Monday, May 19, 2014

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.

Monday, March 24, 2014

Cancer is a way of life...

I hadn't updated in awhile. Not because Eric is doing fabulous and cancer cells are dying left and right, but mainly because, well, cancer is now just a way of life. Kind of like a socioeconomic status, or an ethnicity, cancer has now become life for us.

Eric spent his 38th birthday in the hospital, just like he did his 35th, the first year he was diagnosed. Just like that year, I got  him a birthday cake (slice of cheesecake) and ordered him a nice take out dinner from a near by 24 hour pizza place. All the nurses felt terrible as he was sitting in the ER. You know how they come around a million times and ask your date of birth, and then the look of sadness on their faces when they realize that on this day, the day of your birth, you are sitting in an ER because you can't breathe and you have Stage IV cancer. They feel sorry for you because chances are this could be your last birthday, and here you are getting ready to be admitted. HA! Well joke is on you, this is his 3rd extra birthday! So for us its not bad, its just life.

After that stay there were 2 subsequent stays in the following weeks because the breathing just wasn't improving. At first they thought atypical pneumonia, then maybe tumor growth, then maybe radiation scarring, the end result after we ditched UPENN and went up to MSKCC ER was that it was a combo of all 3. Started with Bronchitis in EArly Jan, then became pneumonia, which inflamed the scar tissue from radiation in the left lung essentially seizing the lung and then making his long controlled asthma flare up. At the end of the day all that changes is he now sees more specialists in NY (we are now up to working with 4 different hospitals  lol MSKCC, Cornell, Hospital for Special Surgery, and now Mt. Siani) a super high dose of prednisone (was 60 2x per day, now 50, nebulizer treatments, staying on the chemo, and just monitoring. But he still can't breathe and wheezes like crazy, so who knows when and if this will ever get better.

CEA Tumor marker levels had lowered for some time. Now they shot back up from a 5.8 to an 8.6. There obviously new tumor growth somewhere,and I guess we will find out where with the next round of scans in April. We also found out that Eric is KRAS Mutant. Which sucks, because basically that means there in a limited amount of treatment that will actually work for him. Luckily we have not exhausted the current treatment options, so for now this is not an issue. But it will be.

Eric finished his 82nd round of chemo last week. I think when he reaches the 100th round I am going to have a party. It should be around the same time of his 4 year diagnoses anniversary date, so I could have a Cancerversary Party. We need something to celebrate and look forward to.

Right now cancer is in both lungs, chest wall, lymph nodes in the neck, and abdominopelvic wall. Still clear in the colon and liver, areas of uptake before in lower back and head have disappeared. Still on 2300mg of Xeloda Chemotherapy twice a day for 7 days every other week. Insomnia has been back but I'm guessing because of the steroids. And although his attitude sucks on them, they have also helped his skin and some of the pain subside. Just stay clear of him when he's on a roid rage  haha! 

This weekend we got the chance to dress up and attend my cousins wedding. It was nice and we got the chance to dress up, which we haven't done for a long time. When people see Eric, they just can't believe he's sick. He looks so happy and healthy, but looks are deceiving. Always remember that. Just because someone "looks" good, that doesn't mean they aren't suffering, or for that matter dying. We have accepted that Eric will never beat this. He will eventually die. We are so sick of the people that say, "You are going to beat this, keep fighting."  Yea he will keep fighting and we have a plan in place for when Quality of life greatly declines. But that is a personal decision we have made, and one that we are not even close to yet. So in the meantime we accept the cancer that has invaded our life, and carry on.


I guess there is really nothing more to post. We just keep trying to get to tomorrow and stay positive.

Peace & Good Health,
Jeaneane