Evolving Plans

Friends and Family,

I’ll start off with the good news. Thank you for all your prayers and positive thoughts – we got the result we were hoping for. The cancer did not convert, so it is still non-small cell! Thank goodness for not-so-small favors. 😊

Our plans have otherwise been shaken up since I last wrote. I planned to start chemo last Friday, but my platelet count was too low, making chemo unsafe. Genevieve and I came around to the idea that it wouldn’t be so bad that we would have to wait another week until my body had time to recover from having fluid drained off both lungs, and from the one-and-done radiation to such a large section of my spine the week before.

Chemo was rescheduled for today, but this time my latest platelet count was even lower. That’s when Dr. Sanborn spelled out the realities of where we are at this point.

I didn’t know that my last biopsy showed that the cancer had gotten into my bone marrow. The cancer is now interfering with platelet production, which occurs in the bone marrow. Without chemo, we can’t kill the cancer in the marrow, and the platelets will continue dropping. That would put me at risk of an unstoppable nose bleed (I had one last week for three and a half hours), or some other bleeding event. However, if it works, it will kill the cancer in the marrow, and I will start to recover.

We had reached a now-or-never moment. If I didn’t do chemo today, there could be no other treatment options.

Genevieve and I agreed to take the risk. Today I had two chemo drugs, including a reduced dose of carboplatin along with Alimta. I’ll have a blood draw each week to see how my platelets are holding up. If all goes well, in three weeks I’ll have the next round of chemo.

Just to complicate things, this Friday I will have a drain put into my chest so that we can drain the fluid off as needed. It’s building up again.

Today is the birthday of the love of my life. When chemo got rescheduled for today, plans for lunch with her son, our granddaughter, and her twin sister were instantly set aside. I felt sad about taking away from Genevieve’s special day. But Genevieve reacted in a way that reminded me again just how amazing she is.

She instantly said, “What a great gift for my birthday!”  

Genevieve is the most incredible human being I have ever been privileged enough to have in my life.

Happy birthday, my love.

Dann

Latest CT Results: My Streak is Over

Friends and Family,

After six years and four months on Tagrisso, there has been a small amount of growth in one of the spots in my lungs. The change is small, but packs a wallop. This oblong tumor is now just a millimeter longer than four months ago.  For comparison, a millimeter is about the thickness of a credit card.

That small change isn’t even noticeable in my breathing, so the only issue is what it means for the future. The drug will still work to some degree for a while, but now there is an end in sight. Before this, Genevieve and I could dream about how much longer this good luck streak could hold out.

The plan from here is to get a PET scan in another 6-8 weeks. For this type of scan, radioactive sugar molecules will be injected into my veins. Those molecules congregate where there is cell hyperactivity … meaning where there is active cancer. They “light up” the cancer, so the radiologist can see if it has spread to other spots in my lungs, or other parts of the body.

The best case scenario would be if the scan shows that just the one spot, or even a few spots, are growing. If that happens, I’ll get radiation only to those spots, and we’ll kick the can down the road a little further.

If there are too many spots for radiation, I will be pressing my oncologist for a new biopsy. This is because the only way to know how the cancer is mutating, and what treatments may work, is with a new biopsy.

It’s slightly comforting to know that usually when the cancer starts growing again for people on Tagrisso, it grows slowly. This takes some of the panic out of figuring out what the next treatment will be. It also gives more time to look into clinical trials and get a second opinion if there isn’t a clear course of action after the biopsy.

I’ve been extremely fortunate to go more than five years longer than the average time on Tagrisso before having progression. The goal is always to buy more time, and make each treatment last as long as possible, so the next treatment will be developed by the time I need it. New lung cancer treatments are coming out so fast that I just need some luck and some time to keep outrunning the monster. So far, this has worked incredibly well. Here we are, almost fifteen years after I was first diagnosed. At that time, my life expectancy was months.  

This has been hard news for us to take, but not completely devastating. Each time cancer starts growing again, it’s like a mini-grief episode, combined with fear of what will happen next. That’s why it has taken me a week to write to you. I’ve needed time to process it. But I think I’m getting there. The word that keeps coming up for me these past few days has been “grateful.” I’ve had so much more time and quality of life than most with this diagnosis, and I’m not done yet.

So that’s my word for the day: Grateful.

Feel free to make it yours.

Love,

Dann

What's in Your Smoothie?

Friends and Family,

The question I get most often these days from other survivors is about my diet, and it’s not because I’m a master chef. My cooking is a little less Wolfgang Puck, and a little more Bizarre Foods with Andrew Zimmern. But when you are still alive with Stage IV lung cancer fourteen years after being diagnosed, people want to know why.

Most survivors are convinced it must be what I eat. I think that’s partly true, but there is much more to it. There are many other factors that are at least as important for all of us, like having loving relationships, and a great attitude. And removing the “cancers” from our lives. Having a purpose greater than ourselves. Exercise. Being your own advocate. Spirituality. There are so many things that I think are part of what works that I could write a book about it. Oh, wait! I did that already! You can find it on Amazon by clicking here.        

But let’s get to what you asked for. Here is my smoothie recipe:

·         8-10 ounces of milk or water (Discussion below.)

·         1 dollop of yogurt (*May be counterproductive if you are on immunotherapy. See below.)

·         1 splash of olive oil (Carries the goodies across the blood-brain barrier.)

·         1 scoop protein powder (I find chocolate hides the taste – of everything – better.)

·         2+ tablespoons turmeric (Laboratory studies have shown curcumin has anti-cancer effects on cancer cells.)

·         1 rounded tablespoon cinnamon (Reduces cell inflammation and lowers blood sugar.)

·         1 heaping tablespoon golden flax seed (Multiple benefits – see below.)

·         1 tablespoon reishi mushroom extract: (May have direct lung cancer-fighting as well as immune-supporting effects.)

·         1 tablespoon cordyceps mushroom extract (May have direct lung cancer-fighting as well as immune-supporting effects.)

·         1 handful of spinach, celery, or other greens (Easy way to get in another serving of greens.)

·         About 12-ish fresh ground peppercorns (High in antioxidants, anti-inflammatory, helps with blood sugar, may make chemo more effective, direct cancer-fighting, boosts absorption of nutrients like calcium and curcumin.)

Drink quickly to avoid settling, and to make it easier on your taste buds. You may also want a water chaser nearby.

Whether you can handle all of this in one drink may depend on your blender. If you have a super-blender like a Vitamix or a Blendtec, life gets easier. Our Blendtec pulverizes everything into a creamy smooth drink with no gross lumps. If your blender doesn’t do this, you may want to skip the greens. You will also need to blend the peppercorns and flaxseed in a coffee grinder separately. Grinding the pepper is what releases the piperine, which is the active ingredient in pepper. The flax seeds can pass right through your system whole if it isn’t ground.

Here is the semi-happy end result:

HERE IS WHY I USE THESE INGREDIENTS:

Dairy is a controversial topic in the lung cancer community, and I have yet to find any definitive answer. I gave up all dairy for a while, until my friend Laura Greco sent me a research article about the BENEFITS of milk. Benefits! You had me at ice cream. I couldn’t find that article for this story, but I did find an updated research article here. Without a consensus on the topic, I finally decided that if it ain’t broke, don’t fix it. I was stable, so I was going to have my dairy.

The yogurt adds probiotics to promote immune health. NOTE: THIS IS POSSIBLY COUNTER-PRODUCTIVE IF YOU ARE ON IMMUNOTHERAPY. Here’s an article on the subject. You may want to do our own research on this.

I use protein powder because as a vegetarian, it can be hard to get enough protein in my meals. Note that even though the protein powder is made with a milk derivative, whey isolates, there is a negligible amount of casein in it. Casein is the suspect culprit in milk, for those concerned about its effects on lung cancer. Research your particular brand to be sure.

Here is just one of the many articles on the cancer-fighting benefits of turmeric (curcumin).

Cinnamon is showing up more and more as a direct anti-lung cancer agent. See just a couple of the articles here and here. It is also anti-oxidant, anti-inflammatory, and lowers blood sugar levels. See here for just one more article about this.

Flaxseed has been shown to reduce tumor growth in breast and colon cancer. It also has omega-3  fatty acids, which reduce cancer-causing inflammation and makes it easier to tolerate heart-related side effects of radiation and chemo. Here’s a short article on the subject. It has fiber, which helps regulate blood sugar, which also helps fight cancer. There are other heart, blood pressure, cholesterol, and even eye benefits. Some people have to build up to their maximum amount because of possible bloating, gas, and diarrhea. Here are other possible risks and benefits.  I choose golden flaxseed because I like the taste better than brown.

Mushroom extract is coming more into awareness in the lung cancer community. I found a meta-study, meaning a study that summarizes all the other credible studies, on the use of mushroom extracts in fighting cancer. The results were favorable for both reishi and cordyceps mushroom extracts. Here it is. While I was trying to dig up this article, I found plenty of others about different mushroom extracts such as this one and this one. As a result of this research, I found one other mushroom extract, turkey tail, that I am adding to my smoothie. It’s because of articles like this.

Peppercorns (black pepper) contain the active ingredient piperine. Piperine is released when the pepper is ground, so grind it fresh each time to get the full benefit. Here is a nice article that describes those benefits. However, piperine can interact with medications, may have anti-platelet effects, and possibly other issues. See this caution if you have concerns.  

Now that I’ve shown you mine, how about if you show me yours?

What ingredients do you add to your smoothie that aren’t listed above? Why? Bonus points for a link to the research. Just click “Comment” at the bottom of this post. PLEASE POST HERE RATHER THAN FACEBOOK if possible, so I can keep all the ideas in one place.

Love,

Dann