jane

Sounds like things are really going well for you! I love to hear when people really make headway against this disease! Even though you have more to go through, it seems that you are heading toward a great result.

Adam, Best of luck to your dad. Hopefully this treatment plan will make things improve. You sound like a great son... Jane

Becky, sorry about the frustrations at MD Anderson. My sister is treated there and sometimes I'm not really sure that the best care is offered in such a bureaucracy..... they have so many "policies" etc.... although we really do like my sister's oncologist, and she is very positive. The rfa there sounds promising for the rib, hope that works for you. And keep searching for clinical trials.... something is bound to be out there that will help you..... Jane

I understand the shock and grief that you feel at this time. My 47 year old sister was diagnosed in July 02 with Stage 4 NSCLC and given a very poor prognosis. She decided to fight, and that she has done. It is now far, far beyond what her projected lifespan was by the "experts". It hasn't always been easy nor pleasant, but she has opted to participate in the treatments deemed appropriate throughout her ordeal, and by and large, has responded well. None have been the "cure", but we sure keep praying and trying the next treatment. Most of her days of the 19 months since diagnosis have been good, and she aims for many, many more. A disease such as cancer changes each person it touches. I don't know what it feels like to have cancer, only what I feel like as I hurt for my beautiful sister (in so many ways) and her husband, son, and my parents. In my opinion, one must become very educated about the disease (as scary as that education becomes), and then make choices that one can LIVE with....no matter how long that may be. And we, as family, must respect those decisions. I cannot judge another's choices until I've walked in their shoes. I wish you and your mother the best of luck and the best results of treatment, if that is what she chooses. Take care, and keep posting.

Hang in there, you obviously SHOULD be living this long and longer!!! My sister's first oncologist "gave" her a projected lifespan, and she has FAR outlived it, and nicely the vast majority of the time. Notice I said "first" oncologist. She quickly got another who has a much more positive attitude. We are also very interested in rfa, and are communicating with three places, including the one in Jackson MS. Shane (my sister) has had her ups and downs, as you all know so well. But each time she has gotten not-so-good news, another plan of attack comes along and things turn upward. So, like everyone else says, keep yourself thinking positive. I wish you the best.....

I guess I am really late, but happy belated birthday! I was wondering if you had heard anything from the RFA Dr. Nielson in San Antonio. My sister is looking into that one also (as well as rfa in Jackson MS and GulfShores AL). You had responded to my rfa email, and I told you that my sister lives in the Conroe TX area (rather close to where you live) and that she also is a patient at MD Anderson. They are kind, caring, and knowledgable, but beware of its size! Because it is so large, sometimes you can feel like a "number" (and you are, literally, a patient #). Be persistent and make yourself known...... a couple of the front people in the thoracic dept know us (especially my mother)! The wrath of moms, beware. Anyway, best of luck. I think you'll like MDA (considering...). Here's to many more birthdays! Hope the cake was good..... Jane

My sister is 48 and a nonsmoker diagnosed in July of 2002 with Stage 4 NSCLC. She is an inspiration. Everyone is right about attitude and perseverence. She refuses to "listen" to statistics and puts her faith in God. She has had a variety of treatments, and has responded positively to each one. It has been 18 months since her diagnosis, and except for her very short hair (which is different "look" than her usual), a stranger would never know that she has cancer. Shane has tried very hard to eat healthy, exercise when possible, and takes a variety of minerals and supplements. I feel in my heart that those choices have also helped her endure the side effects of the treatments. Recently, the news has become grimmer than it has been in quite a while, but we have the faith that changing her treatment yet again will change that to the good. I'm so sorry that you and your family are having to grapple with such a serious disease. My heart goes out to you, and to your children. Jane

Becky, So sorry to hear your news. My sister has been at MD Anderson since her diagnosis and since you have been referred there, I'd like to recommend a particular thoracic oncologist (there are quite a few, as I recall 17 or so....maybe more). Her name is Dr. Pisters. Shane had a different oncologist at first, but the "chemistry" was lacking. As everyone knows, the doctor-patient relationship is so very important. As for the RFA info, please keep me posted. We are beginning our "search" for the appropriate facility as well as finding out if she is a candidate for the procedure... we will be checking into the San Antonio clinic. I hope that you are a candidate for the procedure, as it seems very state-of-the-art and offers a chance at knocking out your cancer. My sister Shane is 48 and also is a non-smoker. She lives in the Conroe area, so you and she are "neighbors", so to speak. Please keep in touch, and email me privately if you wish. I will add you to my prayers. Jane

Hi. I haven't posted in "eons", well actually months. Many of your names are new to me. I have spent the last week or so catching up on all of your events, rejoicing in your good news, and grieving the not-so-good news. For those of you that have joined within the last several months, I have a sister, Shane, who was diagnosed late July of 2002 with Stage 4 NSCLC, and she and our family have been on this journey for almost 18 months now. All in all, she has had many many more good days than not. She had brain surgery, radiation, chemo (cisplatin and gemcitabine), took a three month break, then was on Iressa for seven months. Now she will start a new chemo round.... As you all can relate to, lung cancer (well actually the fight against it) has dominated our family since the diagnosis. When she got on the Iressa last May and responded so well so quickly, I have to say that our family was lulled into a new sense of normalcy and we all (especially Shane) focused more on day to day life than on the illness -- a good lesson overall I know. Two days before Christmas, we were faced with the news that the cancer had begun to grow again. Thus, we are looking again for treatment options. She is very interested in radio frequency ablation. I have read many posts here about the procedure and found good information online. I am looking for anyone who has actually had the procedure done.... We live in Texas but are willing and able to travel anywhere for a consultation/procedure. Shane has asked me to do her "leg work" for her this week, as she is undergoing gamma knife for two small brain mets day after tomorrow. Any information anyone is willing to share would be so appreciated. I welcome the message board posts or a personal email. I can be reached at either janedickerson@cox-internet.com or at jdickerson@mwisd.esc11.net Thanks so much and God bless and keep you all.

I admire your dedication to your goal(s)! Of course, you live in one of the most outdoor-activity inspiring places on earth! I am getting through 100 degree days here in North Texas, but I have been to Vancouver and to Whistler in July (twice, 10 years ago and 8 years ago). Best of luck to you, you are not only an inspiration to folks on this board, but I know to all who know you or hear your story..... so keep on telling it! Jane

So sorry for your loss, so thankful the end was peaceful for him. Cancer cannot touch your love for your husband, nor the wealth of the memories. Jane

The news is GREAT! It really couldn't be much better! I feel sure that the remaining brain tumor will continue to shrink until it disappears (we were told that the radiation "keeps on working" for six months or more). I hope the next round of tests goes well..... jane

My sister had whole brain radiation (10 treatments) late August of '02. She is currently doing very well on Iressa. As far as side effects of the radiation 11 months later, there are very few. I would say that yes, her short-term memory is slightly affected..... sometimes she doesn't remember telling us something.... like she may forget where she placed something or forget to relay a phone message.... but she kind-of was a spacy "blond" to begin with. So, I'd say that the difference in her memory is very very slight. Only those closest to her detect it at all. The only other difference I notice is that she requires somewhat more sleep than before. Now, she rarely naps (she did for some time), but seems to need about 10 hours sleep per night..... a couple more on the average than before her diagnosis (although whether that is due to radiation could be questionable.....) Hope this helps. Jane

After six weeks on Iressa, my sister (48 years old) has had no noticable side effects. She uses completely organic (natural, whatever) cleansing products (soaps, shampoo, toothpaste, lotions, etc) and has for some time. She has become a chemical "freak" (she calls herself that.....), and that started way before the Iressa prescription. But I do think that maybe that has helped keep a rash from developing..... jane

All good news for you, congrats! And also for the new addition to the family..... pups are wonderful and loyal. Jane

Marlon, I have read your postings for quite some time (I read most of them on the old message board last fall), and while I don't think I ever responded before, I feel the need to respond now. You are a quite a young man to have taken charge (and so successfully) of your mother's life-saving events of the last year. I commend you for that. But you are also way too young to be so bitter about your mother's marriage and the twists and turns brought on by her (and his) choices. I am a professional counselor and I sense that you need some counseling..... on acceptance primarily. You have your whole adult life ahead of you and so much to look forward to.... don't spend too much time looking backward. Every day of our lives are filled with choices and we EACH must accept the consequences of those choices. You do, I do, and so does your mother. That doesn't mean that we cannot help loved ones and give our support, but we also don't have to take on everyone's problems and try to solve them. Your stepdad has certainly had alot to do with fostering the bitterness within you, but I know the stress of the last year must have further compounded the problems. DON'T become a bitter man because of events far out of your control. Please seek help. Your happiness is so very important, even to your own mother I bet. I wish you luck, and patience. I will look for more posts. If you would like to email me, please do so (I think you can do that through this message board, right?). Take care of yourself, you deserve it. Jane

Hope you get the swallowing under control real soon. You sound like such a strong woman, you're no sitting duck..... you are letting your body rebound from a very taxing treatment. I wish you the best. Jane

The above postings are so on target. The right attitude from all parties involved is half the battle. And there IS a battle plan. I wish you and Tim the best..... and will pray for your miracle. Jane

Rana, I don't know the words to say, but know that we all care. Sometimes, all we can do for one another is to allow the "venting". Its ok to do that.... and I am so sorry for what you and your mother (and others) are going through. Jane

Thanks to all of you for your supportive responses.... to Cathy, Ry, and Tim's Kathy, hope the Iressa works for your loved ones.... after about 6 weeks on Iressa, Shane has had no detectable side effects.... not even the rash! She pooh-poohs that one though, and said she'd be pleased to have it as long as it works! I will update again after her next appt, and will be watching the posts for good news from all of you.....

I too am so sorry for you, your neices, and the rest of your family and friends for the loss of Sally. Through your words, it is evident that she is someone special..... and think of the many young lives she touched. I know she made her part of the world a better place. I too have a sister (48 years old) fighting Stage 4 NSCLC. I can relate. Bless you all.... and all who are affected by cancer.

So sorry to hear of your loss. My sister, too, is stage 4 NSCLC. Charlotte sounds like she was such an inspiration to her family and friends.....

I don't post often, but do read many of the postings. I wanted to share with all of you, who can relate better than anyone else, my sister's miracle. Since I don't post often, a little background first..... my 48 year-old sister, Shane, was diagnosed stage 4 NCSLC, with mets to brain, liver, and spine last 08-02. Had brain surgery, radiation, then 4 months of chemotherapy (cisplatin and gemzar). By Feb '03, blood counts were too low to continue with chemo. She decided to "rest" from the chemo for a while..... after three months off of it, the cancer had of course, grown and she had developed a new met. She was running out of options, because her counts continued to be too low for any type of aggressive treatment. BUT, the FDA had just approved Iressa, and her doctor prescribed it for her, and told us that within 30 days, we'd know whether the drug was effective..... Before 30 days was up, we all knew the drug was doing good things. Her energy level was up, as was her appetite, attitude, etc. She gained a few pounds, and the cough she had developed subsided significantly. The doctor's appointment confirmed what we already knew.... her cancer had shrunk "noticably" (the doc's term....). All of us were giddy with joy (even the doctor hugged her!). She is continuing on Iressa and I see improvement in her condition each time I see her. In fact, last weekend she and I helped her son move into his first apartment (he is that magical age of 18!). She hasn't felt up to anything so physical in months! Although she is a ways from remission, it is so wonderful to be filled with such hope. Her next appointment is at the end of July, and we all expect another positive report..... Shane gives all glory to God for her miracle. Through Him lives hope. She was aware of the odds of Iressa, and also knows the uncertainty of future effects of the drug. But for now, she believes that God will reveal His purpose for allowing her to benefit from this treatment. And she appreciates how blessed she is. As for me, I am ecstatic that my sister has a chance to resume a "better than ever" normal existence. Better because nothing is taken for granted anymore..... as you all know. I feel that drugs like Iressa are the treatments for many cancer patients in the near future..... a way that cancer can become a manageable disease, drugs tailor-made for a person's unique genetic makeup. God bless all of you, whether you are a cancer fighter or a loved one. I pray for you all. Keep the faith and keep your hope..... Jane

Hello to all. It has been at least 6 weeks or so since I've had access to my computer (my college-age daughter had to borrow it temporarily...). Anyway, I have spent a couple of days reading posts since my last visit! There are some new people on since I posted last, so hello to you all, and consider the following my "introduction". As some of you may remember, my sister, who recently turned 48, was diagnosed in July '02 with Stage IV NSCLC. First symptons were the mets to the brain, she had surgery then radiation to the brain, and the radiation has continued to improve those metaseses, even as recently as last week. Four months of cisplatin/gemzar shrunk the lung tumor significantly, then due to weight loss and depressed blood cell counts, she has not had chemo for several months. Last week, a complete restaging was done, showing the primary tumor has grown quite a bit, and there is a small spot on her pelvic bone, but no other new metaseses. Even three months out of chemo, her blood counts are so low that her oncologist doesn't recommend further chemo at this time. She will be prescribed Iressa as soon as MD Anderson recieves the shipment in their pharmacy. We, of course, are praying that this will be the miracle for her. I am so worried about her, her husband and son, and my mother (who moved in with her 10 months ago). I live five hours away and I get down to see them as often as possible (about every other or third weekend). I am an educator, so with summer coming I will up my pace of visits. We are all having an extremely hard time coping with this disease, as lung cancer was probably the cancer we "feared" the least -- no family history and she is a non-smoker. I am not asking for advice or anything, I just wanted to vent some, and I knew that anyone reading this post could relate. My sister's only thread of hope is the 10-20% chance of Iressa "doing something" (her onc says great things can happen in 10%, and 20% show some level of improvement). She absolutely is not ready to leave this world, and I can hardly blame her. Her son is 18 years old and needs his mom. And WAITING for the Iressa to arrive at the pharmacy and then the WAITING to see it's effect is so frustrating! I am so sorry for each of you in a similar situation. I pray that more discoveries are made by researchers to enable our loved ones to once again thrive. I pray for all of your loved ones in their struggle against cancer and for each of you as a caregiver. After I finish "catching up" on recent postings, I will again participate on the forum. Thanks for "listening", or more accurately, reading..... Jane

Iagree with alot of what you said. However, my sister is being treated in a large medical cancer center and DID get assigned a patient advocate. In her case, when she requested a change in doctors, the patient advocate (being an employee of the institution) was more concerned about doctor #1's feelings about being dismssed, than my sister and basically told my sister and mother that it couldn't be done..... You should have witnessed my mom's reaction to that! Now some MOM's can be a stronger advocate than a hired one, and in the end, a doctor switch was made, but NOT due to the patient advocate. Needless to say, we no longer use the patient advocate....... About alternative treatments, particularly with advanced cancer patients, I agree wholeheartedly. My sister is currently pursuing some of them, and at the very least, she is FEELING better..... hopefully getting some response too. Her oncologist (#2) was at least somewhat supportive of my sister looking elsewhere, at least temporarily. She is not "giving up" her primary oncologist, but is exploring/trying other things. After all, she knows her grim prognosis with conventional medicine.....