Newly diagnosed scared and searching for information

Hang in there Kms.  It's overwhelming right now but it gets better.  There are lots of new treatments to be hopeful about.  If I was in the Chicago area this is who I would seek out:

http://www.uchospitals.edu/physicians/jason-luke.html

Hang in there,  Also find a melanoma specialist as a general oncologist is just not up to date enough of everything involved with melanoma.  

An oncologist who specializes in melanoma is best for what you'll need. Personally, I like to go with the National Cancer Institute's recognized Comprehensive Cancer Centers. You can find some in the Chicago area here: https://cancercenters.cancer.gov/Center/CCList

There will be more tests before you get loaded up with treatment options. Testing for BRAF positive or negative will likely be the first in line, as this will determine what additional drugs may be available for you mutation. Please don't allow a general onc to set off more panic alarms than you are already likely hearing within your own mind. There are treatments available that may work for you without diving into trial research…. although some trials may be benificial to balance out as well. 

I am also stage IV.  I've had very good luck with Yervoy/Opdivo treatment.  I'm 30 miles north of Boston so I'm at Dana Farber Caner Institute and can't help with suggestion for a specialist but that is definitely the first place to start.  You want someone who is up to date as the immunotherapy treatments are newer (Yervoy approval was in 2011.  Opdivo was January of 2016. Keytruda was in 2014.) A good specialist will already be thinking about which treatment/treatment combination to start you on.  You also want to be confident and comfortable with him or her.  This journey won't be easy but try not to get overwhelmed.  There are many great doctors out there.  Please let us know how your search goes.

I'm relatively new to Melanoma (Jan diagnosis) and here in Chicago too…The good news is that you have options here in town.

I'm with Dr. Luke at The University of Chicago and think highly of the approach, support and forward looking strategy to manage my stage 4 lung diagnosis. I'd recommend him to anyone. You'll also have access to Dr. Thomjas Gajewski who heads up the program. 

I also talked to Dr. John Richards based out of Park Ridge…he's very experienced and focused on Melanoma. 

Northwestern has a new guy…Dr. Jeff Sosman that came out of Vanderbilt and has a good reputation clinically. 

I took the time to go down to MD Anderson and spoke to Dr. Tawbi there. He's good if you're open to travel. 

If you want to connect direcctly. Shoot me an email at [email protected] and we can talk. 

A great deal has changed (for the better!!!) in melanoma treatment just since 2010.  A melanoma specialist is essential and the Chicago area is a good place to be for that.  Here is a very basic break down of treatments that I recently posted for another new to Stage IV on this forum:

1.  Surgery remains a good choice for melanoma…cause if a lesion is gone….that is an immediate decrease in your tumor burden…always a good thing.  However, if by chance you are thinking of a trial (and you have plenty of options without doing that) they sometimes require "measureable disease" so the tumor would need to stay.

2.  Radiation is a good option in melanoma IF (!!!!!) it is combined with immunotherapy.

3.  Immunotherapy:

These are treatments that push our immune systems into action.  Side effects are usually related to an "over activation" of our immune system.  Common side effects = fatigue, rash, joint pain.  More complicated side effects are inflammation in the lungs or colon, problems with thyroid function, as well as others.  Response can take a minute.  Work best with the lowest tumor burden.

ipilimumab (Yervoy, often called ipi here) – an anti-CTLA4 monoclonal anti-body.  Given IV.  About 15% response rate.  Responses can be durable (lasting).  More side effects than anti-PD-1 products.

Pembrolizumab (Keytruda) and Nivolizumab (Opdivo) are both anti-PD-1 products.  Fewer side effects than ipi.  Work about the same with approx 40% response rate.  Responses can be durable.

ipi/nivo combo – combo of products as noted above.  More side effects than anti-PD-1 alone due to the bad boy ipi, but with greater response rate – around 50+%.

4.  Targeted therapy:  BRAF inhibitors.  Work incredibly well for folks who are BRAF positive.  About an 80-90% response rate.  Downside…responses are not often durable.  Folks often recur in about 6-9 months as tumors learn to work around treatment.  There are exceptions to this and those who have maintained responses on these drugs for years.  They are always given with a MEK inhibitor…as that combo will decrease side effects and extend response times.  Side effects are often fevers among other things. Sometimes these drugs are used to have a rapid decrease in tumor burden and the patient is then switched to immunotherapy before resistance develops.

5.  Intralesional therapies – there are several…need to have an accessible tumor for injection.

I guess that's pretty much the basics.  You can use the search bubble on my blog to find more info if you wish.  Many helpful folks are on this forum.  Ask if you have more specific questions.  I wish you my best.  Celeste

My husband in under the care of Dr. Jason Luke and the University of Chicago.  He is excellent and I highly recommend him.

I see Dr. Thomjas Gajewski, I think he is pretty awesome. I too am stage 4 with unknown primary. I had a 3 inch tumor resected in September from my back. I did 2 doses of ipi, which gave me colitis. So I could not continue. I currently see all my specialists at U of C because they all work closely together and communicate with one another every week on Friday. I am currently NED. These doctors are great and take time to answer any and all questions you have. I have never felt rushed out of their office or left confused. I highly recommend them, oh and you never have to wait long either. They are really good about keeping up on appointment times!!

I have mucosal melanoma and have been treating with Dr. Nick Pfanzelter at Rush in Chicago.  I had radiation treatments at Community Hospital in Munster, Indiana.  Other than that, my treatments have been at Rush.  I've had several surgeries to remove tumors as well as a round of Yervoy which didn't do much as I'm now doing Keytruda.  I didn't have many side effects and was able to continue with my daily activites…as long as I got a nap in!  I did consult with Dr. Luke at U of C but, at the time, I didn't have lymph node involvement so I wasn't a candidate for his studies.  I went on the Amerian Cancer Societies web site and they had a lot of good questions that I asked my doctors. Be your own advocate and don't hesitate to ask anything!