My name is Mike & im new here

Posted By
Anonymous
7/15/2017 11:28pm
Activity
Replies: 8

Hello everyone, thanks for having me, my name is Mike & i now have stage 4 Melanoma up from 3B a 6months ago, i was first diagnosed in 2008 and have had 6 surgeries to date {my last one on June 29th 2017}  and the tumors seem to love my left leg & groin {lympnode area}. Im sad to report that my last set of CT & PET scans revealed a medium sized suspecious "possible"  tumor on my lower lobe of right lung & a smaller one on left lung. Hopefully next week ill drive out to Kaiser in Fontana California for a second opinion, i went there after my first surgery in 2008 but they said just keep up the scans and surgeries as needed. Now, 2017 its came back 5 times with a bonus in each lung. Im not happy about surgery, my Thorax Dr. explained its not a simple one, braeking of ribs, cutting muscles, collapsing lung, poking/proding for the tumor, drain bag etc. Im gunna push for treatment in way of Chemo or something, its obvious this Melanoma i have is refusing to leave my body. This last tumor they took out was apparently "Not" related in DNA to all the prior ones, so, its a new "strain" of sorts...anyways, another Melanoma Brother is on board here at MRF thanks for having me & ill keep ya all posted on what their plans are for me, Thanks...Mike

Hey Mike, so sorry you've joined our club here, but hopefully we can help support you and answer any questions that you may have. First thing is first... and you'll here this from others too: you need a Melanoma Specialist. This is an oncologist who only deals with melanoma patients. Rarely found in the Kaiser system, but if you can get an appointment at UCLA or City of Hope (others on here familiar with LA based mel specialists can chime in and let you know what docs are the best) then you can get a specialist on your team. Kaiser should pay for an outside opinion, but you may have to get real LOUD with them to get it. It would be best to get the opinion of a specialist before moving forward with any major tests or surgeries. Regular oncologists are not as familiar with melanoma and all the new and changing treatments going on and may make the wrong decisions when it comes to the right treatment path.

The top treatments are immunotherapy treatments, not traditional chemo, Ipi/Nivo (Yervoy/Opdivo) and Keytruda being the top options. You should be tested for BRAF and other genetic mutations to see if you would be able to do targeted treatment. 

All the best,

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

Hi Mike, I second what jennunicorn said - a melanoma specialist is a must. The Angeles Clinic in LA is awesome.  My Doc is Dr. Freeman- she is fantastic and is up to the minute on everything melanoma.  Keep up the good fight.  

 

Linda

Jubes - (7/16/2017 - 6:46am)

Hi mike. 

I agree. A melanoma specialist is a must. Also look at vats surgery if you need surgery. I had a lower lobe resection and originally they were talking about breaking ribs etc but the vats surgeon was amazing and I was out of hospital in three days 

Jubes - (7/16/2017 - 6:46am)

Hi mike. 

I agree. A melanoma specialist is a must. Also look at vats surgery if you need surgery. I had a lower lobe resection and originally they were talking about breaking ribs etc but the vats surgeon was amazing and I was out of hospital in three days 

Bubbles - (7/16/2017 - 10:37am)

Sorry, Mike.  You can read my response to the post above yours for the low down on basic Stage IV melanoma treatment if you are interested.  As the others mentioned, a melanoma specialist is essential!! Like Jubes, I too had to have surgery to remove a lung met.  I had the upper right lobe of my lung removed in 2010 followed by nivo (Opdivo) immunotherapy.  It wasn't fun, but I am here to tell the tale and you can be, too!!! I wish you well.  celeste

Hi Mike. So sorry you are dealing with this. It's no fun and seems to never go away :(

could you tell us more about your initial melanoma? Was it a mole? How has it resurfaced? New moles or lumps under the skin? Near your initial site?  Just curious and want to compare cases. 

Thanks and best wishes. Keep us updated. 

Mandy

Hi Mike.... when you say "drive out to Kaiser in Fontana" are you closer to the LA side, more Palm Desert, or more up toward Victorville? I have heard Kaiser likes to put up quite the paperwork battle regarding seeing docs outside of their system, however... as already mentioned above, you would be better served by screaming LOUDLY to see a melanoma specialist. Particularly given the number of good teams in the LA area. I'm on the central coast (north of Santa Barbara), but drive 180 miles to USC for treatment. If not for the team there (radiation oncology, medical oncology, dermatology, thoracic surgery, neurosurgery...), I'd most certainly have passed in early 2015. Lung surgery there does not involve splitting ribs unless absolutely necessary. I had the entire lower right lobe removed with only a few small holes for robotic instruments. That said, if your lesions aren't terribly large, it is highly likely that you are still in a position for immunotherapy to effectively wipe them out, avoiding surgery entirely. Dr. James Hu at USC is very good, and I know they have also recently (6 months? A year?) hired an additional melanoma specialist. It is really really tough to beat the specialized team care environment that you will find at a National Cancer Institute designated Comprehensive Cancer Center. If you're in southern Cali... you've got a few options... all of whom, will provide better total package expert care than you will get within Kaiser. 

DZnDef - (7/19/2017 - 5:03pm)

Hi Mike, sorry to have to welcome you here but you couldn't have picked a better spot for info and support.  You've gotten great advice so far.  I'll just add my oncologist's name to the list of SoCal doc's accumulating.  My doc is Steven O'Day with Providence St. John in Santa Monica.  There was someone on this board who's husband was successfully treated for melanoma in Kaiser's Sunset location.  I hope she chimes in.  His doc I believe was the head of oncology and not a melanoma specialist.  But they paid out of pocket to see Dr. Omid Hamid with the Angeles clinic who then consulted on the case with the Kaiser oncologist.  Last I heard, her husband had experienced quite the turnaround.  I hope that is still the case.  I have not heard otherwise.

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