Of course.
During the test/lab phase, I was experiencing severe anemia, so I underwent to rounds of Venofer-an iron infusion, to get me stable enough until they diagnosed me. Each round was once a week for 5 weeks. My spleen had enlarged to 28cm, which is more than doubled its original size. I was fatigued, swollen and incredibly uncomfortable. I had shortness of breath and poor labs. I never experienced fevers and no increase in night sweats (I am in my 50s). I had low Red & white blood cells counts and low platelets. My liver showed signed of being fatty, and I am not a drinker. I was once told to think of it like diabetes. It’s not curable, but treatable, hence the listening to your body. I am told I might still need iron, as I have an absorption issue, but for now the treatment seems to be working. My kidney function was trending poorly, but it’s looking a bit more positive as of last labs. I can still run short of breath, but now I pause and lean into it. I’m trying to be more mindful and intentional. Side effects vary, but I can tell taking meds with food and staying hydrated have greatly improved them. Again, I did not experience diarrhea and the like. My nausea was/is minimal. I did have an issue with Tumor Lychis, which just means too many cells were dying at once and my body wasn’t getting rid of them fast enough, so I had to get hydration and an extra infusion of Rasburicase, to get rid of the high Uric acid. They were pretty on top of checking my labs, which happens often at the start of this treatment plan. Overall, I’m pretty new to this process. I expect to redo my PET scan between my 3rd 4th infusion, so about 6 weeks out. I still do labs, but not 2x a week- it’s monthly. Mentally, it can exhausting and anxiety ridden. I try hard not to dwell or stay in my own head. That tends to be isolating . I’m trying to set new goals and celebrate the ones I’ve accomplished. Overall, I feel pretty lucky. I’ve used available resources and they helpful.
Just remember your experience on this journey may not be identical to others. I hope you get to a place of understanding and comfort and above all else, a very long remission.