For the past week or so, I have had a return of discomfort in my left side and a dry cough. Both of these are usually indicators that something is going on with my lung tumors and were the original symptoms that sent me to my doctor. My PA called today and said that my CEA is indeed up, and that’s a good sign that the tumors are growing – the CEA isn’t necessarily indicative of what’s going on, but it does work that way for me. So I will be scheduled for another CT scan in the next couple of weeks and then maybe meet with my onc doc to see what the new plan is going to be.
I also am having some neuropathy, but in a weird way. It’s only on my left hand, in the area between my 4th and little fingers. It started out feeling like I had a cactus spine stuck in there, but there’s nothing there. And there’s some achiness on the sides of the fingers around that area. I don’t have any tingling, numbness, or any other neuropathy symptoms. I thought it might just be arthritis, but my PA says that the chemo would suppress the inflammation response for arthritis, so she’s sure it’s neuropathy and not arthritis. Lucky me!
Today, the side effects started early with achiness and feeling generally out of sorts and a little weepy. I’m trying to stay busy with searching for and printing knitting and crochet patterns and plan to do some test projects, just to make sure I haven’t forgotten how to knit or crochet. It’s been such a long time since I’ve done either one. And I’m not sure how that’s going to work with the neuropathy; guess I’ll find out.
I’m not feeling very encouraged right now, even though I know most of that is the usual post-chemo depression. It’s always up and down. But at least next week is an off week, so hopefully I’ll have more energy then and won’t have side effects to deal with. It doesn’t help to hear the news that another member of our lung cancer community has died, even if it’s someone I didn’t know personally. Every death leaves another hole in my heart. But on the other hand, there is always news of someone reaching another survival milestone, or of a new drug that is showing promise in clinical trials, or a new treatment that has completed trials and is pending FDA approval. I try to stay positive, because wallowing in self pity doesn’t accomplish anything and just saps my energy. My hope is to keep going until there’s something that will be better than the current chemo regimens I’m going through.
So I’ll continue onwards and upwards.
I have had a troubling cough for a few weeks now. It could be related to chemo; it could be allergies; it could be that the one tumor’s growth is constricting airways. I’ve been able to tolerate it okay until the last couple of days when it woke me in the middle of the night coughing so hard I almost threw up. I got out my homeopathic cough medicine that has helped tremendously, but I have to take that every 2 hours, which makes it hard to get a good night’s sleep. I have some cough medicine with codeine that I don’t want to take unless absolutely necessary; it makes me dopey and constipated and that I don’t need right now. I finally took some just after lunch and slept away the afternoon. But I didn’t cough.
The fatigue I’m feeling now could be residual from the cough medicine, or it could be the side effects kicking in already from Tuesday’s chemo. I’m also feeling depressed and listless. I sometimes wonder whether all this chemo is really helping or hurting. When I have these dark nights of despair, I have trouble remembering the last time I actually felt good. My team is wonderful at coming up with solutions, but there’s only so much they can do. I do try to stay positive, but there are times when I wonder if all we are doing is worth it in the long run. And seeing others succumb to this disease makes me feel worse. Another warrior just entered hospice because treatments are no longer useful.
And again there’s the twinges and aches and pains that could be from the chemo, or new metastases, or the current tumors growing. It can be so trying. I know these feelings will pass once the fatigue eases. And in the meantime I have to just be patient. But it’s hard.
I told my PA about the face tenderness; of course she’d never heard of anyone having that side effect before. First she said maybe I should take the Dexamethasone for a few days, but then we decided to wait and see if it happened this time since I wouldn’t be getting the Avastin on this round – I’ll only get that every 2 weeks. And it was disconcerting to see my CEA had jumped up more than 20 points from the last one. I don’t know what’s going on, and I’m scared that things are progressing more than they should. I can only wait to see what happens after two cycles of this treatment when we do another CT scan. I’m finding it more and more difficult to be patient.
Steve keeps telling me to just be patient and things will work out, and I tell him he’s not the one going through this. He and I both know he wouldn’t be tolerating this anywhere near as well as I am. I know he wants me to feel better and to beat this, but I get so tired of fighting and wondering who is going to win, me or the cancer. It’s exhausting. I so want to feel better and to beat this, too. I need rest and a good night’s sleep.
Yesterday we met with my oncologist to get the results of blood work and the latest CT scan. The good news is that the tumors are stable and not growing or advancing. The not-so-good news is that my liver enzymes and CEA are still trending upwards. The other issues are my shortness of breath periodically – not related to any kind of exertion – and the edema in feet and ankles that is much more pronounced on the left leg along with a strange red, hot, sore, patch on the inside of my leg about half way up from my ankle. This seems to resolve slightly when I am taking the Dexamethasone and then comes back with a vengeance when I’m not taking the Dexa. So now the next step is an echocardiogram, a Holter monitor, and a brain CT w/contrast. I had a hard time with claustrophobia with the brain MRI, so he thinks the CT scan will be good enough. And we will wait 4 weeks before another treatment to give my liver a chance to recover from the chemo effects. And that will hopefully also bring down the CEA level, which he thinks could be because of the increase in liver enzymes. We’ll see.
Since my other blood work was fine, he approved me for the Alimta infusion as usual. We planned on being out by 3 and home by 3:30. Not so! The Alimta had just finished when I developed itching all over my torso, my head, my neck, and my throat. The nurse called my PA, who prescribed IV Benadryl, which stopped the itching for about 15 minutes before it started up again. Then I developed a rash on my neck and torso that itched like crazy. So to make a long story short, I ended up having more IV Benadryl and 3 different steroids IV. I had to wait until 5:30 before they would let me leave. None of the nurses, nor the PA, nor the oncologist, had ever seen a reaction like that itching and rash. Oh, and I forgot the lower back pain, which is a known side effect. The scariest part was the intense itching in my throat and nose – I have never had that before even with my worst allergy/hay fever attacks.
When the PA let me go home, she told me to double my Dexamethasone for last night and today. She said to make sure I had Benadryl on hand and to call 911 if my throat started closing up. Scary stuff! But I made it through the night without any further itching or rash, and had some decent sleep in spite of the jitters from all the steroids. I think I was just exhausted from not sleeping well the night before and the stress of the allergic reaction. She also increased my Dexa for next time to 20mg instead of 4mg before treatment.
So the saga continues…
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!
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.
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.
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!