Thursday's the day!!!

Posted By
6/24/2014 11:25pm
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Replies: 21

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 


Don't Stop Believing

Aussielyn - (6/25/2014 - 1:50am)

Warm good luck wishes & prayers all the way from Australia for you Karen ! This treatment will be the one that works for you ! All the best , Lyn 

Heal with every inhalation and let go of cancer with every exhalation.

G-Samsa - (6/25/2014 - 5:48am)

Karen-- you have more grit than anyone ....and have sure earned the NY in your nom de Guerre .  Hope to see you on the 4th flr one day when stars and treatments align.  I'm thinking anti-PD-1 will do it for you!  Thursday can't come soon enough. Best wishes.

rosa1 - (6/25/2014 - 7:10am)

Karen- wish you all the best. Prayers coming your way for great success. Think positive! 

All things are possible through God!

Bubbles - (6/25/2014 - 7:45am)

That's great, Karen! I wish you wonderful results!  I am not certain about what exactly you mean with your question. But the studies that noted patients with prior ipi (ipi refractory) responded somewhat less well to anti-PD1 compared those patients to patients who had never taken ipi (ipi naive) at all. However, I am still hopeful for you!!  Yours, Celeste

tschmith - (6/25/2014 - 8:56am)

Karen,  Praying that this is the treatment that works!  I'm in the same boat as you...I recently participated in a clinical trial at NIH called Mage TCR.  It failed, as did other treatments, and now I'm waiting to see if I can also get into Merck's EAP at Georgetown with Dr. Atkins.  Met with Dr. Atkins yesterday and signed the paperwork.  Just have to have blood work.  Hopefully my blood work will be okay.  Just finished the MAGE TCR in April. I was anemic but am no longer so..... we'll see within the next week.  Dr. Atkins said it takes two days to get the drug and wants to start my infusions next week.  They're very interested in seeing how MK3475 (might have the numbers out of order) will work with the cells I received during the MAGE TCR trial at NIH.   I understand what you're saying about Ipi.  If Ipi was a success then why would someone get MK 3475?  I don't know all the trials...was there one where they were a combo?  Oh well, I'm excited and anxious.  My best to you!!!  Looking forward to hearing good news and mild side effects.



ed williams - (6/25/2014 - 9:59am)

My thoughts are with you, and hope things work out. You seem to have some questions about PD-1 after having Ipi. At the recent ASCO meetings in Chicago Dr. Jedd Wolchok , Dr.Mario Sznol and Dr. Antoni Ribas all gave presentations about findings from various clinical trials on Immunotherapies. If you go to "Youtube" and search under the Doctors names plus ASCO 2014 plus Melanoma you should find lots of expert information on the topic. One other great video on the subject is from the Milken Institute with the title " The Silver Bullet Against Cancer" , several experts in Immunotherapy give various view points of current research in Melanoma. I hope this was helpfull.....  Ed Williams

BrianP - (6/26/2014 - 1:45pm)

Hey Terrie,

So sorry to hear the Mage TCR hasn't worked out like you hoped.  I think you're right to hope you'll get some benefit down the road with it in conjunction with your next treatment.  There have been many different trials combining Ipi and Nivo (BMS's version of mk-3475).  The trials have been tremendously successful.  They have been done in different sequences and dosages but the most successful seem to be the trials in which Ipi and Nivo where given concurrently (albeit there have been a high percentage of grade 3 and 4 side effects).  Karen mentioned that folks that have failed Ipi haven't been as successful on MK-3475 as perhaps patients that are Ipi Naive.  I haven't seen that but it may be true.  If it is true I don't think that is a reflection of what's occured cellularly or biologically in the patient from the treatments but maybe a reflection that the patients who have already failed Ipi and moved on to anti PD1 probably have a particularly "tricky" mutation of melanoma.  I've been in a Ipi and Nivo seqential trial and have been doing well as of late.  During the time I was on Ipi I had disease progression (along with severe side effects) but since going back on Nivo the disease is beginning to shrink again.  I think I was a non-responder to Ipi but I'll never know for sure.  Hope the process is quick to get you into the EAP program.  Good luck.


Mat - (6/25/2014 - 10:17am)

Karen, wishing you success with PD-1.  You've been through a lot.

King - (6/25/2014 - 10:27am)



Wishing you all the luck in the world.  Fingers and toes crossed.  You are THE warrior.  Go, go, go!


Stay Strong


Stage IV  7/05  Liver mets

Anonymous - (6/25/2014 - 10:36am)

Hi Karen,

I have been away traveling & trying to catch up on all the warriors.

I am happy to see you finally are going to get Mk3475.

As you start this drug, how many lesions do you have & where are they.

You are such a fighter and you are awesome.

Will pray for a successful outcome for you.


Brendan - (6/25/2014 - 12:58pm)

Good luck, Karen!!!


kylez - (6/25/2014 - 9:17pm)

I'm pulling for you Karen!

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

Hstevens0072 - (6/25/2014 - 9:37pm)

Hi Karen,

i did not respond to Ipi and started mk3475 a year ago.  The results have been amazing - largest tumor is 85% smaller and most others are gone! no new disease and only one recent pesky side effect.

Good Luck!


"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

arthurjedi007 - (6/26/2014 - 12:45pm)

I'm right there with you Karen except at Mayo instead of Sloan. One thing I keep in mind is something someone here said. No matter how many treatments fail you only need to find the one that works for you. Keep yourself as strong as you can.

I get my 3rd dose at Mayo next week. I believe this might finally be the one for me it'll just take it some time to build up and chip away at enough mel cells faster than they grow. So far my 3 visible tumors seem to have stayed the same size so I take that as a great sign. Who knows about the inside but I feel fairly well so something must be working right.

Best of luck to you.

BrianP - (6/26/2014 - 1:53pm)

Thinking of you today Karen.  Good luck!

Swanee - (6/27/2014 - 12:02pm)

Wishing you good luck with this treatment Karen, sending positive thoughts and prayers your way that this is the one and you are a complete responder!  You are a strong and courageous mel fighter and an inspiration on this site.  I wish you a smooth treatment with great results, you go girl!!


kylez - (6/29/2014 - 4:39pm)

Did you get it? Knock on wood, how dd it go? How are  you doing?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

NYKaren - (6/29/2014 - 5:49pm)

Yes, I got it. I have never gotten through Sloan so fast in my life!  Arthur, I remember your post all day. 

So funny, the nurse laughed when I took a picture of the bag  on the pole. She said no one had ever done that before, but a few of her patients had that day. 

Only side effect is fatigue, which is pretty much to be expected.  

Fingers crossed, and I just can't thank all of you for your help and support.

love, karen

Don't Stop Believing

kylez - (7/4/2014 - 2:14pm)

I have pics from 2011 of all 4 Ipi bags I got, and a few from my current trial as well.

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial

GAngel - (6/30/2014 - 6:41am)

Praying that this treatment will work for have been through a lot....this WILL work....believe it will with every fiber of your being....the mind is a powerful thing we have and should use to fight against disease.  If you're a Christian, pray for divine intervention, the Good Lord gives us hope and is able to give the gift of spiritual healing! Blessings and love to you!


"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

kylez - (9/8/2014 - 1:02pm)

How's it going Karen?

2 primaries; lung/brain mets in past; paratracheal lymph node currently; participating in  Opdivo/Lirilumab trial