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.

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

Glow-Worm

Hadn't updated in a while, but those of you that know us personally are aware of what is going on. However, for those who do not and follow this carepage, I felt I should update for you.

About 2 months back Eric got some bad news. A tumor at a critical junction point had grown to a significant size and wrapped around both a major plural artery and another vessel in the lower lobe of his left lung. Ablation was not an option as it was deemed too risky. The only other option we were left with was radiation, a treatment we have avoided this entire 2 1/2 year journey. He was to continue to stay on a chemo regiment to shrink the other numerous tumors in the lungs, but this particular one had to be attacked with radiation, or risk choking the artery. If the artery was completely cut off by the tumor... well I don't have to explain what that would lead to.

Radiation was the one treatment Eric had said he would never do because of his skin. We looked at that as a no go, but after consulting with Dr. Rimner in May, He decided to give the treatment a thumbs up. What Dr. Rimner proposed was 5 HIGH dose precise treatments to the tumor. These treatments would be over the course of a week and a half. One day on one day off. MSKCC has their own patented Radition Treatment comparable to the CyberKnife treatment at Penn that has been all over TV in this area. Only real difference is Sloan has had it longer.

Eric is now 2 cycles in and starting his 3rd tomorrow. We formally meet with Dr. Rimner the radiation oncologist, but on Friday Eric was informed that the radiation is working and the tumor is responding to treatment and shrinking. This is fantastic news.

Tomorrow Eric has radiation, an appointment with his lead oncologist Dr. Kemeny to discuss the other tumors in the lungs, and chemo. Tues we meet with Dr. Rimner, and Wednesday and Friday Radiation again.

Additionally, CEA has risen back up to 6.3 as of 6/3/13...not a good thing at all. :( Neuropathy has been causing insane amounts of pain. Hopefully he catches a break soon.

Keep those prayers coming...

Thanks!!!!

You take the Good, You take the Bad....

...you take them both and there you have 
The Facts of Life, the Facts of Life. 


So we got mixed news on Monday. Scans showed liver was clear, and that the ablations in Feb were successful. However, the scan also revealed that the Tumors in both lungs have gotten bigger. So Dr. Sophecleus, the IR surgeon, has begun scheduling lug ablations in late April, pending Kemeny's approval.

Kemeny is temporarily halting chemo, until we see a rheumatoid doc. Eric has been in crippling, and I mean crippling pain the last 3 weeks. To the point where he literally cannot get out of bed, and when he does he is moving like a 90 year old man. He said the pain in his muscles and joints was insane. He was using a heating pad on his back.

We thought maybe it was an issue with the Xeloda, but Kemeny does not think it would cause this incredible amount of pain. She believes it is actually his eczema. BEcause it is an autoimmune disorder, it can affect joints. His white blood cell count was also pretty high, at 21,000. He didn't have fever or any outward signs of infection, so she also believes it is inflammation related to the eczema (he also has 2 other autoimmune disorders-allergies and asthma). So she wants us to go to a specialist to get it treated...finding one is another story. She suggested we see a guy at Cornell, but I am just so tired of driving to NYC for all his docs. I wish I could find one down here at Penn or JEff, but the wait time is out of control. If anyone has any suggestions I would greatly appreciate it.

We do not want him off chemo for long, because we are finally seeing some decent drops in his CEA (tumor marker ) level. It went from 8.7 to 6.2 in a month. Last time his level was was as low as this was April of 2012, right after 2/3 of his liver was removed.  We need to keep the good stuff coming.

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

Grumble grumble...(original post Jan15, 2013)

Well we did not get good news on the latest scans. There is disease in the liver that has continued to grow and now needs to be removed. The size doubled since the last scan right before Thanksgiving. Also found in the scan was areas of growth in both lungs.

The rest is inconclusive at this time.

 Feb and March are going to be particularly trying. Just sucks.

Not really much more I feel like saying.

glad christmas is over

This one was a tough one. Ever since we got the scan results before Thanksgiving I tried to have holiday cheer, mainly for the sake of my son, and partially for the sake of my own sanity. Even though previous Christmases have been cancer filled, this one just got to me more.

Eric really hadn't been out of bed much in over 2 weeks. All weekends were spent in bed...evenings from late afternoon on were spent in bed. The whole holiday was spent in bed. It was so sad. And he felt so horrible and worn.

I ended up delivering the presents to his son. Eric had wanted to do it but he was too worn. I called my mother in law to wish her a Merry Christmas. It was heartbreaking. Eric didn't even have the stamina to speak with her Christmas morning. He was able to open some gifts in bed Christmas morning. I made sure I snapped a shot of it, even though he got mad. I wanted a picture. I wanted something from this holiday.

Logan and I went to church together. It was so depressing looking around and seeing all the happy and HEALTHY families around us. Ok, maybe not everyone is healthy or happy, but they were well enough to make it to Christmas Mass with smiles on their faces rather then laying in bed in pain and exhausted. After communion, the whole church began singing "Silent Night". That's when I lost it. I started weeping silently in my pew and couldn't stop. People around me were staring and probably thinking I was insane. Luckily Logan didn't seem to notice. In a church full of people singing about the birth of our Lord, I had never felt more sad and alone. I prayed to God to help me, to give me strength. I prayed for strength for Eric. I didn't pray for him to be healthy. I know God already has his plan. Good or bad, I don't know, but he has already decided.  I just prayed for the strength to understand and accept his plan. I prayed for strength for Eric to continue to fight. Whether he is fighting for his cure, or fighting to stay with us as long as possible, I want him to continue to be whole. 

He never made it to Christmas Dinner. Thanks to some generous souls at The Breathing Room Foundation, I had a nice frozen meal I got ready for him. Logan and I went to my parents first for some gift giving then Aunt and Uncle's for dinner to spend time with the Conklins. I felt guilty for leaving him, but knew I needed to keep some sense of normalcy for my 12 year old. But overall, this Christmas was just rotten.

Well here is to a better 2013. Because 2012 was rotten too, and so was 2011, and the last part of 2010. 2 years and 3 months straight is a really long time to be fighting this horrible disease without any sort of break. That's a really long time to be sick every day. Hopefully 2013 gives Eric a break, and us a chance to reboot.

PET Scan and CT Scan first week in Jan. We find out the results Jan 14th. If cancer growth is reduced or stabilized we are happy. If cancer has grown or spread, then we reach our first official chemo fail, and 5FU and Xeloda will no longer be a treatment option. Remember there are only about 4 different drug options for Metastatic Colon Cancer, so a drug fail super sucks.

Thanks for all the prayers. We really need them.