My wife stage 3 papillary adenocarcinoma with Braf v600 mutation - 1256652

bosshog89
Posts:2

on April 19th a month after her 37th birthday my wife had a wedge resection on her left upper lobe with the mass 4.5 cm, he also found some other nodule that looked similar and then surgeon found a nodule on the lower lobe that looked similar and decided to take that out as well. Pathology took about 14 days and came back as the upper and lower parts were malignant but the nodule he took from the top was really a lymph node and it was benign.
Pathology said surgeon had clean margins but the tumors were well differentiated, Adenocarcinoma, Papillary type.

We saw an oncologist and he said that she is stage 3 and he said that she has a very rare
mutation BRAF v600e, which don’t have any targeted therapy for and that it is so rare that they don’t even have clinical trials either. This Monday May 20th she started 4 rounds of Cisplatin/Alimta and since yesterday she has been in bed nauseas and just out of it.

Also the Petscan had a 3.5 SUV on the mass but didnt mention anything of the nodule

Anything I should know about the Braf mutation?

Also with a mass that large why such a low SUV?

any idea how long that mass was in her? months or years?

Thnx,

BH

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Reply # - May 22, 2013, 09:05 PM

JimC
Posts: 2753

Hi BH,

There isn't much on BRAF in lung cancer yet, but you might want to take a look at these posts:

http://cancergrace.org/lung/2011/03/25/braf-inhibitors-in-lung-cancer/
http://cancergrace.org/lung/topic/ongoing-trial-for-braf-mutation/
http://cancergrace.org/lung/topic/treatment-of-mbac-braf-mutation/

The SUV is less consistent with the size of the tumor as it is the activity of the cancer cells. Hopefully in your case this means that your tumor is not as aggressive as it might be.

I'm sorry to hear that your wife is having such trouble with her treatments. When my wife had carbo/alimta first line, her nausea set in at about the same time frame...a couple days after infusion. Be sure to stay in close contact with her oncologist's staff so they can help with her symptoms. Taking her anti-nausea meds before it sets in, by taking them on a pre-determined schedule, can help. Eating small snacks frequently rather than large meals is good. And we found that taking walks helped a lot. Her nausea faded after just a few days.

I'm not sure anyone can really tell you how long the mass was there, since cancer grows at such different rates.

JimC
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Reply # - May 22, 2013, 10:47 PM

Dr West
Posts: 4735

I'm sorry to hear about her prognosis. Yes, this mutation is too rare to have anything to suggest at this point...we're just beginning to see the first bits of information about this now.

A finding of a low SUV tends to be associated with a more slowly growing cancer, which would suggest that it has likely for at least several months, very likely more than a year, but it isn't possible to say anything precise.

-Dr. West

Reply # - May 23, 2013, 04:42 PM

bosshog89
Posts: 2

Thank you for all the info everyone. Also thank you, Dr. West for clarifying the size of the mass does not correlate to the activity the mass has.

I will keep looking for more things on this mutation. I was told by another user that there is conference this month about different trails (forgot what the conference was called) I will have to check on that.

Thanks all

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