Encouraging and/or Discouraging?

Being 30 myself and my mom also living many states away, I feel for you and your daughter. It is excellent news that taf/mek has worked for her. Unfortunately targeted treatment does not like to continue to work for a long time. Most who have gone on it get great response, but within about 6 months or so the drugs stop working.. and the cancer gets smart again. Which is why her doc brings up that she'll go on immunotherapy when it stops working. Ipi/Nivo or Keytruda are the likely immunotherapy options she would start. 

The answer to will she ever be able to be off meds is… YES. But, the melanoma needs it's butt kicked to the curb before that can happen.. and it can take a while. I've been on immunotherapy (first started as adjuvant, then changed to active disease treatment after recurrence) for over a year now.. and if all continues well for me *knock on wood* I can be done in a year. Others have been on treatment for many years, even after  becoming NED. 

Not sure if there are any melanoma specialists near her, but traveling to somewhere like MD Anderson in Houston for a specialist is something many people have done. Lots of patients don't live close to a research hospital with excellent mel specialists.. wish everyone was that lucky! But, they do have specialists outside of their home state that are part of their team and can give the local oncologist direction as far as the patient's care and treatment plan. It helps to have one as part of the team so that if the patient has a melanoma specific question that their general oncologist can't answer, then they have that contact of a specialist to talk with to know they're getting all the info they need.

All the best,

Hi Cindy – I know this must be very difficult for a parent to go through… I am also in my early 30s and currently on the Taf/Mek combo.  Taf/Mek is working for me too, and my #1 concern is new lesions/growth and switching to immunotherapy "at the right time."  In other words, I want to switch to immunotherapy before the meds stop working. (most likely Keytruda).. you could certainly speak to the current doctor about this (i.e., why wait for another PET CT scan?), but a specialist will be better equipped to address and also manage side effects of immunotherapy.  

It was certainly daunting for me hear about how long treatment lasts… but overtime, you come to accept it and thank goodness there are multiple options.

Best wishes to you and your daughter.

Ugh… I'm so sorry. This must be terrifying for a parent. They're always our 'babies'. The short answers to some of your questions:

1. My hope is that the two ‘new’ tumors could have developed in the five weeks between the July scan and when she began taf/mek in September…is that possible? —– This is possible, although not necessarily a better or worse scenario than having them develop after BRAF treatment had begun. Development prior to treatment could mean it's more aggressive, although, it could also be mean that the BRAF drugs are still effective. Development post treatment could mean that the metastasis have mutated around the BRAF drugs, and it is indeed time to move on to immunotherapy options. 

2. The dr said to stay on taf/mek til she stops responding and then move on to immunotherapy…will she ever be able to be off meds? — She will be able to get off of immunotherapy meds. Ipi (yervoy) is given via infusion (90 min) once every three weeks, for four doses (assuming a patient does not have grade 3 or 4 side effects). However, it is statistically less effective than Keytruda, which is given via infusion (30 min) every 3 weeks… but can last for a year… two… sometimes more. The Ipi/Opdivo combo is the strongest statistically, but also carries higher odds of serious side effects. These are all things the oncologists can discuss with her/you when the time for a change comes.

3. Dr also said that she’d know she isn’t responding to taf/mek when she starts to feel lumps returning…does this mean that the cancer is not really going away? —- Personally, I'm not sure I'd wait until I started feeling lumps. But that is purely personal opinion. Statistically speaking, most patient tumors will mutate around BRAF inhibitor medications within a matter of months to a year. However, there are those folks who can last a very very long time on them. Once they are no longer effectively keeping the melanoma at bay, there will be a change to Keytruda, Ipi, or Ipi/Opdivo immunotherapies. If it is suspected that the BRAF drugs may have stopped working… why not move along sooner?

4. Is surgery and/or radiation a possibility for the four tumors that are left? She sees her radiation oncologist in April. — Depending on their size and location… yes… and yes. Again, personal opinion comes into play here. Some are of the mind "When in doubt, cut it out." Others would prefer to see how the lesions react to medications, prior to being more aggressive with surgery or radiation. 

5. I’ve read that she really needs to be seeing a melanoma specialist. She will be looking into whether her insurance covers a second opinion. Does anyone have any insight into the process? Could anyone recommend a specialist? We know she’ll need to travel. She is located in Foley, Alabama, near the Gulf Coast and halfway between Mobile and Pensacola. — Based upon her location, it's likely that her best odds of finding a melanoma specialist are in Atlanta. You can google for NCI Designated Cancer Centers to find the one nearest to her. They are most certainly the best option for overall team coordinated care, with surgeons, radiation oncologists, medical oncologists, etc. all "under the same roof" and in constant communication with one another. I personally travel 180 miles for treatment at USC in Los Angeles. We've become all too familiar with the freeways between here and there, but I am 100% confident that these doctors are the reason I am still alive. If the travel option is out of the realm of possibility, she could always contact the specialist at a designated center, and have her care coordinated with her docs locally. It's not quite as ideal, but an option which would bring a new level of expertise to the table for her. Perhaps trips to see the specialist every other month or every 3, with infusions tackled locally? If at all possible though… personally… the trips once every 3 weeks has been toooootally worth it. 

Best wishes to your family and all that you're dealing with in this "yuck" of melanoma.

Hi,

Time to switch between target therapies and jmmunotherapies ius a hot topic.

We seem to betold the cancer gets smart and out wits the targeted drugs.. Longer version is that tumours DNA mutates and new ones are not controlled and because they don't have the relevant mutation. Immunotherapy sole agent takes longer on average to respond although combo seem to be quicker.  So. Do you start immunotherapy whilst tumour burden at lowest point..and does co tinuing targeted drugs for longer help select newer mutations for your daughter to fight.

Got to be worth a good second opinion. Think Celeste s blog has good info on everything so a search on switching to immunotherapy is likely to give good links. 

Yes tumours can be new in that time scale  scarily… New ones do have treatment options.. And if successful and your daughter gets to NED then you can stop drugs… Only more research needed to work out when best to stop.. 

Lots of questions but thankfully more answers now than in previous times. Best of luck

Deb