AZSoCal

Very sorry to hear about your father!

I'm no expert but if I recall correctly tests can still show an increase in the cancer until you've completed several treatments. I would need to refresh my memory to state that with any real confidence so take that statement for what its worth (very little). You might want to seek out a second opinion on the subject in parallel with his existing treatments.

That said, looking exclusively at immunotherapy treatments, a combination of Ipi & Nivo should give him the best chance at a full or partial response — greater than just Pembro (Keytruda) or Nivo (Opdivo) alone. Assuming he doesn't have any side effects, there is no need to switch back to just Keytruda if he shows a response to these drugs.

There is a greater chance of side effects on a combo of drugs. The list above was pretty extensive but you should also be concious of heart inflamation. It's incredibly rare (<1% of patients) but one of the more dangerous side effects. 

They typically run a CK blood test to measure inflamation in the body, but a CK-MB will specifically test for cardiac inflamation. Most accurate is to test his Troponin levels, which is what they use to determine if someone has had a heart attack.

They won't need to test these blood markers continuously but it should be tested in the beginning. I started seeing increased levels of Troponin after just 3 infusions and only 1 combo dose, and was removed from the trial.

NOTE: Some inflamation is good. It could mean the drugs are working. Don't take a high CK reading as bad news along; it needs to be combined with Troponin to really be accurate.

There does seem to be a massive difference in the quality of care from a hospital system that specialize in melanoma vs hospital systems with a broader oncology focus. You may want to seek out other referrals for melanoma experts in your area.

What hospital system are you using? 

Sara,
So sorry you have to go through this again! 
I can only imagine how stressful it must be, particularly having to wait another 2-months. 

Just wanted to throw you some quick support your way and say that I really admire your positive attitude. 
Lots of people can go through challenging times and let it be the excuss that destroys them. It's clear youy've take a different, more empowering and insipring attitude.

There are a lot of people on this board I admire for similar reasons… I think it's what gets us all through theses difficult times — seeing others go through these challenges and watching them come out the other side stronger and probably even becoming a better human.

Stay positive and keep doing what you're doing. It helps all of us! 🙂

– Aaron

Thanks for sharing and summarizing!

Certainly very encouraging news, but also incredibly frustrating the more I understand the economic motivations of pharmaceutical companies when it comes to trials and insurance companies when it comes to test/treatment approvals. You would hope their decisions would focus first on providing the best care and outcomes for patients. Sadly that's rarely the case.

The good news is the economic upside of these drugs is translating into massive new investments in combo trials by pharmaceutical companies. Hopefully, this leads to even better treatments in the near future and better access to care options near-term. 

I was personally denied access to Keytruda by my insurance company after being removed from a combo trail (Ipi/Nivo) due to cardiac inflammation. Fortunately, Merck granted me access via their Patient Assistance Program.

Best of luck everyone!

Very sorry to hear about your mother. 

Did she experience any side effects while on Keytruda?

I'm going to assume she'll likely have similar symptoms on a combo of drugs with the possibility of things being amplified this time around given the increased dosage (via the combo of drugs).

Most should be treatable/manageable but it's really impossible to predict. If she had things like stomach issues or fatigue in the past you might be able to get ahead of them by adjusting her diet/sleep schedule to (partially) compensate.

In terms of rare but serious side effects, there are some potential cardiac issues that <1% of patients have experienced, myself included. 

You'll want to keep an eye on her CK levels. If these start to rise, they can have them test her CK-MB and Troponin levels, which measures cardiac inflammation more specifically. Again, these are super rare so probably unlikely to happen but also not the first thing they look at because of the rarity.

Best of luck to you both! 🙂

I would stick with Dr Freeman if I were you. Facilities bring certain ammenities, but your health is most dependent on the doctor, IMO. I'm also a big fan of Dr Freeman having been under her care at The Angeles Clinic for the past year.

That said, I've also heard great things about City of Hope. It was recommended to me by many others in my research, and I'm confident Dr Freeman wouldn't have accepted a role there if she felt like the facility wasn't top notch.

What I would recommend, having transfered to a different facility myself after a recent move, is to check the average wait times for appointments. I went from being about to get an appointment with Dr Freeman in a few days to waiting 3-4 weeks to see my new doctor at UCSD, and 3 weeks to get CT / PET scans scheduled. 

The average wait times for infusions are also longer since they don't fill the perscription until after you arrive and are sitting in the chair. This can add another 30-90 mins to the appointment, depending on how busy they are during your appointment. Their infusion rooms have a much nicer view though, and they allow guests to join you (unlike Angeles Clinic), so there are some advantages. 🙂

I had cardiac side effects on a combo of Nivo/Ipi. It was caught early but they had to remove me from the drugs after just 4 treatments — one Nivo/Ipi combo and three Nivo only treatments — due to the risks of continuing treatments.

This is a really rare side effect (~0.28% of patients) so its not often monitored directly, and most specialty clinics/doctors won't have seen it very often, if at all. Mine was indirectly diagnosed (asymptomatic) through elevated CK levels that eventually lead them to test my Troponin.

Good news is, It should be easily corrected through 2-3 weeks of steroids with no lasting effects. Just make sure they have tested her Troponin levels.

Good luck!!

Sorry to hear the news! :-/

Where are you being seen? Pretty poor approach to have you receive this information via a website. I would question the doctor or hospital system that's treating you, and certainly seek out other resources should you continue to see a pattern forming here.

In terms of options, have you done immunotherapy yet?

I think a 3rd opinion would be overkill. You already had the WLE. There's really nothing else that can be done anyway.  

Interesting. Wonder if they would have allowed you to get Nivo by itself, assuming you had a negative reaction to the combo. Good luck!!