My daughter, Susan.

[evlin75]

Passed Thursday the 18th of December. Diagnosed as invasive ductal her 2+++ in April 2003. Possibly been there 10 years and undiagnosed despite yearly mamograms.
Herceptin was just in clinical trials and not available for immediate access to her.
She did a vaccination trial at Johns Hopkins after it metastasized to her bones a couple years later. Then as many targeted drugs as possible as the cancer continued to advance to her cerebellum. Had surgery to remove a tennis ball sized growth - then WBR.
We researched and used what was available to us keep her as stable as possible. She had excellent doctors and a great oncologist.

She did have a supra clavicle enlarged lymph node that seemed to be a problem. They measured it for a while -then did cyber knife. But that did not work- just made it open and angry looking.
2 1/2 years ago lepto-meningeal was discovered from her MRI. The doctors said 6 weeks.
Again we researched and discovered some success with herceptin per intrathecal and ommaya. It seemed to hold it at bay with added chemo agents for a while. They were just checking the spinal fluid though the last couple years and suddenly it was evident checking the fluid was not sufficient to check the progression.

When the MRI was finally done we then were able to see massive progression that could no longer be controlled or stopped. Radiation was attempted to reduce the swelling in the brain and spinal cord -but to no avail.

So we lost my daughter. We gained two and a half years by the measures we took. Much of the time could not be called quality time however.
I post this information to help others to understand the need for MRIs to find progression in the brain and spinal cord.

I give everyone here my best wishes and I hope research will bring more hope and longevity to you all.

Ev

[Ceesun]

Hello Ev, my heartfelt sympathy to you on the passing of your daughter. This is such a dreadful disease and I am sure she was a strong young woman in many ways. Cathy

[sassy]

Ev,

My condolences to you on the loss of your beloved daughter. You have fought long and hard against this disease to find continuous effective treatment for Susan.

My thoughts and prayers are with you and Susan's family and friends.

[rhondalea]

I am so very sorry to read this news about Susan.

[jaykay]

I'm so sorry for your loss

[forher]

Thank you for sharing your story. Our hearts break to hear this. We are so sorry for your great loss.

[Carol Ann]

I am so very sorry.

Carol Ann

[Pamelamary]

Sad news - condolences to you and all Susan's family and friends.

[Nurse4u2day]

It saddens me to hear every time a life is taking from this disease,but what a wonderful inspiration I feel from you . During this grieving process you have taken the time to remind all of us the continued importance of being ones own advocate.
Again my condolences to your family.

[StephN]

Dear Ev -

You have been generous in sharing Susan's story here, and still so even in the final chapter. Thank you for sharing your love and your fight to keep your daughter with you as long as there may be a fighting chance.

The research goes on and each of us who does something a little different gives knowledge for those who follow.

Please find solace in what you have given us here, as one way to take away a little bit of the hurt you feel.

[sarah]

Dearest Evlin, I am so sorry to hear about the passing of Susan. My heartfelt sympathies go out to you, your family and friends.
I am greatly touched that at this time of such sorrow you have taken the time to explain what treatments Susan undertook and the importance of MRIs. Such a thoughtful and inspiring post. Your caring, generous nature must have comforted and helped your daughter, Susan.
I offer a big cyber hug and love
Sarah

[Dakini52]

Evlin, thank you for sharing your daughter's passing. It is always a little frustrating for me to hear of a person progressing so much before diagnosis. My thoughts are with you and your family. I hope the happy memories you have of your daughter will help you through your grief.

[lkc Gumby]

I am sorry on the loss on your daughter, Ev. My mom died of BC on the 18 of Dec , 1. 5 yrs before I was dxed. It was a sad Christmas.
So very sorry.

[karina14]

Evelyn, my sincere condolences for loosing Susan. I am very sorry. She was a fighter. And thank you for sharing her story. She fought the disease for more than 10 years and more, the brain mets, that are so tricky and there is so little one can do for them. That shows courage.

I do hope doctors will do brain MRIs when you are diagnosed with mets (especially if you are her2+) and also to follow up progression. In Canada finding brain mets is not done proactively, only wen you have symptoms. That is how I discovered mine. The shock was huge when the MRI showed between 50-100. After wbr, they came back and did a second wbr. I know they will come back in few months and wbr will not be a solution again. Looking into trials for a systemic treatment that might help. I was lucky that I had every 3 months brain MRIs to verify if they grow again. Other oncologists might not do it.

[Lucy]

I'm so sorry to hear of your loss. You'll be in my thoughts and prayers.

[Pray]

I also am so sorry for the loss of your daughter. Please know you and your family are in my prayers. His Peace.

[linzer]

I am so sorry. My thoughts are with you and your family during this time. Linda

[KirisMum]

Ev, I am so sorry. As a mother, my heart breaks for you.

[Saygoon]

My heart and thoughts go out to you

[Coux92]

I'm so sorry for your loss.

[evlin75]

http://www.degusipefuneralhome.com/obituaries/Susan-Kristoff/#!/Obituary

My daughter's obituary.


Ev

[StephN]

Thank you. Such a loving and lovely tribute. And being a gemologist does not surprise me, as Susan was obviously a treasure to all who knew her.

[KirisMum]

Thank you, Ev. Susan was a real gift to the world. Again, I am so very sorry for your loss. It's just not right to lose a child. :-'(

[Dakini52]

What a beautiful tribute to your daughter. Thank you for sharing it.

[Mtngrl]

Dear Evlin,

I, too, am so, so sorry for your loss.

Thank you for telling us Susan's story, and for your wisdom and insight. It is very generous of you to reach out to this community that way.

[Redwolf8812]

I am so sorry, Evlin. Thank you for remembering us and keeping us posted.

Prayers,
Penny

[Rolepaul]

Ev,
I am glad Susan had the extra time, but sorry it was not time where she was in better health. I agree that finding the disease earlier would have been better, but I am not sure if they would have started the IT Herceptin with an earlier diagnosis. I am sorry for the loss of your daughter and wish I could have been able to do more.

[evlin75]

Thank you. Finding it before it became invasive ductal would have been the important time....right in the beginning in 2003.
I have racked my brain for any solutions that might have worked, but realize we did everything on God's earth -to no avail.
Her oncologist accessed all the targeted drugs and they just did not work for her -either at all or any definite period of time.
The last couple years when she was dealing with the leptomeningeal diagnoses, the DR. should have been doing more frequent MRIs. Checking the brain and spinal fluids was not sufficient.
But the genetic testing showed so MANY mutations that the cancer had gone through .....and she had used most all the treatments available. Now any that could be reused were so very caustic and caused her so many side effects - and few available. Even if he had found the progression sooner.

Her genetic make up evidently caused the limitations as each individual reacts differently to the treatments available.
But.............a her2 diagnoses had a 2 year deadline some time back. From the April 2003 diagnoses to December 18, 2014 we had our Susan, but like I mentioned before the last weeks were not much quality time. Hopefully some day vaccinations will eliminate this disease.

Ev