jcawork

Dreading it of course. Hate waiting for the dam results. Have no idea how we all get through this all the time. I get scanned now every 2 chemo's, which is very often. I feel like I just got through the last scan nightmare when its time again. Thanks, Jen

I am still stuggeling with this even after dx. Its been very tough for me. It has also been tough that we have MANY LC members who still smoke, but are not forthcoming about on the board because xsmokers can be pretty hard lined about the whole nightmare. How do I knwo this? They have told me privetly. There are many! It is also important to mention that not 100% of all smokers get LC. I can't remember the exact % but I was surprised as its actually pretty low. I think it was like 15%. That also helps to drive home the "it will never happen to me" feeling that helps the denial. I have small cell. I am also young for LC. I also had a few very serious exposures (asbestos and radon). I think there must be some differences with the smokers who do get LC and who dont get LC but I don't know what they are. I am the only person for generations ever to have LC in my family. I come from a long line of hard smoking and drinking Irish. So, why me and not the other heavy smoking relatives I have that smoked til they were 80 and never had a problem? What made me different? Hopefully, they will learn more because its not just the smoking. Jen

I feel the same way. I sent this last week to my personal and professional email lists, about 100. Dear Friends and Colleagues: As you know, I have been battling Lung Cancer for the last 18 months. I am still in treatment and the battle wages on. To my great disappointment, I learned early in this nightmare, that Lung Cancer receives little funding or support at a Nation or even local level. It is an absolute disgrace. In the County that I live in, there are over 50 Breast Cancer support groups running each week. The are NO Lung Cancer support groups. None. Lung Cancer kills more people each year than Breast, Prostate, Colon, Kidney and Melanoma combined. Most people do not know this. I didn't either. Why is it so IGNORED? There are a number of reasons: The myth that only smokers get Lung Cancer. If only smokers get it then they deserve it attitude. The lack of understanding that there are many types of Lung Cancer and causes. The fact that historically, older men and older people in general got Lung Cancer and they are not as vocal or willing to advocate compared to the patients who are much younger with different cancers like Breast. This is no longer true. Younger people are getting it at a horrifying rate. Unfortunately, treatment can be brutal and the prognosis is very poor for most patients from the start so they have little time or energy to advocate and most die. The average survival rate for lung cancer all types combined is a dismal 15% for 5 years. Some stats quote 15% for 2 years. So, what is the favor I need? I have been too tired to physically get out there and raise hell, but I have to do something. November is National Lung Cancer Awareness Month. The sad thing is no one seems to know this. I spend a lot of time in medical offices both personally and professionally. When I have asked in recent weeks, no one seemed to know this. Most knew October was Breast Cancer Awareness Month though. Even the pharmaceutical companies are not doing a good job promoting this. They do however, an excellent job at Breast and Prostate promotion. I have inserted a link to ALCASE if you would like to get educated, get involved or you are just curious. They have a section where you can get a boiler plate letter to send to our lawmakers. I would also ask that you forward this email to your email list and ask them to pass it on too. If all of us pass this email on, awareness will increase. That is the first step. Thanks for your time and thanks in advance if you pass this email on in recognition of National Lung Cancer Awareness Month in November. Jen Ackerman Click here: Lung Cancer Alliance - Advocacy - Lung Cancer Awareness Month is November each year ALCASE 888 16th Street NW Suite 800 Washington DC 20006 202-463-2080 800-298-2436 hotline lungcanceralliance.org NO MORE EXCUSES. NO MORE LUNG CANCER. Lung cancer causes more deaths in the United States than any other cancer. Over 60% of new lung cancers are diagnosed in people who never smoked or who managed to quit smoking even decades ago. Our initiatives aim to make fighting lung cancer a priority for more people and change public perceptions about the disease. Our unique patient education and support programs help people directly affected by lung cancer. ALCASE is the Lung Cancer Alliance - we simplified our name to better communicate our mission. FYI: Lung cancer is the leading cause of cancer death in the United States. Lung cancer causes 30%of all cancer deaths. Lung cancer is the leading cancer killer among Caucasians, African-Americans, Asians and Hispanic males. Lung cancer will kill more people this year than: •breast cancer •prostate cancer •colon cancer •liver cancer •kidney cancer •melanoma...combined Lung cancer will kill 3 times as many men as prostate cancer this year. Lung cancer will kill nearly twice as many women as breast cancer this year. Over 50%of new lung cancer cases will be diagnosed at a very late stage —Stage IIIb or IV —and only 5%of them will live for 5 years. Myth: After you stop smoking, your lungs go back to normal in 10 years. Truth: The lungs never go back to normal. Most former smokers remain at elevated risk. Current smokers:35-40%of new lung cancer cases Former smokers:50%of new lung cancer cases Never smoked:10-15%of new lung cancer cases

The literture states that small Cell tends to be far more smoking related (what I have). There are far less never having smoked patients w/ sclc. Andeo and Mesth, two NSCLC types tend have far more of the non smokers in those groups. My onco also told me this. BUT, I was also exposed to radon and asbestos, smoked and had asthma, so I think there have to some of these LC'c that are for multiple reasons, but they are not well defined. Jen

Does anyone have an article like this? For LC awarness month, next month. I would like to send an email to my email list which is extensive and ask everyone I send it to to forward it to their email list and each of them pass it forward. I specifically would like one that speaks about non smokers too because so many of my friends and collegues are amazed when I tell them non smokers get it too, genetics can play a role and that there are different kinds of LC some are more smoker induced, some are not. I can't believe how little everyone knows. Thanks in advance, Jen

A very HOT chick! Jen

Welcomee. I agree w/ everyone, its the meds, probably not the cancer. Her cncer may be extensive, but does not appear to be in any life threatening organs at this time. For example, BP meds can waste you, anti depressants, sleeping pills can all make you too tired to care. The Fentynal is the only pain med I saw. Where is the pain? Is she having the spine mets radiated? Jen

Di, I am sooooooooo happy for your results!!!!!! Love, Jen

I wont be at the race but live in this area. If anyone is in town for it email me. Jen

I am almost scared to post the most recent info as it could change in 5 minutes. But here goes: Last week had CT scan of chest, abd, pelvis it showed: left lung nodes a bit bigger (New last scan) ovaries the same right lung mess from radiation last year plus small new nodes T-11 Spine met still there shows (but had radiation and that’s ok) New sacral spine met Then I had the PET that was fused w/ the CT: Saw the same on left lung saw nothing on right but radiation damage saw T-11 spine met/radiation area 3 cm liver mass (this comes up on every PET since April 05, never the CT and the MRI we did a few months back said nothing there) New periaortic 2 cm mass (node) Sooooooooo, this is a mess, they don't match and the PET did not give SUV reading for the first time and did not compare to my last PET of 7/05. This was quite unusssual and both my Onco and I felt it was a crappy, incomplete report. But, he decided progression had happened and gave me a script for Glevac (oral chemo) and took me off the Topo. He then calls the PET Doc's boss and asks for a reread from the consultant they use who is considered the master. Get ready: He says on my 7/05 PET my vein was infiltrated and I didn’t get enough juice that’s why they didn't do a comparison on last Pet to this one. He also says everything is better Nothing new at all He also says new periaotic node mass is really my uriter tubes from my kidneys not met. I get a call at 10pm from my Onco telling me this and telling me we stay w/ Topo. WHAT!!!!!!!!!!!!The hell is going on????????? I am scheduled for my Topo all next week I filled the Glevac but didn’t start it I have no idea what to trust here and I am concerned about my tx being decided on wrong info Oh yea, head MRI post WBR: Had 4, but they originally told me I had 3: 2 are gone, 1 is the same and 1 is a tiny bit bigger. I think plan is hold for one month and rescan. Then Gamma if bigger. My bowel problem is at an all time peak. Nothing has helped, doesn’t seem to be cancer related, but I know it is. Full work ups X 2, got scoped. Its out of control and I am housebound it is so bad. Diarrhea is better, but bowel spasms have remained horrid. Its been 5 months of this nightmare. At the end of my rope on it. So, there is my mess. Have no idea how to put it all together. Sorry it took so long to post and update, but I wasn't sure what to post. Sorry post is so long. Thanks for all of the posts. Jen

I am almost scared to post the most recent info as it could change in 5 minutes. But here goes: Last week had CT scan of chest, abd, pelvis it showed: left lung nodes a bit bigger (New last scan) ovaries the same right lung mess from radiation last year plus small new nodes T-11 Spine met still there shows (but had radiation and that’s ok) New sacral spine met Then I had the PET that was fused w/ the CT: Saw the same on left lung saw nothing on right but radiation damage saw T-11 spine met/radiation area 3 cm liver mass (this comes up on every PET since April 05, never the CT and the MRI we did a few months back said nothing there) New periaortic 2 cm mass (node) Sooooooooo, this is a mess, they don't match and the PET did not give SUV reading for the first time and did not compare to my last PET of 7/05. This was quite unusssual and both my Onco and I felt it was a crappy, incomplete report. But, he decided progression had happened and gave me a script for Glevac (oral chemo) and took me off the Topo. He then calls the PET Doc's boss and asks for a reread from the consultant they use who is considered the master. Get ready: He says on my 7/05 PET my vein was infiltrated and I didn’t get enough juice that’s why they didn't do a comparison on last Pet to this one. He also says everything is better Nothing new at all He also says new periaotic node mass is really my uriter tubes from my kidneys not met. I get a call at 10pm from my Onco telling me this and telling me we stay w/ Topo. WHAT!!!!!!!!!!!!The hell is going on????????? I am scheduled for my Topo all next week I filled the Glevac but didn’t start it I have no idea what to trust here and I am concerned about my tx being decided on wrong info Oh yea, head MRI post WBR: Had 4, but they originally told me I had 3: 2 are gone, 1 is the same and 1 is a tiny bit bigger. I think plan is hold for one month and rescan. Then Gamma if bigger. My bowel problem is at an all time peak. Nothing has helped, doesn’t seem to be cancer related, but I know it is. Full work ups X 2, got scoped. Its out of control and I am housebound it is so bad. Diarrhea is better, but bowel spasms have remained horrid. Its been 5 months of this nightmare. At the end of my rope on it. So, there is my mess. Have no idea how to put it all together. Sorry it took so long to post and update, but I wasn't sure what to post. Sorry post is so long. Thanks for all of the posts. Jen

Need feedback on Glevac please. Still don't have all the results back. We agree it has spread, but conflicting reports on where. CT and PET are saying some very opposite stuff. My Onco got pissed and called the radiologists supervisor. Wants full new review and new report. Thanks, Jen

Still dont have all the results back, but it has continued to spread so Topo isnt working. What is 3rd line chemo for sclc? Does anyone know? See Onco today to discuss. Thanks, Jen

Is there a targeted brain radiation for mets (Gamma Knife for example-but this uses a halo) where you dont have a halo screwed into your head? PS What are all the different kinds of targeted brain radiation? I find the whole topic a bit confussing. Thanks, Jen

Such great news. Congrats. Jen

I know you have posted this before for us, but I don't think you understand our challenge. Most of us if on the board, have already been dx. A biopsy has already been taken, is in slide form and its too late for us to get solid or liquid specimen to do this testing. Most of us would of course want this testing and a more targeted chemo. Getting this info out to the crazed, upset, freaked out beginer who is just getting ready to have their biopsy would be the target audience. I have no idea how this group would get this info. When you first learn you have LC, but not specifically what kind because you have not had the biopsy yet would be the ideal time because you are making arrangements to get your biopsy etc.... Thats who needs this info. Jen

Thanks so much for the vibes. Love, Jen

Thanks for all of the replies. Last few scans I have not posted before hand, but I decided I needed to get those good vibes you guys send out You guys are great. I will know Mon MRI results probably Monday afternoon. Wed is the CT will probably know Wed. afternoon. Thursday is the PET and CT fusion. That could be Fri or Monday on results. I intellectually agree with all the advice, but we all worry at scan time and I am no different. Its also a bit harder w/ you have turned the corner and gone from always getting good news/scans (last year scans) to getting bad news (this years scans). Frankly, I don't know how we all get through this time without jumping out of our skin, taking heavy meds or going on a huge Martini binge. ))) The stress is just horrible including having to do the dam tests which I hate. Not a fan of the MRI machine or Pet machine. Both take too dam long and are so confining. But, we do get through these times and I am grateful for such great people who know what all of this is like. Much love, Jen

Scans all next week. Head MRI, CT/Pet of Chest Abdomen and Pelvis. Dreading it beacuse I am scared. I have not felt well consistantly for some time and just hate waiting for the results. The board has been so quiet. I am also to blame for this. I just hate posting negative, negative stuff and since I have not felt well I have not had much more to offer. It seemed like sclc was so busy last year it was hard to keep up w/ everybody. I miss the activity, but I know I am part of the problem. Putting it out there about the scans because I do believe in all the good vibes you guys harness and send out. Thanks, Jen

I love the show but was very disappointed at how they portrayed this LC issue . House looked at the xray and said she is terminal, tell her and we are not wasting our time on her.He felt spending their time on a death row inmate was of more value. Unfortunetely, that is the attitude many times about LC in general and it shouldn't be. The fact that they portrayed that as a "no hope" was sad at best for LC. Jen

My chemo gives me terrible gas. Sometimes gas is worse than being constipated. Try some Simithicone pills (no script needed) or the brand of simithicone called Gax X. Triple the dose.

Yes, they said thats not it. They said Ferratin is the storing of iron, but my actual blood levels were fine. I just didn't get why I am storing so much and what are the associated issues with it. So,. I thought I'd post and see if anyone else has had this. My liver tests are perfect so its not liver damage. They said they would re-run them next week. My actual RBC is still low. Ferritin is normally found mainly inside of cells, with only a small amount in the blood. When there is damage to organs that contain ferritin (especially the liver, spleen, and bone marrow), ferritin levels can become elevated even though the total amount of iron in the body is normal. Ferritin levels may not be particularly helpful in persons with liver disease, chronic infections, cancers, or autoimmune diseases (which are all associated with organ damage).

My Onco's off ran some iron studies and everything came back normal except Ferritin. 715 was my result, range is 10-232. I just didn't understand what Ferratin is or why mine is elevated when they explained things. Has anyone had elevatin Ferratin levels? Do you have any idea what that really means? I was taking iron suppliments at the time of the test but they have since told me to stop. The day of this test my Hgb was 9.1 and my Hct was 26.9 I had also recieved Procrit 4 days prior (have no idea if this has anything to do with Ferratin but thought I would tell you anyway). Thanks and hoping all are well. Jen

Hey Addie, You and that dam steroid energy. I can see you hauling around all this stuff and you just had chemo. I took the lazy way and sent a donation this am to the Red Cross. New Orleans is my favorite city. Mike and I had actually decided to retire there right before I got sick. He is a Blues musician and it just made great sense. I must say, the looting of non essentials is strange. Where are they going with this stuff? How are they plugging it in (electronics)since there isnt any power, where are they storing it to sell or use later? After waiting 5 dam days for food and water I would also be in a store getting anything I needed to survive, but designer cloths and electronics???? As usual my dear, your spirit is an inspiration. Love, Jen

Fay thanks for the reply. Yes been checked for that but they are rechecking for it now again, 2 months later.Redid all the stool cultures Friday. Thanks to all that replied. It means a lot. Jen