Chanwit

Isn't that Interesting. I bet down the road there will be a follow up article about Chinese herbalist that have known this for a long time and are already using Lichen (fungus and algae) in naturalpathic cancer treatments in China. Lichen, made of algae and fungus covers lava rocks like slippery fabric. Lichen is what reduces rock to soil and sand. Knowing this I researched and found a supplement which contains mushroom and funcus extracts and Lisa takes it twice daily. She does report that sometimes her bowel movements are a bit green. One research says that certain mushrooms, algae, and fungus are anticancer because they cause the immune system to recognize them as foreign bodies and goes into killer mode and in the process hiding cancer cells are killed as well. I'm sure there is a more scientific explanation as well. Speaking of bowel movements, I've been preparing all day to have a colonoscopy on Thurs. I think the day before is worst than the day of considering the laxatives and purging going on. It's a routine screen and I'm all for early detection when it comes to cancer. Found that out the hard way. Chuck (Chanwit)

Lisa only had pain in and around the incision point. Lisa's incision was close to bottom of the lung cavity so 8" below that would be in an area not in the lung cavity. Of course Lisa is only 4' 7" tall and only weighs 85lb so 8" would be a big difference on her body. I think you should alert her pumonary nurse/doctor and her oncologist about this new development.

That's a lot of Tarceva. I thought 150mg was the max. You mentioned Tarceva fingers. Lisa had Tarceva toes on both feet and one other toe which I thought was ingrown toe nails. Soaking in Epson salt and using OTC neosporum (sp?) is managing the problem. I'll ask the oncologist today if it was caused by the Tarceva. With that large dose are you taking it all at once or during the day. I had Lisa cut the 150mg in half and she takes it morning and evening. Don't punish your face and body. Try to control it with some antibiotic creams and moisturizers. Anyway I hope that dose is working. You've got to do what you've got to do. That's my motto. Chanwit

It's interesting that it seems like there is no consistency between doctors to do the Pleurodesis or not. Lisa's oncologist seemed to take the hospice route when confronted with Lisa's Pleural Effusion. Rapid build up of effusion can mean a rapid growing metastatic cancer so it needs to be dealth with quickly. It also probably means that the fluid is collapsing the lung and breathing will become more difficult. We had to ambush the pumonologist in the hall ways of the hospital with Lisa's CT scans to get him to admit her and do the procedure. In her case there was no choice. She would not have made it to chemotherapy without the procedure. It was painful for her but it was worth it and she is getting better every day. It's tough trying to be both doctor and caretaker. The pulmonary doctor used a chemical called Silver Nitrate instead of Talc. You might ask her doctor about the difference between the two. Our pulm. doc. said there is better results and less chance of problems with the chemical. Since you first posted in Sept. you may already have taken care of this decision. Let us know. Chanwit (aka Chuck)

Another board member Trish suggested: Cetaphyl facial moisturizer and that works and Lisa added Cetaphyl Body moisturizer which works for her. All OTC. Chanwit

Randy, That was a great link to the Holistic Medicine Oct 2001 seminar. It confirms my beliefs on cancer treatments that I have built on these past 8 months with Lisa's theripies. I picked a small excerpt that I strongly believe in: Dr. Fair M.D. said in Oct. 2001 "I think that we need a mindset that cancer is a chronic disease; it should be treated as a chronic disease. And it may well be, at some point in the future as we look at cancer as a chronic disease, that we're willing to accept the level of treatment that would keep cancer at a certain level, even though it doesn't cure the patient. So that's one of the first things I've learned. The second thing is if you accept cancer as a chronic disease, you have to accept that, like any chronic disease, you need to consider chronic treatment. And I think this is one of the most misunderstood areas. And the idea that, oh, it's great to do stress reduction and nutrition and exercise and so forth and so on when you have cancer, but after it's over, you can forget that business -- that's about as rational as saying, well, we're treat diabetes and we'll get the blood sugar normal, and then we'll stop getting the treatment, because we're back to normal." I think you can only get these advanced integrative treatments from places like the Cancer Treatment Centers of America. Lisa was on O2 early on and couldn't make the 4 hour trip. At least to my experience with our oncologist they haven't learn much in the past 5 years. I developed my own complementary therapy for Lisa and the oncologist said he didn't know (too busy doing chemo) about such things but go ahead and do it. Thanks again Randy. Chuck

As Caregiver I tend to mope around alot but at the end of the day I felt a bit better when Lisa said she had a good day. She doesn't say it unless it's true. Being off chemo has helped a lot and all blood counts have returned to normal. This weeks xray results were that the lung is stable; not better, not worst. The Tarceva is doing that. Externally she has gained weight, no moon face, coughing less, using O2 less and even the oncologist was impressed, and she cooked up a delicious salmon on Sun. I'll take that as good news. - Chuck

My wife's experience was that she was developing Pleural Effusion very rapidly and had required 3 prior Thorocentises (draining) prior to the Pleurodesis. That is, cancerous fluid was accumulating in the space arround the right lung between the lung and rib cage. (pleural cavity). The fluid was calapsing the right lung and causing SOB. The pulmonary MD would only perform the procedure after repeated draining because multiple Thorocentises is risky and can result in a colapsed lung and infection. The pulmonologist MD that performed did not use Talc. I read his notes and they read that Chemical Pleurodesis was less risky and he used Silver Nitrate. I've heard that Talc is the traditional treatment. I think Chemicals are used in cases for a more permanent bonding. The lung is considered Super Glued to the rib cage. She was in the hospital for 8 days. The time depends on how long it takes to drain the fluid and how long it takes for the lung to completely expand and fill the lung cavity. She also had a mild case of pneumonia which extended the time by 3 days. The fluid accumulates as a result of the cancer inflamation, radiation, and chemo can cause additional inflamation. Maybe that's why the oncologist wants to do the procedure to keep from interrupting the Chemo schedule. Any way the procedure essentially bought her the time to be able to be treated with the Chemo and now Tarceva. She was on oxygen prior to the procedure and was off O2 after the procedure and now only uses it at night. Strangely in her case I had to force the issue of the procedure to be performed by the Pulmonary MD. I was about to change Oncologist at that point because he didn't seem to be in touch with her case or he didn't think it was worth the time. Wierd! Long story short. the Pleurodesis worked and the Tarceva is working. Chuck

I think I'll stay away from the Multiple Wave Oscillator. The MWO looked like an early invention and a bit <<>>. Evenstar's web site is http://evenstartechnologies.com and it looks a lot more high tech. The technology is still based on the work of Dr. Lakhovsky and Dr. Rife. The explanation of how it works is very intriguing. Chuck

I have had many friends offer advice on many different Alternative Therapies and I have researched many on my own. A well meaning friend at church tried to tell me about a whole new direction of Alternative Therapy that he was using for his general health but also had cancer killing properties. It's not an herb,juice,pill,or etc. Has anyone here had any experience with 'bioresonant frequency technology' as applied to Alternative Therapies? The specific electronic device I have in mind is the Evenstar Photonic Multiwave Oscillator System; whew, that's a name. I think these devices got their start back in 1934 with Dr. Royal Rife.A detailed account or Rife's inventions and discoveries is the subject of a book called The Cancer Cure That Worked, 50 Years of Suppression. So there are now at least several machines, Rife machine, V.I.B.E. machine, and now the Evenstar PMOS. Has anyone used or heard of someone using the Evenstar PMOS? Thanks Chuck

Amanda, All good answers above. My experience with Lisa's Onc doctor (and I've learned to read his mind)would lead me to believe that your dad's doc. would have to proceed with lower doses of the same treatment which would result in lesser improvements. They keep track of chemo doses and know when the body approaches toxic levels. You said that he is feeling better and enjoying life more and more of the same toxins might reverse that. You lucky that your doctor is willing to search for clinical trials. Lisa's doctor would not do that. 2 weeks would be in his favor if he is going to do a clinical trial because most require 28 days since last treatments. You can do your own searches for clinical trials since you know more about his dx and treatments. One search is http://clinicaltrials.gov or just go to http://www.ucdmc.ucdavis.edu/cancer/Clinical_Trials/ to inquire what is at UC Davis. Lisa's doctor did give her a choice to proceed with the same Gemzar/Carbo at a lower dose or another treatment which was Tarceva. If trials can't be found I guess lower dose of the best chemo. is possible. Are ther other cancer clinics in your area? They are always willing to launch a 2nd opinion. Take good care of yourselves - happily - Chuck

The first good news is that Lisa gets another chance to heal with an change in treatment from Gemzar/Carbo to Tarceva. She's already feeling much better after 7 days on treatment. Driven by a sence of urgency triggered the fact that her insurance RX annual maxed out with the first 2 weeks of pills, I started making calls to Tarceva Genentech. More good news. Genentech called today to say that she qualified to receive all her Tarceva 150 RX compliments of Genentech once a month via FedEx. Needless to say I'm left breathless to be able to help her and still be able to pay the bills, have food on the table, and have something left over when she survives this ordeal. Pray that it works for her. Take care of all our friends here - happily - Chuck

I believe Lisa is experienceing this at the moment. Symptoms of acute radiation pneumonitis develop 1-6 months after completion of therapy. Symptoms can include dyspnea (SOB), cronic dry cough with sometimes a pinkish-tinged sputum, and low grade fever. This is caused by injury to capillary endothelial and epithelial cells; that's where the inflamation and bleeding come from. She has all of these at the moment except the low grade fever. She is currently tapering down from the steroids this week at Prenisone 5mg/day. I put her in the hospital last week because of the bleeding and all they did was give her large doses if IV steroids and antibiotics and that stopped the bleeding but it started again as soon as she got home. It's not continuous, just short bursts a couple of times a day. The Onc. has seen it before and is not concered. The Oncs don't seem to have anything else to offer. I have read that this is a dynamic process which leads to pulmonary fibrosis when symptoms should decrease but some permanent damage is caused to the lung tissue. In alternative circles it has been reported that certain antioxidants can reversed the damage if given during and after the trauma and that is what Lisa takes is continuous doses of isotonic and liquid antioxidant suppliments. What symptoms do you have? Take care of yourself - happily - Chuck

This is a question to anyone who has had a success with Tarceva. The Onc just switched Lisa from Gemzar and Carbo to Tarceva 150 once per day. The chemo had its success but was just too hard on the HGB, RBC, and Platelets. She had completed 5 cycles. What were the noticible side affects of Tarceva and how long into the treatment did you notice them. Were there any noticible physical feelings of improvement as the days went by and how long did it take to feel a change. The Onc said there won't be any CT scans for a couple of months to check the real affects. He will monitor every 2 weeks in the clinic. Like to hear from you. Thanks, Chuck

Of course, in the beginning we didn't know what port the doctors and nurses were talking about. They were not pushy but kept dropping the idea. Down the road, having a port is the only way to go. Without one the veins get very weak and close up causing a lot of pain and bruising. Once installed, life gets a lot easier not harder. It can be used for drawing blood for tests, Chemo, Blood Transfusions, IVs while in hospital, and on and on, Emergency IVs for chemo reactions, you don't want to depend on bad veins for that. My wife loves it. Take care of yourself - peacefully - Chuck

Home! And this is my room -- and you're all here! And I'm not going to leave here ever, ever again, because I love you all! And -- Oh, [Kathleen,] there's no place like home! Take care of yourselves - peacefully - Chuck

In the Sept.issue of Life Extension magazine reads" Omega-3 Fatty Acids Show Promise in Fighting Deadly Cancers" They do this by sensitizing cancer cells to the effects of standard chemotherapy drugs. "Cancer cells with a higher concentration of DHA in their membranes were more susceptible to cell death from the chemo drug doxorubicin. Similar results were found when DHA was added to the taxane family such as Taxol and Taxotere. More dramatic cell deaths occurred if DHA was given before the chemo treatment." Lisa takes 1 soft gell with each meal with 600mg DHA and 900mg EPA and fish body oils of 3000mg. The source needs to be from young salmon not farm grown to get the maximum, purity and minimum mercury. I also liked this supplement because the research says that Omega-3 keeps the cancer cells from sticking together. Any way it's a piece of the puzzle. Take care of yourselves - peacefully - Chuck

Great article Randy, When I put together lisa's supplement program I included mushrooms. You need to include mushroom everyday and several times a day to get proper absorbtion but it's impractical to prepare many kinds of medicimal mushrooms that often. I found a supplement that contained 14 different medicimal mushrooms and fungi and it includes the Phellinus Linteus as well as Cordyceps,Maitake,Reishi, etc,etc. Not only do the Chinese use mushrooms in cancer treatment as standard practice I found another article that proposed that the way they work is that the immune system sees the fungus as a foreigh body and tries to attack the invader and the immune system kills cancer cells that get in the way. I guess the fungii molecules stick to the cancer cells and act as markers. You need to take mushroom supplements 1 at a time through out the day so that the chemical breakdown will correspond to different times of cancer division. Any way it's a piece of the puzzle. Take care - happily - Chuck

Blood test for lung cancer may be close ROCKVILLE, MD - July 17, 2006 - A blood test may be able to detect lung cancer much earlier than the most accurate imaging systems now used, say researchers. http://www.nexcura.com/Newsletter/eNews ... ewsId=2034

The doctors should know best but it could be a blood clot in the lungs. Does he also have shortness of breath or any of these other symtoms. Symptoms of pulmonary embolus People with pulmonary embolus may have: a cough that begins suddenly, and may produce bloody sputum (mucus): significant amounts of visible blood or lightly blood streaked sputum sudden onset of shortness of breath at rest or with exertion splinting of ribs with breathing (e.g., bending over or holding the chest) lightheadedness fainting dizziness sweating anxiety rapid breathing rapid heart rate chest pain: under the breastbone or on one side sharp, stabbing, burning, aching or dull, heavy sensation may be worse at night may radiate to the shoulder, arm, neck, jaw, or other area may be worsened by breathing deeply, coughing, eating, bending, or stooping If you have these symptoms, or if you think you have pulmonary embolus, see your doctor right away. Your symptoms could be caused by pulmonary embolus, or they could be caused by another disease; only a doctor can tell. Let us know what the Spanish doctors think Chuck

Hi Betty, You and my wife Lisa are on the same treatment it seems. Feel free to PM me anytime. She also gets an Aranesp shot at the end of each chemo session. Since the Aranesp wasn't working by itself the Onc added a bag of Sodium Ferric Gluconate (an iron product). It seems that if you are low on iron the Aranesp won't be absorb. Low Mean Cell Volume (MCV) below 81 could mean low iron. 1 in 4 patients receiving Gemzar complain of SOB. Lisa has a cronic cough which induces SOB sometimes and sometimes she experiences SOB while laying down or sleeping. She sleeps with a low setting of 1 at night with an O2 Concentrator. Sometimes she gets SOB in the infusion room. It seems to come and go. I always keep the small O2 tank nearby just to get her over the anxiety of the SOB. It seems to work. Her bad days seem to also be the 3 days after infusion. Drink plenty of water to counter the toxic effects. She also has nausea on day 1 and day 3. She take a digestive enzyme suppliment because the chemo kills the rapiply diving cells in he stomach. This routine seems to be working; hope it works for you too. Chuck

Happy Birthday Betty - Hope it was a grest day. Taking from our experience, sometimes a cronic cough can rob you of breath. The last time we went in to talk to our Onc about this he said that it was because of the cough but to be aware that Shortness of Breath can also be caused by blood clots in the lungs. He always looks at Lisa's legs so see if there is any swealing due to clots. Also pleural effusion pushing on the lung can cause SOB. Do you have O2 as a back up or do you sleep with O2 at night? Have you had a chest Xray lately? Like someone already said you need to establish a new normal that includes plenty of rest and less work. Practice relaxing meditation. I taught Lisa this but she falls a sleep, but that's good too. Hope you have many more Birthdays. Chuck and Lisa

Hi Brandie, I'll give some of your concerns a shot. A lot of this is probably all too familiar to many of us here. I know everything was a blur and still is sometimes. You said your mom is healthy and in good spirits. That's a good start and do everything to keep it that way. I think you are in good hands with the cancer center you have started with but other cancer centers will trip over themselves to give you a 2nd opinion and usually in short term. I think every case is unique. In my wife's (Lisa) case she too had wasted a lot of precious time with our trusted primary care doctor. Useless back xrays, misdiagnosed chest xrays thought to be pneumonia. I'm of the opinion now that a younger doctor out of internship might be more concerned and proactive but that's in our past now. Because of the delays, Lisa finally said enough and we went to the ER where she was dx and admitted. Being admitted pushed things ahead and she was getting radiation simulation and the mask made within a week. She had a collapsed lung too but was getting O2 in the hospital. That's what you should watch should she start having worst SOB. My wife received about 10-13 WBR but was also getting chest and pelvis radiation at the same time and then they did 5 more treatments to the chest lung tumor. The results to the brain and sacrum worked pretty well and brain mets started shrinking and the bone mets were wiped out and she could finally sit down w/o pain. Once things get going for your mom things will start to happen on time as long as she stays strong. The radiation pretty much wipes you out and chemo does too so they don't do it at the same time. Lisa had a 2 week wait after radiation before they would start chemo. I know you and your mom are eager to get started with treatment but the time period seems reasonable as long as the symptoms don't worsen. I will add that Lisa was given one dose of Taxol and Carboplatin chemo therapy just before the radiation. The doc said that the Taxol would increase the effect of the radiation because she was way behind the power curve. I think this is the only chemo that can be used so close to radiation. That's what I picked up from Onc. So you are on your way. Keep posting and you will get lots of support not to mention millions of dollars of first hand information. Love Chuck and Lisa

Charlene, Like you I've only had to care for someone dx with cancer one time and this is it. We don't know all the answers at first and we learn as we go. Lisa has never been depressed, just sick and tired of being sick. Lisa did not go out either for months but she was not depressed, she was hibernating and healing. Your body needs to move in slow motion so your immune system can have the energy to kill a million or so cancer cells between chemo. and radiation. Your mom made a strong statement, "It doesn't take a rocket scientist to figure out why I'm so depressed, I have cancer" and from that I feel she has come to terms with it and nothing to worry about in the depression dept. The main thing is to get the treatments working and don't give up. As you can read from Lisa's profile she had many things go wrong but now she has found the right treatment and is just now wanting to help herself in and out of the car and walking instead of the wheel chair. That took 4 mos to happen. What helped Lisa most was for me to spend quality, quite time with her in the evening reading or telling stories to her. We all did that when we were younger, why not now? Take care of yourself - happily Chuck

Hello Marie, I've had that feeling many times that my wife's Onc has lost interest or whatever goes on in their mind to make you feel alone in your treatment. Each time that has happen I always have a plan B. I do the research online and contact a larger integrated oncology team. She has a private Aetna PPO and coverage was seamless. More on that in a second. I've found that I know more about Clinical Trials than our onc and I understand why. Some treatment centers are involved with research and some are not. Also, a well grounded oncology center may consider some trials too risky. Trials are only for when the current line of treatment is failing. I guess trials are also a choice to be made if you don't have a means or insurance to pay for treatment. Some clinical trials still require some insurance coverage to cover scans and tests. Since your insurance runs out in Nov. is there a provision to continue coverage? Cancer treatment is very expensive. "Your money or Your Life" someone said. Go to www.clinicaltrials.gov and type in lung cancer, new york and pick a trial you like and read the qualifications and exclusions and contact them directly. I have done this as part of my Plan B and they get back with you quickly. I even found a trial in New York City that will test the use of Nutritional Suppliments with Taxol and Carboplatin. They admit that Nutritional Suppliments can kill more cancer cells along with certain chemo therapies. My wife's use of suppliments have helped her feel better during treatment and I'm sure has killed more cancer cells because it's an everyday course without breaks and there's no half life. Anyway be proactive and do what makes you feel like you are working with a team that won't give up on you because I know You won't give up on You. Make wise choices. Chuck C