And the Winner Is….

November 2, 2016


There were actually 7 mutations found from the 315 tested, but Vignesh chose to concentrate on one with current, ongoing research findings – NTRK1 Fusion. There is good news and bad news, the bad news first – there is not an FDA approved targeted treatment for this mutation ‘yet’, but there might be a clinical trial that I could be a candidate for.

The good news, the tumor residing in my upper right lung has not changed and no new metastases were found, YAY! How do I know it has not grown?  A bit of background:

Last Thursday morning while walking Tess, I had sudden onset of chest pain which lasted about 20 minutes. The pain felt the same as the original pain I experienced back in July. I called Kaiser and a chest X-Ray was ordered for that day. The radiologists could not rule out a pulmonary embolism and I was sent to Skyridge Hospital for a CT scan. Because I have a known reaction to the CT contrast dye, I was given prednisone and a shot of Lovenox and told to come back the next morning for CT with contrast. Pulmonary embolism was ruled out but there was a very small amount of pleural effusion which was determined to have caused the pain. The amount of fluid is so small they cannot aspirate the fluid for diagnostic purposes, meaning we don’t know if there are cancer cells in the fluid which could mean progression.

So where do I go from here.  Vignesh has sent the test results to Dr. Camidge and his team at UCHealth to see if there is an ongoing, or soon to be, clinical trial focusing on the NTRK1 Fusion, etc., being conducted at UC.  Jim and I will be seeing him again this coming Monday and we will discuss options.

There has been a lot in the news lately about new FDA approved immunotherapy treatments for lung cancer. Currently, the belief is that one needs to have a high PDL1 expression for immunotherapy to work and I didn’t have enough tissue left from the biopsy to test for this. We are instead relying on my TMB (tumor mutation burden) number which some believe is a better indicator. Mine is low and it’s unknown if immunotherapy will work or not. I will continue with change of diet, meditation, exercise, supplements, acupuncture, energy work and prayer. Every day, I continue to turn this over knowing full well that I am not in control, yet doing my part to enhance my overall health and well-being. The more research I do, the more I am informed that each and every cancer is unique to the person. Yes, there are similarities, but what treatment might work for one kind of cancer or even a mutation within that cancer, may not be effective for another.

And so my search continues. Instead of feeling dejected that a ‘known’ targeted treatment is not available, I am spurred on, continuing my education and expanding my knowledge base to include this new information.  The correct path will be revealed, of this I have no doubt.

As always, my heartfelt thanks for your prayers and positive thoughts, they are working in miraculous ways!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s