Not What I Was Expecting... (melanoma is back)

Posted By
J.bun
7/17/2017 8:55am
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Replies: 10

The last week has been tough.  After clear scans and what appeared to be a complete response in May, it appeared to be time to switch from BRAF pills (Taf/Mek) to "maintenance" on Keytruda.  The idea being we got the maximum benefit from the pills and the Keytruda would keep things at bay/teach my immune system to fight off any malignant cells in the future.

Like so much of this experience, this has not gone "according to plan."  Last week, I noticed a lump in my groin (same place as Nov 2016). While the thought of pseduo-progression came to mind, I knew it wasn't -  and this was confirmed with fine needle biopsy.

Later today I am having a full body PET CT and brain MRI - hopefully the melanoma hasn't spread beyond my groin.  On Weds. I'll find out the results and hear about next steps for treatment.  I won't be surprised if I go back to Taf/Mek, but know I need a long(er) term treatment plan.

I'm not done fighting - but man, am I scared.  I think of you all, my fellow comrades - as we fight together. 

- J.

Hello J.,

So, so sorry to read this, that you are dealing with "round 2"!! Holding good thoughts for you and the body and brain scans, hope they show nothing more than what you have confirmed now! Curious as to why your doc went for Keytruda first ... just seems that the combo is so prevalent now (ipi/nivo). Regardless, hope whatever your next treatment is that it'll also be the last time you'll have to face this!!! Best wishes!

Barb

Thanks Barb... went for Keytruda for maintenance since it is thought to have fewer side effects (esp as related to pituitary gland) and also better outcomes.  I did have one Ipi/Nivo combo before we found out I was BRAF positive.  Appreciate your response & wishes :)

- J.

Melanoma can be sooo frustrating, so sorry you're dealing with it rearing it's ugly head again. Keeping positive thoughts for you that it's not any further than that lymph node. 

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); Completed a year of infusions and surgery to remove last tumor

Thanks for your note & positive thoughts Jenn! (Sending them right back to you)

- J.

J,

Ugh!! That has to be so frustrating... just as you were moving to the maintenance phase. So sorry! 

Hope the test results bring good new. Stay strong and please keep us posted. 

Thank you! ... I certainly will. It is a relief to have the tests over with, and now I know it won't be too much more waiting until we figure out next steps.  

- J.

Any updates, J? Hope all is okay!! :)

Thanks for the follow-up AZSoCal!  Just posted a new thread...good news is things continue to be localized/regional.  Will be having surgery and then back to Keytruda.  

- J.

Sorry you have to deal with this, J.  I am on Taf/Mek plus Keytruda right now with stellar results.  But we won't know if I am a responder to Keytruda until I stop Taf/Mek.  Yes, I am the reason everyone's premiums are going up.  I am already on half dose of Tafinlar due to fevers and now my oncologist wants me to start cycling two weeks on the combo and one week off.  He thinks this will extend the effective period of the combo.  Ok, I'll take it.  How did your oncologist determine that you had received "maximum benefit" from Taf/Mek?  Did you become resistant?  If not, you might want to try it again to give you some time to consider options.  Also, how many infusions of Keytruda have you had?  I ask this because some people have a late response to it and don't start responding until the sixth to twelfth infusion per my oncologist, Dr. Steven O'Day with providence St. John in Santa Monica California.  In any event, I hope your scans today come back clean and you receive only good news from this point forward.

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

Appreciate your message Maggie.  Is the Taf/Mek + Keytruda a trial? ... I just posted a new thread, but in the near-term I am back on Taf/Mek, then having surgery, then Keytruda again.  

At least for me, we determined "maximum benefit" at the time since my PET CT scan was completely clear after 4 months on the pills - and I wanted to come off before I became resistant.  This is good, since Taf/Mek can continue to be in my 'toolkit' since I know I respond and can provide near-term benefits.

I had 3 infusions of Keytruda, and given the nature of the recurrence - and that apparently different tumors do not respond (has to do with PD1 pathway response), doctors did not advise to simply continue Keytruda for now.

I hope your fevers start coming down!  I was fortunate not to have side effects from the Taf/Mek - but I know that is a real drag.  My wishes are with you that you continue to have stellar results!

- J.