Happy July 4th

Atlas, it's Friday. I'm so glad the weekend is coming since it's been a pretty busy week. I did work from home on Wednesday and then head into Stanford for my chemo Gemzar treatment. Aside from coming there almost every week, I've been feeling pretty "normal". When I do go there, it always makes me feel so sad and so helpless that I have get poked and get treatment. The taste of saline and heparin before treatment and then after treatment is just so yucky that it makes me a bit nauseous. Chewing on some candy or a granola bar helps distract the taste a little bit. But, I just can't wait until I can just take a pill and have it shrunk my tumors. I'm tempted to ask Dr. Neal to switch me over to the Crizotinib pill.

LDN

When I got home, I was just so tired, after dinner, the kids and I went to bed at 7:30PM.  I can feel that my body is getting so tired of chemo. Been reading on some other methods that some readers kindly wrote to me on how they've fought their stage 4 NSC lung cancer. It's an amazing story on how this one woman, Celia Danks is taking something call LDN to keep stabilizing her Non Small Cell Lung Cancer. You can read more about it at http://www.ldnscience.org/low-dose-naltrexone-ldn/ldn. When I read about this, it states that LDN is, "FDA-approved naltrexone, in a low dose, can normalize the immune system — helping those with HIV/AIDS, cancer, autoimmune diseases, and central nervous system disorders.".  I'm going to read more about this and ask my doctor about this.

Another treatment I'd like to ask my Doctor about is Immunotheraphy. There's been lots of trials on this and I'll have to keep looking to see there are trials in the area. Check out the list of Immunotheraphy trials shown below. 

When I read discussions on how others on Inspire (an online support group), I also learn on this one post http://www.inspire.com/groups/lung-cancer-survivors/discussion/cancer-is-not-invincible-there-are-options-for-stage-iv-or-all-stages/, that discusses about this same LDN medication to fight off cancer.  It also mentions a third medication call "Metformin, that can cut off the cancers food supply - which is glucose. Cancer basically eats sugar. Without it's food, it can be weakened and/or killed off. This medication Metformin, can be used for any type of cancer and does not have to be tested for. The only requirement is that your kidneys are working and not too badly messed up.http://www.lef.org/magazine/mag2012/feb2012_Can-Diabetes-Drug-Prevent-Cance r-Death_01.htm?source=search&key=METFORMIN. "

I'll have to do some reading and bring it along at my next Dr. appointment to discuss with him about the benefits of these anti cancer medications.

All is well with me, kids, hubby and our 2 dogs. After the kids last dance, swim and Kumon lessons this coming July, we'll going to take a break from their weekend routine classes and Kumon, and enjoy out weekends just relaxing and doing fun things together.  It's been sort of crazy with the hussle and bussle of always trying to pack them up to go to class for the past 6-7 months of dance, gym and swim lessons. Lots of Love.

CT Results, Alk, ROS1 Results

This past Wednesday, June 20, I went back to Stanford for my routine labs, Dr appointment and infusion. This was the big Day where I awaiting to hear results from my latest CT chest, abdomen, pelvis that I just had gotten done and also to see findings of my ALK and ROS1 mutation results. The day started so busy, as normally, on Wednesday, I would have stayed home and not head into the office.  But since we're so busy, I got up early to head into the office to have a breakfast lunch with the team and our business partner. After that, I head into the office to get on a conference call meeting and then, it was almost noon and I had to go pick up my good friend, Moanie to come along with me to my Stanford appointment. I'm so glad she's able to come along with me for this big day of news from my Dr.

Results
It was a pretty hectic, crowded day throughout the day as it was packed with patients. Luckily the staff who checked me knew me and I didn't have to wait in line.By now, it's about 12:30 already and feeling so hungry, we took a stroll over to the cafeteria to grab lunch, knowing that sitting in the lobby waiting, it would probably take awhile.  It was perfect timing as when we're done with lunch, I was called in to see Dr. Neal.

After some vital signs were taken by the nurse, I saw Dr. Neal. He gave some good news that the results from the CT scan shows that things are all pretty stable and that he recommends me to stay on the current chemo treatment. As for the ALK mutation, he says the latest pathology report indicated that it's not an exact match and that it only shows some ALK like similarities. However, he's still going to prep the initial paperwork and authorization from my insurance to get it approved to allow me to take Crizotinib at some point later if needed. He says that if I were to take this pill, it may or may not be effective and that it doesn't pass the brain barrier. In other words, Crizotinib isn't very effective at preventing brain metastasis, that if it works against stabilizing my tumors on my lungs, it won't stop it from spreading to the brain.

As for the long awaited results from the ROS1 mutation, I'm negative, I don't have it. But, Dr. Neal says, it's actually better if I do have the ALK since Crizotinib is the same pill to treat it and it's FDA approved.

EKG
As for my rapid heart beat, it was a little at 102 and 3 weeks ago, it was at 75. This was probably because when I first came in, I had just taken a short walk. So to see what's going on, I was given the EKG test. The results from that came out normal at 92 beats. With drinking less coffee, I'm feeling a bit more "normal'. But, still I'm concerned at what's causing fluctuations with having heart palpitations.  Results from my thyroid labs shows that it's in normal range as well.  Since I'm feeling good, we'll just keep an eye on this and if needed, I may need to see a cardiologist.

Overall, I'm feeling pretty good and keeping busy with work, exercise and the kids at the usual routine activities. I'm just so thankful for stableness and for great support from family, friends, coworkers and neighbors.Lots of Love.

Cyberknife done

This past Friday, June 15, I completed my Cyberknife radio surgery to treat the one new tiny lesion that my brain MRI showed. This procedure was quick and painless and I didn't even take any of the prescribed premeds, like the anti nausea and the steroid. Good thing I didn't since the steroid would have made me more jittery, hyper and I would have stayed up late not able to sleep. I tried to move this procedure to next week and have another week off from chemo. But, they said, moving it an extra week required me to redo my brain MRI again. And since I really dislike a repeat of another brain MRI, I kept my cyberknife treatment.

Last week was a week full of Stanford appointments where I went there almost everyday on 3 separate days plus another doctor visit on Monday to see my primary care doctor, which made it 4 doctor appointments in one week. Yikes. I also had my CT chest, abdomen and pelvis done. I don't know the results yet until I see my oncologist, Dr. Neal on Wednesday.  Will post results as soon as I can.

Cutting back or out caffeine
For a few of my appointments and scans, I had to fast and not eat beforehand for at least 2-3 hours ( I had 2 7AM appointments). So, for 2 of those morning appointments, I didn't drink any coffee and for most of the day, I didn't have chest pains or heart palpitations. My rapid heart beat pretty much was gone or I didn't feel the many episodes of it all throughout the day like I did for the past 2 weeks where I had coffee every morning. Hmm, I hope cutting out the coffee or caffeine works and I won't have these rapid heart beat issues anymore.  I really want to head back to my gym workout routine again, but it's hard with work getting so busy.

Happy Father's Day
Today is Father's day, and I want to wish all the Father's a wonderful, Happy Father's day! To my hubby, Happy's Father's day and thank you for all your support, love and help with being an awesome Dad to the kids! Thanks for all the hard work with being there for them and caring for them.

The kids are doing great with their activities. With the hot weather, the kids especially love their Sunday swimming lessons. Emma and Ellen will start their summer school sessions next week and I hope they will enjoy it. I'm a little nervous for Emma since it'll be her first day ever at going to preschool..Lots of Love.

Brain MRI Results, Raid Heartbeat

Last Friday, June 8, I woke up early to get my 45 minutes of Brain MRI and then drove over to the Stanford main hospital campus to meet with my neurosurgeon and radiology oncology to go over the findings. Of all scans, the brain MRI is the once I dislike the most due to the loud knocking sounds and having to stay still in the "dungeon" donut circular machine for so long and laying straight on your back on the hard surface for so long and of course being shoot up yucky contrast via my power port. 

MRI Results

I haven't officially read the results from my brain MRI scans, but from what the neurosurgeon and radiologist's discussion with me, it's good news and bad news. The good news is that from an initial look at the scans, my neurosurgeon, Dr. Chang, told me that the 7 spots of lesions that I was treated on from the Cyberknife procedure done back in March, look pretty stable. However, he does see 1 small, new lesion spot. Him and the radiologist oncologist gave me some options to A) do a wait, watch and see approach and in 3 months do another scan or B) do another 12 minute Cyberknife radiotheraphy on the spot to zap it away to prevent it from further growth.  The sooner the treatment, the less the risk and the more effective the Cyberknife radio-theraphy would be. So, after discussing it with my hubby, (I went alone since he had to take the kids to school) and also I had to head right into work afterwards, we decided to get it treated.

So, this week, I'm all schedule to come in early at 7:30 AM Thursday to re-image my brain at closer impression to see if there's more tiny spots that could be missed and then get it treated with the Cyberknife on Friday.  As usual, I'll head right into work afterwards like last time. 

Rapid Heart Beat

One other effects that I've been experiencing is the rapid heart palpitations or heart beat. I've been feeling this for the last 3 weeks and finally I went in to see my primary care doctor today. He confirmed that I do have it and wants to me to move up my chest CT scan to see what could be causing it. So, I'll be heading to Stanford early at 7AM for it tomorrow. It's very discomforting, having to feel like I've ran a marathon or ran up a couple flights of stairs, throughout the day.  I told this to my thoracic oncologist, Dr. Neal about this side effect 2 weeks ago and again to Dr. Chang too; my neurosurgeon and since they are all specialist in separate fields, I really had to get it checked out by my primary care doctor. I hope we find out soon what's causing this and hopefully get it treated.

My concern is that sometimes with prolonged chemo infusions, it can cause congestive heart failure. Google this and this is what I found. "Heart failure doesn't mean that your heart has stopped working, or has "failed." Heart failure means that the heart is not pumping blood through your body as well as it should. "

I moved my CT of my chest, abdomen and pelvis for first thing at 7AM tomorrow so that my doctors can find out what's going and if the current chemo treatment if working. I'll post results as soon as I can. Most likely, my oncologist, Dr. Neal, won't tell me the results until next Wednesday when I see him. But, at least my primary care doctor, Dr. Shen will find out what could be causing my rapid heart beat.

I'll leave it to my team of doctors to help treat me. If anything happens, I just wanted to always say that I'm so thankful for my family, my kids, my friends, my neighborhood friends, my wonderful team of colleagues at work and for everyone's support.  I'm so blessed to have a wonderful husband and for my beautiful kids. Like any mom, I'm just so sad to have what I have and that I may not be there to see, protect, nurture, lead and be there for my kids for their future..

In any case, I'm still fighting as hard as I can and praying for all the best, for a miracle every day...Wish us well. Lots of Love.

Got Chemo last week

Last Wednesday, May 30 I did qualify to get chemo. My good friend, Liz also came along to offer support. As always, I'm just thankful for my good friends who can come along with me at least once a month to keep me company and for moral support. I wasn't even sure I would qualify for it since I've been feeling just a little weak and some anxiety since I've been feeling a little bone, back and right chest achiness everywhere. Perhaps with the announcements of a few fellow lung cancer survivor member's sudden passing, I've been a bit more worried myself. Not only that, since I've been getting more frequent "hot" flashes and especially with the little pain on my right shoulder blade and bones, something tells me that perhaps this chemo regimen may not be effective any longer. So due to these symptoms, instead of waiting until July to do a CT scan, my Dr. has asked me to do one in the next 3 weeks.

ROS1 and ALK Mutations

When I saw my Dr, he mentioned that we're still awaiting mutation results for the ROS1 and possibly another second opinion at re-looking at whether I could have the ALK mutation. Hmm, I really hope and pray that miraculously, I do have one of these lung cancer known genetic mutation so that I can qualify to take the FDA lung cancer treating pill called Crizotinib, brand name Xalkori.  If I have the ROS1 mutation, he mentioned about entering a trial in Southern CA so that I can participate in order to take the same pill, Crizotinib. ROS1 rearrangements tend to occur in younger, non-smoking NSCLC patients and that clinical trials shows that ROS1-positive NSCLC patients may benefit from crizotinib therapy. 

Prayers

 Wouldn't that be a miracle that I can take this pill and become cancer free someday just like many other Lung cancer survivors!? I'll be praying for this miracle, so Lord, God, please bless me with your healing powers, with this miracle recovery. The kids and I pray every night for my recovery, and it's just so endearing and loving..even Emma prays for "Mama's cancer to go away" and that she says, "I need my Mamma, God, I'm only 2 years old and to "please help my Mama get better, please God, thank you God" and then she ends it with "Amen."

3 month follow up brain MRI

My 3 month brain MRI is coming up this upcoming Friday, June 8. I'll have to swing in early to get my MRI and then will see my Brain neurosurgeon doctor afterwards to find out the results from my brain Cyberknife radio-therapy that I had back in March.  I'll try to post results when I find out..let's hope for good news. After that, I'll head right into work.  

Kids starting summer school

The kids are keeping busy with their end of school sessions and then will transition right onto their summer sessions after this coming week. Ethan's still in Kumon, gymnastics, swimming and will be attending 1 week of day camp after kindergarten ends and then will enter his 6 week summer class from 9AM-3PM. Ellen will still continue her Mon through Friday morning preschool from 9-12.  As for Emma, she seems really delighted to attend preschool too and so we're still debating about possibly letting her attend Tues & Thurs from 9AM-12PM..but it may be too soon for her...and the girls still have their Sat dance and Sunday swimming classes too. So yup, they're busy for the summer.

On other note, we're glad to be having one of Jason's student help us on a partial volunteer/pay 1:1 tutoring with Ethan and Ellen with their academics.  She'll be starting this coming week. Thanks to Jason for his help, the kids are so excited to be working with her!  

To all my fellow readers, supporters, cancer fighters, thank you for all your support and keep us in your prayers for good news. As Matt, one of my online lung cancer fighter survivor says in all his emails to me, "Find it, Treat it-Live!" Lots of Love.