chipgoodhue

Rose had her meeting with Dr. Ribas today….I’d characterize it as direct, and unfortunately not optimistic. He did not see any current clinical options other than BRAF/MEK, and was concerned that with her aggressive melanoma the BRAF/MEK window could be short. He did not feel any of the current trials he was aware of were relevant to her condition. She left deflated and very scared.

We are collectively devastated, and not sure where to turn next.

Chip

Thank you all, very helpful.

A biopsy has been ordered but with all the Covid stuff scheduling quickly is hard. They want the biopsy before putting her back on an interim regimen of BRAF/MEK.

We have been lucky enough to work in a consult for her with Antoni Ribas at UCLA next week. She has to fly down to see him in person but worth the risk given her situation, and he comes well recommended from her oncologist and folks at Fred Hutch.

We remain very hopeful, she feels and look great, but everything seems to take too long given the rapid progression in the liver…..patience is not necessarily a virtue in this case :).

Chip

Thank you Celeste. She has extensive lesions in the liver so don’t know if radiation is in order but will address in our consults with both SCCA and cc next week. She was responsive to a short dose of braf mek, hopeful that if she goes back on it the liver will respond…need to do more research on that. Needless to say we are disappointed and scared…the TIL trial was brutal and we were not prepared for bad news.

Best.

Chip

Thanks Mark. The IL-2 bit seems like it is all its cracked up to be, very glad to hear that you got through it OK. ICU for that part here.

You have been 6 months now since discharge, are you willing to share how things are going…..

Best regards,

Chip

Oh, and an update on Rose. She has been off Enco/Bini 4 weeks, finally feeling somewhat alive, liver function almost back to normal. She is still fatigued and periodically feverish, but there does not appear to be any clear sign that her surficial tumors are growing! Beginning to wonder whether the Enco/Bini may have prompted a delayed response from the Nivo/IPI, during administration of which she progressed. I hear the Nivo and Ipi can stay on board for extended periods. No recent scans to look at status of liver and lung mets, hopefully they have shrunk too. Would be an odd blessing to qualify for TIL, and then not have adequate tumor mass to harvest!!

Thanks Celeste as always. She is nervous as the treatment is harsh, but input from both her oncologists suggest this is her best hope, and she was fortunate to qualify. The Enco/Bini shrank her tumors fast but also almost killed her, still working on getting her liver inflammation under control. Will post on her experience in hopes that will help others.

She came down with pituitary swelling which caused excruciating headaches and nausea, prednisone taper seemed to help, then headaches returned accompanied by very scary motor and cognitive deficits, more prednisone and now improved. Lumbar puncture showed elevated protein and we are now waiting on hopeful negatives for both cytology and DNA testing, as positives would confirm leptomeningeal melanoma, not a good thing. Waiting for the test results is painful. Good news is she also started on Enco/Bini and her neck and head lesions are shrinking. Prayers all….

Chip

She came down with pituitary swelling which caused excruciating headaches and nausea, prednisone taper seemed to help, then headaches returned accompanied by very scary motor and cognitive deficits, more prednisone and now improved. Lumbar puncture showed elevated protein and we are now waiting on hopeful negatives for both cytology and DNA testing, as positives would confirm leptomeningeal melanoma, not a good thing. Waiting for the test results is painful. Good news is she also started on Enco/Bini and her neck and head lesions are shrinking. Prayers all….

Chip

Thank you Celeste, I have been reading your blog, quite amazing…..perhaps the best resource on the planet for melanoma sufferers……thank you!!!

She is passing the 12 week mark with no sign of progression slowing, and I don’t like counting on the outlier chance after looking at the response times on that graph!

She will have her 4th round of Ipi/nivo week after next, then we generally wait several months for scans (she had CT/MRI 2 weeks ago when diagnosed with lung/liver mets) …..at the rate she is progressing, waiting that long seems very risky. We have discussed Tvec and BRAF/MEK inhibotors with her oncologist at SCCA in Seattle, he’d prefer to hold off on BRAF/MEK as a safety net, and is looking at an intralesional trial of a TLR agonist which he prefers to Tvec. Not recommending additional surgery, and her neck tumors may no longer be operable now. We have had a consultation with Dr. Funchain at the Cleveland Clinic who recommended adding Tvec. Dr. Topalain at JH also looked at her history via a researcher friend at Fred Hutch, and barring a detailed review thought moving to BRAF/MEK was advisable. We are leaning towards the BRAF/MEK and hoping that buys some time while something new comes out of trials……….seems to be the safest route. It may be possible to combine Tvec also, if the toxicity is not too bad. Will discuss with her oncologist tomorrow, and will post an update.

Keep the good words coming.

Best,

Chip