Peggy H

Don - I'm glad Lucie is on Zometa - my sister had lots of bone mets but was on Zometa since it was approved last December & never had a whit of problem with the bone mets causing any pain. I'm also glad that her doctor is trying Iressa as maintenance - a research nurse told me a few weeks ago that there is some indication that the EGF inhibitor drugs may take up to three months to stabilize cancer! Have a great holiday!

I know that doctors usually need to be present for any of the taxane drugs - Taxol or Taxotere - because of the high risk of allergic reaction. I also have never heard of "home chemo" - but I've witnessed a number of patients who arrived for chemo via ambulance to the clinic my sister went to. By the way, the weakness is due to the cancer, not the chemo? Chemo causes PLENTY of weakness. I don't know how the doctor could know the cause without examination, blood tests, or other tests. My sister's last chemo made her so weak she could not stand or walk. Good luck.

Okay - this may not be of much comfort to those of you who are suffering the "Iressa Rash" but I do recall reading somewhere about a possible connection between the severity of the rash and the effectiveness of drug . . .

Mary, I can, with all honesty, say that I know how you feel. My sister Sally was admitted to the hospital a day after your Charlotte & died two days before she did. I've been following your story because I've felt so connected to it - I cannot believe our sisters had such a similar death, but maybe that is the nature of this disease. Some time ago an oncologist we consulted told me that because Sally had so much chemotherapy she would not suffer some of the many medical & physical symptoms that often accompany lung cancer. She really didn't. She worked until the last day of school this year & then two weeks later had a very sudden and dramatic downturn requiring immediate hospitalization. I will never forget the look on her face that morning, after I had consulted with her doctor on the phone & he told me to take her to the emergency room. The look was what I now recognize as grief. As though she knew she would never come home. She didn't. Sally never, ever, ever believed that she would die from this disease. When some medical professional told her otherwise - and they FREQUENTLY DID - she would just ignore them. I guess her faith helped the rest of us, including her daughters, to believe it too. Sally is not only the heart and soul of our family - she is one of my best friends. I will miss her every day as long as I live. The minister told my nieces that Sally DIDN'T want to leave them and God DIDN'T want to take her, but He has made a place for her in His house, and they will all be together again someday. That seemed to bring them some comfort. God bless and keep you and your family.

My sister Sally died Saturday night at 8:00 pm, shortly after her two girls left after saying one final goodbye. Mom & I were blessed to be able to be there, holding her hands. We will miss her every day, as long as we live. For those of you who have been following our story, I'm printing the notice. Sally always stated that she didn't want any mention of her cancer in her notice or at her funeral. She didn't want to be remembered for that: Sally J. Holtman Lohner Sally J. Holtman Lohner, 49, of Kenosha, died Saturday (June 28, 2003) at Kenosha Medical Center. Born on Feb. 16, 1954, she was the daughter of Jack and Frances (Binney) Holtman. A lifelong Kenosha resident, she attended local schools and graduated from Tremper High School. She graduated from Carthage College and received her masters degree from Olivet Nazarene University in Ill. She was employed at Mahone Middle School as a teacher, and previously at McKinley Middle School. She was a member of First United Methodist Church of Kenosha. Survivors include her parents of Kenosha; two daughters, Sarah Jayne and Emily Jeanne Lohner, both of Kenosha; two brothers, Jeff (Joan) Holtman of Paddock Lake and Jim (Roxanne) Holtman of Kenosha; and four sisters, Nancy Guarascio of Kenosha, Peggy Holtman and Debbie (Jon) Konings, both of Milwaukee, and Cathy (Jim) Spivey of Wilmot. Funeral services for Sally J. Holtman Lohner will be held on Wednesday July 2nd 2003 at 6:00 P.M. at First United Methodist Church in Kenosha. Private burial will take place at Sunset Ridge Memorial Park. In lieu of flowers, memorials will be designated to the Sally Holtman Lohner fund to benefit students with special needs. Sally is further survived by 6 nieces and nephews and a dear friend, Char (John) Sacket. The family would like to express special thanks to the staff of Mahone and Mckinley Middle Schools for the support and generosity they have provided to Sally over the past two years. For more information, please call Family Options Funeral and Cremation Services at 262-554-6533. Sally loved this song and sang it to her girls constantly (much to their chagrin!). It's printed in her Funeral program, "To Sarah and Emily:" Lee Ann Womack I Hope You Dance I hope you never lose your sense of wonder, You get your fill to eat but always keep that hunger, May you never take one single breath for granted, GOD forbid love ever leave you empty handed, I hope you still feel small when you stand beside the ocean, Whenever one door closes I hope one more opens, Promise me that you'll give faith a fighting chance, And when you get the choice to sit it out or dance, I hope you dance.... I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Living might mean taking chances but they're worth taking, Loving might be a mistake but it's worth making, Don't let some hell bent heart leave you bitter, When you come close to selling out - reconsider, Give the heavens above more than just a passing glance, And when you get the choice to sit it out or dance, I hope you dance.... "Love, Mom"[/b]

Shannon - I, too, have been accused of "pushing" my little sister to continue her battle in spite of the "best" professional recommendations. Over the past two+ years she has been told several times to "get her affairs in order." We both decided "they" were wrong, it just did not feel like it was HER TIME to go & I helped her make further treatment decisions. Thank God! For some reason, I was always confident in my heart that I would know if and when it was time to stop - and let my sister go. Unfortunately, that time was yesterday. Shannon, you are right, no one else can know if and when the time has come. You will know it in your heart. You just will.

I haven't posted in the last week, four days after her first treatment of CPT11/Cisplatin my little sister Sally took a sudden and dramatic downturn. I took her to the Emergency Room, she was admitted and has been steadily declining since. Without going into detail about all the medical horrors of the last 10 days, Sally is expected to die at any moment. Our family will meet this afternoon to discuss hospice care. Her little girls are devastated and beyond comforting. My only consolation is that, thus far, Sally is in no pain. She has been present for discussions about her condition and prognosis, but, thankfully, doesn't remember them so she isn't frightened. I will be eternally grateful for the assistance, support, and comfort I've received from members of this board. Bless you all.

Becky - I agree with Tiny. Ask for copies of the written reports. We may not understand all the medical terminology but go right to the "Summary" section at the end - we all know what "increase" "decrease" "no change" and "new lesion" means. Then we can ask specific questions. My sister's oncologist also has a habit of saying things like "about the same" or "some disease progression." Now, maybe that's all some people want to know, so we have to be very specific about what information we demand. Good luck.

Deanna - I know it seems very counter-intuitive, but this is pretty standard procedure. Most research shows that cytotoxic chemo drugs lose their effectiveness after a few rounds (I read one recent research study that said after 2 rounds) and then you're just poisoning people with no proven benefit. Sometimes oncologists will keep administering chemo as long as they are seeing a positive result. Then there's the concept of the "rest" period - giving the body time to recover & detoxify - so as to be more ready for the next battle. My sister always tried to convince her oncologist to keep going with chemo and he'd always want to "wait and see." It's very frustrating for her. Because, as you said, 4 - 6 months later there would always be some big, gross, scary, increase & spread to other organs. I guess doctors don't want to take a chance on doing something outside the standard protocol.

Hi, Peg! I've been following the progress of the GVAX vaccine for a couple of years. They had a lot of positive information to disseminate at the recent ASCO conference. I've even called Cell Genesys a couple of times to see if they had any trials nearby that my sister would qualify for (the answer has always been, so far, been "no"). The ones listed on the website are too far away. I planned to call them again to see if they added any new trial sites in our area. Please let me know what you find out.

Fresca - one more note - we asked for & got Celebrex for my sister's "arthritis" - and since the clincial trials using it usually use 2x the usual dose, she takes it twice a day. After the first year the insurance company balked, but her oncologist wrote a letter saying she couldn't take aspirin with chemo. & then they okayed it. Plus, in addition to the blood thinning aspect - prolonged use of aspirin can also cause stomach upset - the last thing you want with chemo.

Jonathan - I was glad to see this post - my sister, with NSCLC - is supposed to start on the CPT11 + cisplatin on Tuesday (she's had ALL the other usual NSCLC drugs, including IRESSA). A note for others with NSCLC, because CPT11 is NOT yet approved for NSCLC, my sister's health insurance would not cover the cost - at about $10,000 per infusion, according to her oncologist. So, he used something called a "trade agreement" directly with the drug company & they are providing it to her for FREE! She only has to pay administrative/handling costs!

Hi, Kent! The information about Cox 2 inhibitors has been around awhile, the initial discovery was accidental & noted the effects of aspirin on folks who had a certain type of colon cancer & just happened to be taking aspirin for arthritis. There are many, many clinical trials going on right now using Celebrex in combination with chemo. We asked for a prescription for Celebrex for my sister's "arthritis", she's been taking it for over a year. It has virtually no side effects, has some beneficial additional anti-inflammatory/pain relief effect, not as hard on the stomach as aspirin, and, she figures, may help and can't hurt.

The American Society of Clinical Oncology (ASCO) - the professional organization most of your oncologists probably belong to - holds its annual conference this week in Chicago. You may notice daily articles in your local newspapers regarding new cancer treatments or test results. There is already some encouraging information on novel treatments - one on bevacizumab that my sister's oncologist told us we should watch for & he's confident he's going to be able to get it for her very soon. You can access the breaking news early by reading it on the ASCO's daily online newspaper: http://www.asco.org/ac/1,1003,_12-002462,00.asp

I've seen this article before, but it's a new "kinder, gentler" formulation of Taxol. http://www.sciencedaily.com/releases/20 ... 080425.htm

By the "big conference" do you mean the annual ASCO (American Society of Clinical Oncology)? Every year there are daily announcements of new cancer breakthroughs during the time of this conference. they usually post them on their website: http://www.asco.org My sister's oncologist also told us (yesterday) that they expect results of a trial for bevacizumab (sp?) on colon cancer to be presented next week & then it will be "fast-tracked" by the FDA & should be available for my sister to take "off label" (for other purposes). I believe it is a monoclonal antibody - so we're pretty excited about the possibility . . .

This drug is also called Genasense. "Genasense works by inhibiting the production of Bcl-2, a protein made by cancer cells that is thought to block chemotherapy-induced cell death. By reducing the amount of Bcl-2 in cancer cells, Genasense may enhance the effectiveness of current anticancer treatments. Genasense is currently in multiple late-stage randomized clinical trials including malignant melanoma, multiple myeloma, chronic lymphocytic leukemia (CLL), and non-small cell lung cancer."

My sister was also put on an "appetite enhancement" drug - she couldn't stop eating! She actually ate an entire pie one day! Seriously, the weight loss has to be addressed. Although I know it's a classic sign of cancer progression - the body can't fight if it's suffering from malnutrition.

I can't thank all of you enough for this information. It gives me something to work on. She was shot down for another Gamma Knife procedure for the new brain mets - they seemed to think the rest of her cancer is out of control so she's not worth it! (Even though her last scans showed she was stable.) My sister seems to be growing weaker by the minute, I don't know if it's the radiation, the cancer, or what, but it's scaring the crap out of me. I've been spending most of the last week taking her to doctors, tests, etc. She has her next CAT Scan next week. The doctors won't give her any more chemo until after the radiation is finished (next Monday), but this information on low dose chemo is really intriguing. Everyon should check out that site. Her doctor did mention something abut CPT 11 - maybe we'll be able to try that. There is no way she is ready to give up yet. Even if the doctors have. Thanks again, guys. Please, please, please, keep letting me know when you have new information. I just don't have time every day to do my web searches, anymore. Oh, and Jonathan - don't worry, I ask PLENTY of questions. All of my sister's doctors know that when they see ME trot in next to her that they just might as well relax, they're going to be spending the next hour or so with us! (Heck! She's past spending over $250,000 on treatment so far. They BETTER sit down and relax.)

Marlon - I have to say I'm not sure why you're so angry at "Jonathan" because I couldn't find anything in the previous posts that seemed inflamatory. Maybe he sent you a direct e-amil we didn't see? Anyway, for the record, I have to agree with Marlon. I also took my sister to some of the most highly acclaimed centers and was horrified at the way she was treated, including by our own dear Dave's Dr. Schiller at the U of Wisconsin. Yep, someone who has been through, and failed ("failed" is defined as "not cured" even though you'll be told up front that there IS no cure) is really treated as though they have leprosy. No one wants to screw up their data with tainted patients. I seems like the biggest cancer centers with all their technology, research, and $$$ are too big to take a professional, much less personal, interest in individual patients. It's very scary.

Thanks for your suggestion, Ada. I should have mentioned that Sally was in the Expanded Access Program (EAP) for Iressa last year. It didn't work for her. At all. Since she had Iressa she is also not eligible for the Tarceva trial.

My younger sister received bad news this week. She's been on chemo for the past six months. She recently started having balance problems - her cancer has spread to her brain, again. Supposedly, the new growths are too large for Gamma Knife but I'm taking her to consult with the Neurosurgeon who did her first Gamma Knife 1 1/2 years ago, anyway. The radiation oncologist tells us that she is near her lifetime limit for full brain radiation, she can do up to 12 focused treatments, that's all. Her cancer has spread to liver, bones, she has malignant pleural effusion, malignant ascites & is now continuing to progress even while on chemo. Her oncologist told us he's used all the approved chemo drugs for NSCLC, experimental drugs are probably all that are available now, but, no one is going to take someone with active brain cancer into a clinical trial (quote). Plus, does she "want to spend time traveling back & forth (to Chicago or Madison or Mayo) for treatment when she doesn't have much time left?" Both the oncologist and radiologist are giving her "weeks" to live. (Note: up until the hour of this appointment she was still driving, teaching every day, taking care of her home & kids.) Here are my questions: for chemo she's had taxol, carboplatin, taxotere, gemzar, and navelbine. Zometa for the bone mets. Her oncologist says cisplatin is the same as carboplatin, which she's had twice & it is no longer working. He says there are "older" drugs but they don't work well & have terrible side effects. Anyone have experience with other chemo drugs for NSCLC? Secondly: any warning signs or symptoms I should be looking for that indicate the brain mets are getting worse or that her liver might be failing? (Other than pain which, thank God, she doesn't have.) Just to be fair - we've been pretty satisfied with her medical treatment - both her oncologist & radioloist have spent hours & hours with us, always listen, always address concerns, always try to treat symptoms & side effects, always available when she needs them . . . but, she's not getting better. We may just both be in denial. I've spend hours every day of the past two years searching the internet for something, anything. I just don't know what I would do with all this horror if I didn't have this board to go to. I wish I could have talked her into joining it, I just know that she's terrified, and no matter how many of us are around her, she feels alone. Cancer sucks. If you have those hats made, Dave, I'll buy a gross.

Shamrock - My sister resisted any talk of a port for 1 1/2 years because she found the whole idea barbaric & offensive. After 1 1/2 years of nearly continuous chemo her veins gave out & she really had no other choice. Now she says she wishes she would have done it in the first place. It doesn't bother her at all - they use it to take blood, give chemo, etc. I echo Ada's advice - ask for a prescription for Emla - used 45 to 60 minutes before the port will be opened, then she doesn't even feel that stick.

Mary - FYI - my sister had the Gamma Knife surgery 1 1/2 years ago - no side effects, no recovery time (went to work the next day), and, so far, no more brain mets. I don't know what IMRT is, can't help with that. I'm hoping that your sister also has a good response to the gamma knife & go on to meet whatever challenges lay ahead, one by one. By the way, we are two of seven kids. Right now, it still doesn't seem like enough.

My younger sister got bad news on her most recent PET/CT scan - metastatic pleural effusion (which she's had before, treated easily) plus metastatic fluid "in her belly." The doctor said the fluid "in her belly" was because her liver "isn't functioning properly" - she has extensive liver mets. Has anyone had successful treatment of this condition & does anyone know why liver dysfunction would cause this? Is there anything which can improve liver function? I'm meeting with her oncologist tomorrow & I always like to have suggestions ready. A couple of months ago she had severe (I mean, she could not walk for several weeks) pain in her calves. I remember seeing a post here about liver dysfunction causing leg pain. Anyone remember that one? I can't find it. Why would that be & what is the treatment? Thanks for any help.