Smoothstone

Thanks for the article. This article supports the development of bio marker testing. Are current FDA approval processes and standards keeping up with developments in this field? I am at a specially designated cancer care center and there has been no mention of screening for bio markers to facilitate treatment matching. Seems this mutation testing should already be best practices and not just available to those with big bucks. During the height of AIDS activism we had focus groups developing expertise, monitoring progress, and pushing on specific areas of treatments. This included the anti-retrovirals, but also the viral load testing and other bio markers. Seems we need the equivalent in lung cancer....we may already have it. If we do, how we doing in the bio marker testing area? AIDS activists worked closely with the pharmaceutical companies and bio marker development companies, often in concert pushing the FDA for faster approval and access. Activists also worked on pricing issues so that new drugs, bio markers would be reasonably priced. Mixed results on the pricing issues. Thanks, Hank

Thanks for the article. An examination of clinical trials policies, practices, needs is due. Has there been an assessment of such? Were recommendations implemented? Next steps? Barriers to change? Do some cancer centers have greater enrollment? Any changes that might result in greater participation? Patient perspectives? Provider/care giver perspectives?(academic research centers/cancer centers affiliated with academic research centers; private oncologists; Pharmaceutical company perspective? Perspective of past participants? Best practices? Is there an activist agenda around clinical trials? The article is a catalyst to examine the clinical trials policicies and practices and results. Thanks, Hank

Thanks for the report on this hopeful discovery. The test can already be purchased privately. This is good. What about access to the test for low income high risk people? Is there a plan and strategy to obtain FDA approval/insurance reimbursement? Is the company working on this? how? coverage for medical interventions based upon the results of this test? There are many accessibility questions and issues. This discovery is an example of where the discovering pharmaceutical and patient/advocates might work together to insure speedy and broad access to this discovery. Do we assume that NCI/FDA are being responsive to this discovery? There is the initial challenge of discovery and then there is the challenge of access, approval, reimbursement, etc. Advocates might make a difference in how soon there is access and utilization. Hank

Today, for the first time ever, the U.S. House of Representatives unanimously declared lung cancer a public health priority and called for a reduction in mortality “by at least half by 2015.” Good Momentum! The Senate has already passed a similar resolution. Time to thank our Reps. Short and simple. mail, email, call...its all noticed. Hank

Is there an equivalent plan that we in the US have? It really helps to have a multi-point breakdown. It gives me a chance to see where I might contribute, where others might hook in as activists. Once I get the list, my inclination is to find out who are the key people working/pushing/advocating on each of the points. Master calendar for activists? both short and long term....it can make a difference to have people with lung cancer at conferences, meetings,....pushing, asking key questions. In the AIDS activist movement we had working groups focusing on a specific area, specific drug being developed, a clinical trial or group of trials, a specific pharmaceutical company, etc. Overtime, all of us knew who to go to for info, support, strategy and we were working from all over the country via emails, conference calls, 1:1 calls etc. We got "community reps" on all the important decision making bodies....I'm meaning people with AIDS, the docs and researchers and pharmaceuticals were already represented. It the beginning it was a pressure and a push on each committee until they embraced the concept. We also had alternative reps with the acknowledgment that there would be cycles of non participation...because of health,breaks, etc., but that we would work relay style/team style in pushing the agenda(s). I'm looking for "a point, in a plan" to focus and develop a network. Thanks, Hank

Given the progress on the gene analysis front, does our drug/treatment approval process need re evaluation and adjustment. I foresee a more customized treatments in the future. Your specific genes/individual factors will point you to try a subset of available treatments, but also to forgo,avoid other treatments. There may be small subsets of us who will benefit from drugs which may never get approval through the current drug approval process. Is our lung cancer advocacy movement pushing on the drug approval front to factor in these effective, but only for smaller subsets of folks. ???? Thanks. Hank

Thanks for the news. The link didn't list the 12 steps...in case anyone can point to them. Thanks. Hank

acupuncture helped me. I would notice some relief for a 2-3 days after a treatment. The biggest improvement for me was taking alpha lipoic acid and acetyl L carnitine. Overtime, my discomfort in my feet gradually disappeared. Thanks, Hank

I developed peripheral neuropathy in my feet and fingers as a side effect of my HIV drugs. The tingling was in my feet...the tingling was like when my feet would go to sleep. I also had episodes of pulsing pain that would shoot through my feet. The latter would happen when I was lying in bed. The discomfort was increasing overtime. 1. I stopped the medication that was causing the nerve damage, and switched to an equivalent medication without peripheral neuropathy side effect.The discomfort did not get worse, just a chronic level especially noticeable walking barefoot at home or on the pool deck. I was lucky because at the time there were several alternative treatments which did not have peripheral neuropathy as a side effect. Switching may not be an option for everyone, but I have heard that the targeted therapies have less/different side effects. Originally, I intended to "tough it out, I'll get used to it"...big mistake because the nerves were being damaged. My doctor didn't feel my discomfort or he would have stopped me sooner. 2. A variation is to lower the dose of the problematic drug. But consult with doctor about this option or switching medications. 3. I was told the peripheral neuropathy would be continual because of permanent nerve damage. Not true. I read an article about diabetes induced peripheral neuropathy and use of alpha lipoic acid and acetyl L carnitine as a remedy. I tried the combo and after a month I noticed some gradual reduction in discomfort. Overtime the discomfort continued to lessen and now I feel no more discomfort. I do have some numbness in a few toes but no tingling or pulsing pains. The nerves can repair themselves and the alpha lipoic acid and acetyl L carnitine facilitate the repair. Dose: 100 mg twice daily of alpha lipoic acid 500 mg twice daily of acetyl L carnitine Not sure what dose is best or recommended and I can't remember how I came up with that dose. My doc just observed....I got the strategy from an internet article.Also, not sure if these supplements are contra indicated with the treatments you may be taking. 4. the neurontin may help with the discomfort...mask the pain,....but may be doing nothing about repairing the nerve damage. Not sure about doing both the neurontin with the alpha lipoic acid and acetyl L Carnitine. 5.www.pinestreetclinic.org may have some info on side effect management. Good luck, things can improve. The improvement took time. Luckily the article mentioned it would take time, so I was patient but hopeful. Hank

Many thanks Christine. I read your reports almost daily and its so hopeful to learn about future options in the pipeline. My priority is QOL and this posting is a real upper. Hank

I've been on a "low dose" of nelfinavir for over 10 years as part of my AIDS treatment. It has been very easy with only "surprise diarrhea" being a noticeable side effect. You think you are going to pass gas, but instead its a little fluid. Not often, but when I first started I would take an extra pair of pants if I hiked, or visited friends out of my city. This problem went away over time and last year it happened 1-2 times at most. I checked with National Cancer Institute and found I wasn't eligible for their phase 1, safety,dose escalation trial because of my previous experience with nelfinavir. I decided to experiment on my self because I had extra supply of drug. I increased my "normal low dose" by 50% for two weeks. No problems noted. I then increased my "normal low dose" by 100% and its been one week at that dose. Only problem: one day I had lots of watery stools/diarrhea during a 2 hour period. Luckily it wasn't "surprise" diarrhea. That was 5 days ago. I hope to do another week at this increased dose. My oncologist is aware of my "experiment" and I see him in 3 weeks to evaluate next steps. As far as my lung cancer symptoms, I notice some capacity issues when I bike, swim, run, and walk. I am definitely not up to normal, but also not ready for other fall back options yet...targeted therapies, chemo, radiation. we compared my May scan with a Sept scan and saw no new areas and minimal increase in a couple of chest nodes. I opted to increase the nelfinavir because I have tolerated it so well in the past. Totally aware that it is a gamble....but seems like that's a given even with the standard options to date. I am hopeful about drugs/treatments in the pipeline. I currently prioritize quality of life but am willing to endure harsh treatments if needed in the future. The NCI report that one of the nine participants had already seen a response was hopeful. And that is with a relatively low dose of nelfinavir. Keep us posted if you participate in the trial. I'm letting NCI know about my experiences. Every clue helps. Thanks, Hank

I talked with NCI today. This phase 1 trial tests for safety and efficacy in nelfinavir. I have taken the drug at a lower dose for over 10 years...and I recently upped my dose to the dose the NCI is studying. There have been no side effects noticed. That is why I'm alerting folks to this hopeful treatment. In the mice study, and 60 cancer cell culture studies, nelfinavir, came out effective. NCI tested the protease inhibitor class of AIDS drugs because they inhibit Akt, a protein essential for the development of many types of cancer, including non small cell lung cancer. Nelfinavir was one of the miracle drugs used to make HIV/AIDS a manageable, not terminal condition. Its been used in humans for over 10 years and has been popular because of its low side effect profile. We are lucky it may have efficacy against non small cell lung cancer. The docs and nurses at NCI are friendly and welcome questions. NCI will pay for transport no matter where you are coming from, after the initial visit. They can screen over the phone. Hank

Rattle the cages. Letters, interviews, testimony, actions, marches, events,pickets, drama....the media loves drama. When did you see a lung cancer die-in in the street, in front of a cancer conference? I haven't...ever. How did that unpopular minority of gay men get attention, resources,funding? Direct action. Drama. We rattled the cages. We were at risk, our friends were dying, some of us had symptoms....and we had an unresponsive government response, especially at the beginning...that included Democrats as well as Republicans...I remember picketing then Rep. Barbara Boxer at a townhall meeting because we couldn't get a congressional hearing scheduled....and the Democrats controlled both the House and the Senate. Two days after our picket the hearing was scheduled....It was 6 of us...we brought 2 weak guys in wheelchairs. Most folks are ignorant of our plight. They are ignorant about the impact on women....I just learned it reading your post. I was unaware of the disparity until my recent diagnosis. Its reasonable for us to start pushing. Many Americans respect people who fight back, who stand up to injustice. Rattle the cages. There are models of activism which have worked.... breast cancer activists attended our ACT UP meetings. I remember getting energy every time I heard a media report about some dramatic AIDS action. It was good therapy...with value to the activists as well as those they were acting for. Rattle the cages. There are many potential focus points everywhere. Some pressure points are constant,...hospitals,legislatures, some change ...conferences, conventions, meetings, etc. Thanks for letting me flashback. Ready to rattle the cages. If you rattle somewhere, please share. Hank

National Cancer Institute is testing an already approved HIV drug, Nelfinavir, to see if it's effective against lung cancer. There is a story on this development today at www.aidsmap.com in the "today's news" section on the leftside of the screen. The report is published in the Sept. 1 issue of Clinical Cancer Research. The phase I clinical trial is open and proceeding well. I spoke with Dr. Perry today .They need 30-45 people with non small cell lung cancer who have already tried at least one round of chemo therapy. Prior radiation is not required. This would generally be those of us with Stage 3B or 4. NCI pays for travel to Bethesda and also hotel costs, meals if needed. They will do telephone screening. 301-435-5609 Arlene RN ; 301-435-5413 Cytnthia RN; NCI Protocol # 00436735 Nelfinavir for lung cancer. From www.healthday.com : go to search "nelfinavir" for the Sept. 1 story: From www.healthday.com : " The researchers hit upon the idea of testing nelfinavir and other protease inhibitors as cancer drugs, because these drugs block Akt, a protein essential for the development of many types of cancer, including non-small lung cancer. In experiments with mice, the research team tested 6 protease inhibitors on non-small cell lung cancer and on 60 human cancer cell types from nine different kinds of malignant tissue. At doses that are safe in HIV-infected patients, three of the drugs, including Nelfinavir, blocked growth of non-small cell lung cancer and every other cancer cell type tested. Nelfinavir was the most effective of all the drugs tested. It caused cancer cells to self-destruct or become stressed to the point of dying. In addition, nelfinavir inhibited the growth of both drug-sensitive and drug-resistant breast cancer cells, indicating that it could be used to fight cancer cells that are resistant to common chemotherapy drugs. Nelfinavir may also be able to overcome resistance to radiation, the researchers reported. Dr. Dennis noted that low doses of nelfinavir are used in treating HIV, and even at those low doses, the drug is effective against cancer. The current phase I trial will test higher doses to find the most effective dose with the fewest harmful side effects, he said. In the trial, patients are already receiving higher doses with no apparent problem, Dennis said. I have 10 years of experience taking nelfinavir ...at the low dose for my HIV infection. Its been easy sideeffectwise for me...and that's why it seems especially hopeful. I would be interested in networking with anyone considering or on the nelfinavir/lung cancer trial. Thanks, Hank.

An interesting and hopeful development. Sept. 1: A drug used as part of a regimen to treat HIV also appears to kill cancer cells, researchers from the US National Cancer Institue report . http://www.healthday.com/Article.asp?AID=607811 "Repositioning drugs that are already FDA-approved could accelerate the development of new cancer therapies." At doses that are safe in HIV-infected patients, 3 drugs, protease inhibitors, blocked growth of non small cell lung cancer and every cancer cell type tested, the researchers found. One of the drugs is Nelfinavir (viracept). Now in Phase I clinical trial to determine safest and most effective dose for cancer patients.