2024 Archives

11/19/24

No, I have not given up on updating this blog ... I have just been taking a long, sober look at what it means to be in remission. It does NOT mean I am cured or that my cancer has disappeared; it's just not advancing through my body as it was before (metastatic), which is what is meant by NED (no evidence of new disease).

I also don't have as many appointments as I've had before, when it seemed I was visiting doctors and other practitioners every week and had plenty of regular updates. So there may be gaps in my blog reports. But I still get plenty of medical attention.

In addition to my primary care physician (PCP), Dr. Burton, who I generally see every six months, I have two oncologists. The radiation oncologist, Dr. Reshko, is the one who said I am in remission and NED, based on the recent CT and PET scan results. My primary oncologist, Dr. DeRidder, looked at my test results and said "remission" is not the word she would use because people tend to think it means they have no more cancer. What she said is the cancer is "controlled," and there is no evidence that anything is worse. It's a slightly more grounded way of looking at it, and I accept that.

So now that I am in the NED stage, instead of seeing Dr. DeRidder every three/four weeks as I have for the past year and a half, I will see her every six weeks. In between, however, at the three-week mark, I will see the nurse practitioner, just to make sure I feel ok (which I do) and not experiencing any new side effects. I will continue to go for labs regularly so they can keep track of my levels, and I will also continue to get my port flushed every few weeks. Oh, and my next CT scan is scheduled for Dec. 20. That's how we'll make sure that I am still NED and nothing new has flared up.

I want to reiterate how grateful I am to all who have prayed for me, sent me cards and texts and gifts, visited me and otherwise let me know that you're thinking of me. I have embraced it all, and I believe it has played a huge role in my progress. I feel good, I even like what I see in the mirror, and my hair is growing! I thank God for his care of me through the love of family and friends.

I'll update after the next CT scan.

10/18/24

Good news ... I AM IN REMISSION!  Hallelujah, happy dance and praise the Lord!

I met with the radiation oncologist today and we reviewed my recent PET scan and CT scan reports. I was braced for troubling news because the language in the PET scan report said "new increasing size of lung nodule, needs reassessment." But Dr. Reshko said he assessed it, and there was NO NEW CANCER. In fact, what had been evident before is now barely there. What the scan does show is some scar tissue and/or inflammation in the area of a previous nodule that was successfully treated with radiosurgery, but in his words, "there is nothing there." He also gave me printouts of the scans from January and October for comparison. The bottom line, he said, is I am NED -- no evidence of (new) disease!

Here are his after-visit notes: "Fortunately, the PET scan showed no evidence of active disease and in fact shows interval improvement in the inflammation in the left lower lobe as well as the middle lobe. The treated left upper lobe nodule completely resolved. This is consistent with a complete response to SBRT.  Ms. Bridges is doing very well clinically.  Other than a cough, she is really doing quite well and is very functional. ... I am very happy with the outcome."

Hallelujah, happy dance and praise the Lord!

Does this mean my cancer has disappeared? Not entirely. Remission does not mean the cancer is cured; in fact, I have trace amounts of it still in my lungs and other places. Cancer cells can remain in the body for many years after treatment and there's a chance they could flare up again. But on this day, October 18, 2024, I AM IN REMISSION!

What it DOES mean is that the Tagrisso is working. Hallelujah, happy dance and praise the Lord! (Do I sound excited?) Tagrisso is the oral chemo tablet I've been taking for the past year as treatment for my cancer, and although it comes with a sobering list of side effects (including an impact on kidney function), its job is to slow or stop the growth of cancer cells.

Ironically, I received a letter from AstraZeneca, the maker of Tagrisso, just the other day stating that I am no longer eligible for the grant program that has partially paid for this expensive drug because they changed the eligibility requirement (from 500% at or below the federal poverty level to 300%) and I no longer meet the criteria. That, along with changes to Medicare benefits, means I may have a higher out-of-pocket cost, up to $2,000 per year. All things considered, that's not prohibitive, as long as I can spread it out through the year. Also, it's tax deductible, so that might help mitigate the expense.

In addition to the recent scans, I've also had two other medical visits: the podiatrist and the opthamologist. The podiatrist has been treating my Morton's neuroma, which is an irritating nerve disorder in my left foot. I also have another possible ingrown toenail that may need to be removed. As for the opthamologist, he pronounced my eyesight "stable" (one of my favorite words).

Overall, I am doing well medically and I feel pretty good, other than the usual fatigue that comes with the Tagrisso. The fight against cancer takes a lot out of you, as anyone who has battled against it or loves someone who has battled it knows. But I'm here for the fight and I give all glory and honor to God. And today, October 18, 2024, I AM IN REMISSION!

Hallelujah, happy dance and praise the Lord!

10/2/24

I visited my primary oncologist today, and there's a mix of both good news and concerning news.

First, the good news. According to the radiology report from the CT scan I had a couple of days ago, "for the most part, all previously seen lesions are stable or slightly smaller," and then goes on to say that this stability "is reassuring and suggests treated disease." From my perspective, that's GREAT news. I especially like the words "slightly smaller." The bottom line, says my oncologist, is that the Tagrisso oral treatment is working. Hallelujah!!

But the concerning news is that the report goes on to say that "there is one nodule noted inferiorly in the left upper lobe which appears to have enlarged. This may represent an active neoplastic process."  Loosely translated, that means there's a possible new tumor. My oncologist has scheduled me for a deeper diagnostic test, a PET scan, which will require an injection of a material to light up the areas where any cancer exists. If the test reveals a new malignant area, I will likely need another round of radiation treatment targeted specifically to the area. We'll cross that bridge when we get to it.

That's not all. There was one small comment in the radiology report that gave me pause: "minimal multi-vessel coronary arthrosclerotic vascular calcification." I know that coronary means heart, but it was the word "arthrosclerotic" that caught my eye because my son's autopsy report revealed that he died from atherosclerosis. My oncologist immediately calmed my fear by saying it's related to my high cholesterol, for which I'm being treated. (Robert apparently didn't know he had cholesterol or coronary issues and was therefore not being treated for either.) Nevertheless, I dropped a note to my cardiologist to share my concern.

A little update on my creatinine level (kidney function): I visited the nephrologist (kidney doctor) who I was referred to, and he said my medical record indicated to him that "you are strong and you are a fighter." Not sure how he could discern that from reviewing the record, but I'll take it. He also said that instead of the standard range that is indicated for creatinine level (0.44 - 1.03), my "normal" range is 1.3 - 1.6, because it takes into consideration my age, high blood pressure and cancer. Therefore, my last reading of 1.52 falls within range and is "acceptable." That's a relief!

But then the nephrologist went on to say the record also indicated that I've had a decrease in kidney function since 2018, which, quite honestly, no one had ever said to me before or I would have asked "what are we going to do about it?" I put that question to the nephrologist, and he said we will continue to watch it, come back in four months, and if is above the the range, medication may be in order. Not what I wanted to hear. The last thing I want is another pill.

I also asked my oncologist about it, and she pulled up the graphic showing my creatinine level through the years and said the changes were so incremental that they were not likely to be spotted (or noted) by anyone except a nephrologist. In fact, the graph went up and down in a somewhat consistent manner from 2018 to 2023, when it took a sharp spike specifically as a result of the Tagrisso.

A decrease in kidney function is a side effect of Tagrisso, and it's definitely something that needs to be watched. But if I have to choose between a perfectly functioning kidney or a fight to keep this cancer at bay, I choose the fight. So we'll just keep watching and I'll keep drinking lots of water to help keep my kidneys flushed.

The PET scan is scheduled for Oct. 16. My next update will likely be when I have some results from that.

9/14/24

My mother used to say "no news is good news." And that's how I feel about yesterday's (Sept. 13) visit with my primary oncologist, Dr. DeRidder. At one point she pronounced me "OK," and then by the end of our conversation she said "I think you've done really well."

I went over all my "littles" with her (including a little bit of reflux along with sporadic coughing) and we reviewed my recent tests (MRI, bone density), and other than increased fracture risk due to osteoporosis, my journey is on a stable track. My next CT scan is scheduled for Sept. 30, and I will see Dr. D again on Oct. 2.

And my creatinine level (kidney function)? Well, the measure has taken a dive, which is a good thing. In August, it was 1.88, high enough to trigger an appointment with a nephrologist (Sept. 24). But my recent blood work shows it's gone down to 1.22. Anything at or below 1.03 is good. I'm still just a bit above range, though, so perhaps the kidney doctor can shed some light on the recent fluctuations.

I got a nice gift from AstraZeneca, the pharmaceutical company that makes my Tagrisso (oral treatment tablet). I'm nearing the one-year mark for being on the cancer-fighting drug and recently renewed my grant application to help pay for the medication for another year. In return, they sent me a really nice lunchbox containing a water bottle for hot and cold beverages, a cloth mask, a pill box and an interesting cookbook called "The Cancer Wellness Cookbook." I'm not much of a cook, but these look like fairly easy recipes. I'll have to try a few.

The lunchbox also contained a booklet about Tagrisso, which included this tidbit: "Tagrisso is a targeted therapy -- not immunotherapy or standard chemotherapy." It also affirms that the most common side effects of Tagrisso are low red and white blood cell counts, low platelet counts, diarrhea, rash, bone or joint pain, brittle fingernails, dry skin, mouth sores, tiredness and cough. With the exception of mouth sores, I've experienced all of these, so it goes a long way to explain why I so often feel sluggish and as of late, have to stay near a bathroom. BUT, as long as the cancer is blocked from growing and spreading, which is what Tagrisso does, then I can tolerate a few side effects.

My next visit to the oncologist is Oct. 2, and unless something significant happens before that, it will likely be my next update.

9/4/24

No sooner did I say "no substantial change in my health" than change started to happen. Nothing major -- just a little incontinence here, a little back pain there, and added doses of fatigue and coughing -- just enough to remind me that I'm not 100%. I've also lost about seven pounds, which from my standpoint is not bad. My appetite has dropped off and I simply don't eat as much as before, although I do tend to nibble. But my oncologist says if I lose more than 10 pounds we have to start looking into what's going on.

One major change is my creatinine level. This is a measure of kidney function, and unfortunately, mine has been flagged as problematic. The main culprit is the Tagrisso, the oral chemo tablet that I take daily. A drop in kidney function is a side effect and not necessarily grounds for discontinuing the medication, but like everything else, it has to be watched.

Here's the in-the-weeds detail: The creatinine level is measured by blood test, and the normal range is 0.44 to 1.03. Mine is 1.88, with incremental upticks from 1.36 in May. Once it got past 1.6 (August), it triggered an automatic "stage 3 kidney disease" alert in my medical chart, and that's what got my oncologist's attention. She has referred me to a nephrologist (kidney doctor) and that appointment is set for Sept. 24. It will probably mean I have to start taking another pill to offset the Tagrisso. But the bottom line always for me is fighting the cancer progression. So if the Tagrisso is doing that (which it has for nearly a year now), then I'll add another pill to my daily regimen of other prescriptions and supplements.

My next appointment with the oncologist is Friday, Sept. 13. I'll post an update after that.

8/24/24

As one friend reminded me: no news is good news! There has been no substantial change in my health since my last update, so I won't linger here. Just a couple of quick points:

First, I met with the dietician, Lynn, who recommended that I add a Metamucil gummy to my daily regimen to help move things along, if you get my drift. It's been about a week now and that seems to have made a difference. Lynn also suggested adding more fiber and fluid to my diet. That's an ongoing process.

Second, I met with the nurse practitioner, Kelly, who pronounced me as "doing great." I still get a little lightheadedness (in fact, I'm having a bout right now), I find myself fatigued more than I like, and my fingernails have gone completely brittle. But Kelly suggested these are side effects from my oral cancer drug (Tagrisso) that may come and go with time. I consider them minor compared to some of the side effects I could be having (I still have my hair!) as long as the Tagrisso is fighting the battle against cancer progression.

My next appointment with the oncologist is Sept. 13. I'll probably post another update after that.

8/13/24

My cancer journey started a year ago this month. In the space of two weeks during the heat of August 2023, I went from reporting my shortness of breath and lower back pain to my primary care physician (PCP), to chest X-ray, to pulmonologist, to CT scan, to biopsy, to PET scan, to "you have metastatic lung cancer, stage 4 ... it's treatable, but not curable."

The easy-breezy retirement life I'd been planning for so long was upended all at once. I went from sleeping late and being one of the "ladies who lunch" to back-to-back radiation treatments and doctor appointments. I'm grateful for the speed with which Riverside Health System jumped into taking care of me; I have a wonderfully compassionate care team. Good insurance doesn't hurt (Medicare and Anthem supplement). The pace is a bit slower now, but still requires a great deal of attention. It's been no easy ride for hubby, either, who sprung into action as chauffeur and second set of ears. But he never ever complains; in fact, he's quite good at bringing me ice cream.

Just this month alone, I've seen my oncologist and my PCP, had a lumbar MRI and bone density test, got my six-month Covid booster, and met with a new podiatrist. And this month hasn't even reached the halfway point! But I also had a great time tuning into the Olympics. What a great show Paris put on ... and Team USA rocked the joint across the board!

Here's a summary of all that's happened since my last post:

• Of all the "littles," my oncologist was most concerned with two of them -- my occasional (and kaleidoscopic) lightheadedness and my sudden (but short-lived) incontinence. She recommended I ask my PCP to lower the dosage on one of my blood pressure medications (metoprolol) because the readings have been so low it could be a contributing factor to lightheadedness. My BP reading that day, for example, was 105/65. She also wants me to see the dietician to make sure nothing I'm eating (or not eating) could be a factor. Additionally, she sent me for a lumbar MRI to make sure no new mass was pressing against my bladder, although any new signs of cancer progression would have shown up in my last PET scan in mid-July.

• The PCP said she didn't want to lower the metoprolol because the dosage only goes down (or up) in 100-mg increments, and she thought that might trigger an unwanted increase in my heart rate. But she did suggest I try half doses of my other BP medication, olmesartan. So we'll see if that helps. She also recommended I start taking fish oil to help lower my triglycerides.

• The MRI report came back saying "no evidence of active neoplasia in the lumbar spine," which means no new signs of cancer in that area, although I do have arthritis. The incontinence episodes have stopped; I have enough time to dash to the bathroom if I don't dally.

• My PCP also sent me for a bone density scan for my osteoporosis, which I've had for more than 20 years. I usually get a scan every two years; the last one was in 2022. The result came back saying I have a "significantly increased fracture risk," so I need to be extra careful about stepping off curbs and other hazards that could lead to falls.

• The podiatrist I'd been seeing for the past eight years or so (and who is not part of Riverside) seems to be stuck on me considering bunion surgery as the primary solution to recurring pain in my left foot. I've never warmed to the idea, and now that I'm fighting cancer, I definitely believe foot surgery is out of the question. My oncologist agreed and sent me to a different podiatrist who poked around a little and discovered what he thinks is the problem: Morton's neuroma, which as the term suggests is akin to a pinched nerve. I had a similar diagnosis about 15 years ago, when I was advised to stop wearing heels. I haven't worn heels since then, but the neuroma is back. Thankfully, the treatment is NOT surgery but updating my shoe inserts and taking a short-term medication. I probably need to get some better-fitting shoes, too.

So the bottom line for all this? The cancer is at bay, but aging is probably taking more of a toll on me than anything else. My goal is to fight back where I can, but live with that sobering reality successfully, for as long as God will allow.

7/13/24

Yes, it's been awhile. About six weeks, in fact. That's because hubby and I have been on the move. It's been a mix of good news and challenging developments. Overall, I fared well from a health standpoint, although I think I picked up a bug in one or more of the three airports we spent time in on the way home (no, I foolishly did not wear my mask most of the time; lesson learned.)

We spent a month in the Los Angeles area visiting my mom, who is 91 and has dementia. She's reached a stage where she is no longer ambulatory and can do little for herself, but she lives comfortably at home with 24-hour care. In addition to hanging out at her bedside, we also filled in for my brother and the other caregivers as they took a little time off here and there. It took Mom a few days to grasp who I am, and even then her recall had to be refreshed almost daily. But she looks good and is visually alert, talks a little, still feeds herself and is very well cared for.

I think I lost a few pounds at Mom's house because she has stairs (her bed is now downstairs, of course). I could manage a handful of trips up and down each day, but I had to take my time and stop to catch my breath. There were also a few loose ends around the house that I helped tie up, cell phone in hand. The wrought-iron gate got repaired, the carpets cleaned, the driveway motion light replaced, a plumbing problem fixed and the air conditioning adjusted. Even then, we still managed to visit a couple of people -- and go to a Dodgers game on Father's Day.

Then we drove up to the San Jose area to spend a week visiting three of my other siblings and a couple of friends. Although it was great seeing everyone, there were some sobering developments. One sibling has been diagnosed with both Parkinson's and early Alzheimer's. One of my best friends is in a nursing home in a diabetic coma, prognosis uncertain. Another relative is dealing with some deep emotional issues. The bottom line? There's a lot to pray for.

While recovering from jet lag (and this bug I picked up), I hustled to get to my appointments this past week, including a port flush and blood draw for labs, a follow-up visit with the radiation oncologist, a PET/CT scan and a routine visit with my primary oncologist. The favored watchword with everyone is "stable."

My labs were about the same, which is good news: low red and white blood cells (but not dangerously low), normal platelets, normal hemoglobin and everything else on track. The creatinine level (a measure of kidney function) kicked up a bit (from 1.36 to 1.44), but again, it's not in the danger zone.

The PET/CT scan report used a lot of big words like "development of airspace consolidation with a degree of traction bronchiectasis anteriorly within the left upper lobe compatible with patient's post treatment/post radiation change," which boils down to growth of scar tissue. The radiation oncologist said that would explain the occasional "pin pricks" in my upper left breast area. The pricks are neither long nor unbearably painful, but typical of scar tissue development.

My two favorite phrases in the scan report were "no new regions of pulmonary nodularity otherwise demonstrated" and "no findings to suggest disease progression within the chest [and] no noncontrast CT findings to suggest metastatic disease within the abdomen/pelvis." Praise the Lord! Happy dance!

As my oncologist, Dr. DeRidder, put it "I think you're doing great ... Tagrisso is doing exactly what we want it to do."

Now, having said that, she and I did have a good discussion about "the littles" that I deal with daily ... a little fatigue and shortness of breath, a little lightheadedness, a little cough, a little constipation, and lately, a little rash, and a little runny nose with blood. My fingernails have also gotten quite brittle. Some of these side effects are from the lung cancer itself, but others are from the Tagrisso (my daily oral chemo tablet). The oncologist wants me to come back again in three weeks to see how much some of the side effects have resolved once I shake the airport bug.

In general, I feel pretty good, although I have spells of sluggishness that require me to take a nap. Like right now!

5/27/24

I hope you enjoyed your Memorial Day, if in fact you got the day off. We've had quite a bit of rain so I'm glad we didn't have anything specific planned.

Other than a routine port flush, I didn't have any medical appointments last week, and it looks like I won't have any for at least another month. That's great news. I'm feeling pretty good and aiming to keep it that way for as long as God allows.

Yes, I still have my issues to watch (coughing, backache, fatigue, creatinine levels), but even those aren't enough to keep me from enjoying life. In fact, hubby and I drove up to Delaware last week to witness the graduation of my cousin Arianna from the University of Delaware, with a bachelor's degree. She's pre-med, so she'll be returning to school after a gap year to get her master's degree. It was great to see her and other members of my family. The car trip was long (about six hours each way) and we hit a bit of traffic, but I weathered it without too much difficulty.

I found two more specific message boards -- EGFR Resisters and Tagrisso Patients -- that have been very comforting to me because the people know EXACTLY what I'm going through, and more importantly, they speak the language. These groups primarily consist of people who have the same diagnosis I have and they have been on Tagrisso for several years. They are, for the most part, not only surviving but thriving. While side effects and other details differ, their comments have given me so much encouragement. I confess that I didn't much believe in message boards because I thought it would be a lot of complainers, but that's not the case at all. They understand the issues and have very constructive advice.

Because I'm feeling good and don't have any appointments coming up for awhile, I will probably update a little less often. Maybe every 10 days or so. I don't want you thinking something is wrong because you're not hearing from me. I've made a personal commitment to be transparent about this journey because people have made it clear that they want to follow how I'm doing. I appreciate the love and prayers. God bless you!

5/17/24

I didn't have any medical appointments this week, thank goodness, and I continue to feel pretty good. But I do have a couple of lingering issues that I have to watch:

1) Ongoing cough -- Every now and then I get into a coughing fit. Not often, but often enough (several times a day). I can be watching TV,  laying in bed, talking on the phone, taking a shower or even sitting at the dinner table, when suddenly I'm hacking away. Medicated cough drops help soothe my throat and hours will go by before another cough ekes out, but it's an annoying reminder that my lungs are in distress.

2) Back pain -- Again, it's not often, and it's not intense, but at least once a day I have to take Tylenol because my upper left back area starts to ache. It just started about a month ago, so the oncologist said we'll monitor it until time for the next round of scans (July) to make sure nothing specific is lurking there to cause the pain.

3) Creatinine levels -- We've been here before (see January 2024 in Archives). My lab work shows my creatinine levels, which are a measure of kidney function remain "stable" around the 1.3 mark. That's slightly above the 1-point "normal" mark but lower that it was earlier this year, when it was lingering around 1.65. But the fact that it's persistently above the normal range has triggered an automatic reference on my "active patient problem list" as Stage 3 kidney disease. Great. Just what I need, another staged medical issue. The main cause of this out-of-range creatinine level is the Tagrisso, the oral chemo tablet that I take daily to treat  my cancer. The treatment is working, thank God, but kidney drama is one of its side effects. My oncologist doesn't think it's enough to change my Tagrisso treatment, for which I'm relieved. But I continue to consume as much water and other fluids as I can each day, typically around 50 or more ounces, to help flush out the toxins.

None of those three issues described above, by themselves, are huge. But they are nagging enough to keep watch, and that's what the oncologist and I are doing. I also have my ongoing fatigue and shortness of breath, but both are expected and somewhat managed.

I was able to find a Mayo Clinic message board specific to Tagrisso users, and it's been both informational and uplifting. Since the FDA approved the drug in 2015 as targeted treatment for lung cancer patients with EGFR mutations, lots of people have experienced smaller tumors, longer life expectancies and improved quality of life than what they had been told at diagnosis or what they anticipated. That's encouragement for me. I continue to trust that God has the Grand Plan!

5/11/24

"I think you're doing great."

Those were the words of my oncologist when I saw her on Friday (5/10) for my regular monthly visit. The symptoms I had after last month's visit -- a persistent cough, dry mouth and a few other nagging issues -- have all abated, thanks to a weeklong treatment of antibiotics and steroids. I still have an occasional cough, but it's not every few minutes like it was before. And I still have occasional back pain (easily treated with Tylenol). But not much else.

What we agree is that I will continue to have a few side effects related to both the cancer and its treatment, my daily oral chemo tablet called Tagrisso. But so far the symptoms have been manageable and fairly short-lived. That's why she says I'm "doing great." She has scheduled me for more labs on May 21 and new scans on July 9 (see Treatment Schedule). By then I'll know more about how the cancer is responding to treatment.

And with that, I'm not going to dwell on much else. I feel good (da da da da da da da) and I like it that way. Your continued prayers and notes and cards and visits and gifts and texts and other forms of encouragement all combine to lift me up and contribute to my well-being. Thank you ... and I am so grateful to you for following me on this journey.

5/4/24

This past week was probably one of the best ones I've had in awhile. I felt pretty good for the most part and I had just one medical appointment, with my cardiologist. He said I don't have to come back for another year unless there are major changes in my blood pressure. It was 124/78 the day I was in his office, which is quite normal for me (with medication).

So why do I have a cardiologist? Well, quite honestly, I think it gets to the heart of my cancer (see what I did there?). One evening in September 2022, hubby looked at me across the dinner table and asked "why is your left eye so red?" I thought maybe I was just tired, but when I looked in the mirror it frightened me. I'd never seen that much red in my eye, even in my long-ago drinking days when it was not unusual for me to wake up bloodshot and in need of some drops. I thought maybe I had unknowingly injured myself, but I couldn't figure how I'd do that without pain.

We went straight to the emergency room, where my blood pressure clocked in at 185/95 (or thereabouts). The ER doctor told me a blood vessel had burst in my eye, and had it not been for that and my quick trip to the ER, I'd be looking at a stroke or a heart attack. He also said that blood vessel could have burst anywhere in my body and I wouldn't have known it. I had an EKG and chest X-ray, neither of which yielded any abnormal result. I was referred to a cardiologist for follow-up. On my first visit, he changed my blood pressure medication and it's been working fine since then.

So why do I tie my cardiologist with my later diagnosis of lung cancer? Because I have come to believe that the broken blood vessel was my warning shot that something was seriously wrong in my body. The basic EKG and chest X-ray didn't reveal anything at the time and I certainly had no reason to suspect anything else or press for any deeper testing. But less than six months later, I developed back pain in my left rhomboid area. After a few sessions of physical therapy (which only briefly relieved the pain) and dealing with elder relative issues, I finally went to my primary care doctor in late July 2023. It was she who recognized that my newly developed shortness of breath was a red flag and sent me THAT SAME DAY for another chest X-ray; this time, less than a year later, it was "abnormal."

The X-ray led to a CT scan, which led to a PET scan, which led to a biopsy, which led to a cancer diagnosis. And here we are. But I believe it all started with that broken blood vessel, an abnormal event that didn't yield any abnormal readings in the couple of tests taken at the time.

Knowing what I know now, I'd say any time your body does something that doesn't normally happen, get a medical evaluation immediately. And even if tests comes back "normal," ask for the next test. Because elevated blood pressure and broken blood vessels and new areas of pain and shortness of breath are NOT normal. Like Evillene from "The Wiz," we "don't wanna hear no bad news" so we don't go further when we hear the word "normal." But I will never know if digging a little deeper back in September 2022 might have led me to finding something sooner that wasn't Stage 4 and wasn't metastatic. Sigh.

The only medical appointment I have next week is to go in for labs on Tuesday (5/7) in advance of my next regular visit with my oncologist (5/10). If nothing else, I'll at least check in about how I'm feeling. Thank you for your continued prayers.

4/27/24

I'm happy to report improvement in most of the symptoms I was experiencing several days ago. Thanks to my quick-acting patient care facilitator (Corrine) for getting me in to see the nurse practitioner a week ago (4/19), I was able to get an antibiotic and a steroid that cleared up a lot of discomfort.

My cough has subsided substantially. I still get an occasional hack, but nowhere near where it was a couple of weeks ago. The sore throat and dry mouth are pretty much gone. My humidifier is humming away. I'm still working on the constipation, which isn't as bad as it was before but also not as "regular" as it ought to be, if you get my drift.

I still have a little bit of back pain, but Tylenol seems to take care of it quickly. I usually take it once a day. And my energy level is still low, although not all the time. Sometime I get up a good head of steam with laundry or housework or errands, and then my body says "slow your roll, girlfriend!"

One other little thing: in the past week I've lost five pounds. That's not a bad thing, but I have to keep an eye on it. My oncologist says if I lose more than 10 pounds then we have to start looking at reasons why, but a fluctuation of a few pounds shouldn't indicate a problem. My appetite is pretty good, although I find that I get full faster, therefore I'm not eating as much as before. But I'm definitely eating!

How do I feel? The usual, which is fatigue and shortness of breath. But I can't complain. There are many who are going through much worse. In fact, I ran across this article about a fellow journalist who is being transparent about his cancer journey (I've also added it to the Articles page). https://www.pilotonline.com/2024/04/26/wtkr-anchor-kurt-williams-spreads-cancer-awareness-just-as-he-begins-radiation-treatment-himself/

I have one medical appointment next week, and that is a six-month follow-up with my cardiologist. Unless he tells me something earth-shattering, which I don't expect, I'll update at the end of the week. Thank you for your continued prayers.

4/19/24

I thought I'd gotten through a whole week without medical appointments, but instead some ongoing medical issues (which may or may not be cancer-related) began to escalate and I ended up in the doctor's office this morning (Friday).

For the past couple of weeks, I've been troubled by an annoying cough. It's a chest cough, but it's not painful and it's non-productive (meaning I'm not coughing up anything), and I haven't been wheezing. I've been mostly treating the cough with medicated lozenges, and that seems to help for a while. I have not been running a fever. My home Covid test was negative.

But I've also been waking up every morning with a sore throat, for which I occasionally take Dayquil HBP. I thought with the combination of those two conditions, plus intermittent dry mouth and periodic back pain, I'd better call the patient care facilitator, Corrine. (Oh, and there's also a little matter of constipation, for which I chewed some Senokot gummies and that seemed to clear that out.) So I called Corrine on Thursday (4/18), and God bless her, she worked me into today's schedule to meet with the nurse practitioner.

NP Kelly said it sounds like I may have a little acid reflux, although after I looked up the symptoms I'm not quite sure I agree. I don't have burning pains in my chest, for example, and I don't have problems eating or lying down. Quite the opposite! But, as she pointed out, symptoms also include a dry cough, a morning sore throat and a dry mouth. Hmmm. She recommended I consider Prilosec, an over-the-counter treatment.

She also gave me two prescriptions: one for an antibiotic (doxycycline) and one for a steroid (methylprednisolone). The antibiotic should address any infection I may have (which is my guess for the accumulation of symptoms) and the steroid will address any inflammation and other issues. I should notice a change in 7-10 days. She also recommended I start using my humidifier again, which I used through most of the winter but just haven't turned it on lately.

How do I feel? Mostly fatigued and a little short of breath. I had two lunch dates this week, and even I noticed that I wasn't up to my usual energy, which has been modified a lot since onset of cancer diagnosis. But I don't feel sick, which I consider a blessing, and people continue to tell me I "look good." I'm excited that a dear friend is coming to visit next week, and I know that will go a long way in lifting my spirits in the face of all these nagging symptoms and added medications.

I don't have any medical appointments scheduled for next week -- unless you count getting my nails done! :) In any case, I'll update next week on where things stand with this latest round of ancillary issues.

4/12/24

In a nutshell: the consultation with Dr. Ryan Gentzler, an oncologist at UVA Cancer Center who is also a professor at the UVA Medical School and whose research interests are lung cancer and targeted therapy, went well. He basically summed everything up as "stay the course ... I wouldn't change anything." He also said he would "not be inclined" to call the "schmutz" that keeps showing up in my scans as any indication of new cancer.

We talked about a lot of things, but here are the nine specific questions I asked him, with his answers summarized.

1) What do you see in the scans?

He said he saw the same things that my primary oncologist (Dr. DeRidder) and the radiologist saw. A review of all my scans clearly indicates a shrinkage in the one new "spot" that was detected in January and treated in March with radiosurgery (SBRT), and also shows that growth of new cancer cells is "minimal." The inflammation or infection (what Dr. DeRidder calls "schmutz") that keeps showing up as a shadowy presence could be related to the Tagrisso (my oral chemo tablet that I take daily), or could even be an after-effect of radiation, or could be left over from the Keytruda chemotherapy I had last year. But he stated very clearly that "I agree with Dr. DeRidder; I would not be inclined to call it new cancer."

2) Are we on the right treatment plan?

Yes. The Tagrisso is an oral chemo treatment that is targeted at lung cancer, specifically the kind that has certain abnormal epidermal growth factor receptor (EGFR) genes. That's what I have. My cancer was caused by a mutated EGFR gene called Exon 19. Dr. Gentzler said it is not inherited or passed on, which was a concern I had. Tagrisso inhibits the growth process of the mutated cancer cells, but what it doesn't do is make the cancer go away completely. I am going to be living with it for the rest of my life. In that sense, he did a good job of managing my expectations. But I still believe in a miracle-working God.

3) What would you do differently if I were your patient?

Nothing different, at least not now. There may come a time when I would need to switch to a new treatment, but for now he would "stay the course." He would not recommend going back on Keytruda because that is more for smoking-related lung cancers (I had one Keytruda treatment before we knew my EGFR results).

4) What do you think about Tagrisso?

It is the standard of care right now for my type of cancer. It was not available 20 years ago, so in that sense it is fairly new, but been around long enough to measure its effectiveness. There is a range of about 18 months to three years when the effectiveness of Tagrisso begins to wear off, in which case we'd have to develop a new standard of care, most likely going back to infused chemo treatment. But for now, Tagrisso is far better than (infused) chemo because of its convenience.

5) Would you recommend a clinical trial?

UVA has connections with NIH, Johns Hopkins, Sloan-Kettering and all the major cancer hospitals, and he is not aware of any other EGFR-specific trials right now. But if or when the Tagrisso stops working, there may be a new standard of care available by then.

6) What should I anticipate as far as the future state of my health?

Right now I appear to be doing well ... no hair loss, no brittle nails, no rash, no nausea or vomiting or diarrhea. Those are all good signs. Keep doing what I'm doing, but if I do notice changes, such as increased shortness of breath or fatigue, I need to let my oncologist know. I do have a maddening cough that has developed lately, but so far Dr. DeRidder is not too concerned about it. It's not uncommon, she said. I suck on throat lozenges for relief. If new "spots" show up in future scans or if the major areas of cancer don't continue to shrink (with the Tagrisso), then I would likely be looking at more radiation.

7) If I was your mother or sister or wife, what would be your next step?

He'd be doing exactly the same thing: keeping an eye on the effectiveness of the Tagrisso and monitoring any changing side effects.

8) Do you recommend specific message boards or support groups?

He's heard people talk about a patient advocacy group called EGFR Resistors that he thinks might be helpful.

9) What do you think of acupuncture?

He described it as "adjunctive," which means it's more of a supplement for pain control and muscle relaxation.

I met with my primary oncologist, Dr. DeRidder, the next day (April 10), and she had not yet seen a report from Dr. Gentzler. But she was clearly pleased that he agreed with her prescribed treatment plan for me. I'm glad she sent me for a "second opinion," and I feel much more at ease now about the course of action being taken in my case. I wasn't uncomfortable before, but it never hurts to hear someone else say "you're doing the right thing." To God be the glory!

4/6/24

I had a CT scan yesterday (April 5) as a follow-up to the five radiosurgery treatments I completed in March, but it yielded very little "new" information. It will mostly serve as an update for the oncologist I'm seeing next week at the UVA Cancer Center, Dr. Ryan Gentzler. The goal is for him to provide a second opinion (although it's really a third, not counting that my primary oncologist and my radiation oncologist are on the same Riverside Health team) to the diagnosis and treatment of my lung cancer. It's more of a consolation for me, to make sure everything is on the right track. I believe that we are, but it will be good to hear it from an "outside" source, so to speak, who doesn't have a dog (or a patient) in the fight.

As for the interpretation of yesterday's scan ... here's part of what the radiologist had to say: "Unusual appearance of the lungs, with multiple findings that were metabolic active on a prior exam from 01/31/2024. Some of the nodules in the left upper lobe have clearly decreased in size from the prior exam. The findings in the right lower lobe are relatively stable. There is bronchiectasis and scarring in the left lower lobe, and a nodular appearance of the left main fissure. Overall, an inflammatory or infectious process or a neoplastic process are possibilities. In summary, some of the findings in the lungs have improved, while others are stable or minimally worsened. No pathologic adenopathy. Chest port in place."

The good news? His findings are consistent with what Dr. Reshko (radiation oncologist) told me after my latest treatments. The left upper nodule -- the "spot" -- is not gone as I'd hoped, but it is clearly smaller. Also, the rest of my cancer is "stable." It would be nice if it were lessened, but I'll take stable. I'm hoping the UVA oncologist can shed light on the "inflammatory or infectious process or a neoplastic process," which I've heard before but without specificity, at least enough to satisfy me.

My UVA appointment is Tuesday (Apr. 9) and I meet with my primary oncologist on Wednesday for a debriefing of sorts. My thanks to all who gave me some really good questions to ask. I hope to post an update by Thursday, April 11.

(Click on the 2024 and 2023 Archives tab for previous posts.)