u/dls857

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To;dr headaches and fevers for a week. Ended up having liver enzymes spike, and got on a steroid. Starting to clear up (except night sweats which sucks).

My second neoadjuvant infusion was cancelled. Any positive/negative experiences with having infusions cancelled and how it impacted a surgery plan and outcome?

ETA
- one and done. Very first infusion.
- 3C, in just two axilla lymph nodes

Follow up question: did your aversion to ipi/nivo mean you weren’t able to take any other immunotherapy?

Hi homies - I hit my 2 week mark of neoadjuvant infusion 1 unscathed and then totally fell of a cliff. Started with flu like symptoms and then more like “oh damn i have the flu.” For nearly a week I’ve been struggling with fevers and headaches. The fevers are largely offset by acetominephin/tylenol but headaches are persistent and untreatable.

I just spent the night in the urgent care of my clinic. I got a CT, MRI, chest xray, dozens of labs - basic but also bacterial cultures and viral panels. Nothing came back remotely concerning except for elevating liver enzymes which is probably some combo of heavy Tylenol use for a week and the immunotherapy. The last step is a referral to neurology and a lumbar puncture I guess.

Has anyone had similar side effects? Unexplained prolonged fevers and headaches? How did you treat/what was the diagnosis?

Thanks!

Or lack thereof.

I had my first infusion on Thursday, it’s now. It’s Saturday. I have had no side effects. I have a newborn and a toddler, so my fatigue/energy levels have been pretty low as a baseline for a couple weeks now. I haven’t noticed a difference. I may go in short spurts where I feel like I got a flu vaccine (deep muscle aches) but nothing overwhelming. I had heard that about 2 days in I’d peak in symptoms.

Obviously I have a very long way to go. I’m doing 2 cycles before surgery. But I feel like I kept getting warned about ipi/nivo intensity and ~48 hours in I feel like I’m not even feeling the tablestakes symptoms.

The doctors told me that intensity of side effects doesn’t indicate efficacy so I’m not super worried. But has anyone made it through ipi/nivo completely unscathed? Am I going crazy, or is the other shoe going to drop on me?

Thanks!

Hi everyone - new here. Trying to get a grip on my situation.

March ‘24 - had a mole biopsied and came back Stage1A, .6mm, mitotic rate zero, no regression, . Pretty incredible work from my dermatologist when she called to tell me. Her call came in at 10:30am, and told me to get to a surgeons office immediately. She made some calls and I was walking out of the office with an excision by 1:30pm that same day… at Mt Sinai in NYC of all places too. Full excision, clean margins, no missed cells.

I didn’t get too many follow up instructions and have only had one skin check since (I know, I know). 18 months since my last check and I pop up with a couple of identical swollen lymph nodes in my armpits - virtually the same size. Not even sure how I found it, as it’s pretty in there. An ultrasound revealed the second. Multiple docs even asked me “how did you even find this?”

Somewhat of a winding path but I did get that skin check follow up (all clear) and a referral to an oncologist. We did the intake today, and he did mention that 1A, clean margins, my whole profile was handled perfectly and the change for a recurrence like that is pretty unlikely (“less than 5%”), but not impossible. We’re doing some discovery now, a biopsy and a pet scan. No other symptoms and every other check (other lymph nodes areas, chest xray, and blood work) has come back perfect. Also looking into lymphoma.

Has anyone had a similar story? Would love to hear some experiences and maybe some things to think about. Feeling a little overwhelmed with a 2 year old at home and an 8.5 month pregnant wife.

TIA