michellep Posted June 22, 2009 Share Posted June 22, 2009 My husband was just diagnosed in February 2009 with stage III Adenocarcinoma with malignant pleural effusion. It all started when he was diagnosed with pneumonia in January 2009 and they drained the fluid twice, then a chest tube inserted followed by pluradesis (talc to seal the lung). He is currently on chemo with Gemzar/Carbo 3 weeks on and one week off. He is extremely weak and on oxygen 24/7 and can't walk more than 2 ft at a time so I transport him by wheelchair to doctors appts. My question to anyone who can help me is do any of you have information you can provide regarding this type of cancer and why would it all happen so fast? He was working out and the gym 4 days a week, quit smoking 2 years ago and was in great health (or so we thought) and now he has declined this rapidly? I don't understand any of this so any advise would be appreciated very much. I'm desperate to know if they are any long term survivors out there. I'm just terrified every waking moment. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 22, 2009 Share Posted June 22, 2009 Michelle, I am a IIIb lung cancer survivor who also thought she was very healthy. I'd quit smoking years ago with a couple of minor relapes, ate healthy, exercised regulalry and wound up with pneumonia with a pleural effusion described by the doctors as a complete white-out of the left lung. They dx'd me with IIIb lung cancer when they tested the fluid removed from my lung. From there my case doesn't follow your husband exactly but after six treatments of carboplatin/taxol/avastin (very debilitating but not in a wheelchair or needing oxygen) and two maintenance avastin infusions I went into remission. After a total of 11 avastin maintenance infusions (total chemo time of 1 year, I elected to go off treatment. I remained in remission for six more months for a total of one year before my cancer showed up on routine scans again. I'm now on Alimta, doing well and not suffering nearly the side effects of earlier chemos. Hang in there, I can tell you that there were times I just didn't know. I've also seen so many people on this site seeming to go downhill and then bounce back up on the next treatment plan. I would advise reading some of the survivor stories and perhaps even read them to your husband. It sounds like you are both at a place where you need hope. I know I did and I found it on this site. I'm sending loads of positive healing thoughts your husband's way. Judy in Key West Quote Link to comment Share on other sites More sharing options...
SandraL Posted June 22, 2009 Share Posted June 22, 2009 Hi Michelle. I am so sorry to read about your husband. I am sure you are absolutely terrified. Unfortunately lung cancer can go undetected and symptomless for a long time, and in later stages. However, there is always hope. I too was diagnosed at Stage 3b with a pleural effusion and there are many here who were diagnosed at Stage 4. And many of us here, many months and years later to talk about it. So you have found a good place to come and vent and ask any questions. We get it here. I hope to see you more on the boards. And most importantly, I am sending prayers for successful treatments for your husband. Make sure to take care of yourself as well. Sandra Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 22, 2009 Share Posted June 22, 2009 Hi, Michelle, welcome to the group. I see you've already heard from Sandra and Judy, two of my favorite members. I was diagnosed with adenocarcinoma (the most common type of non-small cell lung cancer) in late summer 2006 and staged as IIIb (malignant pleural effusion). As you can see from my profile below and the more detailed history in the link, I've been on a variety of treatments since that time, and I'm reasonably active and productive though my strength and endurance are limited. Except for a small remaining area of "loculated" fluid, my pleural effusion resolved during the initial months of treatment, and my lung function greatly improved as a result. The fluid has not returned. From reading your post, I gather your husband was somewhat further along in the process than I was at diagnosis. It's not clear to me whether has has improved after being on treatment or has continued to decline. How long has he been on chemo, and has he had any CT scans since starting? May I suggest that you visit cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Best wishes and Aloha, Ned Quote Link to comment Share on other sites More sharing options...
michellep Posted June 23, 2009 Author Share Posted June 23, 2009 WOW! Reading your posts really made me feel better, plus reading more in depth about your stories was truly amazing! Thank you all so very much! Recce asked me how long my husband has been on chemo. He's only had 3 treatments so far. Some were postponed due to low white cell, red blood cells and then hemaglobin. He had to have a transfusion as well. He has another scheduled for tomorrow pending blood tests results. He has a port so they test it immediately before chemo starts. I've been reading about many patients using Avastin and Altima. Not sure which one of those it is, but I read that one of them actually targets the cancer itself and not the good body cells. Do you know why more aren't using this one? Are there bad side effects or is it too costly for the insurance companies? Good Lord we KNOW how those insurance companies are. They collect your payments for 30-40 years and when you need help they try ever trick in the book to deny you coverage. They even denied nausea medication for my husband until I screamed my head off and told them that unless they approved it within one hour I was going to bring him into their office so he could puke on their nice expensive carpet!!!! Guess what? The pharmacy called in less than an hour and said I could come pick it up. I hate being so mean but sometimes you have no choice right? Thanks again to all of you and I am looking forward to learning as much as I can from each and everyone here! Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 23, 2009 Share Posted June 23, 2009 ...I read that one of them actually targets the cancer itself and not the good body cells... Targeted agents such as Avastin and Tarceva are intended to do that, but in real life they don't quite live up to their marketing hype, and some collateral damage inevitably occurs. These side effects are relatively mild for most patients (myself included), but not for all. The cancergrace.org site which I mentioned earlier has a lot of reliable (and understandable) information which will answer your questions better than I can, especially since 10pm pumpkin time has arrived in Hawaii. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 23, 2009 Share Posted June 23, 2009 Hi Michelle- Sorry about your husbands diagnosis but so happy you found this site!!! There is no reason anyone should have to go it alone on this journey. Good for you for being so proactive with your husbands care - I would have LOVED to see the looks on their faces when you told them you would bring him in to puke in their office. Unfortunately, we need to be as proactive as possible with opur care. I was dx'd Stage 4 September 2006 and doing well. PLEASE DO NOT listen to statistics with this disease, they are old, outdated and if we listened to them probably none of us would be here right now (I was given 12 months TOPS 33 months ago). You can come here to ask any question, or just vent if you need to - we have all been there, done that. Please keep us posted on how your husband is doing. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 23, 2009 Share Posted June 23, 2009 Michelle, I love the way you handled that insurance issue. Sometimes a situation calls for mean. Also, your avatar, says it all. Sad as it is, it beautiful. I took Avastin and was one of the people in whom it causing raging blood pressure. Between the fatiguing effect of the chem and a ton of bp meds just to maintain my bp at a safe level, I felt I was barely functioning. I'm on Alimta now and altho it's not a targeted chemo, my white blood counts are oddly staying up. It may be the B12 shots they give before they start and for every 9 weeks throughout treatment. My oncologist at MD Anderson said they are having very good results with Alimta with few side effects. That has certainly been true for me as far as side effects. I won't have a follow-up scan until late August, but my sense is I'm doing well. I'll be watching and waiting for your follow-up posts. Judy in Key West Quote Link to comment Share on other sites More sharing options...
jstdzy Posted June 23, 2009 Share Posted June 23, 2009 Hi Michelle, Wish I had answers for you. Cancer and especially cancer treatments are sooooo individual! I know my chemo were horrible. I was just completely wiped out all the time. I slept a lot. I would go from my bed to the sofa and back to bed. Some of your husbands issues could be caused by any one of the medications he is taking. He could be having reactions to the chemo or the nausea meds or any pain killers. Talk to the doc's and like the insurance company don't take "no" for an answer! Dana Quote Link to comment Share on other sites More sharing options...
michellep Posted June 23, 2009 Author Share Posted June 23, 2009 Took husband for chemo today and got results from last weeks X-ray which says there is "noticeable decrease in the densities". I am just thrilled! Maybe I can sleep tonight? Thanks to all of you for your wonderful advise and ideas. I'm so happy I found all of you because for the first time in months I truly feel like I'M NOT ALONE! Bless you ! Husband Jan 09 Bladder cancer removed Mar09 dx pneumonia Mar09 admit hosp pneumonia, antibiodics only Apr09 admit hosp again pneumonia -drained lung 1500cc Apr09 Dr called dx stage 3 w/malignant pleura Apr09 Hosp again 911 call another 1600cc drained Apr09 Body scan Apr09 2200cc drained from lung and chest tube inserted Apr09 Port inserted, Pluradesis completed May09 Chemo begins Carbo/Gemzar May09 dx congestive heart failure (mild) June09 Blood transfusion - 2 units June09 Tests show noticeable decrease in lung densities Quote Link to comment Share on other sites More sharing options...
Patti B Posted June 23, 2009 Share Posted June 23, 2009 Yeah, Michelle - great news!!!! Tell your husband to keep up the good work!!! And please get a really good nights sleep tonight!!! Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
Bud Baker Posted June 24, 2009 Share Posted June 24, 2009 That's great news, Michelle! I had given up cigars 4 1/2 years before my diagnosis, and become a long distance cyclist, so I also know the feeling of being very fit and still getting lung cancer. Here's hoping your husband continues to do well. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 24, 2009 Share Posted June 24, 2009 Hang on there Michelle, sounds like you guys are on the upswing. You know what they say about it always being darker just before the dawn. Never so true oftentimes as when dealing with cancer. Enjoy that night's sleep. Keep us posted. Judy in Key West Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 24, 2009 Share Posted June 24, 2009 Terrific news, Michelle! Did you bring home one of those plastic breathing devices (spirometer) from the hospital? As the numbers on that increase you should also see improvement in your husband's strength and endurance. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jstdzy Posted June 24, 2009 Share Posted June 24, 2009 Michelle, Thanks for the good news! Keep asking questions of the doc's but also of the people here. They really helped me out a lot! Dana Quote Link to comment Share on other sites More sharing options...
michellep Posted June 24, 2009 Author Share Posted June 24, 2009 "recce101"]Terrific news, Michelle! Did you bring home one of those plastic breathing devices (spirometer) from the hospital? As the numbers on that increase you should also see improvement in your husband's strength and endurance. Aloha,Ned No, we didn't get one of these. I researched them on the internet and it really looks like it might be a good thing for him. I'll ask the doctor about this when I see him on Friday. I wonder if it's by prescription or direct purchase because they look really expensive from what I could find. Thanks for the information Reece! Quote Link to comment Share on other sites More sharing options...
michellep Posted June 24, 2009 Author Share Posted June 24, 2009 I see on your profile that they found cancer still in the pleura in May. Any news since then? Quote Link to comment Share on other sites More sharing options...
recce101 Posted June 25, 2009 Share Posted June 25, 2009 I wonder if it's by prescription or direct purchase because they look really expensive from what I could find. The one I have is an Airlife Volumetric Incentive Spirometer, which is available many places on the Web for about $10. There may be a medical supply company near you that stocks them. The measurement is made by breathing IN through the device. It was fun to track my improvement as my pleural effusion gradually diminished. I improved from about 1000ml in the hospital to 1750 over a period of several months. Then when I went on Tarceva I got up to 2000 for a while. Now I'm back down to 1750, and my strength/endurance seem to correlate quite well with the numbers. Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted June 25, 2009 Share Posted June 25, 2009 Michelle, they won't do any scans until late August. I'm o.k. with that because I really want to give this Alimta a chance. I'm managing the worst side-effect (constipation) well so for this third scan so I'm hoping to stay on it for a long while. I'm just watching how I feel and I've successfully taken some long walks since stuck here in Seffner, FL just sitting around. I am experiencing a little left side chest discomfort but have had that on other chemos. People say it may be scar tissue. Ned recommended the breathing device to me and I checked it out on line and found it expensive too. Fortunately, I have a daughter who is a registered nurse who I described it to and she was able to snag me one of the inexpensive plastic ones. Judy Quote Link to comment Share on other sites More sharing options...
michellep Posted June 25, 2009 Author Share Posted June 25, 2009 Thanks for the info Ned. I will go shop for the Spirometer asap I like the idea of him being able to exercise the lungs with this device! And Judy.....I wish you all the best on your next scan. I don't know when my husband will be getting one but I hope it will be soon. He too also has pressure and discomfort from his lung sometimes. Right now it's a bit stronger as well as the cough he has been I've been told this is actually the chemo "working". Makes sense to me because it usually gets worse 2-3 days after and then his last chest xray showed noticeable improvement. It's just so hard to watch him suffer with this cough and not be able to sleep. (nor me) I'm so amazed reading the many stories of lung cancer survivors on this site. With all these doctors giving us nothing but grim news finding all of you is a true god send to me Quote Link to comment Share on other sites More sharing options...
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