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Varmint5

jen2012
Posts: 1252
Joined: Aug 2012

Wondering how your daughter is?  And that cute grandson?

Chelsea71
Posts: 1170
Joined: Sep 2012

I've been wondering about Sandy too.  It's been a while. 

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Hi, ladies! I just checked in here and saw this! And I sure needed it. Actually, it made my day. Honestly, I have needed a break from the boards and took it. I've been kind of a wreck and it is just so hard and scary for me to log on to CSN and Colon Club for fear of bad news, and I'm sorry. That is not at all supportive of me, I know. It's a self-preservation thing. We've had enough bad news around here. I lost a very dear friend to breast cancer and my daughter's cancer has progressed.

So... here's an update. Her cancer stabilized in October of last year and stayed that way for a while on Folfiri and Erbitux. Then in January her CEA started creeping up again - very small jumps - 2 or 3 points - considering it was >6,800 in the beginning. It never got below 10. She continued on the Folfiri through March, then switched back to Folfox. But her platelets bottomed out and she missed quite a few treatments because of that. She had Cyberknife on the 3 largest lesions in the liver, and it worked. But on the PET scan in September, there was growth and a couple of new spots or old spots that had re-activated. Not sure, since she never had a PET scan until over a year after diagnosis and starting treatment, getting Theraspheres, etc.

So... I sent an email to Dr. Kemeny at Memorial Sloan-Kettering, and she got her in. She is going to have surgery to install the HAI pump on Oct. 25. I wanted to take her there long ago, but talking them into that when they were happy with the care she was getting here was next to impossible. CTCA wanted to do more Cyberknife, and Theraspheres again. Well, they obviously didn't work that well the first time. So we went for an opinion with a well-respected liver surgeon who said that she was "almost" operable, but it would be very risky and he would like to see more shrinkage of the liver tumors and "settling down" of the liver from the Cyberknife (elevated enzymes, etc.). She also stopped going to CTCA and the liver surgeon recommended an oncologist here, and turns out, we love him. And he thinks like Dr. Kemeny - no more 5FU systemically. The liver surgeon was all for us going for an opinion with Dr. K. So we did it. Dr. K spoke with the local oncologist and he is going to work with her from this end, doing the systemic chemo, etc.

And so here we are, still hopeful. Meanwhile, my daughter is back to work, feeling great with returned strength and vigor, and enjoying her son and family and job. She'll have to miss some work, of course, but they are very willing to work with her and completely supportive. Her son, born right before she was diagnosed (she was sick with this while pregnant, we just did not know what was going on and could not get answers) is now 2 and an absolute joy. I will try to post a picture soon, if I can remember how.

I need to read the boards and catch up. I think of all of you often. I have been very stressed, especially with the disease progression, and just had to back away. I will try to stay in better touch. You all are wonderful. Thank you for thinking of us.

Sandy

jen2012
Posts: 1252
Joined: Aug 2012

Hi Sandy,

You should feel bad about backing away - I completely understand as I'm sure everyone else does.  It does get to be too much.  Sometimes I read a post that just makes me so sad or angry that I can't reply...then I feel guilty for not being supportive!  

Seeing Dr. Kemeny sounds like a great plan.   I'm glad your daughter is feeling well and staying active.  I know our 2 year old is a great distraction - it's so fun and amazing to see their little minds working.  He keeps us laughing...and hopping! 

Give us an update on her surgery when you can.

Hang in there - I know it sucks watching a loved one go through this :(

janderson1964's picture
janderson1964
Posts: 1828
Joined: Oct 2011

Hi Sandy. It's good to hear from you and get an update. First of all I would like to say that I totally understand staying away from the boards. i have done it a couple of times before an upcoming scan due to not wanting to read any more bad news. We have to do whats best to preserve our sanity or what's left of it sometimes.

You and you daughter have really been through a lot in the past year but it sounds like there is a lot to hope for. Your daughter sounds like a real fighter and she should be very grateful for how involved you are with her treatments and doctors.

Chelsea71
Posts: 1170
Joined: Sep 2012

That's great news Sandy.  Sounds really positive.  Remember to look after yourself.  Stay strong.

 

Chelsea

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