Dad craniotomy next week. Where to start?

I am not going to make light of the fact that it is in his brain or stage 4, but let me say I wouldn’t start thinking all is lost. I have been stage 4 for 7 yrs with a brain met. For me targeted radiation and keytruda have been the best route. I couldn’t even tell you what to ask the surgon since I stopped mine short with I don’t want the details just get it out, but that’s just me. Best of luck to your dad and remember to try not to look at anything more than whats in front of you, it’s exhaustive and scary to do it any other way.

Hi

Sorry that your Dad is stage 4 now but the good news is there are various immunotherapy options for treatment which have worked very well for many people.  The best advice is to go to a melanoma specialist who will know the latest and grestest in your Dad's situation.  We are in Texas so am not the best person to recommend specialists in Cali but there any folks on this board who can help there.

good luck with the second surgery

Maria

I know this is such a difficult time, especially trying to understand what is happening and next steps. I agree you need to get to a melanoma specialist.  If you are in SoCal, highly recommend The Angeles Clinic – Dr. Hamid or Dr Freeman. Dr Freeman is my doctor and she is just amazing. So smart and compassionate.  I am stage 4 and have been in treatment since Dec 2016. Immunotherapy is amazing and seems to be helping.  I'm sure your onc is well versed but get a specialist. They spend 24/7 on melanoma.  

Lots of thoughts your way for you and your dad.

Linda

If it helps at all, you are currently in the most terrifying time at this point. Once a treatment plan is mapped out, and you've had a chance to hear plans B, C, and maybe even D, things will calm somewhat. Yes, your dad would now be classified stage IV… but don't start mapping out end of life just yet. More than a few of us here have been around as stage IV (with brain metastasis) for quite some time. There are also a number of folks here in California. Some being treated in the Bay area, and others of us down in Los Angeles… a couple in San Diego area too (I think).

At this stage, a melanoma specialist is best for medical oncology. He'll also want a top notch radiation oncologist… and possibly even a neuro-oncologist. If you're in So Cal, look at USC and/or Angeles Clinic… there are a number of good specialists. I'm a bit partial to my team at USC… but then… when a batch of folks have literally saved your life… you'll tend to sway their way.  : )  If you're in northern Cali, both UCSF and Stanford have good programs… although someone up that direction could probably give you more specific advice/opinion.

My initial diagnosis was 1a on my shoulder in June 2007. By April 2013, it was in my brain and lungs, with suspicious areas on my liver as well. It's not been a short road, but I'm staring into the face of 4 years since stage IV, and things are going really really well. It's possible to live like a "normal" (whatever the definition of that may be) person. It's very possible.

Best wishes to your dad and your family! The hardest part is making your way through this initial shock and finding the "right" doctors for him. 2nd and sometimes even 3rd opinions are a good idea. There are lots of talented docs out there… but some may be a better personality fit than others. 

Hi – I've been down a similar road with my husband.  He was initially diagnosed Steve IV in 2012, has had 2 craniotomies along with multiple other treatments and is still going strong.  I think his brain is sharper than mine any day of the week!  Your dad has several treatment options and I'm sure his care team will  address your concerns. After his 2nd craniotomy, my husband also received gamma knife to the area where it was removed – I'd ask about that as well as immunotherapy.  Take care.

Ann

so sorry to hear of your Dad's diagnosis.  My Dad was diagnosed Stage 4 in August of last year (2016).  All in all he ended up with 15 brain mets, 1 in the lung, 20+ in the spleen, 1 upper thigh.  No primary found.  To make a long story short, he had Gamma knife, a craniotomy, lung met removed and 5 doses of Opdivo and just finished his third dose of IPI (Yervoy).  They told him before treatment that he had 4-6 months to live, but guess what? He is still here and doing quite well.  Don't give up hope.  Research on this forum, find a great doc that specializes in Melanoma, (I can't stress this enough, we started with a regular oncologist).  Find a great brain surgeon etc.  Dad is now being treated by Dr. Freeman at the Angeles Clinic, he started out at Hoag in Orange County (they don't specialize in Mel).  Please get 2nd and 3rd opinion if need be and most of all keep fighting!!!

Jen