Stage 4 melanoma brain mets

Dear Amy

I think others here more knowledgeable will give better answers but my understanding is that these targeted therapies can work for more than 3 months. They usually fade off and stop working but my understanding is that this is not always true, there can be exceptions. So I think its quite possible you will get more shrinkage. My understanding from the US experience though is that you need 2.5cm but that in the US they will operate on more using SRS (before turning to whole brain radiation which i think has side effects).. So I would wish the NHS (I am British too!) would be more understanding and be willing to operate on more than 2 lesions.

I hope others who are more expert will confirm or correct this. Hope your dad will do well
Best wishes Mark

Hi Amy. I just completed the SRS on three brain lesions, one of which was quite large at 2.8 centimeters and have been told that there is a 95 percent and up chance that it will be a successful. I hope that you can get the SRS for him, as there are very few side effects when it is done so targeted in that manner. I have had some fatigue and headaches, but nothing like my terrible headaches from the tumors. I feel compelled to follow up with some other adjuvant therapy because I am at high risk for return in my brain or elsewhere, but feels so good to have completed the SRS. Hope you can push for this is you feel that it is safely a viable option as part of his treatment plan.

Will keep you and your dad in my thoughts.

hi Amy I too am from northern Ireland and had SRS on a brain met at royal Victoria hospital in dec 2018, I do remember the doctor saying she was prepared to do 3 mets that day if they had appeared from last scan thankfully they hadn’t
I’ve been NED ever since
I was reading your earlier post did u have any luck finding melanoma specialist
best of luck with your dad and all my prayers

UK may have different policies however in the US my radiation oncologist informed me that he would do anything he could to avoid radiation to the entire brain and he would certainly do radiation to up to even 18 different tumors before he would consider full brain radiation. I find it difficult to comprehend that the UK would opt for no more than two lesions. Is it possible to get a second opinion with the actual radiation oncologist? I would certainly not accept what you were told.
As for the switching to immunotherapy, I would let the targeted therapy work to it’s maximum, get the stereotactic radiation and then proceed with whatever treatment may be necessary. The reason why stereotactic radiation is utilized before immunotherapy is that immunotherapy may cause initial swelling or growth of the brain lesions which is not something one would want especially in the brain.
I am glad the brain tumors are shrinking and that your father is feeling great.
Good luck,
Melanie

Hey Amy. So sorry for all that you and your dad is going through!!! He is lucky to have you in his corner. I hope he had a good birthday!

Melanoma decisions are very difficult no matter who or where you are. They are certainly impacted by the policies of medical governing bodies delineated by geography. With that understood, I think being armed with real research data gives all of us the best chance to survive this disease.

In regard to radiation and brain mets. Most radiologists certainly agree that multiple brain mets can (and should) be radiated via targeted radiation (like SRS or gamma knife) rather than resorting to whole brain radiation which has a high risk of debilitation. The equipment used does dictate the size of lesion that it can effectively treat. Further, many radiologists in various countries, have found that if they feel that cannot do ‘X’ number of lesions in one go, will create a plan to do – say – three in this go and 2 in the next session. Something like that. Perhaps, your dad’s radiologists could look at your father’s lesions in this way if they can’t see their way clear to do all three lesions at once.

Yes, it is absolute fact, unfortunately, that tumors of most folks on targeted therapy will find a way to ‘work around’ the drugs in 6-9 months. However, there are those who are effectively maintained on those drugs for years. It is hard to know ahead of time which way your therapy is going to go. Both targeted therapy and immunotherapy are helpful in treating brain mets – especially when radiation is added to either!!! (More on that in a minute.) The great thing about targeted therapy, for the half of melanoma patients who are BRAF positive, is that they work well and quickly. Immunotherapy works far more slowly. A lot of oncologists prefer to use targeted therapy right up to the edge, to get the most shrinkage possible, then switch to immunotherapy when the tumor burden is reduced. However, it is difficult to know WHEN the time is right. If your father is followed by frequent scans, that would be helpful in catching any diminution of response to targeted therapy quickly and allow for a switch to immunotherapy at that point.

Now, for the elephant in the room – radiation to brain mets. While both targeted therapy and immunotherapy have been proven to be effective against brain mets – we have also learned that when EITHER is COMBINED with radiation – the results are better than with either systemic therapy or radiation alone. The idea that combining immunotherapy with radiation can cause swelling to the brain has been absolutely DISPROVED!!!!!!!!!!!! Here are a zillion articles that cover that point as well as the effectiveness of radiation in combination with systemic therapy to melanoma brain mets:

This from earlier this year ~ https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/05/the-ipinivo-combo-with-radiation-to.html

These from years and years and years ~ https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

Can edema occur due to radiation, systemic therapy or the fact that brain tumors are sitting in our brains? Sadly, yes. Is the chance of that edema worsened by taking immunotherapy and radiation together? The data says no.

On a hopeful note – I was diagnosed with Stage IIIb melanoma at the age of 39, 17 years ago. As there were no effective treatments available until 2011, I did progress to Stage IV with brain and lung mets in 2010. Luckily I had surgery to my lung, SRS to my brain met, and participated in a clinical trial with Opdivo that year. I finished 2 1/2 years of the trial in June of 2013 and I have been melanoma free with no further treatment. I will turn 56 later this month. Hang in there. I know what a force of nature and rock of support my family has been to me – especially my daughter. Love and hugs to you and your dad.

(You may find the search bubble on my blog helpful.) I wish you my best. celeste

Hi Amy just to add a little to the information given to you so far, last year at ASCO findings from two brain met trials were discussed by Onclive peer panel. First to checkmate 204 trial and the results. https://www.youtube.com/watch?v=gDu3x9xhH-U https://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.9507