The day Xeloda finally failed....

Well we got really crappy news last Monday. Lung tumors doubled in size since the last scan 2 months ago. . So after 2 years 3 months of just xeloda, Eric will will be adding biweekly oxali infusions.

This is a major blow. His cancer is no longer controlled and managed.
Instead of folfox, he is sticking with xeloda and adding the oxali. Mostly because he hates being accessed for 3 days. But it's essentially the same thing. The KRas mutation obviously complicates things now. It really limits the amount of treatments he can get before his options run out. They were going to put him on the CPT11 and oxali combo but she has decided to hold that in reserve for when she really needs it. She also said lung surgery will happen soon, she is just waiting for a particular doc that is coming back to mskcc.

Eric is having a really really hard time with this treatment. I think being on xeloda, with all ts manageable side effects, spoiled him a little. Sure he got sick, but he clearly forgot just how ad the oxali is. He is sick. Very sick. barely eating, always sleeping when he gets the chance. E says it feels like he has been hit by a MAC Truck. Just a horrible constant nausea and weakness. And this was only the first round...it doesn't get any better. This is his off week, so hopefully he rebounds before treatment next monday. Pretty much this entire weekend was spent in bed with a bucket next to him. And the other horrible side effects of the oxali are the neuropathy in the hands and feet, and the inability to touch/tolerate cold. Even the slightest chill in a beverage feels like glass shards going down his throat. ITs going to make summer so much fun...insert sarcasm here.

We found a local oncologist out of Doylestown Hospital that we will be using for some of the infusion visits. Since they are biweekly now, going up to NYC every other Monday would just be ridiculous. We are moving to North Wales next month, and Doylestown will be super close. I have a family member that goes to this oncologist, Dr. Lorraine Dougherty, and I have heard very good things about her. Hopefully she is a good match.

I guess that's it. Nothing much more to say. The whole thing just stinks! Below is a pic from infusion last Monday, at least he is staying positive despite the tremendous disappointment.

Falling into a new "normal"

Well I haven't updated too much. There have been some changes but I felt like there wasn't too much to report. Eric had some tumors removed from his liver in early February. He got through the procedure with flying colors.

Skin breakdown and infections are still a major concern. He was diagnosed with another nasty staph a few weeks ago. As a result he had to go on a mega dose of antibiotics for 25 days. We are having such a hard time keeping ahead of the infections! It seems as soon as one is cleared a new, different, form of staph pops up. He has not gotten MRSA since the summer, but my concern is that every time he gets a new staph it is resistant to more and more drugs. Our fear is always MRSA, as he went septic from it years before his cancer dx, and is very prone to relapses. We also now continue to worry about c-diff from all the antibiotics he is constantly on.

The team has decided to continue with the same Xeloda dosage and frequency for now. 2500 mg 2 x per day biweekly. Although I question the effectiveness of the drug now that mets have continued to form, Kemeny seems confident that it is keeping most of the disease at bay. She says if the meds were not working, we would see much more progressive growth, not the mets popping up that we see now. As long as Eric is still up for surgery, that is the route that we will continue to take. He fears having to go back to systemic chemo (IV), and mentally is much better with the Xeloda. However, recently, we believe exasperated by the cold, Eric has experienced crippling joint pain. Some days he can barely walk. Watching him this weekend was horrible. Sunday he looked like an 80 year old man. It has always made him achy, but now it is really effecting him. We are going to talk to Kemeny on the 18th of March and discuss this. Maybe there is an anti-inflamatory they can give him.

PET and CT scans are on Thursday. Eric's mother is going to go up with him. We will get the results on Monday and find out if there is any new cancer growth since the last scans in Jan and the surgery in Feb. We also meet with Dr. Sophocleaus, the IR surgeon, for follow up.

Eric has also begun light therapy. What looks like a stand up tanning bed was delivered to our home and is set up in the bedroom. The hopes are that daily exposure will help with Eric's skin breakdown and infections. And heck, maybe I will get a nice even tan before bathing suit season :)

As always, your prayers and support and very much appreciated. The past few months have been so hard as I have watched so many of my friends say goodbye to their loved ones, namely husbands, to this horrible disease. I feel like it has taken over our entire lives. Much like history, we now have our own way to describe our history, BC and AD, Before Cancer, and After Diagnosis. Every day we learn something new about ourselves and each other. I am happy to say that finally we are able to really talk. Talk about fears, talk about future, talk about the unknowns and what is going on in the now. For those of you that know me personally, this is a huge thing that took 2 years to happen. A very long 2 years. I think we have finally evolved into a real couple fighting this disease together.

On a bright note Eric celebrated his "37th year on this Earth/19 Months Past The Expiration Date" with a nice little gathering at Maggies on Jan 27th. Thank you to all the friends that made it out that day to help him celebrate. I celebrated my 32nd birthday, and was so very grateful that Eric felt well enough to celebrate with me. We also celebrated the beginning of our 9th year together. Hard to believe we have been together that long. We were babies when we met. Its insane. And finally, thank God, Eric was feeling well enough to attend his son Mark's high school ring ceremony. I know that was a very special day for them both, and Eric could not be prouder of what a fine young man Mark is growing up to be. Especially considering his entire high school experience his father has been sick. Despite that, Mark has done so well. We are both very proud of him, and very grateful that his mother Amy has done a fine job raising him.

Well I guess that's all for now. I am sure I will update when we get the scan results. Keep up the prayers if you don't mind, they are clearly working, even if we don't always see it.

Peace and Love,
Jeaneane