› Forums › General Melanoma Community › The no side effect blues
- This topic has 3 replies, 3 voices, and was last updated 3 years, 11 months ago by
JudiAU.
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- May 6, 2020 at 2:41 pm
Hi Guys,Had my 4th and final ipi/nivo combo treatment yesterday. Everything went fine as it always does, and nothing of note on my blood work except slightly elevated liver enzymes, as usual.
My doctor was surprised that at this point, I’ve had no major side effects to report, not even a rash, or a few bouts with diarrhea. Really, I’ve only had to deal with fatigue, which lately hasn’t even been as issue like it has in the past few months. I had some joint pain a few weeks ago that lasted a couple weeks. But that’s been all. Going by the labs, there don’t seem to be any issues with my thyroid or my pancreas.
On the face of it, that’s great, right? None of the AEs that we were warned about. When people ask how I’m doing, I just kinda shrug my shoulders and say ‘fine’, because there isn’t much to talk about. Everyone seems to be pleasantly surprised and cheered that I’m doing so ‘well’.
Of course, privately, I’m having a very hard time trying not to freak out because even though I shouldn’t be, I’m at least on some level worried that no AEs = the immunotherapy isn’t working. I know that there isn’t really a concrete correlation there, further, Dr Sznol reminded me of that yesterday, and that I’m still early in the process. Its only been 9 weeks (and 5 days, but who’s counting?) since I’ve started treatment and there is a definite requirement for patience. I had progress early on – the lump on my neck shrunk by over half, I would say. However, I haven’t had any progress like that in a few months, and there now seems to be some new inflammation under my jaw. Is it disease progression? Is it inflammation because of a response? Who’s to say at this point? I have scans scheduled for the 27th of this month, so I suppose they will tell the tale. I’m already anxious, of course. Sigh.
I suppose that part of dealing with this diagnosis is trying to find positive things to hang on to, and this early there aren’t very many. Its still very much trying to deal with the unknown. Hopefully as the days and weeks and months roll on, I’ll get better at that. Sorry for the rambling, though at least writing it out helps some!
Tim
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- May 7, 2020 at 2:14 am
I can relate to a lot in your post. Doing a blind study I (know now I) got Nivo. Very minimal side effects. Now I’m on the combo, yippie, spent the day in bed (saved only by immodium) and just read another post about hospitalization and discontinuation due to ipi. Today was the day for me that very idea of early discontinuation due to AE’s got very personal and real. Yet I always heard about it, when I wasn’t having side effects. Never thought “damn, I need a good case of diarrhea!” Makes me look closely at the logic of disregarding the experts for one’s own personal “feel”.We both got the same info about not reading into side effects. I won’t deny it is hard not to still think “take off the brakes” language means pain is gain. And then we think the converse, of course.
I told someone the other day (again) that I lost my right pit lymph nodes and have some lymphodema – which was for staging only, but since it is my only tangible evidence of this serious f’n disease, it’s kind of a personal badge of honor that I have some arm use limitations.
Objectively, that is just dumb. But it’s my own true story. I do sympathize with anyone who is dealing with this by tangible feel. I thought I had one of those – auricular node behind ear. Biopsy negative, but what a ride again. My progression is in my stomach and neck. Why have I had zero distress? (other than AE’s since tx) Does that mean “bad scan”? I wish! But not so much wish that I’d take an unnecessary endoscopy rather than complete the last 2 combo’s and just do another scan to see where we are at.
Finding positive things to hang on to – with reason is damn important. But also, I just have to shut my brain down and say “that’s enough melanoma thinking for the day” – including usually anytime I’m tired, like the end of the day. Many of us (that make it here) overthink our situations pretty intensely, I’ve had 3 years at stage 3 to get alot out of my system. But then S4 gives a whole new serving of existential dread.
I just read an S4 post that is up today that I find absolutely f’n heroic. Tagged it too cause I might need the info in it soon. Knowing of the dedication and talent level of the responders here shows me the best of humanity. Makes it possible and of great benefit to be here.
So, a companion ramble….that is all.
I hope that sounds stupid to most people.
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- May 7, 2020 at 1:48 pm
Pain is gain – yes! That’s a great and simple way to put it, about the largely illogical thoughts that go through one’s head in regards to AEs. Of course, its mostly inaccurate, but the bounds of what is reasonable get stretched when you’re thinking about your own mortality. I suppose its an indicator of how high the stakes are – one can swing from one extreme (How come I’m not having side effects? Am I not responding?) to the other (What happens if my side effects get so bad that I get pulled out of treatment?) Extremely difficult to find a balance.I remember at the outset hoping that I could endure the side effects. I prepared family members for the potential seriousness. Sure, the numbers for people that couldn’t tolerate all 4 treatments are nearly as good as those that do, but as do we all, I wanted all the odds I could muster on my side. So here I am now, basically breezing through 4 combo treatments, thinking, “It’s quiet. Too quiet.” And I just have to wait.
My treatment was on Tuesday, and I started to get really tired yesterday, and noticed that my neck was decidedly puffier where the disease is – I cheered my own malaise! Still under the weather this morning. Maybe I’ll get a fever!
Very good advice about just not thinking about it after a certain point in the day. Enough is enough. Stress isn’t good for the body either, so I’ll need to get better at occupying my mind with something other than impending doom. Probably doesn’t help that the only distraction these days seems to be, how bad is the virus today?
Companion ramble. I like that. Keep it up.
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- May 7, 2020 at 3:26 pm
I’ve had a minimum of side effects and have worried about it. Between two and three of the combos I developed a high fever and was hospitalized for a week. At that point they did brain surgery to remove my brain met. But once a healed a bit I was back in the meds and I have finished four combos and six single dose. I did finally develop mild diarrhea that was resolved with Imodium and eventually stabilized. Other than that, no rashes, bad blood tests etc.I do deal with a lot of side effects from my earlier (unrelated) brain tumor/surgeries.
My husband says I’m like a mean old alley cat who is impossible to get rid of Ha.
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