My wifes fight- long

[catalina]

My wife of 33 years was diagnosed with invasive ductal HER+++ in August 2012 during her annual mammogram.

Further scans showed liver and lung involvement, so she was diagnosed at stage 4. She underwent the Perjeta, Taxotere and Herceptin chemo treatments. She had bad GI side effects and ended up being hospitalized, and then the Perjeta was dropped. She then went on Herceptin every three weeks.

In April 2013 she was scanned all over and they said she had a complete pathological response. NED.

She elected to have a bilateral mastectomy in order to do everything possible to fight this. The Oncologist said there might be cancer stem cells still in her breast. That surgery went very well and she only missed 4 days of work.
In August of 2013 we had a great vacation, sailing and hiking in the Pacific Northwest. She started getting bad headaches especially in the morning. We reported to the Onc and they did an MRI and found 12 plus tumors with several clustered around and in her cerebellum. She was experiencing brain edema and was in danger of a hemorrhage so they put her on steroids and Tykerb. We decided to use whole brain treatments- 40 gray units in 20 fractionated doses of 2 per day. Other than the hair loss she had immediate relief and rapidly got better with only 5 tumors remaining, 3 at her cerebellum. She stayed at work the whole time.

In May of 2014 she started not eating and having headaches and further scans showed more growth of the 5 tumors. This time we did gamma knife and she almost immediately got better. We had another great summer vacation. In October she started having headaches and loss of appetite, and we found out she had hydrocephalus caused by a blocked 4th ventricle. High doses of Decadron helped, and they decided a cerebellar craniotomy could be done to excise the tumor in the cerebellum in early December. We went to MD Anderson twice and they said she was not a good candidate for the Ommaya reservoir since she had solid tumor involvement. Instead they pointed us to clinical trials for a small molecule chemo. Those trials said she was too sick to enroll.

After the craniotomy her condition significantly worsened, and she passed away on January 14. The autopsy showed undiagnosed Leptomeningeal carcinomatosis. This was preventing the CS fluid from being absorbed contributing to the communicating hydrocephalus.

These small molecule drugs show great promise. If we just could have had some more time I think these new drugs could have made a difference. Leptomeningeal involvement is very hard to diagnose, and the main contributing factor in my wife’s death was where the tumors were, mainly in and around her cerebellum.

My wife decided early on to go for quality of life instead of quantity, and she worked as a Speech Pathologist all the way up to the last month of her life. She got to see our kids graduate from high school, proms, my oldest daughter graduate from college and get a job, etc. I do wonder why some people respond so well to treatment and sometimes it does not respond. There are some interesting studies regarding the use of Taxols and brain involvement.

I hesitated to tell her story because I do not want to discourage those in the fight. Keep at it and look closely at the clinical trials. There is still hope.