Joel – Page 3 – F'Cancer!

A spoonful of sugar helps the medicine go down

OK, truth be told … there is no consuming a spoonful of sugar. But I did realize that through my past posts, I have not really talked about what my treatment is. I am doing a variety of things.

#1 – Afatinib – my little blue pill! This is my prescription based on my being EGFR. One blue pill a day. Yep, I know what you are thinking, no it does not help me get an erection. Luckily that is one issue I don’t have. TMI? OK, let’s move on. I take this pill, once every morning. Side effects are a bit much at times, but heck, if it is shrinking my cancer, I will deal with the side effects.

#2 – Cannabis Drops, I put these under my tongue every night. It is suggested I do this multiple times a day. But given this is equal parts CBD and THC, it does get me pretty darn high from time to time. Most of the time, I take these drops after 9pm, so I am generally in bed before the “high” kicks in. But sometimes I take it earlier in the evening and I do get a bit high before bed. As far as the suggested, taking throughout the day … I do work / I do drive. Unfortunately, I am not one of those people that can function stoned throughout the day.

#3 – Xgeva Injection – this happens every 4 weeks. Given my cancer spread to my spine (lung cancer likes bone), Xgeva is a bone hardener. With my bones hardened, it deters the cancer from spreading in the bone.

#4 – Calcium Supplement – Again to help with my bones.

#5 – Immodium & Fiber supplements – yep, a daily thing to help with the diarrhea side effect of Afatinib.

#5 – Diet – I have improved my diet. Incorporated more vegetables. I don’t drink sodas,. I cut down on sugar. I am trying to eat healthier in general. I have not gone overboard. But I have improved what I eat. I still drink, have dessert, still do all of my normal stuff, but I have scaled back. I also drink lots of coconut water, I like suja drinks, and the list goes on. This will be a work in progress. I will continue to improve.

That there is the basics of what I am doing!

Cannabis drops & Afatinib

I don’t always know who knows, you know?

So this happens to me at least once a week. Mostly happens at the ball park or the grocery store. Someone comes up to me and asks, “how are you doing?” A fairly simple question to which I almost always answer, “I am doing really good.” Then shortly after that brief encounter, I then wonder, “do they know I have lung cancer?” Then as soon as I am talking to Mo, I ask her if they know of my situation – and the answer is usually yes. While I know who I have told … I don’t always remember who Mo has told. I also am not aware of who has been told by others. So when I get the ambiguous “how are you doing?” question, I am just gonna do the simple “doing good” response. I am almost in need of a secret code word for people to use with me to let me know that they know I have cancer … a “Tippy Toe” if you will. Heck, let’s just go with “Tippy Toe”, it was good enough for George and Jerry, it can be good enough for me.

Exciting things are happening in the world of cancer

Exciting things are happening in the world of cancer.

In the past months … 3 stories have made the mainstream media, there are other discoveries / findings … lots of exciting things are happening, but here are 3 of the more popular.

THE FIRST of these does not really apply to those with EGFR, but who knows, while immunotherapy does not really work with EGFR patients, who knows? These findings could result in add’l findings that could very well help EGFR.

THE SECOND of these does also does not apply to EGFR as it is again, an immunotherapy, but way to go Cuba with what you are doing in the fight against lung cancer:

https://www.huffingtonpost.com/2016/02/22/cuba-lung-cancer-vaccine_n_7267518.html

THE THIRD one applies not only to cancer, but possibly to all disease. CRISPR sounds amazing! First post is about CRISPR and the 2nd post is the story they did on 60 Minutes:

https://www.nature.com/news/first-crispr-clinical-trial-gets-green-light-from-us-panel-1.20137

https://www.cbsnews.com/news/crispr-the-gene-editing-tool-revolutionizing-biomedical-research/

it is a tough decision … thanks to all who are searching for a cure for cancer and are not changing their direction for sex robots.

Who doesn’t love trivia?

I am a random trivia kind of guy … not that I would call this trivia, I just thought I would share some of the things I have learned.

• Average age for lung cancer diagnosis is 70.

• 1 in 12 men who develop lung cancer have not smoked a single cigarette.

• 1 in 14 men will get diagnosed with lung cancer in their lifetime.

• 2% of lung cancer patients are younger than 45 (mind you I was 47 at my time of diagnosis).

• An EGFR mutation is present in roughly 15 percent of people with lung cancer in the United States.

• EGFR mutations are more common in women than men.

• EGFR mutations are often found in never smokers or people who smoked only lightly. (A never-smoker is defined as someone who has smoked 100 or fewer cigarettes over their lifetime.) While 15 percent of lung cancers overall express EGFR, lung cancers in non-smokers are much more likely to have this mutation.

• EGFR mutations are more common in young adults with lung cancer. (EGFR mutations are present in roughly 50 percent of lung cancers in young adults.)

• Non-small cell lung cancer is the most common form of lung cancer, and the type of lung cancer most commonly found in women, non-smokers, and young adults.

I thought I would find more statistics to share … I will look for more … but for now, this is what I have.

And as always … F’ Cancer!

Did you say no activity in my spine?

On April 18, 2018, I finally got my first PET Scan. While I apparently have good insurance (so I am told), they have denied my getting a PET Scan on more than one occasion, stating that it is “not needed”. Up to this point, we just substituted with Bone Scans. But apparently there is info that a PET Scan will give us info that a Bone Scan will not. Jennifer (my NP), at least I think it was here … it was either her or Dr. Bazhenova, they talked to my insurance company and got them to approve it. I was excited, but not sure why. I had quite a few people ask me to let them know the results. The thing was, I was not sure if there would actually be anything to report. After all, this was my first PET Scan and there is no previous PET Scan to compare this one to. So as the day of the PET Scan progressed, no news came. Now up to this point, I have been very spoiled. Dr. Bazhenova or Jennifer almost always get back to me the same day of every other scan. It is still crazy to me that they get me results so fast … if the scan is in the morning, I get the results on the same day. If the scan is in the afternoon, they still sometimes get me results on same day, but sometimes it is the next morning. So by Friday, I messaged Jennifer & Dr. Bazhenova … that night (5:08pm), I got this MyChart message from Dr. Bazhenova:

Looks clear, Bone areas does not pick up PET contrasts, so no active tumor. I am happy with your PET.
Dr. Bazhenova

This sounds really great … but does this mean what I think it means … well, it looks good, I will just wait til my next appointment on Wed, after all, that is just 5 days away. Then on Sunday morning, I got this text from Jennifer:

Hi Joel! Sorry- I wasn’t able to get online until today. However ur PET scan looks great! The bones show sclerotic and treated lytic lesions with no evidence of any cancer activity – so this is good! and no new bone disease. Also confirms the left nodule in the lung has decreased. All is great! Enjoy ur guys Sunday and see you this week!

OK, this sounds even better … does it mean what I really think it means? After all, in the beginning, I was told I had somewhere between 6 & 8 lesions in my spine. Heck! the one larger lesion is the little bastard that caused me so much pain, led me to the hospital and thus getting my cancer diagnosis. Am I really reading this correctly? “No evidence of any cancer activity.” Well, I will be to the doctor on Wed, I will just get confirmation then. I am not going to spread this news too much just yet, I want to make sure 100% that I understand what they are telling me.

Wednesday morning comes (April 28, 2018), this appointment was with Jennifer only. Sometimes my appointment is with only Dr. Bazhenova, sometimes I get only Jennifer, and most of the time, I get them both. I don’t ever know who I will get until they walk into the examination room. And this is totally fine, I love them both. I really do have the best team! So we talk about all kinds of stuff cancer related, then I ask her to tell me what the PET Scan showed. I wanted to hear it. And yes, I did read this correctly. NO SIGN OF CANCER ACTIVITY IN MY SPINE! YES, I AM YELLING! FUCK YA!!! I am actually typing this 10 days after the fact and I am still in shock! I have goose bumps on my arms as I type this. ZERO CANCER ACTIVITY in my spine!!! Sorry, I have to say it one more time, FUCK YA!!!!

Support groups, the good, the bad and the ugly

So thanks to a good friend that has his own battle with cancer – he told me a while back about support groups in Facebook. Great tip! I am currently in 3 Facebook support groups. One for Lung Cancer and 2 that are more directed to EGFR. All are pretty darn good and they are private groups, which is great … meaning that my Facebook friends can’t see / don’t know that I am in these groups. This is crucial as I have not come out on Facebook with my situation. I like the EGFR ones more. The posts are less frequent (they don’t take over my Facebook wall) and they are more directed to my situation, having EGFR. The Lung Cancer support group has over 9,000 members while the 2 EGFR groups have much less (one has over 700 members and the other has over 400 members). The challenge here is some days my Facebook wall can be all “Cancer Posts”, thank goodness for the 30 day snooze in Facebook, I can easily take a break from these posts showing up on my wall. The other bummer with the Lung Cancer Support Group, having so many members, there are SOO MANY posts about people “Earning their wings”. This can take its toll on me, heck, this can take a toll on any cancer survivor (I think I prefer “cancer warrior” over “cancer survivor”). I yearn for positivity, good vibes, good posts, good news … too much death is not good for one’s keeping a positive attitude. Kinda funny, a couple of months ago, someone posted that there was just “too much death” being posted and this person while sympathetic was hoping for more positive posts. I was 100% in agreement with this person and applauded their honesty … unfortunately, not everyone agreed … WOW! that was a lot of angry Cancer people commenting on that post. I understand where they were coming from, but I also understand / relate big time with the person that made the post. Another good / bad thing about these support groups, there are a lot of people out there that are not as educated as much as I believe they should be on their situation. There are also a lot of people out there (in my opinion) that don’t have top notch doctors (from what I can see). Seeing what a lot of people post, it makes me feel SO GREAT about my support team. I shared this tidbit with Jennifer (my Nurse Practitioner) and she was kind and told me that I am much more educated on my situation than many patients are. Whether that is true or if she was just being really nice to me – I would think someone with Cancer would want to be as educated as possible about their situation, after all, we are talking about surviving / beating Cancer, why would we not want to arm ourselves with as much information as possible. Anyway, that is my shtick on Support Groups. They are so great in providing lots of information & support, but too much “cancer” on my Facebook wall is not good – just continuing to try to find that perfect balance.

Not ready to share with Facebook just yet

Sharing my battle with cancer on Facebook is something that I have given a lot of thought. Seems many / most people who get cancer, they share that information with others on Facebook. There is nothing wrong with that at all. For me though, it is something I am just not yet ready to do. I am not sure why. I do believe in the power of prayer. And of course, the more people that I have in my corner praying for me, the better. And when I tell someone about my “new normal”, it is generally a 30-45 minute conversation. So telling people is a very time consuming process. And I still have many, many friends (and family) that I have not yet told. Heck, this May 10 will mark the 6 month anniversary of my being in the ER and being told that the doctor “believes he found cancer.” For those friends who I have not yet told – it is nothing personal at all – it mostly just means that we have not been face-to-face in the last 6 months and we were not in a situation that allowed me to share with you my life-changing news. I will continue to tell people, it will just take a while. And who knows? Maybe one day I will be ready to share this with my Facebook friends, but for now, I am not ready just yet.

When you are sliding in to home and your pants are full of foam …

Probably the thing I talk most about is the side effects. This is what I dealing with the most. And quite frankly, this is probably what I bore people with the most. But taking one little blue pill a day … yep, just one little pill … one strong, wicked, cancer-fighting pill. But if given the choice of my cancer growing or dealing with side effects, I will choose side effects each and every time. What are my side effects? Well, here we go:

• Side effect #1, good ol’ diarrhea. Yep, diarrhea 2-3 times every morning and sometimes 1-2 times in the afternoon or evening. Once in a while I will get it in the midnight to 2am range. The bummer with this diarrhea, it is painful / uncomfortable. It sucks … but it is something I deal with. I take immodium and fiber supplements … but there is no getting around it, diarrhea is side effect #1. Another reason I say this is side effect #1, many times when people ask how I am doing, quite often I will mention the “dealing with my side effects” … most of the time, what I am referring to is the “my dealing with the diarrhea.”

• Side effect #2, my nose and cheeks are a bit rosy, have acne like bumps and on really fun days, I get some white heads. I am under strict instruction to not pop them, I just put on an ointment every day, and then a second ointment for the white heads.

• Scalp is a bit dry and mildly flaky … sometimes mildly itchy

• Sometimes I get a rash (painful rash) in either my arm pits and / or my groin. This is not all of the time, and when it happens, cortisone cream works fantastic!

• Dry mouth – I get this once in a while … I actually do not enjoy sparkling water anymore. I was not a big soda drinker, but I did enjoy a soda once in a while – nope, can’t do those. The carbonation gives me a burning feeling when I swallow.

• I am more prone to infections around my finger nails … this has just happened once on one finger and once on one toe. Finger nails getting brittle and skin cracking around the finger nails is apparently common, but not an issue for me luckily.

• Lucky to say, hair loss is not a side effect for the drug I am on. But my hair is a bit different. Not sure how to explain it, I think the tips of my hair is frayed … just feels a bit different and my leg hairs are affected as well, let hair seems just a bit shorter.

• Weight loss … ya, right! Unfortunately this is NOT one of my side effects. This is one that would have been nice, given I have been trying to lose weight … and then the first 3 months of my diagnosis, I was to not do much physical activity due to the one lesion in my back that was getting much too close to my spinal cord … weight loss has NOT been one of the side effects. I was at the oncologist a couple of months ago, she said to me “you have put on some weight, that is good, this tells me things are working.” I reply by telling her that I want to lose weight. She replies “then go to the gym, I cleared you for all physical activity.” … yep, that simple, I need to get to the gym more apparently. : )

• Recently I have found that I am more sensitive to spicy foods. I used to love spicy food, but not so much these days. Also, I still enjoy beer, but most of the time, especially with IPAs, I cannot finish a full beer. Half pints are my new favorite. An 8 ounce beer is perfect. Need to get more craft breweries to do half pints. I actually don’t drink nearly as much as I used to. I was not a big drinker to start … but I definitely drink a lot less now. I just don’t crave it as much!

• Energy levels are not what they used to be. I take more naps these days. Although, I often wonder, do I have less energy due to cancer? Or am I just listening to my body way more than I used to? I was talking to a buddy of mine about my loss of energy and he asked me this,”Are you sure it is the cancer that is zapping your energy? Or is it because you are getting old?” Touché!

• When I get hungry now … I definitely feel it. It is as if I can feel my blood sugar drop. Before I would just work through the hunger, or grab a diet coke and that would help suppress my appetite. But these days, I get hungry, I must eat!

• When I get tired, the first place I feel it is cramping in my lower legs, near my calf. This one has been odd to get used to. And if I get even more tired, the cramping will work its way to my upper legs.

I think this about covers it … good times with the side effects!

• UPDATE as of May 2018 … this one is new. Have not had this in the first 5-6 months … but now I have a large rash on my back … good times. It is not an attractive rash by any means … hoping this is a fluke occurrence and that it goes away soon.

By the way … this comic cracks me up so much!

Shrinkage is good

This meme below cracks me up … texted to me by a good friend, makes me smile each time I look at it. So in my treatment process, I get a Contrast CT Scan every 8 weeks. So after my initial scan, I have had 2 Contrast CT Scans since … both scans showed that my cancer is shrinking … yes, shrinkage is good! My PET Scan showed shrinkage … and I should have another Contrast CT Scan coming up soon (later this month I thought) — funny, as I type this, I realized that I don’t have my next Contrast CT Scan in my calendar and I don’t find it on my upcoming appointments in MyChart. So good thing I am doing this post, I need to check with my team on when my next Contrast CT Scan is going to be. But for now, just remember, shrinkage is a really great thing!

Blood draws, scans and injections oh my

Yep, a big part of my new normal …

• Blood draws every 4 weeks (it was every week in the beginning). Not a big deal. I don’t like watching blood come out of me, so I just look the other way. This is easy!

• Contrast CT Scans, Bone Scans, MRIs and PET Scans … these are not so much fun. Luckily Contrast CT Scans are the easiest and I do these the most. It is more of a donut than it is a tunnel. Bone Scans are also easy. The challenge with Bone Scans is the time it takes and the drinking lots of water. I show up, get injected with radioactive material, then go kill time for 3 hours. I usually go to lunch. During this time they want me to drink 8 glasses of water. I have a funny story about my first bone scan, I will share this story later in this post. PET Scans are ok, not quite a donut, but still better than the MRI tunnel. PET Scans, I get injected with radioactive material for this one too, but they have me sit in a room for 45 minutes after the injection and before the scan. And then my least favorite, MRI. This is a long tunnel, not good for my mild claustrophobia. My head is in a cage, loud noises and 45 minutes of just wanting it to be over. Oh, more fun facts on the scans. When I get a bone scan, they inform me that I am radioactive for 3 days following, so if I am to travel internationally, I will set off alarms. PET Scans I am radioactive, but apparently not for 3 days, just just tell me to no pick up babies or hug my kids for the first 6 hours after the scan. Crazy that they can inject us with radioactive material and all if fine.

• Xgeva Injections every 4 weeks. Given my cancer spread to my spine (Lung cancer likes to spread and find bone), I now get an Xgeva injection every 4 weeks. Xgeva is a bone harder. With my bones hardened, the cancer does not spread as easily. Couple of cool things about Xgeva, #1, Bone Hardener is Monique’s new indian name. The other cool thing, at least I thing it is cool, if I am to get dental work that involves a drill, I have to go off of Xgeva as the Xgeva has my bones so hard, it will break a dental drill. And yes, I did all of this bone hardening talk without nearly as many jokes as I thought I would. The other thing about Xgeva for me. My nurse, nor have the lab techs heard of this side effect with others. But always on the day of my Xgeva injection (which is usually around 10am or 11am), later that day, usually between 4pm and 5pm… I fall asleep and I fall in to a very deep sleep. In the beginning, I would sleep all night, now it causes me to fall in to a deep sleep for about 2 hours.

But yep, these blood draws, scans and injections are all part of my new normal.

Oh, and I referenced a funny story. So when I did my first Bone Scan. It was in Hillcrest, parking is so crazy down there, with 3 hours to kill, I decided to have lunch at PF Changes in Fashion Valley. I got a table for 1. I very rarely go to a sit-down restaurant by myself. I ordered a water with no ice and informed the waiter, I needed to drink 8 of these before the lunch is over. I had lunch and proceeded to drink my 8 glasses of water like instructed. On this day, I was not the brightest bulb in the box. As I started to drink glass #7, and mind you, I was very bloated at this point, I realized that I was drinking pint glasses of water. Yep, 16 ounces of water per glass. It hit me, they probably meant 8 ounce glasses of water. Yep, I was a bit of the over achiever on this one. I finished glass #7 and then asked for glass #8 in a to-go cup. I headed back to UCSD, I was way too full / way too bloated. Went to the bathroom before I left PF Changs. I went to the bathroom when I arrived at UCSD. I checked in for the scan and went to the bathroom again. When I checked in, I confirmed that they were talking about 8 ounce glasses, the guy behind the counter was like “ya, that is fine” … I told him what I did, we both laughed. We did the scan, at about 20 minutes, he had to stop, do something, then we had 10 minutes of scan left to do. I asked him during this break, ok to go to the bathroom again, He was fine with that. So next time … 64 ounces of water to drink … NOT 128 ounces. Boy, i will never make that mistake again. But water is good for me, right!?!

Oh, Funny Story #2 – At least I think it is funny. During one of my blood draws, they laid out 7 vials (see picture below)… normally it is just 3-4 vials. I was minorly freaked out. I asked her if 7 vials was correct. She said it was. I told her 7 was my record. She did not miss a beat, she then responded by telling me her record was __ (unfortunately now I don’t remember what her record was, but it was something like 25 or 28) … I just responded to her and said, well, my record is 7.