didn't have his NG tube - Jonathan also went without feeding of any kind for a week and half. Actually, last night was the first night that he got his regular feeding of Pedisure. The only problem with this round of feeding is that we have to use a slower rate since he has a different kind of NG tube. This NG tube - instead of ending in his stomach - end in the upper region of his intestine. Since there is a weight at the end of the NG tube and it's in his intestine - this means that this NG tube is harder for him to vomit out so at least we wouldn't have to worry about having to place it all the time.
Next week - Jonathan goes for another evaluation of his cancer. He is getting a bone marrow aspirate done, coupled with an MIBG scan. We are hoping that the bone marrow aspirate (truly) comes back negative and that we can say that he is NED, i.e. free of disease - but we've been disappointed so many times in the past that I'm not going to be getting my hopes up to high. Even if the tests comes back negative - we still have 4 more rounds to do - just to make sure we get rid of any non-detectable tumor.
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