hxcadam

Going through similar.  Had 2 small brain mets treated with SRS in Feb 2020 – started Nivo and when my body progressed went on Taf/Mek.  Did taf/mek until July 2021 when the tumor on my T2 tried to paralyze me.  Had surgery and found a small brain met during MRI at that time.  Had SRS for that and started on the combo ipi/nivo.  On follow up imaging 5-6 more popped up in brain.  Just had SRS to those on Monday.  I wonder if targeted therapy was holding back the brain mets?  Perhaps targeted was keeping my T2 at bay and once targeted stopped keeping it – it helped spread further to the brain.  I just had my 3rd dose of Ipi/nivo yesterday with no real side effects, probably not a responder.  Will probably go back to targeted if I make it that far.

No harm in getting them removed and biopsied if it’ll give you piece of mind.  I have a few moles on the top of my head that have been there most of if not all of my life.  Derm always is pretty thorough when checking my scalp and have never had one biopsied up there.

Did you go through Pfizer’s website to get copay assistance?  I have private insurance and got automated acceptance through their website when my doctor prescribed Braftovi/mektovi to me.  This is the link – https://www.braftovimektovi.com/patient-support/#financial-support

I’ve been on Opdivo since Feb 2020 and started Tafinlar/Mekinist in May 2020 in combo with Opdivo.  Current scans are stable.

3 years is great!  Definitely much longer than the average person.  I believe the majority will only see about 10-12 months on average before progression starts again.  I’m currently on Taf/Mek just over a year now and last scan looked like I was seeing new sites but have to wait for next scan to confirm (small lung nodules popped up).  If you are tolerating it I don’t see why taking it for another year would be bad other than financial burden.

Right out of the gate was given single agent Nivo with radiation.  Showed shrinkage in original tumors but others popped up elsewhere so was given the triplet.  Saw shrinkage everywhere for the first 8-10 months and no new sites.  Last scan in April just showed potential new sites in my right lung but everywhere else was still stable.  My insurance has covered it.  You need to have the doctor fight for you and appeal with cause for the appeal and they should cover it.

I received 2 rounds of Ipi in mid 2017 (June and July I believe).  Had to stop due to colitis.  I believe the dosage was 10mg/1kg so roughly 1000mg each dose.  Was told to wait 6 months if I remember correctly before attempting to start a family.  My son was conceived in mid February and born November 2018.

I haven’t had the combo but back in 2017 at initial Stage 3c dx I had 2 rounds of Ipi at 10mg/1kg (about 1000mg).  I ended up with colitis but not in the hospital.  They stopped me after that.  In 2020 I progressed and they put me on Opdvio monthly at 480mg and have not had any side effects from the immunotherapy that I can tell.

I’m taking Taf/Mek currently.  It’s 4 pills of the Taf and 1 of the mek daily.  I get fevers generally on a 2-3 month basis that last for about a week.  With them usually I’ll get a day or 2 of chills that seems to only set in overnight.  Other than that though maybe some mild fatigue and mild joint pain.  I do work 10 hour days though so may not be the medication causing that.  Coming up on a year taking the pills and they definitely worked to reduce tumors but last scan seemed to just level off with nothing growing or shrinking.  Next scan is 2 weeks from today.

I have not experienced the combo yet but with just nivo alone paired with radiation I saw good shrinkage to 2 lung mets.  I did see progression however to other sites and was put on Taf/Mek.  It’s been about a year since the nivo/radiation was originally given and my last CT scan in Jan. said this:

 

Lungs/Airways: Radiation-induced changes in left lower lobe, unchanged. Bilateral calcified granulomas.  No suspicious lung nodules seen.

Which I think means that they’re gone.

 

 

Congrats!  Keep at it!  I was 3c at dx in 2016 but at the time they didn’t have approval for Opdivo so I had Ipi for a couple rounds before side effects took me off.  I made it 3 years before recurrence with 6 month scans.  Just keep at it!  Opdivo is way better than ipi as a solo agent.

Your husband sounds a lot like me.  Early 2017 was my WLE and sentinel and then lymphectomy due to finding a small amount in the sentinel node.  Early 2020 recurrence in Lung, Spleen and Brain.  I had 2 small (about 1cm ea.)Brain mets that were handled with SRS radiation and went on Opdivo.  Showed progression elsewhere after 3 months of Opdivo and added targeted therapy (Not sure why your oncologist stopped Opdivo when they started targeted as it’s been shown the Trio can be good).  My most recent MRI and CT showed brain is clean (1 gone and the other just a scar at this point) and all other disease is stable or shrinking slightly.  I’ve reacted similarly as your husband to targeted.  Fevers originally on a 4-6 week basis but now they’re just sporadic.  Some fatigue and had a rash at one point but they think it was amoxicillin that caused it.

PET Scan from 7/19 said this which my doctor either missed or didn’t tell me about and at that point I was on the NED high and wasn’t going over my own reports like an idiot:

Lungs/Airways:  No abnormal uptake.  Left lower lobe 0.7mm lung nodule image 192, at the limits of PET resolution, subtly demonstrated in 1/2019.

 

CT scan from 1/20 when they officially told me I was stage 4:

 

Lungs/Airways:  Multiple bilateral calcified granulomas.  New 1.2 x 1.1 cm left lower lobe met in the posterior costophrenic angle and 1.9 x 1.8 cm left lower lobe perihilar met.