A little scared

Hi Amie, Sorry to hear you got startling news today. I’m relatively new to Stage 4 as well but i’m happy to share what I know and have heard in hopes that it helps ease your mind a bit:

1. Be patient with the patient. Sometimes it takes a little bit longer for anti PD-1s to really start working. My Onc told me that a lot of the time they will see response after the first three doses but sometimes it’s not until after the fourth or fifth dose. So, it may be that your husband’s body needs a little more time.

2. I recently had my first set of scans since starting Nivo and I had mixed results — nothing new, my smallest spot in the lungs gone, another spot in the lungs shrunk and the third one increased. I was bummed to find out that one had increased but my onc said it was within the pseudo-progression range and that eased my mind a bit. Maybe you could ask your onc about that.

3. My next plan of attack, if needed, is to incorporate SRS on the largest lung tumor because there have been several studies to show that using immunotherapy with SRS increases the efficacy of either tactic used apart.

4. If Nivo alone is not the right answer for your husband, you can always add in Ipi. The combination of Nivo and Ipi has a MUCH higher response rate.

Sending you a big, virtual hug. I know how scary this all is and there is nothing you want more than the news that everything is clear again but this is still the beginning of the fight and you have so many great options at your finger tips. You and your husband can do this! I know it!

Hi Amie,

My wife is the melanoma patient, but I've been involved at every step.   The oncologist told us, when she started immunotherapy almost a year ago, that we should expect at least 12 weeks before anything started to really respond.   Your husband's last scans are probably still a little early to see what is really going to happen.   There are also lots of cases with a false progression where the tumors do increase before starting to increase, the theory seems to be that they are inflamed and undergoing an initial response to the treatments.  

Just to give you some positive hope, my wife had two brain mets diagnosed a year ago.  Today, after surgery on one, gamma knife, and ipi/nivo and now nivo, she is NED.  Good luck to you and your husband.

Hi Amie,

 My oncologist stated that the expectation is to see the tumors swell and then reduce if the treatment is working.  I've been lucky to respond.  Try to be patient and see what the doctors have to say about your husband's progress.  I've been on immunotherapy since September 2016 and am still going in every two weeks for nivolumab infusions.  My advice is to focus on the good news.  He has no new tumors and no brain tumors.  This is great.  This journey is a tough one and I think maybe tougher for those that are caregivers.

I wish you both all the best and hope that the enlargent in the lung tumor is indeed the swelling due to the treatment.

Jennifer

Hi Amie, I thought you might like this link on using targeted radiation with immunotherapy. There are several small trial going on with solid tumors, not just melanoma. It is early days in data coming out of these investigations but it looks like a good option. http://blog.sitcancer.org/2018/01/why-combine-immunotherapy-with-targeted.html

Hey Amie,

So sorry for what you and your husband are dealing with!  But Ed is exactly right.  We have learned that when we combine immunotherapy WITH radiation we get better responses than either therapy alone.  We have learned that is true for brain mets as well as tumors located elsewhere!!  His link reviews a bunch research noting all this…but if it helps to see even more affirmation, here are a ton of posts on that very topic:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

Wishing you both my best!  Celeste

Hello, like Jennifer & Amanda said, psuedo progression is a common place during treatment, our meds tend to swell up the tumor{s} & during our "scans" they will look as if they are getting larger! but, there are tumors that do get larger regardless of the said "meds" {just being honest}. Question, he has "one" tumor in his lung? why wasnt it taken out through Surgery? i too have Melanoma tumors in my lungs {both} and of course its way to many for surgery at this point, just curious! we wish him well! oh, i to am taking Opdivo but with Yervoy, i wish he was given both as a combo, stats are higher for tumor "shrinkage" then Opdivo alone…Its not to late though! but im no doctor…be well…Mike