CaroleHammett Posted June 7, 2008 Share Posted June 7, 2008 Hi, everyone. When a long-time friend flew in last week from the west coast, as usual I dropped my time-buying program in favor of quality of life (always!). We had a great time, including a day trip up to Estes Park where we found elk, but missed the big horns, and then down to Carter Lake where I raced sail boats and had a log cabin (2nd home) back in the 90s. Unfortunately, I overdid and by Sunday noon, was in local ER being diagnosed with pneumonia. My friend had taken me there, and ended up having to take a cab to Boulder station to catch shuttle to DIA. In the meantime, I was given a 1 hr. antibiotic IV, following which ER doctor wanted to admit me, but my palliative care doctor (bless her!) convinced him to discharge me home ("I know this patient very well,": she told him. "She'll do better at home."). I'm not sure, however, that she knew me well enough to predict what I did next. My cousin's 17-year old son was already scheduled to spend the night with me (including dinner out) before catching a plane the next day for Albuquerque. So first of all, I advised his uncle that I still wanted him to come, and secondly, after they arrived, I climbed out of bed and took them both out to dinner, during which my temp dropped 1.6 degrees and my supplemental oxygen dropped a full liter! And I'm still calling myself the "bounce back kid" because by Wednesday,, when I was due for my next Alimta infusion, both my stat chest x-ray and blood test reports came back with flying colors! (Unfortunately, the Alimta is definitely causing chemo fog (unlike the Tarceva), and one result was that I'd forgotten to take my dexamethasone, so I couldn't have the infusion until Thursday.) I was also informed by my oncologist that he is concerned about the possibility that Alimta is toxic to my lungs (In an earlier "incident" on 05/20, 1-1/2 weeks after 1st Alimta infusion, I developed a severe, wracking cough, fever, etc.). These two incidents are particularly worrisome because I have squamous cell carcinoma (rather than adenocarcinoma, etc.) and squamous tends to grow/metastasize in the lungs longer before metastasizing to more distant sites (such as brain, bones, liver, adrenals, etc.) As a result, squamous cell patients are more likely to die due to respiratory issues than from metastasis to other organs. He concluded by advising me that he would halt the Alimta if I have a third lung (respiratory) "episode." Soooo.... I am going to try to "clip my wings" for a few weeks; i.e., I have made a bargain with myself to slow down my "tripping of the life fantastic" (expending energy I don't necessarily have at restaurants, on day trips, etc.) in return for quality of life activities at home (you wouldn't believe how many computer projects I've been procrastinating doing, including scanning, transcribing and footnoting my late father's World War II letters to his father!) Mind you, my step-brother and his wife are flying in from Alaska in early July and there's NO WAY I'm staying at home (let alone in bed) during their visit! Carole the Incorrigible Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 7, 2008 Share Posted June 7, 2008 Hi Carole. Thanks for the update...you are a cool lady! Hope you are feeling a bit better now. I am starting Alitma this Tuesday so always appreciate your updates and all the good information you provide. My doc has always been worried about pneumonia with me as well. I haven't had any respiratory issues to date thank goodness. Have you had an anti-pneumonia shot? I had one in the fall and I am assuming it has done me some good. I like to enjoy life as well so don't blame you one bit for getting out there when you can. I am battling pain big time still, but other than not working, am trying to keep up as best I can with life around my busy house. I will be cheering my son's baseball team on today! Take care Alimta sister Sandra Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 7, 2008 Author Share Posted June 7, 2008 Hi, Sandra. Glad to hear you're still going great guns despite the pain (I am doing the "baseball thing" with both my grandkids this summer). Re the pneumonia vaccine, I got one last fall, along with a flu shot, at the insistence of my palliative care doctor. She and my oncologist both believe, however, that my pneumonia last week was Alimta-induced, and not a "miss" by the vaccine. I hope you have a great day! (I'm actually kind of enjoying lazing around for a change--that, too, can be quality of life, not to mention that I'm catching up on back email, this website and other computer projects as well). Carole Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 7, 2008 Share Posted June 7, 2008 You two are quite a pair. Do you have a catchy name for your club? Aloha, Ned Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 7, 2008 Author Share Posted June 7, 2008 Hi, Ned, and no, we don't have a catchy name yet, but as one of our Alimta brothers, you're automatically a member and thus automatically eligible to make suggestions! Carole Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 7, 2008 Share Posted June 7, 2008 Carole, You spunk and great attitude are certainly inspirational and quite contagious. I'm not a cancer patient, but I can sure learn from it as it helps me deal with all kinds of health issues. I do want to add a word of caution about Alimta. You might want to research the affect it has had on quite a few members on this board, the shortness of breath, pneumonia pneumonitis ( which my husband developed on it) and more are quite typical side effects of that treatment. If has great potential to inflame the lungs. That being said, make your decisions based on your individual case and your own research. It's just when I see a member post about breathing issues and lung inflammation all in the same sentence with Alimta, the red flags go up. On the other hand, I've seen a lot of very good results or stability attributed to it as well. You just keep enjoying your life and inspiring us.. I'm loving it. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 7, 2008 Share Posted June 7, 2008 "CaroleHammett" ...as one of our Alimta brothers, you're automatically a member... Hold it, Carole, not so fast! I'm a prospective Alimta brother. Tarceva is still working, and Alimta is just waiting in the wings. I was thinking of something a little more descriptive of attitude, not the particular poison we're on at the moment -- something with a bit of the flavor of the Union admiral's "Damn the torpedoes, full speed ahead!" but with fewer words and maybe no military connotation. If you want to drop by, we can hang out in my garage and brainstorm this. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 8, 2008 Author Share Posted June 8, 2008 Hi, Sue. Thanks so much for posting about the SOB and pneumonia pnuemonitis. My oncologist did warn me that Alimta could be toxic to the lungs, but your details are definitely hitting home (See "My Story" link below re my own prednisone and radiation pneumonitis nightmare). My lungs can't afford last week's pneumonia bout, let alone pneumonia pneumonitis. I just rechecked the Alimta side effects and the only lung-related side effect they list under "side effects" is dypsnea, but further down--in the fine print under post-approval incidents--I found the statement: "Rare cases of interstitial pneumonitis have been reported in patients treated with Alimta." Thanks for the heads up, Sue. I've spent the day in bed because of a new problem: Woke up this a.m. with pulse at 59--a huge drop as it's been racing at over 100 (often at 120 and even up to 160) for months. In fact, I'm on Diltiazem to slow it down. I'm assuming (as are my Palliative Care team) that Alimta is the cause (and ditto for elevated temp), but so far no light headedness or dizziness so only instructions are to take it easy and cease taking the Diltiazem in order to see what happens next. In the meantime, my supplemental oxygen is still at 2 liters minimum (better than last week's 4 liter high, but worse than my pre-pneumonia one liter walking around and zero liters resting. Sigh. Oh, well. Tomorrow's another day. PS to Ned: Sorry I misread and thought you'd already started. PS to Sue: Thanks so much for sticking with us and helping us out even though your Mike is gone. It must be hard for you, but is very much appreciated by all of us. Carole Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
shineladysue Posted June 8, 2008 Share Posted June 8, 2008 Hi Carole, I just care about you and others here. I can tell you that I certainly appreciated it when people went out of their way to let me know of their experiences. Someone elses experiences aren't neccesarily yours, but it's good to know all sides. I'm so so sorry you are having all these problems, but I am so glad you are taking care of you. Sometimes , you just have to listen to your body. BTW , when Mike had the pneumonitis, he had a dry cough and it showed on CT scan as "ground glass opacity" which I am told is how it looks due to the fact that the inflammation tends to reflect and cause that type of image.. yes high doses of prednisone , slowly getting lowered over a period of weeks was the treatment. He also went on 2 ltr. oxygen and stayed on it. One more thing, I unfortunately have another member of the family with lung cancer... my mom. She was diagnosed last May when she had wedge section . She is stage III non smal cell , due to the fact that she had two small tumors , both different. One was adeno and the other was the type non smokers get.. don't know the name. Anyhow, she tried to do the Tarceva and couldn't tolerate it. She is currently in watch mode. She had a PET the end of Feb. which showed NED , had an oncologist appt. yesterday and is doing well. He will do another PET in September. She's allergic to dyes and contrast , so that's the reason for the PETs. Anyhow, I'm still here with a purpose to support my family and to support the patients and families of lung cancer. We all "Get It" when the rest of the world , sometimes, doesn't. You take care of yourself Carole. Will be looking for your updates. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 8, 2008 Share Posted June 8, 2008 Dang, I'm glad Ned clarified that too. I want to be in the club but I'm not on Altima either. Carole, so sorry you've been having a bad time of it. Rest up now girl so you can get back on the road with family in July. But do take it easy, o.k. Sandra, I feel for you. It must be tough keeping up with the family while you're in pain. Glad you're able to barrel through it and do the baseball thing. But if the going gets too tough, just opt out. Your family will understand. My hospitalization for pneumonia that started this whole cancer thing was nine months ago. Since my dx all my traveling has been back and forth to Orlando for treatment. The silver lining in that is that I see my kids and grandkids more because they're along the route to MDACC. But in a couple of weeks I taking a real road trip. My husband will be working about four weeks up in Ohio but he's taking me to NJ and dropping me in a spot friends have on the Rancocas River. It's in a little burg close to all my family and friends and I am so excited. I'll be in our RV parked on the river just me and the birds and the beavers. I've already planned a sleep over with one of my girlfriends. I'll be extending my chemo to a four-week interval instead of three and getting it going to and coming from NJ. I considered getting a mobile internet device and service but think I'll stick to hotspots. I can't go too long without checking in to LCSC. Girls and guys, for four weeks it's going to be quality of life! Judy in Key West Quote Link to comment Share on other sites More sharing options...
CaroleHammett Posted June 8, 2008 Author Share Posted June 8, 2008 Hi, Sue, and thanks. So sorry re your mom (My chemo brain missed that whole section). Hi, Judy, and thanks to you, too. Your quality of life vacation sounds GREAT! You go, girl! In the meantime, all goes better here: my pulse is back up into the 80s from the 50s, I'm at 95% at 2 liters (but too lazy to get up and go in the other room and turn down the concentrator to 1-1/2), and I even got in a couple hours nap tonight (the dexamethasone has been interfering with my sleep but should be wearing off by tonight). A couple more postings to answer and I'll log off for the night. Hopefully, by tomorrow morning I'll have enough strength back to do my warm water pool therapy (in hot tub), which I skipped today--my second skip this week, which I hate, makes me feel like I'm caving in (or atrophying or somesuch ) Carole the Macha Jockette Life is a Terminal Condition Quote Link to comment Share on other sites More sharing options...
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