natalie

Hi Carlton- My mom is on Gemzar now too. She's only had one treatment so far and the first day her whole body was tingling. The next day she was fine and she's tolerated it okay so far. Unfortunatley, it made her white blood count cells low so she couldn't do her latest chemo treatment...but they gave us something to give to her and it should get her counts back up for this weeks chemo. Does that help at all?

Wow, that took my breath away. Your Margaret was lucky to live a life with such a wonderful man who loved her so. You should be proud of the relationship you HAVE with one another. She's still with you, she's still your wife and will always be your wife...that will never change. You remember that. Her early life with you as well as her life with cancer have changed you and made you a different person now which makes part of you a part of her. She has made you who you are today...you use that and remember that she is with you in everything you do because she is part of your personality....1/2 of you is always Margaret and will always be Margaret. You have not lost her, you have taken some of her and kept it with you on earth until such time you can be with her again. She may not be here physically, but she will always be your soulmate. I hope you can find some comfort in my words...we are here for you.

Joanie- I don't even know what to say. I'm so terribly sorry for your loss and I can't even begin to imagine your grief and shock. Your daughter is happier than we are here on earth. I believe we suffer from the unknown and once people are up there in heaven, they are smiling and thinking, geesh, this place is so much better...what the heck was I thinking tying myself to life on earth? Joanie, I wish you comfort and peace. I'm just so sorry.

Terre- I'm so sorry for your loss. I'm glad to hear that it was a peaceful passing. I hope you are able to find some comfort this week with family.

Heather- I had the doctors trying to convince us too....they are very big about being "realistic" but to me, I agree, what's wrong with hope? They don't know for sure what could happen...they don't have a crystal ball...they aren't God. My mom said that the doctor's visits were extra horrifying for her because every doctor was set on telling us the reality of this disease like we are idiots or something or that we aren't handling the situation the way they think we should, but they were set on taking every ounce of hope away from my Mom. I swear we have had it mentioned to us at least 10 times. She would end up depressed after the visits. Thankfully we finally got set up with a doctor and we don't really have to go through with the introduction with each new doctor. That, I think, was the worst part. The first visit with this particular oncologist (we had gone through a few) I just flat out told her before she could even speak "We know what we are dealing with, we've chosen not to know statistics and want to remain hopeful and optomistic, so please spare us the technicalities and statistics of this disease. We want someone that is going to get to know my mom on a personal level and not treat her as a number. Can you do that for us, because if not, I'll have to keep searching for someone that can." She just looked at me and said "okay, thanks for letting me know" and she's been the best doctor with my mom so far. The doctors want statistics? Well here I'll give them statistics...scientifically it's been proven that postive mental health is extremely important in fighting this disease...so basically in the best interest of my mothers health, they should be respecting the way she wants to deal with this mentally. Some people need realism and others need to be in denial or have hope, faith, whatever. Everyone deals with it differently and for a doctor to tell you how you should deal with it really makes me mad. They are not psychologist, they have never been through what our parents have been through, so how dare they tell us how they should be dealing with it? I've been in pissed off mode lately, so please excuse my ranting but this has been one sour note with me too and I have to get it out. One week I'm humbled and quiet, the next week I'm sad and depressed, then one day I'm just fuming mad, the next a basketcase... I wonder if I'm ever going to return to normal. Heather, here's to hope and believing that our parents can beat this...because they can. Thanks for posting on the board.

Do you have Cost Plus World Market in your area? I've seen the loose green tea leaves there. There is also a great selection of different types of green tea bags there.

I had been feeling a bit down lately and you just got me back into fighting mode for my Mom! That is inspirational to read about you and Allen. Are you and Allen taking any alternative treatments such as vitamins, etc?

I know how anxious you must be feeling. When my mom had brain surgery I felt like I was going to vomit. My insides were in knots, I couldn't sleep, I was so worried about what my mom was thinking and thoughts that were going through her head. My words of advice would be to remember to take it one day at a time. Also, talk to your own doctor and see if they recommend some anti-anxiety pills to relieve you from some of the stress and anxiety you are having. Be with your mom before the surgery and do everthing you can to take her mind off of it. I read my mom the latest gossip in People and tried to think of funny things...I kept upbeat...it was so hard ...drinking 1 beer the night before helped keep me relaxed. Keep her busy. ..have some other family members around if you can. I also did some research on the doctor performing her surgery and found out she was from Yale and had done 100 surgeries in 1 year. Once I told my mom about how qualified her surgeon was, it helped a little. Keep your chin up, your mom will get through the surgery...the fact that they are willing to do the surgery is spectacular! As for the news after the surgery...prepare for the worst, but EXPECT the best. We are here for you.

Hi and welcome! You have certainly been through a lot and I'm sorry to hear about your most recent setback. Have you considered RFA to the lungs? It would be less invasive and they can do it over and over again.

Sue, I'm sorry to hear about your recent setback, but with your strong will and positive attitude, you've given yourself the resources to beat this thing. I agree with Katie in getting info on RFA. The doctor just recently discovered a small liver spot on my mom so I will be conducting some research. I will let you know if I find anything.

Hi Heather- I understand what you are going through too. It is very trying on a person's mental well being. You feel like you can't ever escape thinking or talking about the cancer. To watch a parent vulnerable to this disease is so heart wrenching. The best thing I did when I felt I was about to just "lose" it,was take a 2 hour moment to be just by myself reading Better Homes and Garden. I was spending every moment researching, reading every book there is on cancer, that I realized I needed a few moments just reading something enjoyable. I felt selfish doing it, but it ended up being the best thing because I felt "refreshed" afterwards. Now I make sure each day that I take an hour for myself just watching a program I like on TV or reading the paper. Heather, we are here for you. Feel free to email me anytime.

Hi, Here's another one to add to your list: http://www.suttercancer.org/rfa/

Peg, I'm so sorry to hear about your devastating news. Lance Armstrong had it everywhere too. I believe in miracles. I will pray for you, Bill and the rest of your family.

Hi and welcome to the board! I understand how you feel about putting your strong "game face" on and crashing when you get home. That I think is one of the hardest parts of this whole thing. Everyone at my work knows. I hesitated telling at first. My husband called my manager to tell him and we asked him to not tell anyone but later I figured I'd have to tell a few people so they understand why my work has been slipping and why I am taking sick time and vacation time to be there for my mom's doctors visits. Even if I told a few people eventually everyone would find out later. When I came back to work after a week out, my grief was written all over my face, so it was hard to hide. Because I had to put my "game face" on and my parents were living with me for a while, I'd crash at work...cry every day. Luckily through telling people at work, I've managed to have a great support system when I feel bad at work (which is almost daily). They have taken the time to keep me upbeat, positive and listen. The only thing is when people know, they ask you about it constantly...how you are doing, how your family member is doing...because they care, but sometimes I want to escape it and not talk about it...that's the down fall of telling people. There are so many people out there that care...including us here on this board. You are not alone in this. We will help you with your research and be a great support to you.

My mom was approved for this procedure! Now I have to fight the insurance company. I've only heard positive things about this! The article says that it doesn't consider cases over 3 cm, but my mom's tumor is 5cm x 3cm, so ignore that part! More info about this is in my other posting "RFA to the lungs" Sacramento Bee/Manny Crisostomo Some cancer patients now have a less painful alternative to surgery By Alison C. Burggren -- Bee Staff Writer Published 2:15 a.m. PDT Tuesday, July 29, 2003 A new but unproven medical procedure using radio waves to kill tumors is giving a small group of patients at Sutter Cancer Center in Sacramento an alternative to surgery. Radiofrequency ablation is only appropriate for a limited number of patients and can have unwanted side effects. But for some lung, liver, bone and kidney cancer patients with no other options, the novel approach is a welcome one. For Judy Callahan of Fair Oaks, it was an easy decision to try the procedure. A cancer patient since 1986, her six surgeries were so excruciating that the pain lasted for months afterward. So last year when doctors found tumors in both her lungs, they suggested the less painful alternative. Callahan, 56, underwent the radiofrequency ablation, or RFA, to kill her lung tumors. "I woke up from anesthesia and felt wonderful," she said. She walked out of the hospital that same day. The following day she had her nails done and attended a book club meeting -- pain-free. But RFA is not for everyone. Surgeon Gregory Graves and interventional radiologist Scott Foster said only 30 percent of patients considered for the procedure at Sutter Cancer Center actually get it. RFA is generally reserved for cases in which surgery is not an option. Foster said the center has a multidisciplinary lung tumor board made up of five specialists who must all agree that RFA is the appropriate treatment in a particular case. But they hope that one day patients will get to choose RFA as an alternative to standard surgery. RFA uses a needle inserted through the skin into the tumor to deliver electrical current, guided by computer tomography or magnetic resonance imaging to the correct place. Doctors performing RFA insert the needle, push down on the end of it, and open a tiny umbrella of thin wires inside the tumor, allowing the current to be evenly dispersed. The current chars the diseased tissue, leaving the body to naturally absorb the dead cells and get rid of them as waste. Some patients have bled internally and others have developed fevers after RFA. One patient at Sutter Cancer Center died from a blot clot that formed in a lung. Tumors larger than 3 centimeters in diameter generally are not considered good candidates for RFA because of the risk in not removing all the tumor tissue. Graves said RFA is 95 percent effective at controlling tumors less than 3 centimeters but only 50 percent effective on tumors greater than 5 centimeters. However, because RFA is a local treatment that is relatively well-tolerated compared to patient recovery from surgery, it can be repeated as often as needed to keep patients comfortable. Graves said patients have traveled long distances to Sacramento for this procedure. Patients have come from as far away as London. RFA is available at about a dozen sites across the country, Sutter spokeswoman Robin Montgomery said. No large, randomized clinical trial has been done to look at long-term survival rates for RFA patients. Dr. Herman Kattlove, medical oncologist and editor for the American Cancer Society, said RFA can only be offered to patients as temporary relief from their tumor. Clinical trials, Kattlove said, must show positive outcomes, an increase in survival rates and an increase in the quality of life for RFA to be classified as a treatment that can get rid of cancer. "I'm a skeptic," said Kattlove. Graves and Foster hope that a clinical trial expected to start soon at the Sutter Cancer Center will provide longevity statistics. These patients, Graves said, will be followed indefinitely to determine how effective RFA is at killing tumors. The trial will be funded by Boston Scientific Corp., the manufacturer of tools used in the procedure. The study will look at patients with tumors at one site and patients with tumors that have spread to other areas, or metastatic tumors. Graves and Foster said that 45 percent of their RFA cases are for lung cancer, 45 percent of them are for liver cancer, and the remaining 10 percent are for bone and kidney cancer. More than 85 percent of liver cancer patients have complications that make traditional surgery impossible. Without treatment, most patients die within two years and only 2 percent make it five years. Graves said the longest living recipient of the RFA procedure is 2 1/2 years out from treatment and doing well. In Callahan's case, the two tumors treated last year have not reappeared, although doctors told her they found a new, tiny tumor they may treat with RFA at some point. Graves expects it will take a decade of research to decide how well it works and to determine the procedure's success rate in allowing patients to live cancer-free. "We think it's curative. It's just a matter of getting the numbers over time," Graves said of the results expected from the upcoming clinical trial. Callahan doesn't need the numbers. "Absolutely, without a doubt, I would recommend (RFA) to someone else. It's taken a huge weight off my shoulders," she said. -------------------------------------------------------------------------------- About the Writer --------------------------- The Bee's Alison Burggren can be reached at (916) 321-1008 or aburggren@sacbee.com

Hey Kay- My mom got accepted into the Radiofrequency Ablation(RFA) trial today for the lungs! She has a shaded area that is 5 x 3 cm in the upper left lobe and they said she is a perfect candidate. It's a trial, but not like the typical trial. It's a proven trial...it will explain in the article I'm going to post from the Sacramento Bee. I also have a posting with a website from Sutter Cancer Center about it under the category "New Treatments" and it's being conducted in various areas around the states. The head of the trial told me that it is non invasive and developed for people that are not candidates for surgery. It will take a while to get my mom started in the trial (have to fight with the insurance company) so I asked the head of the trial if my mom should continue with her chemo plans in the meantime. She said, "absolutely", but then I responded "but won't it make her too weak for the RFA? Don't you have to wait until the patient is strong enough to continue with the procedure?" She said, "no, it's made for people that can't do regular surgery because they are too weak, or advanced stage, etc. The procedure is an hour and a half and then recovery is about a day. They claim that people can conduct normally very soon after. A lady even went and got her nails and hair done the next day and went golfing three days later.

Hi Everyone- I'm trying to get my mom in a clinical trial here locally and praying that she is a candidate (I find out later today). Sutter Cancer Center is conducting Radiofrequency Ablation to the lungs. There was a huge article in the Sacramento Bee a few weeks ago concerning their trial and it sounds great. I thought I would share it with you all since it really seems like the up and coming thing. My mom is not a candidate for surgery, so this would be a great alternative. I was told that if the primary tumor can be irradicated, then it will not continue to spread. I went to Sutter Cancer Center to turn in my mothers xrays today and they were so nice and pleasant. It was refreshing. I'm sure this trial is probably being conducted elsewhere across the States. Radiofrequency Ablation (RFA) Radiofrequency ablation (RFA) is a localized thermal treatment option that is being utilized at Sutter Medical Center, Sacramento for the treatment of primary and metastatic tumors in the liver, lung, kidney, or other sites. Gregory Graves M.D., a thoracic and oncologic surgeon, and Scott Foster M.D., an Interventional Radiologist, are the RFA team specialists who introduced this exciting new technology for lung cancer to Sacramento in 2001. More than 75 patients have been treated thus far and preliminary results were presented in February 2002 at the "13th International Congress on Anti-Cancer Treatment" in Paris, France. They presented an update at the same meeting a year later - their results continue to place them among the world leaders in lung RFA. RFA is usually reserved for patients who cannot tolerate, or are not candidates for, standard therapy for primary or metastatic tumors. This is a cutting-edge, minimally invasive technique in which cancer is treated by application of intense heat through a small probe directly into the tumor(s). Physician Profiles Gregory M. Graves, M.D. Scott Foster, M.D. Questions on Radiofrequency Ablation (FAQ) What is Radiofrequency Ablation? Radiofrequency ablation (RFA) is the heating of tissue by passing of alternating electrical current through a tumor. This heat produces cellular destruction, resulting in death of the tumor. What are the indications for Radiofrequency Ablation? If surgery is not a good option for treatment of your tumor, RFA may be a good option if: There are 4 or fewer tumors to treat The tumor is not widely metastatic (spread throughout the body) Each tumor is 4.5 cm in diameter or less The tumor is not to close to a critical organ (such as the heart) The tumor can be reached with available equipment Is this an experimental procedure? No, coagulation of soft tissue, using heat is a proven method that has been used for many years. The procedure does use a new technically advanced instrument that allows heat to be evenly distributed to the lesion in a consistent manner, causing targeted cell destruction. RFA is FDA-approved for treatment of soft tissue tumors. How does it work? Using traditional imaging (x-ray or ultrasound) methods an electrode is positioned within the tumor. Then, the electrode is connected to a radiofrequency generator and electrical current is delivered into the tumor. Where is the procedure done? Dr. Graves and Dr. Foster perform the procedure at Sutter General Hospital in Sacramento. Depending on a number of factors the procedure will be performed in the Operating Room or in the Radiology Department. How long do I have to stay in the hospital? The typical stay is overnight. However, depending on a number of factors, stays vary from a few hours to a few days. What follow-up is there? A member of our clinical team will contact you shortly after you are discharged from the hospital to confirm that your recovery is going as expected. Your physician will follow you through office visits, and imaging studies. Your first visit to your physician's office will usually be within a week of discharge. Your first imaging (x-ray) follow-up begins four to six weeks after your procedure, when you will get a CT scan, which will be compared to your pretreatment studies and will serve as a baseline for later follow-up. What are the benefits? The most obvious benefit is that major surgery can be avoided. Even with the best and most experienced surgeons, there are substantial risks to any major surgery. With RFA, the risks are much lower and the recovery time is much faster. Additionally, follow-up imaging and treatment may be easier after RFA. What are the risks? As with every procedure, there are risks. The risk of major complication due to RFA is 1-2%, with bleeding being the most common. Our center, however, has never had a major bleeding complication. There is also the risk of incomplete destruction of the tumor. The risk of this varies with the tumor, its size, and its location in the body. This will be discussed with you at the time of initial consultation. Who does the procedure? The Surgeon (Dr. Graves) and the Interventional Radiologist (Dr. Foster) will do the procedure, with the "physician in charge" depending both on the procedure, and the part of the procedure currently being performed. What are the alternatives? There are several alternatives: Major surgery Chemotherapy Radiation Therapy Other advanced minimally invasive procedures A combination of any of those listed above with or without RFA Do nothing Since each patient is unique, a general guideline cannot be given. Your particular tumor will be discussed and reviewed with a panel of experts before our recommendation will be discussed with you. How it Works The equipment used is Boston Scientific RFA probes and GE CT scanners. Radiofrequency ablation uses a needle electrode and a radiofrequency generator that causes cell death of the abnormal lung or other organ tissue through thermal injury. The needle electrode is placed into the tumor, and the RF generator drives energy through each of the tines that extend from the electrode into the lung tissue. The device leads to tumor cell destruction by heating the tissue, thereby killing the tumor. The needle electrode is placed through the skin, under CT guidance, while the patient is under general anesthesia. The treatment site is carefully monitored using repeat CT and PET scans. Contact Us For more information contact the Clinic at (916) 454-6913, or via email at foranm@sutterhealth.org. Click here for a map to Sutter Cancer Center, Sacramento.

YAY!!!! It's about time the two of you got some good news! I'm am VERY VERY happy for you!

Hey Connie! I'm glad to hear that everything is going well. I praying for the best for you! You are unbeatable!!!! You show this cancer what you are made of! I pray you have a quick recovery!

My mom's HMO does not currently have LC trials going on right now, so I'm possibly having my mom enter into a clinical trial at another medical group. I was repeatedly told by my mom's HMO that they wouldn't pay for clinical trials outside of their group. I did some research on Cancer.gov and discovered that a bill was passed in California stating that they are in fact required to pay clinical trials. I made a copy of the bill (Senate Bill 37) and my uncle talked to the Senator that drafted the approved Bill and he reiterated that my mom's HMO has to pay for the clinical trial since they are unable to offer any clinical trials within their group. Well I wrote a letter to the doctor and sent a copy of the letter to the California Department of Managed Health Care. Now the doctor says she is going to write a letter of referral for the trial and going to have it submitted. Maybe Cancer.gov will have some information on legalities in Maine.

I would stay away from Beta Carotene. Everything I read says it's good for cancer, but NOT lung cancer. My mom is taking Ensure instead of Boost...I'll have to look to see if Ensure has Beta Carotene...I didn't even think to look at what it had in there. I have my mom taking the following: Vit B6 Calcium Citrate Green Barley 1 Multi-vitamin a day Selium Vit E Vit C Iron and Noni Juice I asked the doctor about vitamins and they balk at it...so now I just don't tell them. My goal is to aid in keeping my mom's immune system in tact as much as I can and to keep her hopeful. I keep telling her the Noni juice is going to be her miracle drug.

Cathy- I'm so sorry about your loss. You are a great daughter and be proud of everything you have done to support both of your parents. I pray that you will find comfort knowing that your Dad is hanging out with angels saying "Hey, this place is great! If only Cathy and my wife knew how great it is, they wouldn't worry so much about me being gone!" Cathy, I feel so much pain for you...please know we are here for you.

Could she be having an side effect from the medication? Are the doctors giving her anything for her pain? Vicodin or Percocet? My moms ache's came from the chemo...so I'm not sure what would be causing this for your mom. I would question the doctors

Are you signed up with Kaiser as a person they can discuss things with? I now talk to my mom's doctors all the time without my mom being there. My mom has signed me and my dad up as advocates through some paper work they have there and now they discuss everything with us. If I were you, I'd get copies of all her xrays and take them to the doctor yourself...your mom shouldn't even need to be present. I'm in the process of getting more of my mom's xrays and they said all I need is a letter from my mom saying that I can pick up the xrays for her. Now getting them to get the xrays ready is another story. I've called them three times and haven't heard back from them yet! You've got to push things with them. I pushed so much in the beginning and it was very hard, but once they got to know me and realize that I'm a resilient person, they didn't fight on things so much anymore. I wrote that letter to the doctor with copy going to the Dept. of Managed Health Care and now my mom is getting the royal treatment. We have special meetings with the doctor now where she is there to just answer questions. The doctor is even offering now to write a letter recommending the clinical trial if my mom is a candidate! Good luck, Mike. If you need any help dealing with Kaiser, let me know.

Peg...thinking of you and your family and praying for you and Bill.