Back to Maintenance

The CT scan I had yesterday shows my tumors are stable with little change from the last scan. We’re quite relieved! The plan now is to try Avastin only but at a slightly higher dose every 3 weeks. I’m happy to no longer have to take Dexamethosone, but I will have to take blood pressure medication (Lisinopril). It’s a trade off, but I’ll take it.

My onc doc and PA want to see how this works before doing molecular testing, which will require another biopsy. And I’m happy to go along with that. The last biopsy caused nausea and vomiting from whatever the drugs were they gave me, so I’m not anxious to repeat that experience. And the four hours of enforced inactivity before they’d let me go home wasn’t easy for me. I wanted to be up and out of there!

So once again onward and upward.

Day from Hell

Yesterday went so well with chemo. My blood counts were good; my other blood work was incredibly normal; and my CEA is continuing it’s downward trend. I felt good, just a little tired and antsy from the steroids. I was even able to got to sleep at a normal time last night. Then everything changed. If you’re sensitive, you may not want to read the details of this medical issue…

I woke up shortly after midnight with the worst case of acid reflux I’ve ever had. It was so bad that I somehow aspirated into my lungs and was coughing so hard I threw up in spite of having taken my anti-nausea pill before going to bed. I was having a hard time breathing, and felt like my chest was on fire. But I couldn’t stop coughing and trying to clear the junk out of my lungs. This went on for at least half an hour and then subsided enough that I could catch my breath. But I was still coughing. I took cough medicine, Tums, and a different anti-nausea pill. I was finally able to get back into bed as long as I was sitting up and read for a while. Then I had to get up so came and played on the computer for a while. I was able to finally go back to sleep around 3 or 4 and slept until 9. When I woke up, I felt achy and headachy so checked my temperature; it had shot up to 99.8 – normal for me is 97.6 and under.

I was still having breathing issues, so called my onc doc’s office around 11:30ish. When my PA called back,I told her that on exhalation, I sounded like there was a sick cat mewling in my chest; she told me I’d better come in for a ‘cat’ectomy – gotta love that sense of humor!! She told me to come in right away for a CT scan as they were concerned about a blood clot in the lungs. I was sure it was more likely to be aspiration pneumonia from the reflux. The CT scan showed no blood clot, but no pneumonia either, but that wouldn’t be likely to show up for a couple of days anyway. So they gave me more steroids IV and an antibiotic IV. I have to go back daily for the IV antibiotic, and take the steroids orally every day for six days. And the CT scan showed that all but one of the tumors had shrunk – lagniappe!

But wait; there’s more!! In the infusion room, I used my foot to push in the footrest on the chair before I sat down. Except my foot slipped and I managed to rip off about 1/4″ of my big toe nail, which then wouldn’t stop bleeding – probably because of the Avastin and the daily aspirin. So I ended up having to have a compression bandage and an ice pack on my big toe, which continued to bleed for a good half hour. And Steve yelled at me for pushing the footrest in myself instead of asking him to do it. ūüėÄ

We were at the onc doc’s office from around 1 until 5:30 – we’re home now and my breathing is a little better. We’re waiting for the pharmacy to call to let me know my prescriptions are ready – more steroids and an inhaler to help my wheezing. And I have to take Tums 3 times a day in addition to the Omeprazole I’m taking twice a day for reflux. My breathing is a little better now, but I’m still coughing and wheezing, and my chest hurts still.

Never a dull moment, right?

Death is Personal

Every time I read of someone in my extended cancer family dying, I take it personally. And it hurts whether I knew them or not. So many of them I met through the blogosphere or Facebook and have not met in person. But I still feel I know them, and we support each other in our fight for freedom. And each death reminds me of my own mortality.

I know that each person with lung cancer is different and will respond differently to different drugs. And I know what the statistics show. I try not to focus on statistics, but it’s hard not to. I instead try to focus on the survivors who have beat the odds – those who have survived 5,10 years or more – and those living with NED (No Evidence of Disease). Lung cancer isn’t curable; I know that. But I want to know why isn’t it? What is it about this disease that makes it so aggressive and so incurable?

I read scientific studies; I read clinical trial results hoping for the breakthrough treatment that will knock lung cancer on its ass. I also read stories of ‘cures’ if I will only buy whatever the supplement or diet du jour is. And I get angry at the people that are touting these ‘cures’ and giving false hope to people living with lung cancer and desperate for a cure when there isn’t one. I have to admit that every time I see a new ‘cure’, I do a search¬†for any scientific studies on whatever ‘it’ is; most of the time there are none. But once in a while, there are promising studies, and then they don’t seem to go anywhere. And I wonder why. What happened that the research didn’t continue when the early results showed such promise. Did funding run out?¬†Was there a catastrophe with the research itself?

There is no lack of conspiracy theories to explain why we have no cure today. Many of these theories claim there is a cure, but the Government, or the drug companies, or someone out there, has decided they want people to die, or they can’t make money from the ‘cure’, or so many other ridiculous reasons.

Lung cancer can become resistant to the chemotherapeutic agents used as first line treatment. And even to the second line treatment. The most encouraging research now seems to be targeted therapy and immunotherapy. Targeted therapy is for a specific mutation, and immunotherapy is a way to trick the body’s immune system into attacking the cancer cells, and only the cancer cells. This is different than chemo where all fast growing cells are attacked, which is why there are GI side effects, and loss of hair, etc. But even these aren’t cures, and lung cancer can develop immunity to the treatment.

So for now I will just keep going.¬†I will have blood work and another CT scan on Tuesday and will meet with my oncologist on Wednesday. And then we’ll see where we go from here. In the meantime, I will continue living with an attitude of gratitude as much as possible.

 

Another Holding Pattern

My team leader talked with my oncologist late on Tuesday about my shortness of breath and had me go in for a blood test called D-dimer. Without getting all technical, this blood test shows whether or not there are blood clots in the veins (that’s way over simplified, but good enough for this blog!) Karen thought since my shortness of breath wasn’t related to exertion in any way, it could be blood clots in the lungs.

The test came back higher than normal, though not by a lot, so off I went for another CT scan. Fortunately, the scan showed no clots. There was also no fluid buildup in the lungs or around the heart, no evidence of other inflammation in the lungs, and nothing that showed any reason for the breathing problems. My lungs and heart sound good. I’m glad it isn’t blood clots but wish there was some obvious reason for my symptoms – or maybe not. ūüôā

So what we came up with is possible bronchitis from the horrible¬†winds we’ve been having this Spring that are blowing dust, pollen, and other particulates all around and my breathing some of that into my lungs. Since bronchitis doesn’t show up on CT or X-ray, this is just a theory. So back to antibiotics to prevent any more serious lung infection from taking hold and a wait-and-see holding pattern again.

Status Report

The latest blood work shows that my white and red counts are normal and holding steady, which means my immune system is in good shape, and I have the green light for – sushi! Something I have missed so much since I started chemo back in November.

However, my CEA and liver enzymes continue to creep upwards, I’m having shortness of breath without exertion, and a dry hacking cough. The shortness of breath could be the Alimta, it could be allergies, it could by COPD, it could be any number of things. Same thing for the cough. But if they were caused by allergies, there should be a decrease on the days I’m taking the Dexamethasone, and¬†there isn’t. The increase in liver enzymes and CEA could be related and could just be an effect of the chemo. So my next appointment will include another CT scan ahead of schedule. And if the symptoms get worse, I’m to let the team know and they might do the CT scan even sooner.

I’m feeling okay, so I’m thinking there probably isn’t anything going on with the cancer just now, but the symptoms are troubling anyway. I didn’t sleep well at all last night because of the Dexamethasone, and that med upped my pulse and BP today. But my O2 saturation levels are maintaining at around 97%, which is great.

So I’m basically in another holding pattern, but staying positive. And now it’s nap time!

Depression

Depression is a strange creature. It can come out of nowhere, take the wind out of my sails, slam into me knocking me off my feet, and then disappear as fast as it appeared. There are days when I don’t want to even get out of bed. Those are the days I’m glad we have the furbabies, because I am responsible for their breakfast while my partner is up on the roof. Then he gives them dinner. I wake up each morning to a little furry body curled closely into mine and another one at my feet. What a wonderful way to wake up!

Today, I had to drag myself out of the house to the gym; the last time I went was a week ago. I knew I would feel better if I went, but the chemo knocked me on my butt last week, and I couldn’t shake the fatigue. I told myself yesterday that I needed to go, but could not overcome the inertia to even get dressed until mid-afternoon. Chemo causes fatigue, and feeling fatigued makes me feel overwhelmed, and that makes me feel depressed.

So today I did go to the gym for the cardio workout class. I felt pooped but energized afterwards – if that makes sense. And I think the last of the fatigue and depression are gone for now, so I expect to feel good for another two weeks.

My oncologist had mentioned on the last visit that he thought I might qualify for a clinical trial up in Phoenix, but then said maybe we should wait for the next CT scan in 3 months. But then on Friday I received a call saying I should set up an appointment to meet with the clinical trial people. So tomorrow we will drive to Phoenix to meet with them. It’s a 90 minute drive give or take depending on the traffic, and all interstate. I’m so glad we have a newish vehicle to go in! So today we topped up the tires, the fluids, and gas, and will embark on a new adventure. I don’t know if I will qualify for the trial, and I really don’t know much about the trial so we both have lots of questions. I hope the trip will be worth it.¬†

Status check

My CT scan showed no progression of the cancer and there was some regression in the size of one or two tumors while a third seemed to be gone. My liver enzymes were elevated and that is what the oncologist thinks caused the increase in my CEA level. We will continue to monitor CEA as it’s showing an upward trend and do another CT scan in 3 months. If there is progression, he wants another biopsy to test for more mutations (the first one didn’t have enough tissue to do much testing other than to show negative for ROS-1) and try for a clinical trial of immune therapy currently underway in another part of the state. We are relieved at no size increase in the tumors, and for an explanation for the CEA increase. He seems pleased with my progress and sounded encouraging. In the meantime, we’ll continue with the Pemetrexed.

My oxygen saturation levels have been running in the 95-96% range, which is good. Yesterday, the level was 99-100%. I have to attribute this to the exercise I’ve been doing at the gym. It’s encouraging to know that all that sweating and aches and pains are paying off. I haven’t lost any weight, but I haven’t gained any more either. I’m going to keep going to the gym as much as I can and maybe I will lose some of the pounds that have piled on over the past 6 months. The increase in oxygen saturation is an unexpected benefit.

I went to the Dermatologist today for a skin check. If I had known it would be the day after a chemo infusion I probably would have changed the appointment, but I’m glad now it’s done. She didn’t find anything suspicious, but she did burn off a few plaques that were constantly catching on things and bleeding all over everything. As a friend said, it feels like being blow-torched like creme brulee (not sure I’ll ever be able to eat creme brulee again after that analogy!) but at least I don’t have to go back for a year unless something comes up before then.

I’m starting to feel as if I can live normally – at least for a while – and go to the dentist, and have other checkups done that are overdue.

 

Nothing to Report

It’s been awhile since I wrote a post, and that’s a good thing, because it means nothing new. But now my scan date is approaching, and I find myself getting a little anxious already. I’m afraid that the cancer has grown, but I know the CEA level isn’t necessarily a good indication. Between now and Tuesday afternoon, I have to try to settle myself down instead of allowing my imagination to run wild.

On a positive note, I have started going to the gym. My Medicare Supplement Plan comes with a free gym membership, so I decided it would be silly not to take advantage of it. I am seriously out of shape and overweight. Some of it is inactivity and overeating, some of it is the steroids. Even if I don’t lose weight I will feel better, and I already feel more energized. There are lots of exercise sessions as well as Yoga, and Pilates, and water aerobics. I’m starting out easy with the ‘old people’ classes and will eventually, I hope, graduate to Zumba, because that looks like fun and I miss dancing.

 

A New Normal?

I have been feeling off¬†for the last couple of days; I just could not stay awake so took lots of naps. And I’ve been a little loopy; dropping things, unsteady, hungry all the time, upset GI system. Then it dawned on me – it’s the chemo stupid!! Since I have chemo only every 3 weeks now, I feel so good most of the time that when I don’t feel good, I forget what’s causing it. One of the side effects of the Pemetrexed (Alimta) I’m getting is severe fatigue, so yeah, I felt like I had to sleep a lot. Combine that with the GI symptoms (and I won’t go into details on that one!), and yeah, I’m going to feel crappy for a day or two. I should have it figured out by now that by the end of Friday of the week I get my infusion, I’m going to feel like crap. Now I have it figured out – until the next time.

The scheduler at my oncologist’s office called me Friday to set up a CT scan for my next visit, and to assure me that my PA had talked to my oncologist and they knew I was concerned¬†about the increase in the CEA level, and that’s why they scheduled another CT scan to get a sense of what’s going on. I will meet with the oncologist right after the CT scan so there won’t be a wait before getting the results. I will also have my CEA level checked the Friday before my Tuesday appointment so we can discuss that at the appointment, too, and not have to wait until a day or two later to get the results. I wish there were a faster, better way to see what’s going on without having to wait to have tests, and then having to wait to get the results. I find the further into this journey I get, the more impatient i get.¬†

I also think I need to stop researching clinical trials and treatments. I normally like to be prepared, but I think I’m overloading myself and confusing myself about the options available. So I think I need to take a break for a while. And I need to get back to focusing on my writing; I have sorely neglected my stories for quite a while. What brought this home to me is a couple of new followers on my fiction blog; I haven’t added anything to it in over a year. Time to get in gear and write!

 

Phantom Hair and Other Musings

Is there such a thing as phantom hair? I know amputees can still feel pain, itching, etc in a limb that is no longer there, and I don’t want to make light of that. But since I shaved my hair, there are times when I see a hair out of the corner of my eye. Sometimes, when I’m putting in my contact lenses, I still use the back of my hand to push hair out of the way before raising my eyelid to put in the lens. If I wear a hat or scarf too long, it makes my scalp hurt the same way my scalp used to hurt if I arranged my hair against the grain. But if I don’t wear anything on my head, my head gets cold. I have longish peach fuzz all over my head, and most of it looks white or grey. It’s hard to tell because it’s so short and so sparse. I’ll have to wait until it’s longer. If it is mostly white or grey, it’s prime turf for some wild colors like purple, green, blue, neon pink – I get excited just thinking about the possibilities!

So things are generally going well. The latest tumor marker blood test shows the value still going down; not as fast as it went in the beginning but still trending downward. I’ve had people ask me what that is, so I’ll try to explain it. The blood test is for CEA – carcinoembryonic antigen. This is actually a protein found in the blood of people with cancer (carcino-) and also in developing embryos (embryonic). Production in a fetus stops before birth and healthy adults usually have a negligible amount of this protein in their blood. An increase in this marker means a tumor is present; if the values go down, tumors are shrinking; if the values go up, the tumors are growing, or there are new tumors, or the cancer has metastasized (spread) to other parts of the body. My value started at 74, went to 34, then to 28, and now to 24. As long as the values are going down, the news is encouraging. I will have another CT scan in about a month, and that will tell us the actual size of the tumor.

So far, I have had none of the really nasty side effects from this chemo. I was originally getting Cisplatin and Pemetrexed. That combination is the one that knocked me on my butt! So they changed it to Carboplatin and Paclitaxel, which I’m tolerating much better. Carbo- and Cisplatin are both platinum-based – maybe that’s why they’re so expensive?? Before the chemo is started, I get Premedications existing of Palonosetron to prevent nausea and vomiting; Dexamethasone, a steroid to prevent nausea, vomiting, and allergic reaction (the same drug I have to take the night before and the day of chemo); Famotidine to treat gastric reflux and heartburn; and Diphenhydramine, aka Benadryl, to prevent allergic reaction. Only after all these are injected IV do I get the chemo drugs, one at a time. You’d think with all that Benadryl I would want to sleep, but the Dexamethasone counteracts that and then some. I usually end up sleeping about an hour the night after I get chemo, and then I’m up most of the rest of the night. So I either read or do something productive like organize the bookmarks on my computer.

Maybe tonight I’ll take something as my team leader suggested today. I hate to add to the cocktail of drugs in my body, so maybe I’ll wait to see how it goes and take something if I really can’t sleep.

So onward and upward, dear friends. Thank you for your support these many months.