Melanoma stage IV searching for the best treatment

Posted By
thinkingofu
7/16/2017 4:01am
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Replies: 13

Hello everyone!

My mother has just been diagnosed with Melanoma Stage IV. She lives in Eastern Europe at the moment, and I am afraid she will not receive the best possible treatment there as she resides in a developing country. Doctors themselves stated we should move her to Germany or similarly developed European country. And, ideally, USA when she feels strong enough

Here is our background:

She started to feel very dizzy a week ago, hospital ordered CT scan which showed 3 metastases in her brain and a lot of swelling around two of them.

There was also a mass found in her lung.

Doctors determined it was melanoma stage IV. She removed a mole 5 years ago in the same country, but the doctor did not send it for review (as it turns out, even though she asked him too. He said there is no need), so we had no idea she was living with melanoma  all this time.

She had an operation yesterday on her brain during which the swelling was relieved as well 2 of the metastasis removed.

Initially, as we found out about diagnosis, we were upset, as any loved-one would be, but then I started reading about new treatments that may give us hope (including this forum). Am I correct when I say that 

SRS combined with Ipi/nivo would give us the best chance?

What about Ipilimumab (yervoy) Opdivo and Anti-PD1? In isolation they are not as effective, correct?

And what about more conventional chemo drugs? I read there are not as effective, but are some more effective than others?

Sorry for so many questions, but since they are preparing for chemo, we need all this information to actually guide her current doctors in the right direction since they admit themselves to have very little knowledge about new developments in melanoma treatment. 

And final question, I promise (sorry): Have you heard of any good western european clinic that uses the latest protocols for treating this desease? I am aware we will have to pay for it from our own pocket, and its OK, I am prepared to sell everything I have just to save my mom. 

Thank you for reading this post and if any of you could share your experiences regarding treatment protocol and good clinic/doctors my mom and I would appreciate it so much

xxx

Hi so sorry you are going through this. 

I have friends in Germany and Austria who have been successfully treated with immunotherapy even with brain mets. So I'm sure those two countries are up on the latest if that helps. 

Thank you so much for replying. Could you please share the names of the clinics? Please, I would be forever greatful

I have messaged my friend in Vienna who had brain mets and is now clear. Hell give me the name of his clinic

Thank you from the bottom of my heart xxxx

I am sorry you are going through such a hard time and your mom too.Being an Eastern European American myself, please take my advise:bring her to the States ASAP /if you can afford the treatment  cost here in the US/.I wouldn't be alive today if it wasn't for my brilliant doctors here in the US and their amazing experise and knowledge.They saved my life twice so far, literally.They are the best and that's where the ongoing scientific research and newest treatments for melanoma  are being developed.I would feel very nervous to settle for anything in Europe,not with this deadly cancer. Best of luck to your mom,

T.Chasse

Thank you so much for your answer. I would gladly bring her to US, but she will most likely not survive such a long journey-we have been told. That is why I am searching for treatment in countries like Germany (for now), maybe those who implement the same protocols as in the US ..and then bring her to US when she is stronger

I am sorry you and your mom are dealing with this.  There are many who attain excellent treatment in Europe and of course you can attain excellent treatment in the US (if you go to a city with access to melanoma specialists) as well.  Here is the down and dirty.

A melanoma specialist (or at least an oncologist who deals regularly with melanoma) is a very important first step.  Surgery is often the next most important.  Immunotherapy works best with the lowest tumor burden.  Depending how large it is and its location, it may be wise to have surgery to remove her lung lesion .  Radiation to the brain lesions (both the areas from which tumors were removed and where the last one remains) is super important.  NOT whole brain radiation, but pinpoint treatment often referred to as SRS (stereotactic radiation) or gamma knife.  They can do many lesions (into the teens even!!) at once, so three areas are certainly doable.  However, radiation alone is not very successful.  In many areas of the body, but particularly the brain, immunotherapy PLUS radiation is often the winning ticket. While we have learned that all immunotherapy DOES work in the brain through the action of t cells....it does better WITH radiation when added as soon as possible!

Here are about a zillion reports:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=radiation+and+immunotherapy

As to immunotherapy itself - you are correct that old time chemo is ineffective in melanoma.  Ipi (Yervoy) has about a 15% response rate...though those responses can be durable....and is the bad boy of side effect.  Nivolumab (Opdivo) and Pembrolizumab (Keytruda) are both anti-PD-1 products with similar side effect and response profiles of about 40%.  The ipi/nivo combo has a response rate of about 50%, with side effects predominantly due to ipi.

Side effects of immunotherapy can be almost non-existant to severe.  The most common side effects are fatigue, rash, arthralgias - to more significant things like colitis, pneumonitis, and endocrine effects (like damage to the thyroid requirig folkd to be on thyroid hormone replacement).  Side effects are often treated with a break from the offending therapy and steroids.  To that point, any side effects SHOULD be treated and the prednisone (if required) does NOT impeded  a response by melanoma.

There are also targeted drugs called BRAF inhibitors which are always given in combination with MEK inhibitors.  These can be incredibly effective in reducing tumor burden if the patient is BRAF positive.  Your mom's tumor should be tested for this!!!  However, in most folks tumors learn to work around these treatments in about 9 months or so though some folks can be maintained on these meds for years.

I hope this helps.  Ask questions if you need. There are many knowledgeable and kind folks here.  You may also search my blog for data on all these topics by using the upper left search bubble if you like.

I wish you and your mom my best.  Celeste

 

So much helpful information. Much more then I received in a week from several doctors. Thank you again for being so great  x

Hi thinkingofu, I have two links for you of Melanoma specialist in Germany that are at the leading edge of research in Melanoma. https://www.youtube.com/watch?v=SwCKnGeHuXE and the second specialist at the following link,https://www.youtube.com/watch?v=eHuujoWKUUs   I don't have the contact information since I am from Canada, but it shouldn't be to hard to find, the links have the information of where they are from and what institutions they are part of. Best Wishes!!!Ed 

wow..Thank you , Ed! You are amazing. All of you are. I never expected this level of support. thank you so, so , so much xxx 

wow..Thank you , Ed! You are amazing. All of you are. I never expected this level of support. thank you so, so , so much xxx 

My very first tumor was found in my lung and misdiagnosed.  My disease remained confined to my lungs until September 2016 when I had a seizure and we learned it had spread to my brain.  My lung umors had previously been tested for the BRAF mutation and came back as positive (V600E).  Due to this, my oncologist put me on targeted therapy (Tafinlar/Mekenist) for a quick response and Keytruda at the same time for hopefully a durable response.  Keytruda does not tend to take immediate effect, though it can in some people.  The idea was for Taf/Mek to reduce my tumor burden quickly and then for my immune system, thanks to Keytruda, to mop up any leftover cells.  I got an immediate response from Taf/Mek but also underwent gamma knife.  My neurosurgeon does not have much experience with these drugs in his patients and was very skeptical.  Gamma knife was effective for two out of three tumors but the third one got angry and swollen resulting in two more seizures.  In the meantime, I went off Taf/Mek due to fevers.  I had had only three infusions of Keytuda when I went in for follow up scans.  These showed two new tumors in the brain one of which was 2cm X 2cm.  A craniotomy was performed to get that one out followed by more gamma knife.  I went back on Taf/Mek but at half the dose for Tafinlar.  Next scan showed full resolution of all but the one stubborn brain met though even that one was a lot smaller.  My neurosurgeon was dumbfounded.  He thought for sure they'd see new mets like last time.  My oncologist is converting skeptical doctors into believers of this approach,  my most recent scans last week show all brain mets are completely resolved and no new ones have popped up.  I hope it stays that way.  Only time will tell.  Good luck to you and your mother.  I hope she receives the right treatment that works for her on the first try.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017