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.

[happyeverafter]

Catolina, Thank you for sharing your beautiful wife's story. It is her story and others
that gives me hope if something should show up unexpected again. I just had my last
herception treatment Jan. 12 and had good results. But I know that it could happen
all over again. And be even more aggressive. This message board has given me a lot
of hope, that I can fight this disease again if need be. So sorry for your loss and
again thanks for sharing. I too am going for quality of time not qanity, but this
story has given me courage to at least put a foot forward AND TRY if a situation
arises.

[thinkpositive]

Catalina,

Thanks for posting. I too am sorry for your loss. It is interesting how we all respond so differently to treatment. We never know what tomorrow will bring so enjoying the time you have and making it quality time is really what it all comes down to. When I read your post, I can see the love you had for your wife shining through. I'm happy that you and your wife were able to have wonderful vacations together after her diagnosis.

Take care

[evlin75]

So sorry for your great loss. It sounds like you had a lot of quality fun times even after your wife's diagnoses and treatments. That is good and I expect wonderful memories remain.
As it is posted here, I lost my daughter Susan with brain and spinal metastases in December of last year. Yes the leptomeningeal is rather sneaky and one really needs MRIs to see the growth in the area of the brain and spinal cord.
However even if Susan's had been discovered sooner, there were few options remaining to treat her - all caustic with many side effects.

Again - sincere condolences on the loss of your loved one.
Ev

[sassy]

Catalina,

Thank you for so beautifully sharing your and your wife's story. I am glad that you have the happy memories and can move forward with a positive outlook.

My best to you,

[Pamelamary]

Catalina, thank you for sharing your wife's story and condolences to you and your family.
Best wishes.... Pam

[Ceesun]

Catalina, I offer my sympathy to you and yours and thank you for sharing with us on the board. I marvel that your wife was able to continue to work while in treatment and am glad that you both enjoyed some wonderful trips. A nurse once told me at the beginning of my diagnosis...breast cancer is very unpredictable...a simple statement that has a lot of truth to it. Sincerely, Cathy

[lkc Gumby]

Catalina,
My heartfelt condolences on the loss of your cherished wife. May you be comforted by the happy memories you shared for 33 years.
I am of the belief that our genetics play a big key in how we respond to treatment. We are just at the tip of the iceberg of learning about genetic mutations and how to treat them.
Once again, so sorry for your loss.

[Lucy]

I am so sorry for your loss. It sounds like your wife was an amazing person who didn't let cancer get in the way of enjoying her life, there's a lesson in that for all of us. Like others have said, I'm glad you had some good times and made some memories with her. It's obvious that you loved her very much and she was lucky to have you too. Again, so sorry for your loss.

[waterdreamer]

Catalina, thank you for taking the time to share your wife's journey with us. She sounds like an amazing lady, and I respect and understand her decision to have quality of life. I am so sorry for your and your families loss, stay strong and continue making a difference.

[forher]

I'm so saddened to hear of your loss. Thank you for taking the time to share your wife's journey. I wish you and your family strength in the days ahead.

[BonnieR]

I'm glad you overcame your hesitation and shared with us. We learned what remarkable people you are to have accomplished so much in the midst of uncertainty Very encouraging to others in similar circumstances. Live for the moment. Make memories
Bless you for enduring and keeping the faith

[Pray]

Thank you so much for posting. I'm so sorry you had to lose your amazing wife. Gods blessings to you and your family.