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Itchiness After Immunotherapy
I was diagnosed with bladder cancer about four months ago at the Rochester Mayo Clinic. I've now had my second amino therapy treatment and have been experiencing extreme itchiness. I'll be calling my doctor today in the hope they will issue a prescription for this, however, I'm wondering if anyone else has had this issue and how they solved it.
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Today I had less abdominal discomfort but some loose and smelly stool. Hard to determine if it is still food poisoning from yesterday, my supplements or nivolumab related.
Some fatigue today and intermittent dull back pain.
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1 ReactionMayo JAX oncology is now doing mobile labs. They asked me to participate. Interesting. I had an AKI early 2025-01 and I was treated at home with video equipment and EMTs and home nurses after an initial ER stay. Very inspiring and innovative.
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1 ReactionInteresting, @jaxfl. Are you part of the Advanced Care at Home program?
https://www.mayoclinic.org/departments-centers/hospital-at-home/sections/overview/ovc-20551797
I received ACAH early this year for my AKI. That was successful. Now they are expanding this to immunotherapy labs (and perhaps infusions). I am waiting to learn more.
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1 ReactionRegarding nivolumab: my liver enzymes came down a bit from 5/29. Today, my hematology RN told me my hematology PA believes it is very likely nivolumab induced and that the mild iron deposit is regularly seen after iron IV infusions. Also good news in a way: iraes like this are typically associated with efficacy as it indicates the immune system engaging.
Two days ago I read a sad update from a patient in Canada on Reddit who had nivolumab for a year. He never had any iraes or noticeable effects from therapy. Three months after ending nivolumab he had a recurrence near the pelvis. Such a semi-local recurrence is rare. His tumor pre-RC grew during neoadjuvant cisgem so unfortunately his cancer appears to be treatment resistant.
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1 ReactionThe Northstar Response contradiction continues. My 2025-05-29 score came in at 43. That is down from 130. Indicating nivolumab is making a difference. However, the scale is now 10 to 400K. Another patient who met the Northstar team @ ASCO told me the sensitivity of the assay has increased significantly. So the 2025-03-06 and 2025-04-03 would likely have been considerably higher. Which makes nivolumab even more potent potentially. They also added new language that the assay should not be used for MRD and only for solid tumors. So that makes it even harder to interpret/rely on. Obviously my high risk for recurrence still recommends nivolumab so it does not change anything.
Mayo sent me this video on the new ACAH program.
http://mayoclinic.org/patient-education
Starting home care next week. Interesting.
Home care started today. Around 9AM a RN and technician showed up. The RN took the blood work (including Signatera: which was a first for Mayo in a home care setting). The technician set up the boxes, WIFI router and tablet. I then had an introduction video call to explain how the program works. I then had a 3PM regular Zoom call and was cleared for Nivo 4 on Thursday 7/3. My blood work shows the hepatitis has subsided. Eosinophils are back up to 5.7%. Which is indicative for efficacy as shown by MALVA and a study in JP. https://www.postersessiononline.eu/173580348_eu/congresos/EMUC2023/aula/-P_216_EMUC2023.pdf https://www.dovepress.com/article/download/75024 The 3PM PA call was very brief. The PA was completely unaware of supplementation (akkermansia, CBM-588, camu camu) and its efficacy boost related to gut health. She was also completely unaware of Northstar and eosinophils ratios. That is surprising for a NCI like Mayo.
I hope you do well with your appointment on Thursday.