Suzie Q

There shouldn't be all that much more involved. While I don't know about this trial, my mom was on one for Velcade. She did have to get extra bloodwork, but generally they were doing that at the time of normal blood draws. Ct scans on week 6 every cycle. I don't think that's too unusual, either. Just don't let him agree to be followed with a telepone survey. My mom did (always wants to help others, bless her heart), and the "just a few minutes" turned into a 20 minute phone call several times a month with an automated system. There was no opportunity for input other than the automated answers, so I guess they are only interested in the side effects they know about, not what patients are really experiencing! Anyway, as long as he doesn't get a placebo only, do look into this trial. Good luck, Karen

Beth, if you do decide on a clinical trial, avoid the ones with placebo groups. You are stage IV. You are still alive and kicking. Have yourself a good cry, pick yourself up and GO KICK SOME CANCER BUTT!

Beth, My mom was on Alimta with virtually no side effects other than typical fatigue. However, it didn't work for her, so the fatigue may be from disease progression. You will be well-monitored because of your past history of reactions, I'm sure. But relax about the Alimta, this one's gonna work! ~Karen

Tammy, I know it's so hard to wait, but the truth is that lung nodules can be a lot of things, not all of them bad. So, unfortunately, you won't know until you know! For now, just think positively. Your dad has sure been through a lot in the last 2 years. my best to all of you. I'll add him to my prayers. ~Karen

OK, I know that whole-body CT for those without disease or symptoms is a contentious issue, in that not many cancers are detected but a good many patients wind up with further testing for benign processes (to make sure they are benign) based on those CT findings, BUT is there a recommendation for screening for family members of those who have lung ca? But might not the screening be more fruitful in the narrow population of immediate family members than in a general population with low risk factors? What is the general consensus on how family members should be monitored? ~Karen

My, my, Beth, you do keep us on our toes! I wonder how common this is, to have themisdiagnosis if the cells can be so similar. I often wondered this before - my mom has adeno of the lung, bot how do they KNOW it is not another type of adeno? I'm glad you found an onc with whom you have a better rapport and confidence. Thoughts and prayers to you! ~Karen

Maureen, I wish I could give you some info, but my mom just started this regimen. Her first treatment went well, her only complaint was that it felt warm going in, much like CT contrast. In fact, she felt so good, she fears it's not doing anything. Hope it works out well for you. ~Karen

I don't think you jhave all the info yet, but I would suggest requesting a consult from a GI specialist along with the onc. If your dad's gall bladder is inflamed, it can cause some of the symptoms you describe(based on my mom's experience many years ago), but they may not want to do surgery right now for it if the risk of surgery is greater than leaving it alone. Is he running a temp? What else is going on? Any lesions in the liver? Any fluid in the abdomen? I don't know what else to tell you, but it makes sense that if he was tender over the area where his gall bladder is when doing the ultrasound scan, then perhaps that is at least part of the source of his troubles.

Well, maybe it wasn't the Velcade after all...Mom's lung nodules are increasing in size after 2 more rounds of Velcade only, after having a 90% shrinkage with carbo/gemzar/velcade combo. So her onc said stop the velcade, and let's move on to Alimta. The info given to her indicates it is taken with other platinum-based chemo, but I'm wondering if anyone is on it as a stand-alone agent, and how it has gone for you. She got her vit B12 shop today, and will start Alimta next week. My dad just had surgery for malignant tumor in shi abdomen. they think it's a sarcoma, but aren't sure. We're waiting further pathology results. Dad has had prostate ca and melanoma. Anyone have a link on info about patients getting multiple types of cancer within 10 years? Maybe a defective gene? ~Karen

Bailey, I'm so sorry for your family. It must be very ahrd for you to have her refuse treatment right now. But as others have said, it's her decision. That said, my mom was diagnosed in April 2004 with stage IV adenocarcinoma (inoperable). She was extremely short of breath, coughing constantly, and had lost much weight. She tired easily as well, and had some upper back pain in the area of the tumor. She decided to go with a clinical trial of carboplatin, gemzar, and velcade. After 6 full rounds, she has had 90% reduction in mets (the primary is unseen by CT because the surrounding lobe of lung has collapsed around it - no way to tell the change in the primary non-invasively). While it has been no picnic, and at times was downright nasty, she has regained weight, resumed an increased energy level, has almost no pain, and the cough is now non-existant. I firmly believe that if she had declined treatment, we would have lost her by now. I don't write that to upset you, but to point out how badly off my mom's health was at that time. Not everyone can tolerate the treatment, but sometimes they can get enough to make things better. And while she may think smoking won't matter at this point, it does affect healing time for anything going on in the body. It won't change the cancer situation, but might make her recovery form anything else go better if she quits now. Good luck. Stay in touch. ~Karen

I can't say, Bill. My mom's treatment had certain meds on certain days. Must be a reason for it. Why do you ask? ~Karen

Forgive my typo, that's "hammered", not "hammeres". Geez, you might have thought I'd lapsed into a new language. When will I learn to proof every line I type? ~Karen

Beth, So sorry you are being hammeres so badly with these side effects. Hopin' and prayin' you recover soon. ~Karen

Here's my info about Velcade... It's approved for use in multiple myeloma, some ongoing clinical trials with other forms of cancer. In my mom's study, by the Southwest Oncology Group, Velcade is a protease inhibitor used in combination with Gemzar and Carboplatin. Patients are at least stage IIIB or IV, not previously treated with chemo. Mom's onc isn't sure if the Velcade did the work, or helped the other two chemo agents do their work better, but either way, something did its job. If I can find the clinical trial number, I'll pass it along. We're in the midwest, but the cancer center is working in conjunction with Southwest Oncology on this trial. I think there may be another clinical trial with velcade and d-something-taxol, so there are other combinations they're working with. Mom's bummed that she's so tired, even though much of the cancer is gone or shrinking, but her nurse reminded her what an ordeal her body has been through, and that it would take time to get it back up to snuff. I don't want to leave any of you with the impression that this is the "magic pill" or potion, or what have you. I'm sure you're all aware how individualized each treatment plan is, and the response varies so much form patient to patient. Mom had one mediastinal node with mets, the rest was in the lungs (bilateral, multiple mets), and initially she also had malignant pleural effusion. Still has some collapse of lung at primary site, making evaluation of it difficult. It's only been seen during the bronch, because even with the CTs the area is so dense you can't "see through" to the primary. But that lung lobe has partially reinflated. It had been completely collapsed. So maybe the fact that she does not have mets in bone or brain is a factor, maybe not. But for now, I raise my glass to the maintenance program! Thanks for your kind remarks. ellen, consider my mom kissed! ~Karen

Hi all, I don't post here often, but I wanted to share the good news! Mom's clinical trial of Gemzar, Carboplatin, and Velcade have worked very well for her. After 6 rounds of the complete "cocktail", she has at least 90% reduction in mets lesions. Not quite remission, but close! She'll be on Velcade only for up to one year for "maintenence". Good thing, because the last 2 rounds really knocked her legs out from under her. Onc says few patients complete the full 6 rounds, usually due to low platelets or other blood levels. Can't express what a relief it was to hear the news! Just a little over 4 months ago, I wondered if she wound make it until her birthday. Faith can do wonders. We are realistic that the cancer monster will be back. We jsut want it to stay away for a while longer! Thanks for all your prayers. I think of you all and pray for you regularly. ~Karen

Hooray! I did post last month on the newcomers/intro section, but I've only lurked here. My dear mom, age 63, has stage IV NSCLC (adeno). She finished 2 rounds of clinical trial of Gemzar, Carboplatin, and velcade, and just got her CT results: 30% shrinkage! Her left upper lobe is even getting a little air now (was totally collapsed around the primary). We knew she was getting some response because of the decrease in severity of symptoms, but who knew it would be this good? She said her onc came in the room with a smile on his face, and DIDN'T turn around to close the door this time (you know how they do that to buy time for the bad news they really don't want to give), so she immediately felt relieved before he even opened his mouth. She goes right back at it tomorrow with the chemo, re-evaluate with CT after the next two rounds. So we're pretty pleased. Hopefully the next evaluation will be as good!

Thanks everyone. And for the record, I am certainly glad that breast cancer is talked about as freely as it is, and that progress will be made with treatment. I think part of the lack of media exposure for lung ca is that there is no effective screening for it. Mammograms are inexpensive, so is the PSA test, although I am not convinced the death rates from breast ca have improved all that much despite the increased push for regular mammos. And prostate cancer tends to be less aggressive and is more treatable. Plus, most people are horrified with the thought of having a sex organ removed, which ups the ante for more advocacy with the general public. I did just read in USA Today Thursday, that NIH is doing a study to determine if spiral CTs will be effective as screening tool, though they are following only smokers, and for 7 years. So we won't know the results of that one for a while. My mom's cancer center is somewhat new, and they want to have the multidisciplinary approach. Right now, they have only implemented it for breast cancer. Too bad, because my dad had melanoma and went to the Univ of MI melanoma clinic, which has this multidisciplinary approach, and they loved it. Also, my mom's cancer center gives breast cancer patients a special packet, with info on all the complementary treatments offered at the center like accupuncture, massage, etc., and a CD with relaxation music they can listen to, especially during chemo treatment. So yeah, I'm a bit miffed. Mom didn't even get an informational packet - we had to wander around the center to find the accupuncture office and get brochures on our own, and so on. We're in the Grand Rapids area. Where are all you other midwesterners? ~Karen

Greetings to all. I've been lurking for about a week and a half, acquiring info and in a way, getting to know you. I'm not happy to be here, but welcome your advice and support. My mom was recently diagnosed with stage IV NSCLC. She has mets in the opposite lung, and the primary is inoperable. What started as supposed pnuemonia(sound familiar, anyone?) has turned our lives around. She really didn't display any symptoms until March of this year, when she got a cold and had presumed pneumonia. A round of antibiotics didn't improve things, so she went on another course of antibiotics. Still not better, she was referred to a thoracic surgeon after CT showed pleural effusion. Bronchoscopy biopsy showed malignancy, pleural fluid showed malingant cells as well. She's in a clinical trial, completed one round, and is remarkably better. However, follow-up CT will be done after second round of chemo to see if she really IS better. So, my big question of the day is: "Does anyone else think breast cancer is the media darling, and have you noticed better programs with extra perks for breast ca patients?" Sure seems like it. Nearly every person asks if Mom smoked, like she did this to herself. And even her primary doctor (who is mine also) was misinformed in saying that it is rare that non-smokers get lung ca. Sorry to ramble and jump around in subject matter, but I had to get that off my chest. Feel free to shoot comments my way! Karen (mom always called me Suzie Q, hence the screen name)