New to Stage IV---Possible treatment options?

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5/12/2014 11:52pm
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May 2012, age 36, original mole removed from left forearm by GP incompletely excised at both the lateral and deep margins. Malignant Melanoma. Breslow depth at least 3mm, Clarks level at least IV, mitotic rate 4/mm2, Ulcerated. Referred to Seattle Cancer Care Alliance surgeon. WLE performed and SNB performed with pathology report indicating clear margins and negative for Melanoma on both nodes. Diagnosed at least T3bN0M0.

March 2014 discovered growing lump above original site at inside of elbow. GP removed lump thinking fatty tissue. Pathology returns as Malignant Melanoma. Back to SCCA surgeon. Full body PET/CT and brain MRI ordered. CT indicated 14 suspected melanoma spots in lungs (largest at 8mm with many 1-2mm) as well as 2 spots in liver that were undetermined. PET did not light up on these, Dr. indicated they wouldn't due to size. Brain clear. Due to the 8mm size Dr. referred to Thoracic Surgeon for lung biopsy which was performed May 7. VATS wedge resection of left lower lobe. Pathology positive for Malignant Melanoma 5mm in size. Referred to SCCA medical oncologist. Appt. next week.

 

What typical treatments at this point (as we keep in mind each person is unique)

 

Currently having nausea, lack of energy. Hot and cold chills.

Could the cancer at this stage cause these symptoms or are they more likely a result of the lung surgery and recovery?

Posted by Mr. Adriana

Adriana

Hi Adriana,

sorry for the development you are describing above. Shows again how melanoma is absolutely unpredictable.

As concerns treatment options depending on wether you are BRAF positive or not the first choice might be the BRAF / MEK Combo or IPI. Until the FDA approves Anti-PD1 this is no option (outside a trial) as you have to have progressed on the ones I mention above to be eligible for the Merck early access program.

Of course you always have th eoption to find a trial.

As concerns your symptoms: Add night sweat to your list and you have exactly what I had just before I was diagnosed stage IV in February of this year! As far as I understand these come mainly from your immune system that is trying to fight against the enemy. A fight that in most cases cannot be won without help!

When I started taking the BRAF / MEK drugs it took no more than 14 days for the symptoms to disappear. I was really amazed how my energy came back. Now I can do everything I could do before though I know that this may well be only for a limited time.

Adrianna-- you need to be under the care of an expert melanoma physician who is up on the latest research and is aware of the trials that are available. You are at a crossroad where decisions on sequencing and treatment are nuanced and you need a plan that doesn't close the door to other options.  Certainly your Braf status is an important factor, but the decision on whether to take advantage of the genetic anomaly now or after an immunotherapy may have more to do with the rate of progression ( some feel that Ipi, Nivo, or both is more effective if introduced initially --though the immuno therapies are slower to take effect)  For most, the Braf approach is not durable-- though very effective and can keep the Mel in check as other parts of the plan are put in place.  I am Braf positive and have had the luxury of being able to keep the genetic approach as a Plan B or C.....while the immunotherapy does it's thing ....but these decisions are best made with a true expert.

 

Thanks to G-Samsa for adding for course the most important aspect of creating a treatment plan that is tailored to fit your needs! This is only possible with a specialist you trust. Answers you get in the forum will most likely be biased by one's own experiences (I can at least speak for mine)! :)

Adriana,

So sorry you have joined our ranks.  I know you are at a very overwhelming point with trying to get a grip on what is your best path right now.  I can't emphasize enough how important it is to find a melanoma specialist now.  Even the best oncologist simply cannot keep up with the pace at which melanoma treatments are evolving.  I really don't know of any melanoma specialist in your area but I'm sure there are some.  You might want to start a thread titled something along the lines of "Melanoma Specialist recommendation in the Seatle area?"

Ipi is definitely an option for you now and you don't need to be in any trial to receive it.  I can't recall the exact response rate for Ipi off the top of my head but I think it's like 40% response rate and maybe 15 - 20% complete response rate.  Don't quote me on that.  The Anti-PD1 treatments work in a similar fashion to Ipi but generally have a better response rate and less side effects.  At this time you can only get PD1 drugs through trial or through the Expanded Access Program (AEP).  However to get them through EAP you have to have failed Ipi or a Braf drug if you are Braf positive.  I think the general consensus is that at least one of the PD1 drugs will be availble to all sometime toward the end of the year or early next year.

Finding an effective trial is a very research intensive project unless you just happen to be in the right place at the right time.  Not sure what your travel capability is but a lot of the trials require travel to the site every 2 to 3 weeks for sometimes up to 2 years.  There are some great melanoma sites on the west coast in SF and So Cal.  Another site that doesn't get as much attention but is doing some pretty good work is in Portland with Dr. Curti. 

I'll stop for now because I don't want to overwhelm you but please don't hesitate to post questions if you have them.  Hang in there!

Brian

Very good, helpful and greatly appreciated information being provided here, please continue.

Not been BRAF tested yet, does that happen from blood tests previously taken or is a new test to be expected? What is involved with that?

Indeed the night sweats have been there for a while, so quite the same as you tcell.

Adriana's appointment next week is with Dr. Kim Margolin. We haven't yet formally met her but we do know of her and she spoke a bit at the MRF sponsored symposium that we attended in Seattle at SCCA last month. Other speakers included melanoma survivor Heather Devlin http://www.melanoma.org/find-support/patient-community/patient-stories/h... , her surgeon Dr. David Byrd (and event leader) along with MRF Executive Director Tim Turnham. The day was very informative and supportive even if it was a bit over our heads at times. We highly recommend going to one if you have the opportunity. In response to an attendees discussion about some patients having to research clinical trials and treatments on their own, Dr. Margolin's response was that  the physician should be putting in overtime to research appropriate treatments even if the physician is not personally involved in a given trial and the patient should expect that. We gathered from this exchange that not everyone's heathcare providers provide this, what we considered, esential care

Would you consider Dr. Margolin to be an expert in melanoma?

I have included a few links and information about her if you wouldn't mind having a look.

Clinical Trials

Dr. Margolin is the SCCA lead investigator for the following clinical trials:
•IL-2 "SELECT" for Advanced Melanoma
•MK-3475 Versus Chemotherapy for Advanced Melanoma (P08719/MK-3475-002)
•Vemurafenib w/wo Bevacizumab for Stage IV BRAFV600 Mutant Melanoma (7719)
•Dabrafenib + Trametinib for Melanoma Post Surgery (20130566)
 
 
 
 

 

Our impression is that she is quite advanced in the field and feel lucky to be meeting with her.

 

Your opinions are appreciated.

 

Anxiously awaiting the next Dr. Visit

 

Rob--- AKA Mr. Adriana, her significant other

(pictured is Adriana on the right and her twin on the left)

Adriana

Rob,

the background for the BRAF mutation or mutations in general is the following (this is what I have understood as an amateur):

Melanoma tumor tissue has shown to have mutations on certain genes - though not in every patient - but in a number of patients. This made them good targets for certain medications that are not supposed to harm healthy tissue but exclusively attack tumor cells. Healthy tissue does not have this mutation.

Among those with names such as C-Kit or NRAS, BRAF is the one that is most widely discussed and most important to know about. This is because there are meds that have already been approved and can thus be presecribed that target the BRAF gene. They are called Vemurafenib (brand name Zelboraf) and Dabrafenib (brand name Tafinlar). The effect of Tafinlar can even be prolonged by taking another drug called Mekinist that targets a different gene that is related to BRAF.

However, depending on what you read between 50% and 70% of patients are BRAF+ and thus have those meds that i mention above as another treatment option. If Adriana is BRAF-, this is not the end of the world as there are other options out there as Brian and I have mentioned above.

I do not think that this can be analyzed in the blood. For me they had to do a biopsy and get some tumor tissue to do the genetic analysis! It can take a few days until you receive the pathology report!

I am sure your specialist will be able to give you a better explanation of all of that and be able to tell you what needs to be done!

The genetic testing is done on the tissue they obtain from the biopsy.  The results normally follow the pathology report by a week or so--sometimes longer.  I would check to make sure this test has been ordered... or if you're uncomfortable with terminology call the oncologist with whom you have the appointment -- and express your concern that the biopsy report have a genetic profile of the tumor -- particularly with respect to Braf.  She should know what's going on, understand the significance, and make sure the appropriate test is done.   From her bio, it looks like her credentials are great,  This initial query should give you an idea about how she interacts with patients --especially one  who wants to be an involved party in treatment.

Rob/Adriana,

I didn't click on the links but I would definitely say you have an expert in your corner.  I love her stance that doctors should be working overtime if necessary to help their patients find clinical trials.  In my experience that is definitely not the norm.  I would have loved to have someone like that!

Brian

 

I'm sorry that you are going through this and hope you find a excellent doctor and team.  I recommend that every gets a second and third opinion.  When we started this journey we felt pretty confident with the doctor we had been referred to (melanoma specialist) and were only seeking a second and then third opinion to determine which trial we could get her into. Both were PD1 trials. Getting other opinions saved us and my Mother a lot of grief.  She would have started a PD1 trial with brain mets and been kicked out of the trial on the first MRI of the brain during the trial and the brain mets would have been left untreated for at least 3 to 4 months, which would have been devastating.

What we discovered along the way was that the first radiologist missed 3 brain mets, which even I could see on the computer monitor when the 3rd doctor actually looked at the MRI of her brain.  My take away was to ensure that we would get second opinions on just about everything, even if you are confident with your doctor.  Mistakes can always be made as you've discovered.

Find two or three melanoma specialists and see them ASAP.  They understand this disease in greater detail than a typical oncologist does and you need to speak to more than one to understand their thought process and your various options. Do your own research too and see who you feel confident with.  - Based on what you are saying, it sounds like you need access and information to physicians that are much more familiar with melanoma.  Especially if they have not discussed if you should or have been tested for the BRAF gene by now.  If you have others in your immediate family who have had melanoma it is especially critical for them to know and test for it.

My Mom is on Yervoy and has done incredibly well (except for the colitis) and had 3 infusions. - She won't have the 4th. - All the of tumors on her head and neck are gone and we are waiting to find out the results of her trunk are.  We do know from CT scans that some tumors are smaller and some were larger in March.  (The scans they compared them to were from November of last year and she did not have treatment for one month because we were waiting for test results for the trials and the brain mets went from 3 to 9 during that time period.)

Of course she has not done well with regards to the brain mets, but our understanding is that the brain mets seem to be the last affected when using Yervoy/ipi. Our oncologist has also suggested using the BRAF/MEK combo and PD1s if the upcoming MRI of the brain (June 3rd) shows any brain mets. We opted for Yervoy 1st followed by, BRAF (BRAF/MEK was not available then) or the PD1 drugs.  Starting there gave us options and the BRAF pills as a last resort.     

I don't know where you are located, but I do recommend USC in Los Angeles (Dr. Wong and Dr. Chang) and Dr. Bosaberg (he found the brain mets the radiologist missed).  They are all at the top of their fields, very caring and all do clinical research, which make me more confident that they are up on the newest procedures, medications...

Good luck.

HI Adriana,

SCCA includes Fred Hutchinson as well as UW as I understand it. Fred Hutchinson is an NCI-designated world class cancer center. So you should get to see the kind of melanoma specialist there next week that people are recommending you get to. Is the medical oncologist one of these listed folks?  http://www.seattlecca.org/diseases/melanoma-doctors.cfm.

I don't know if your symptoms could be melanoma-related or not. Are you still on pain meds for the VATS? If you already had seen your SCCA oncologist, I'd be suggesting you report it to them. 

Second opinions can be very useful, once you have your relationship established with your SCCA melanoma speciliast. If you do find yourself wanting a second opinion, Portland Providence Cancer Center is is one place to consider, they have very good melanoma specialists as well as being not to far away.

Good luck with your appointment next week, let us know how it goes.

- Kyle

 

Rob, Adriana, -- I should have scrolled back up to your post Rob about seeing Dr. Margolin next week. While I can only speak from direct experience with UCSF and Portland Providence, SCCA should also be an excellent place to be seen.