Thank you Ed and Celeste. The information that you provided is really helpful in understanding the treatment.
In case of my husband it's actually not a trial but necessity/ attempt to reduce the burden of multiple brain lesions in a quickest way
From my several posts you might see the story.
initial diagnosis – 2012 – a small cutaneous lesion on the upper back – stage 2a – wide resection followed by the sentinel lymph node test . 6 nodes removed and all were clear
No problems for 4 years and in September of last year started having headaches
October 4 2016 – seizure and diagnoses of stage 4 with multiple brain lesions and lung lesions.
Craniotomy performed to remove the largest brain lesion . The biopsy and mutation analysis showed BRAF mutation
On October 26 – first Gamma Knife procedure to treat remaining 10 lesions
At the same time started on BRAF combo therapy.
December 20 – MRI results showed substantial reduction in size of all 10 mets. No new growth.
January 16 – CT scan showed reduction in size of the lungs lesions and no new growth in any other parts of the body.
The problem was that the BRAF combo was causing very high fever and terrible chills very often. Low dosage steroids did not help and the breaks without any medications became longer and longer.
So basically we didn't even reached the resistance point
At that time the oncologist decided to stop the combo and start with Keytruda.
The First infusion happened on February 16.
On February 10 we had another MRI that showed a couple new leasions and slight increase in size of several ones treated in November. A second Gamma Knife procedure was scheduled.
The procedure occurred on March 8 . The high precision MRI revealed substantial increase in size of half of the lesions previously treated and 20 new lesions – sizes 2-8 mm. All new leasions were treated.
The assumption is that this situation occurred because there was an interruption in treatment between the combo and Keytruda and that Keytruda takes at lease 3-4 infusions to see the results. The increase in size can also be attributed to the Keytruda effect of causing inflammation before shrinking the tumors.
All these are guesses of course.
The radiologist was talking about WBRT in case progression in brain continues. The oncologist and us are strongly against this treatment and will be pursuing with Gamma Knife and Keytruda as long as possible.
the second Keytruda infusion happened last week – March 16.
As a side effect of the Gamma Knife and infusion my husband is experiencing edema now and is taking low dosage of steroids . We are trying to keep it low in order not to interfere with the immunoassay.
At the same time our oncologist wants to add the dabrafenib – taffinlar again starting tomorrow in order to help reduce the tumor burden in the brain.
I already read multiple posts on this forum and found some people with similar stories- some good, some bad.
so we keep our hopes and will continue the fight
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