Long-term side effects for Gem/Doce ttreatment for NMIBC?

I have found in some online research that chemo brain, which I have been experiencing in a way that gets a bit worse after each treatment, has some possible treatments.
Some physicians are prescribing modafinil, which is an add/adhd medication, to help with the symptoms of chemo brain. There have been actual studies done with some good results.

My oncologist has only told me that I have to seek care elsewhere for that. I did some research and found an online psychiatry office that handles medication for add and adhd. I have a consultation with someone from their office to discuss why I want to be seen, so they can direct me. I don't know if they will actually agree to see me for chemo brain medication, but I will find out on Wednesday!

@mochat
Update: urgency down to almost zero; sleep interrupted only 2-3 times per night. Feeling pretty good overall. Last GemDoce was Dec 9. In case I haven't mentioned previously, I'm 85.
Going for 10+ mile bike ride this afternoon.
Happy New Year!

@gemdoc25 So happy for you, and impressed with your long bike ride. I am doing pretty well now. Had my last gem/doc on Dec 10. Took two 4 1/2 hour flights to visit son for Christmas & only 1 toilet trip in each, which I had been worried about. I am 82yrs. Stay well and enjoy your bike riding 😊

@mochat I had similar travel experiences, but by car: overall about 18 hours total, there and back and no mad dashes to a toilet. Very encouraging.
Yes, I did my 10 miles.
Best wishes

@bethcamp
I am updating my own post. I didn't quite understand that I was signing up for a "sorting hat" (Harry Potter reference). This company actually sorted me to set me up with an advocate who would help me navigate finding a psychiatric office that would be comfortable prescribing off-label use of the ADHD medication for treating my "chemo brain".
At first, that seemed excessive, but while I was waiting for a call back from the advocate (which is covered by my insurance...) I tried finding help on my own. After getting absolutely exhausted by dead ends - including my own PCP's office not taking messages correctly, I am waiting for the appointment with the Advocate.
I have no experience with psychiatry - the ones who can prescribe the modafinil, so perhaps the advocates can cut through some red tape. I guess it is worth a try if it helps with the chemo brain. I have six more months of treatment, and I know chemo brain doesn't magically go away after the last treatment. It lasts from one month's treatment to the next, so I am being realistic. I will update once I know more.

Chemo brain (or cancer-related cognitive dysfunction) is a common side effect of cancer treatment causing mental fogginess, memory issues, poor concentration, and trouble multitasking, described as feeling "slow" or confused, stemming from chemotherapy, radiation, stress, fatigue, or other related conditions. While often temporary, symptoms can persist and impact daily life, but strategies like notes, routine, exercise, and distraction management can help cope with this very real phenomenon.

Had my third monthly treatment yesterday. My experience is very similar to yours. I thought it would be much easier just having a monthly treatment, but that has not been the case.
I also read and another comment about shaking, which I am also experiencing. I decided just to let that go for a while.
I have my six month cystoscopy in two weeks.
I also read another comment or a doctor says we shouldn’t have any systemic side effects from this treatment, but that is simply not true in my case. This medication does not seem to just impact the bladder.
I’m happy to have connected with some folks on this same crazy journey.

@lacks Yes I think our doctor thinks we are making things up or something. Because they never seem to be concerned about the side effects. So far they have been: fatigue, heavy legs, lethargy, Raynaud's flare, arm and leg weakness when trying to do routine things around the house, bladder spasms, stinging with urination, brain fog (chemo brain) and yesterday anger. My spouse is a very calm easy going person, but yesterday afternoon there was a lot of anger to the point where they said they were angry and didn't know why and were going to bed. This morning I asked how they were feeling and they said better, but these drugs are messing with them and they felt almost bipolar yesterday. We have 2 more treatments to go and I feel like each week brings a new side effect and worsening of the other side effects. I also thought there would be no issues outside of bladder discomfort and stinging on urination. I have mentioned twice to the doctor/PA about maybe there is something they could take for the stinging and the getting up at night multiple times -- so far it just seems to be "yep, this is the way it is." ANd they just stand there and look at me like I have three heads or something. I'm glad to hear we are not the only ones going through this, because it does help to have others who understand. Lord knows the friends and family don't understand!

My hair is falling out in handfuls.
I have had the BCG, but didn’t work for me.
Now have had 6 weekly gemdoc, and about to have my 4th monthly gemdoc with 1 more to go and then BlueLight cystoscopy.
Last BlueLight cystocopy bladder was totally clear.
I hate the gemdoc experience but am coping well except for fatigue and the servere hair loss.

@mochat
Hi mochat,
Had my follow-up cystoscopy on Thursday . No sign of cancer. Pending urinalysis for cancer traces. Starting 4-weekly instillations next Friday. Will have these for 12 months
Best regards.