Update

We met with the oncologist today and the news is generally good. My CEA is down, my liver enzymes are down, but one tumor in my upper left lung grew while the rest of the tumors shrunk – what?? Since this tumor grew and looks like it might be wrapped around a couple of airways, it might explain the cough I’ve been having, or it could just be allergies. Who knows? And there is some liver damage – probably from the chemo – but since the liver enzymes are coming down, it’s probably not serious at this point.

We now have a new plan of attack; we are going back to the Carboplatin and Paclitaxel that was the 2nd round of chemo treatment, and we are adding Bevacizumab (Avastin) every two weeks. I will be going in for 3 weeks out of 4 again for a long day of chemo – about 5 hours or so. It’s a good thing they have WiFi!

I’m feeling relieved, but pissed that I was just getting a good head of hair and now it’s going to disappear again. And it’s summer so wigs are going to be hot! I know the hair won’t go right away, so maybe I can make it into cooler weather before it does. And it means more steroids – just what I need is more weight gain!!

And if this works without any major side effects, Avastin can be used for maintenance. So overall I’m feeling pretty good. And relieved!

Onward and upward!!

A Little Bit of This; A Little Bit of That

I have been on edge and irritable for the last couple of days, and this is probably going to be one big whiny post, so you have been warned. Part of it is not knowing whether or not we can find another treatment that will be effective, and part of it is the pain in my hands and feet, and part of it is the state of things in general.

I have arthritis in my finger joints, especially the first joint on the first finger of each hand. And both of those fingers are gradually rotating themselves and getting totally crooked. But what is really problematic is the neuropathy in fingers and toes. It isn’t like the pins and needles you get when feeling starts coming back after a foot has gone to sleep. This is more like stabbing aches in fingers, toes, and soles of my feet to the point that I’m having to take Tylenol.

And then there’s the ear thing. It isn’t exactly ringing; it’s more like that feeling of pressure when you’re underwater. It hasn’t affected my hearing, thank goodness. I’ve always had extra sharp hearing and that hasn’t changed.

I almost forgot the brain fog. We were at the grocery store earlier in the week, and I forgot my PIN # for my debit card. No big deal because that happens periodically. But then when we got home, I could not remember picking out the fruit that we unpacked. And I know I’m the one that picked it out because Steve picks out the veggies, and I pick the fruit. Having no memory of that really freaked me out. I’ve had the can’t-remember-the-right-word often and can handle that. But this was sort of like a blackout and that scared me. It hasn’t happened since; at least not that I remember. Ha ha ha.

I know these are from the Pemetrexed, and I know I won’t be taking that again because of the severe reactions I had with the last two infusions. But I’m tired. I’m tired of the aches and pains and everything else associated with chemo and cancer. I really am trying to stay positive, but some days, like today, I just have a hard time. And I have found that writing about it really does help.

I had the PET/CT scan earlier this week; I will have blood work done on Tuesday; and we will meet with my oncologist on Thursday. No matter what the scan showed, I hope we can come up with a new treatment plan. Whether or not it will work remains to be seen. The first chemo combo I had was supposed to be the easiest one for people to deal with; not so for me. What happens next will depend on the results of the scan and the blood work.

Stay tuned…

An Ending of Sorts

It looks like my treatment with Pemetrexed (Alimta) has come to an end. The infusion at the beginning of June triggered a reaction that I hadn’t had before. And the last one on Wednesday of this week triggered the same reaction in spite of the huge increase in my steroid doses for the day before and day of the infusion. So I ended up being pumped with more IV Benadryl and steroids before the itching and back pain stopped and they would let me go home. I also made sure this time that I had a step-down schedule for coming off the massive steroid dose I had. So today I’m feeling like crap as usual. (Last time I managed to bypass the crappy fatigue day because of the steroid crash.) I’m also noticing some neuropathy today that I haven’t had before. When I was getting the Alimta with the platinum based drug I had some vague tingling in the soles of my feet and not exactly ringing in the ears but a feeling of being underwater. And that’s part of the reason they switched me to the Taxol combination for a while. But this is fingertip tingling now. Damn!

So what’s next? I don’t know. On Wednesday I had a brain CT, which showed no evidence of metastasis – good news! And now I’m scheduled for a PET scan in 2 weeks before meeting again with the oncologist to discuss strategy for the next phase of treatment.

In a way, I’m glad to be going off the Alimta. It was doing nothing to reduce the tumors but was keeping them from growing. And my CEA continues its upward trend, which has my team a little concerned. It’s back up to 50. I know that’s not high, and still much lower than the very first reading I had. My liver enzymes are back to close to normal, so that isn’t what’s raising the CEA. But now we’re venturing back into the unknown and that is scary.

But I’ll survive and cope with this minor setback, which may not even turn out to be a setback. We just have to be patient and see what comes next.

More Weird Side Effects?

Since my last treatment, I’ve been experiencing some things that I never would have associated with Pemetrexed. I suffer from dry eye – well I do live in a desert and I’m getting older – which tends to make my eyes burn and leak a bit. But I have been able to control the symptoms with eye drops. I also have allergies that don’t usually affect my eyes, except for the last couple of months they have been. Or so I thought. I have tried 3 different over-the-counter allergy meds over the last few months with no relief. So I started doing some more research on side effects from Pemetrexed. I found a few sites that mentioned the leaking, waking up with eyelids stuck shut, and burning sensations. So perhaps what I have isn’t allergies at all. Oh, and the sites were medical sites; one of them (http://cancergrace.org/forums/index.php?topic=5262.0)  including doctors responding to questions and issues.

What I found is that 1-10% of patients have the watery, red eyes. And that same percentage have itching as I did after the last infusion. But what caught my eye is the statement that less than 1% could have a dry cough and shortness of breath. This information comes from a UK Cancer Research site (http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/pemetrexed).

I’m meeting with my oncologist and PA next week after my brain CT, so I must remember to mention these symptoms and the possibility that they may be Pemetrexed side effects. Of course, they could be totally unrelated. And I don’t think they’re severe enough to stop the Pemetrexed. I’ve had a 24 hour Holter, and today I had an echocardiogram. So if those are normal, then the cough and shortness of breath are probably not heart related.

And then there’s the depression that I struggle with that seems to be deepening. No matter how hard I try, I find myself losing ground a little more every day. I go to the gym, I try to keep my mind occupied with reading, puzzles, research, etc., but it no longer helps. Something else to bring up as a possible side effect.

But in the meantime, I will just keep going as best I can.

 

Rough Week

The week since my last chemo infusion has been rough. It took about 7 or 8 days for my body and brain to feel normal again. I think that was mostly because of the steroids more than the chemo itself.

Friday morning, I woke up so jittery I thought I was going to jump out of my skin. I couldn’t sit still; I couldn’t concentrate or focus on much of anything. The upside of all that was I never had the severe fatigue that usually hits on day 3 and/or 4 after chemo. Although I didn’t have the fatigue, I still had the general malaise and brain fog that usually comes with the fatigue.

By Wednesday of this week, I was feeling better, and by Thursday even better still. So 8 days after the Alimta and all those steroids. In retrospect, I should have insisted that I get stepped down from the steroid push because I know what could happen. I don’t know why my team didn’t bring it up either, and I don’t blame them; I think they were too concerned in getting me through the immediate crisis to worry about afterwards. But since they think I need to up my prophylactic dose of Dexamethasone for next time, I’m going to insist they give me a schedule for tapering off whether I have another reaction or not.

Yesterday and today were the closest to a normal day I’ve had in a while. My hair is growing back and actually is long enough that it looks decent; I’m back to having to use my tweezers on my chin hair; my GI system is good enough to deal with extremely spicy Cajun food.

Life is good.

Weird Side Effects

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… 

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.