Monday, December 31, 2012

The Scariest Moments

Within a few hours of writing Friday's blog, we had the worse scare thus far. Friday night mom began feeling very breathless again and was having panic attacks. We eventually got her to settle down and kept a close eye on her throughout the night. I think I feel asleep around midnight. Then at 2 a.m. Saturday morning, things quickly changed for the worse. The breathing was acting up again but this time it was coupled with really bad chest pain. She couldn't physically get up and walk either. We decided she need to be rushed to the ER asap. We were going to call ambulance but decided to just drive to the Unity Hospital since they are quite familiar with her medical situation and they could reach Dr. A or his team pretty easily. We scrambled to get her things packed and her ready for the trip to the ER. My brother-in-law physically carried her up the stairs and into my car.  In the midst of it all, I felt so sick that I just threw up all my food from the night before. But, I got myself together and focused on what I needed to do to get through this.

We quickly drove to the ER. It was so eerie...driving in the wee hours of the morning and no one around. It felt like the Twilight zone. We arrived at the hospital and got her admitted right away. They did all the necessary preliminary tests and we filled them in on what's been going on lately. She was put on oxygen and given morphine to control the pain for immediate relief. She was then assigned to her own room in the cancer ward after a few hours in the ER. They did a chest x-ray but it showed that the amount of fluid in her chest was just a small amount. They were puzzled as to what was going on.

Later in the day, she started having breathing issues again (with oxygen on) and they rushed her to get a thora to get whatever fluid drained. To their surprise, they drained 675 cc's from the left side of the lung. For some reason, her x-ray was not showing this. Later in the afternoon, Dr. K who's an oncologist and works with Dr. A, came on duty. He thought it was all rather perplexing and ordered a rush ct scan. He said that the amount of pain mom was feeling was still there and she should have started to feel a lot better after draining 675 cc's of fluid from the lungs. Within an hour or so, we got the ct results back and learned that mom had multiple blood clots in her chest. She also had one in her left foot which is why she felt weak in her legs. They started her on a fast acting blood thinner via her iv to get things under control.

On Sunday, we learned a bit more. Not only did she have multiple clots but they were pretty massive and began to branch off so surgery was out of the question. Dr. K said that it was very good that they caught this when they did. It all could have end in a blink of an eye.He also said she's still not out of the woods yet. The next few days are crucial. They are doing what they can but at the same time, the condition is very very serious. He said that she can just stop breathing or her heart can just stop beating.

She's being given another blood thinner today though I am not sure when that will be. She's scheduled for an IPC (indwelling plueral catheter) surgical procedure later this afternoon. This will at least help the fluid buildup so they don't have to constantly poke holes in her lungs.

So,  that's where we're at. I will update how the procedure goes later today. Thank you for all your kind words and those who've reached out to me and our family. I hope everyone understands that I can't update each and everyone individually via the phone. I haven't been home a lot, haven't had much sleep and just trying to get through these days.

Right now, we have a lot going on and I have to be there for mom.

Friday, December 28, 2012

Staying Strong

The last several days have been challenging for all of us. I won't sugarcoat anything -- it was pretty bad!

A few days into taking the c-met drug (Crizotinib), mom has been experiencing very bad nausea and has been vomiting constantly. As a result of that, she hasn't been able to keep any food or liquids down and her motivation to take pills to ease symptoms have diminished due to the fact she's feeling pretty rotten. Even though she was home for Christmas, she had to spend most of the day in bed. But, we made the most of our holiday together and did truly have a wonderful Christmas. She was quite happy with her new iPad she got from all of us and the Rita Collection-esque cover for it too. :-)

I'm also happy that she's now living with me now and that's going to alleviate a lot of my stress. The last seven months have been crazy running around town and managing two households and all that encompasses that.

On Wednesday, we had a follow-up with Dr. A. I was not there and my husband, sis and her husband went along with her. After hearing about what mom was going through, he suggested a very short break from crizotinib to get her nausea under control and changed her medication around a bit to assist in easing the symptoms. But, within a day of being off the pill, mom began experiencing piercing chest pain and couldn't breathe again. Obviously, the crizotinib was doing something! She was adamant in wanting to just quit and just let things be. I can't blame her fully as her body is going through quite a bit lately. But, I was also quite frustrated that she was willing to give up just a few days after starting to take the pill. We all worked so so hard to get to this point and she was truly given a gift to even have this drug. It's one thing if the pill had no impact and her coming to terms with that but it's another thing to blow an opportunity that can be life saving.

It took a toll on the four of us and we talked a lot. We stepped up and worked out a solution. My sis and husband had a heart to heart talk with her while I was at work yesterday. They explained that all this was bigger than her, which it really was. She has been given a unique opportunity to potentially help others who have this disease down the road and help others now by what we're doing. All eyes were on her. We told her that it was essentially her choice but once you turn your back on treatment and head to hospice, there's no turning back. She decided to keep fighting!

My own two cents is... I know the chances are slim and even though we've lost my two cousins from this -- no two paths are the same. Just because, it's the same disease with similar symptoms -- it does not define your outcome.

Monday, December 24, 2012

Discharged and Days 1-4 of Xalkori

Last Friday, mom was discharged from the hospital. They got all the infections under control, her heart exam came back clear. The thora on the right side of her lungs made a huge difference in her ability to breathe. She was taken off of the oxygen and had to do several walking tests and she passed with flying colors. She was given an inhaler just in case she needs it from time to time.

We also started our very first dosage of crizotinib/xalkori. She has to take 1 pill in the morning and 1 pill in at night. The challenge is going to be to keep it down without her throwing up. In the past few days, she's had severe nausea and vomiting because of the new treatment. We're trying to work out the bugs and optimize the pill staying in her for as long as possible until it's released into her bloodstream. We were given a whole new variety of meds to manage side effects from this new treatment too. I'm still getting use to it all. It's like relearning everything and I have to get a feel for things.

The one good thing is NO CHEMO anymore. We are all happy she's just done with that. From the recent scan results, it's evident that cancer was smartening up and just couldn't keep things at bay anymore. So, onto xalkori. We're all very optimistic of this new revolutionary treatment. I've search far and wide for case studies or stories, and I have yet to find this drug being used on a gastric patient. So, this is a leap of faith!

I'm so thankful for the amazing team at the oncology clinic and hospital these past few days. I can't say it enough. They are amazing. They were on top of things from the minute I called them on Wednesday. Dr. A especially has been the leader in all this. Back in May, we were told she had less than six months to live (if that)...but we keep pushing on. I know the chances are slim but I still have this feeling like she can be the one to beat this in our family. We know so much more than we did four years ago and there's been quite a few developments in the treatment realm. I think of my cousins often and I know they'd be proud of what we've been able to accomplish so far.

So for now, I write this on Christmas Eve. We are going to be celebrating the best Christmas ever with mom.

Thursday, December 20, 2012

Day 2

I arrived at the hospital bright and early today after having only a few hours of sleep the night before.  I needed to be with mom today as she goes through all this. Her condition is still not as stable as I'd like but she does seem more comfortable today compared to yesterday. She's still unable to breathe on her own but at least her pain level in her chest has lessened.

I spoke with the attending physician this morning and he thinks there's some other factor that is affecting the rapid fluid build-up. He ordered a few more tests to be done. Earlier this afternoon, mom had a thoracentesis for her right side of her lung and they withdrew 600 cc's of fluid. It's crazy how much fluid had piled up because she had that side drained just over two weeks ago (400 cc's).  She was given a drug called lasix which is used to treat fluid retention.  Hopefully together they can get the fluid under control.

She also had an echocardiogram to make sure her heart was working the way it should be. She had one back in June prior to starting the EOX chemo regime so they are going to compare the two to see if anything is out of the ordinary. She was given another med to keep her blood pressure and heart working property as a precaution.

3:15 PM - Dr. A stepped in for a few minutes to visit mom. He received the ct scan results from yesterday and it shows that there are some additional cancer spots spreading to her lungs. We talked and the plan of attack is to go ahead and start the crizotinib/xalkori tomorrow. I am so relieved that we got his approved ahead of time because ironically it's a lung cancer drug. We also chatted a bit about options and worse case scenarios but I am choosing not to discuss that right now because it's a private family matter. Mom, Mandy & I need to make those decisions.

I got a bit teary-eyed when Dr. A left. He held my mom's hand and asked her all about Guyana. He said one day he promises he'd visit Guyana for her.  He also told mom that she's very lucky to have me as her daughter because I've done a tremendous job at dealing with all this. He said I've inspired him and his team and they learned a lot from me and we wouldn't be where we were if it weren't for me.

7:00 PM - Dr. A and I went over all of mom's current medications and possible interactions with crizotinib. So, we're changing and tweaking things to make the transition as easy as it can be.

As shitty as the situation seems to be, I still have hope.  Mom has been given a unique opportunity here with these c-met inhibitors. I forgot to mention in the blog with everything going on, but she also got approved for the 2nd c-met FDA approved inhibitor out there, Cabozantinib. And we didn't have to file an appeal on this one - yay!

I strongly believe that mom has fight in her yet. It's been a rough and bumpy road but she's digging deep and we're fighting.

Just a paralegal

Ugh...I really don't know where to begin. Yesterday I went over to check on mom over my lunch break like I typically do. She's been having some breathing issues for the past couple days and I was working hard at getting her hemoglobin back up from last week (8.4).  I got over there and her breathing did not sound right at all. She was gasping for air even at rest and wheezing. She also told me that she was urinating pink. This set off a red alert and I immediately called the oncology clinic. They advised me to rush mom to the ER right away. They said they'd call over there and let them know we're coming. Our drive to the ER was a scary one. It felt like I was extremely close to losing her and she'd take her last breathe right in front of me. It wasn't suppose to be like this.

We arrived at the ER and a slew of medical staff began working on her. It was like an episode out of ER. They doctor on call and nurse kept asking questions and I was able to fill them in thoroughly on background, symptoms, blood counts, chemo and medications.  I told the nurse all about mom's prognosis and how I have been combating things. She asked if I was a professional personal care assistant. I was kind of in a daze and I uttered, "No, I'm just a paralegal".

While in the ER, they ran a slew of tests (chest xray, EKG, bloodwork, cat scan and urinalysis). The attending physician said that preliminary tests showed that she had a few infections (urinary, bladder and respiratory). But all of which were going to be treated with intensive antibiotics. They also said that she could have pneumonia since there was more fluid in her lungs. She had to be hooked up to an oxygen tank cause she couldn't breathe on her own at all.  Even while on the tank, there were still moments she was struggling for air. It was very scary.

The nurse said we'd be spending the night there cause more tests were going to be run the following day.  They were going to be monitoring her condition throughout the night. Also,  since mom had her thoracentesis on Friday, it didn't make sense that the fluid would be back so quickly.

As she filled us in on what'll happen next, she said to me, "Honey, you're more than just a paralegal". Her words stuck with me.

Wednesday, December 12, 2012

A Momentus Day

Yesterday was a momentus day!!!!!!!!!!!!!!!!!!!!! For the first time since May 4th, I feel like I made my mom proud.

On Dec. 11th, my phone rang. It was Dr. A's office. I immediately knew that it was the appeal decision. Before I even answered the phone, I had this wave of calmness all over my body. I knew deep down it would be good news. And it was! Dr A's nurse happily told me the great news - we were approved for off-label usage for crizotinib (xalkori), the lung cancer drug we've been trying so hard for. Dr. A and I went head to head with the insurance company for weeks. We spent hours pouring into the c-met research, sending correspondence back and forth, getting even more in-depth research when we were initially denied and then worked hard to appeal the decision.  I am elated that all the work we did paid off.  The next step is working out all of the details. It's been officially approved but now it has to be dispensed which in itself is a process. We have to go through a specialty pharmacy, submit co-pay and get all the necessary paperwork filled out.

Now I hope the drug is the first FDA approved c-met inhibitor drug making it weaker than what's being tested in current c-met trials.

I'm not taking a backseat either just because this was approved. We're working just as hard to get another FDA approved drug called cabozantinib approved as well. This drug is more powerful that crizotinib. Gotta have options.

In addition, I've also been pursuing another treatment option for mom down the road. It's on the back burner for now but we're getting the ball rolling on it. She's a candidate for a small pilot program at Mayo Clinic - Center of Individualized Medicine. More to come on this - we are voyaging down there next Wednesday to meet with the program director and surgeon.

Thursday, December 6, 2012

December Follow-Up with Dr. A

Yesterday, we had an follow-up with Dr. A. He gave us a thorough summary of mom's CT scan results from last week. The good news is that the cancer in the stomach only had a small progression but for the most part, it's still stable. The not-so-good news is that the cancer appears to be spreading a little in the lining of the lung. This is what caused the fluid in mom's lungs the last couple of weeks. He indicated it wasn't too bad at this point and we'd combat the fluid by doing regular thoracentesis procedures every few weeks. We'd alternate which side of the lung since one of the main concerns of this procedure is the lung can collapse.

Mom decided to go ahead with chemo yesterday while she waits on one of our c-met drugs to be approved via off-label usage. This will be chemo 9 - session 1. Her vitals all looked pretty good considering what she's been through the last few weeks. I'm so proud of her for fighting. Most of the time she's completely miserable from the chemo but she digs deeps to fight another day. I'm am fortunate to walk beside her as we go through this together.

Greetings Cabozantinib!

Got some promising news on the c-met drug front. A new drug called cabozantinib (Cometriq) was just approved by the FDA on November 29th, 2012. This is the second drug that's FDA approved that's a c-met protein inhibitor. Cabozantinib is going to now be prescribed as treatment for medullary thyroid cancer (MTC). The drug company, Exelis, is currently studying cabozantinib as treatment for prostate cancer too. I've been doing some research and there's strong opinion that once it is FDA approved for prostate cancer, that oncologists will be able to prescribe this for any cancers with c-met expression in tumors. This is something that will really benefit a lot of patients out there.

In the meantime, I've already bugged Dr. A about getting the ball rolling on seeing how we can get off-label usage for cabozantinib. So, it's in the works along with crizotinib (the lung cancer c-met inhibitor) which we've filed an appeal to the insurance company.  We're awaiting the appeal decision.

If both of these pathways don't pan out, I'll be heading to Detroit with mom somehow. Not sure how yet, but that'll be our last option. Not giving up.

Monday, December 3, 2012

A Letter of Life & Death

Even with all the craziness going on last week, I have been working hard and really pushing towards getting some form of c-met inhibiting drug.

If you recall from a previous blog a couple weeks ago, Mayo Clinic is currently conducting a c-met trial. The downside is that they are only admitting kidney cancer patients. I've been working closely with a Mayo oncologist and a few other doctors down there and they've been trying to convince the drug company sponsoring the trial to include mom into the trial. They suggested that I write a letter telling our story.

So for the past week, I've spent a lot of time getting my thoughts, feelings and research onto paper. I cited research, gave a thorough background of mom's medical background and explained how it would be mutually beneficial have a gastric patient in their trial with their new c-met drug. I also talked about the genetics and how it can help others in my family too.

Unfortunately, it wasn't enough and they denied the request Friday. I was beyond devastated. When I saw that email come through, my heart just sank because I felt like I failed mom. Initially, I was also quite upset at the big drug company for denying her but I am sure they had their reasons. The drug they are testing is very important and it can help a lot of people in the future.  I hope it's successful.

But, for now...the c-met Mayo Clinic trial option is off of the table.

Update (Xalkori/Crizotinib): We were also denied by the insurance company for the xalkori/crizotinib, the FDA approved c-met/alk inhibitor drug for lung cancer. Dr. A is going above and beyond with this and appealing the decision. He's written a very eloquent letter trying to convince the insurance company to cover this drug for mom because out of pocket costs are insane ($10,000 per month).