Scared - Keytruda, NRAS and progression after first dose

Posted By
ahg747
6/19/2017 8:16am
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Replies: 4

Hello everyone, this is an amazing forum and I have learned so much in a very short time from all the postings here, especially the articles and links that Celeste has posted.

Just over 5 weeks ago I noticed a strange small lump on my collarbone, which was eventually removed and found to be metastatic melanoma. The biopsy also confirmed that I was BRAF wild type (negative) but positive for the NRAS Q61R mutation.

By the time I had a PET scan I could clearly feel 3 more small lumps under my skin which were confirmed by the scan to be subcutaneous metastases. The scan also showed showed nodes in my armpit and abdomen, and possible metastases in one of my femur bones and one of my adrenal glands. The worst news was 2 days later when a MRI showed multiple small brain metastases (largest 9mm) with haemorrhage and surrounding odema.

That was just over 2 weeks ago. Here in New Zealand we have a public health system and Keytruda is one of the drugs that has recently been funded, so I was urgently given a first 2mg/kg dose of pembrolizumab.

Almost immediately I had a response from the 21mm tumor in my armpit - it swelled, became sore and then rapidly shrank over the course of a few days. I also had similar responses over the next week from 2 areas in my abdomen and one of the lumps under my skin (subcutaneous metastases).

That would seem like a positive start to the pembrolizumab except that since my first dose I have noticed at least 10 new small lumps appear under my skin that look and feel exactly the same as my original subcutaneous metastases. And the two original lumps that have not been affected by the Keytruda seem to have increased in size. So I'm feeling worried that I'm only going to achieve a partial response at best to the Keytruda.

I'm also very worried about my brain mets. I have been asking (and will continue to investigate) whether I can access targeted radiation therapy for them as I am worried that they may be growing rapidly. I don't have any symptoms from them yet but given the rapid pace of my disease in other areas of my body I am worried that I they may cause me far more problems in the short/medium term than my other tumors.

Unfortunately the Ipi/Nivo combo is not funded in New Zealand although it might be possible to self fund the ipilimumab and add it to my Keytruda - this is something that I am going to ask my oncologist.

My next dose of Keytruda is due in a week's time.

If anyone has any thoughts or suggestions I would be very grateful to hear them. I think NRAS melanoma has a reputation for rapid progression and I am hope that given time the Keytruda might work - but all the new lumps are very worrying.

My best wishes to everyone involved in the fight against this terrible disease - Ashley

Hi, sorry to hear of your diagnosis.  I'm a fellow kiwi living in Australia and have battled this disease for 17 years.  I wish you all the best in your fight.  This board certainly got me through some tough times but armed me with so much knowledge.  I hope that you get the answers you seek.

Hi Ahg747, look up check mate 204 trial of Ipi/Nivo on melanoma brain mets in Australia being run by Dr. Georgina Long. Here is a link to this years ASCO where  she presented some of her trial data. Best Wishes!!!Ed   I have a link to ASCO but it might ask you to join, don't worry they do spam you afterwards. http://am.asco.org/combined-checkpoint-inhibition-ushers-new-era-cns-the...

Dear Ashley,

so sorry you have to deal with this horrible disease, but you have come to the right place for information and support.

Keytruda (and other drugs) are known to cause swelling of the tumors at first (pseudo progression), so don´t immediately assume Keytruda is not working, because it probably is... It takes quite some time (at least a couple of doses) to really see the body respond..... One dose is just to soon to expect anything major, but the good thing is that you have seen a response already.... The other stuff is probably swelling of the mets that were not really palpable before treatment....

As for the brain, the best option is radiation + immuno (sinergy) so you should definitely do that... even though Keytruda does cross the blood brain barrier, it works best with radiation.... We have seen many of our dear friends here deal successfully with brain mets, so you should do that as soon as possible.

All best to you....

Love ,

Patrisa

Thanks everyone for your advice and kind words - much appreciated. I'll keep in touch and let you know how I'm going.

Best wishes - Ashley