johnny_cubert

Forgive me for not writing sooner -- it's been four months since my mother died -- but as you can imagine... Thank you all for being there throughout the six months that was our journey. I found much relief coming to this site. I'm back in LA -- trying to get back on track. Mom is in my thoughts all the time, lately. I did a good job of avoiding thinking about it all too much --but now, I can't escape it. I'll get back on the site soon, and write properly... johnny

When my mother was first diagnosed with Stage IV NSCLC, a friend in LA sent me over 100 pages of information from many new age sites concerning information ranging from conspiracy theories to diet plans for cancer. I am a very open minded person -- but I was being bombarded with "ideas" and "theories" and just wanted to get my mother treatment. We found a great doctor in Chicago -- Dr. Hensing -- and then went home and were pleased that the local doc -- Dubuque, Herman -- gave us the same plan of attack, the same drugs... including Avastin. So we felt comfortable with his plan, if not with his presentation or bed side manor. Half way through the chemo we felt really good. The cancer had stopped spreading, but didn't really shrink. Mom had gained pounds instead of losing, she had not gotten too sick -- our only issue was the pain... and the loopiness that the pain killers brought to the table. She was eating, and we kept her hydrated through frozen pops. We were so concerned about her not drinking water that we were thrilled to hydrate through these sugary treats. NOW I AM CONCERNED that we did her a disservice by not paying strict attention to her diet intake. We are now done with the chemo -- six cycles! BUT the new scans revealed that the cancer has grown -- esspecially in her liver. I've read that sugar and red meat feed cancer. Must I get her to stop eating sugar, and red meat... and get her on a diet plan that will compliment further treatment? Some of the reading suggests YES, and makes me worry that I should have focused on other ways to get her to hydrate. I am planning on asking the doctor if we can try avastin again -- for two or three cycles -- with a strict diet -- to see if it helps. But is that six weeks too long to take a stab at this? If anyone has thoughts on diet and cancer... feel free to respond... Thanks for reading and for the continued support!

when our doc let us know that we were suddenly off the avastin, and he suggests alimta -- but alimta didn't have all the fancy papers that Avastin came with and the doc wasn't as enthusiastic as he was to sell us on the AVASTIN... with avastin we had dreams of five year life span if not more -- of course, we are optimists, we also knew she could die a year from now -- but at least we had the pretense of hope until the doc took us off saying that the cancer was growing and we had to try something else... so what about this alimta... are there a few success stories -- a few people that have had an extended quality life span??? jW

Today was the day that we were to go over what the next stage of my mother's treatment was to be. We discovered the avastin treatments have been canceled, and our doctor at a loss for words, suggested perhaps Pemetrexed Disodium - Alimta. Her cancer has grown -- now her liver has much more damage, and on her bones the spots are larger, and the spine has larger tumors -- half way through the chemo regiment we discovered the treatments had only stiffled the growth and did not shrink it... but we were happy -- now to discover that our Avastin dreams are gone -- once again he went out of his way to say "this will end your life" -- and that he didn't have a well thought out plan to replace it -- is a bit disconcerting -- she begins radiation to the lower spine next week to help get her out of pain... ugh!

I know this is actually the introduce yourself posting spot -- which I have done earlier... but I was unsure where to post -- I am sadly insecure on websites... My question is: My mother, 58, lung cancer diagnosed in April... it moved to her bones... stage four non small cell... She has taken the six chemo treatments well -- and now we are deciding what's next. Today is actually her sixth.... she will continue with avastin every three weeks, for as long as she can take it. She seems to be well -- she gained weight during the process, she has good coloring, she's not coughing as she was seven months ago... But the pain is horrible. She has some tumors on her lower spine, and cancer spots all over her bones... but the pain is on her right side, her leg goes numb, she has a hard time walking.... and everyone says "oh, the bones... that's the most painfully horrific experience" The doc in chicago suggested radiate the spine first to get rid of the pain, the doc in dubuque said chemo first, meds to deal with the pain.... I agreed with Chicago, my dad agreed with Dubuque... the meds have been a roller coaster -- at times she is incoherent, she is forgetful, and the dosage keeps growing. Now that we shall finally start the radiation to her lower spine, does this mean that she'll be able to have less meds and the pain won't be so bad -- or is how she is now, the best she'll be... ALSO - she has developed quite the bloated abdomin... it looks as if she is pregnant... someone mentioned that could be fluid building and we should have a sonogram to check -- is it just the steroids making bloat -- when i mention it to the doctor he askes if she is "regular" and she is.... thank you for all of your support during these months, I really appreciate it. And sorry for leaving this here in the intro section... johnny cubert

I must make my mom's better, it really helps to follow your trail of docs and meds and thoughts thanks, again!

In late April my 58 year old mother was diagnosed with stage IV lung cancer. (non small cell) I am at Dubuque Internal Medicine's oncology center -- my mother is receiving her fourth cycle -- we are getting a cocktail which includes Avastin and Carboplatin and Paclitaxel - and zometa and steroids. The doctor met with us to talk about the full body bone scan done this week in comparison with the one done before treatment began. The news was not bad, but it didn't seem good. He said that the cancer hasn't spread, that it has stabilized (not his word, I'm sure) the tumors in her lung have gotten smaller but not much else has happened with the various spots where the cancer exists. He said that it may have effected the cancer we can't see... It's hard not to take this news negatively. We don't want miracles, but his presentation was really difficult to take. (He speaks very loudly and as if he has just drank three cups of coffee -- he always has a white ball of spit sticking to his lips as he speaks. Dry mouth????) I don't love him. I wish I was in Chicago with the doctor we met with first. Three weeks ago we left this office feeling really good -- we were told that my mother's body was taking the chemo very well and that she would be going six cycles instead of three. That seemed like good news. Today it seems like whatever we do it's only going to keep alive in this same condition as long as we continue treatments.... what happens when we finish these six cycles?? I know that when we finish these cycles, we shall go to Chicago for a comparison of the body scans and have a second opinion. When stage four lung cancer involves the bones, can one live for a few years, enjoying life? Is it all worth it? Today I am very sad. HERSTORY - of Georgia.... AUGUST 2007 felt funny in chest, doc said it was her heart, and she wasn't sick enough for any exploratory tests JANUARY 2008 was told by doctor she had pneumonia, and treated for such APRIL 2008 - 14th - turns 58, coughed up a little blood (finally, a sympton to justify a test) 24th - doc told her no hope, stage iv lung cancer 26th - horrific pain in lower back, emergency room 29th - to Chicago for second opinion told there is always hope, and statistics... but it is terminal MAY 2008- 1 - full body bone scan / MRI 2 - new local doctor - Dr. Herman suggests chemo plan of Taxil, Carbo, and Avastin plus zometa (bone strengthener, & steroid) told cancer is on skull, but not in brain it is on lower spine, in lungs, in blood, and various other places.... told the tumor on liver is to be ignored... 6 - Chicago doctors suggest radiation treatment to lower spine, to shrink tumors, chemo later Local Doc says, treat pain with Morphine and to attack the body's cancer with chemo plan 7 - PORT put in, Chemo treatment started 8 - felt great, went shopping... 9 - felt lousy, in pain, not hungry, won't drink 10 - same as 9 11 - Mother's Day, came downstairs, but tired early, stayed in bed throughout the afternoon 16 - shopped again! 19 - family flew up and visited, naps in afternoon 21 - aggrevated back, two days of horrible pain 22 - 27 WEAK 28 - 2nd Chemo treatment JUNE 3 - lost ten pounds since chemo started discovers popscicle do the trick and pancakes and pasta with butter 13 - gained five pounds 18 - third round chemo JULY 7 - full body scan 9 - fourth treatment - gained 8 pounds! scan shows very small decrease in size of tumors in lung not much of a change anywhere else

thank you all for the comments and for the histories of your (or your loved one's) treatment...and diagnosis... I'll respond more and keep up with this foundation, I am very lucky to have found you all. johnny

I was searching through the site and saw your title and thought it was my own... I wish you strength and peace. johnny

Hello, my mother told me thursday night that she has stage four large cell lung cancer. when i spoke to my step-father he said the doctor(s) in Dubuque, Iowa also mentioned stage three lymp nodes, cancer in bones and in the blood. I write this as he said it - as a list. Since speaking with him, I've learned that it is not "large" but "non-small" and that it is only stage four not stage three lymph and stage four blood... now I understand fully why he and my mother want me to accompany them on the visits to take notes for them. My mother was a smoker from the ages of 15 to 50. She is now 58. Winston 100's were her choice. She also took the birth control pill for at least two decades. (She was a highschool dropout runaway, I was the result of her teen aged pregnancy... She and my father married on her 16th birthday, I was born shortly afterwards, she married met my step-father in 1990). I immediately demanded that they leave Dubuque and come to Chicago -- I assume the "big city" has better options, better doctors, perhaps even a little more progressive/experimental treatments. In Dubuque, they told her it was terminal and that they could do nothing for her -- and from my calls around Chicago and to friends, it seems they are right. It is not about saving her life, just prolonging it and making it more comfortable. My aunt Joanne was the first person I called as I stood at the cocktail party with my cell phone and martini. I stood against the wall, my back to the 300 people in the room, my sobs quieted by the soft wallpaper. My mother and I just had our fist conversation... My aunt told me to call Stephanie Williams (northwestern?) to make an appointment. I called and left a message. I then called some friends on the north shore of Chicago, I trusted them to know "the best" and asked for a referral. They made some calls to friends and got back to me with Tom Hensing. "THE doctor to see" they said. "Hospitals around the country have tried to get him -- that's how good he is." And I trust these people. So I called. I was really happy with the outcome. I spoke to Gail (847-570-2000, Evanston Hospital). Gail spent (what seemed like) 20 minutes on the phone with me asking me questions, telling me from her experience what I should expect, regardless of whether or not my mother sought treatment from their hospital. Luckily, there was an appointment available Tuesday. Dr. Williams' office got back to me and we got a wednesday with her. My parents have insurance, and very little debt, so why not see two oncologist? My parents were reluctant -- my mother wants to be close to her husband, he needs to plant the crops over the next month... but they both want what's best for her. I told them to hire someone to plant the crops and I would find them a house to rent if it came to that, near the facility of her treatment. Gail told me that sometimes it's not having the best doctor in a big city that matters, that sometimes the comfort of being home means more -- and that depending on what exactly needs to be done, Dubuque could suffice. Everyone considers this a pronouncement of death... but we all die -- at least we now have the chance to enjoy my mother's company. I've called her everyday, three times a day... my sister and she have made up -- as have others who weeks ago may not have been getting along. I've decided not to "come out" to my mother, it no longer matters to me that she knows that I am gay. i began to google and found this sight, but on my way here I have seen (read) so many contradictions... I look forward to the meetings on tuesday and wednesday and look forward to being there for my mother as she goes through this horrible experience.