dukenukem

Michelle-

I have similar issues with low platelets. Normally, if they are at least 100 I get a full dose. If above 90, the onc will generally approve a full dose. Less than that she will give me a 75% dose.

Duke

First thing is to eliminate the desperation. You’ve made it through seven years, this is not the time to panic. Take a deep breath, or as many as you need. Look into Tom’s eyes and take strength from him. I am the patient, but sometimes I think it’s harder on the primary support person. You’ve been doing your best for all these years and you have so much to show for it. I’m not sure how this idiom will come over, but “keep on keeping on.” ==> Don’t give up. Treasure every moment you have and look for miracles where you can find them.

As for a second opinion, that will be endorsed by everyone on these Boards. So much has been learned in the last few years that was not even suspected seven years ago. Look at all the reports Gavin has posted.

There are excellent centers on the East coast in New York, Boston, and elsewhere you can go to for a second opinion.

Duke

Cillie –

You are a tailor and an herbalist. Good choice on the second. Nice threads on the first, but can’t say I love the hat. (And a recent BSN graduate in real life.)

Can’t wait for an update.

Duke

Thanks folks, it’s nice to be appreciated.

Gavin, you don’t write them, you just report them. Keep it up!

Duke

“Grrrr”? – is that an obscure Scottish dialect for “Oy vey”?

From Cancer.gov (as a reminder of what the different “phases” are:

“What does a trial’s “phase” mean?

New interventions are often studied in a stepwise fashion, with each step representing a different “phase” in the clinical research process. The following phases are used for cancer treatment trials:

Phase 0. These trials represent the earliest step in testing new treatments in humans. In a phase 0 trial, a very small dose of a chemical or biologic agent is given to a small number of people (approximately 10-15) to gather preliminary information about how the agent is processed by the body (pharmacokinetics) and how the agent affects the body (pharmacodynamics). Because the agents are given in such small amounts, no information is obtained about their safety or effectiveness in treating cancer. Phase 0 trials are also called micro-dosing studies, exploratory Investigational New Drug (IND) trials, or early phase I trials. The people who take part in these trials usually have advanced disease, and no known, effective treatment options are available to them.

Phase I (also called phase 1). These trials are conducted mainly to evaluate the safety of chemical or biologic agents or other types of interventions (e.g., a new radiation therapy technique). They help determine the maximum dose that can be given safely (also known as the maximum tolerated dose) and whether an intervention causes harmful side effects. Phase I trials enroll small numbers of people (20 or more) who have advanced cancer that cannot be treated effectively with standard (usual) treatments or for which no standard treatment exists. Although evaluating the effectiveness of interventions is not a primary goal of these trials, doctors do look for evidence that the interventions might be useful as treatments.

Phase II (also called phase 2). These trials test the effectiveness of interventions in people who have a specific type of cancer or related cancers. They also continue to look at the safety of interventions. Phase II trials usually enroll fewer than 100 people but may include as many as 300. The people who participate in phase II trials may or may not have been treated previously with standard therapy for their type of cancer. If a person has been treated previously, their eligibility to participate in a specific trial may depend on the type and amount of prior treatment they received. Although phase II trials can give some indication of whether or not an intervention works, they are almost never designed to show whether an intervention is better than standard therapy.

Phase III (also called phase 3). These trials compare the effectiveness of a new intervention, or new use of an existing intervention, with the current standard of care (usual treatment) for a particular type of cancer. Phase III trials also examine how the side effects of the new intervention compare with those of the usual treatment. If the new intervention is more effective than the usual treatment and/or is easier to tolerate, it may become the new standard of care.

Phase III trials usually involve large groups of people (100 to several thousand), who are randomly assigned to one of two treatment groups, or “trial arms”: 1) a control group, in which everyone in the group receives usual treatment for their type of cancer, or 2) an investigational or experimental group, in which everyone in the group receives the new intervention or new use of an existing intervention. The trial participants are assigned to their individual groups by random assignment, or randomization. Randomization helps ensure that the groups have similar characteristics. This balance is necessary so the researchers can have confidence that any differences they observe in how the two groups respond to the treatments they receive are due to the treatments and not to other differences between the groups.

Randomization is usually done by a computer program to ensure that human choices do not influence the assignment to groups. The trial participants cannot request to be in a particular group, and the researchers cannot influence how people are assigned to the groups. Usually, neither the participants nor their doctors know what treatment the participants are receiving.

People who participate in phase III trials may or may not have been treated previously. If they have been treated previously, their eligibility to participate in a specific trial may depend on the type and the amount of prior treatment they received.

In most cases, an intervention will move into phase III testing only after it has shown promise in phase I and phase II trials.

Phase IV (also called phase 4). These trials further evaluate the effectiveness and long-term safety of drugs or other interventions. They usually take place after a drug or intervention has been approved by the FDA for standard use. Several hundred to several thousand people may take part in a phase IV trial. These trials are also known as post-marketing surveillance trials. They are generally sponsored by drug companies.

Sometimes clinical trial phases may be combined (e.g., phase I/II or phase II/III trials) to minimize the risks to participants and/or to allow faster development of a new intervention.

Although treatment trials are always assigned a phase, other clinical trials (e.g., screening, prevention, diagnostic, and quality-of-life trials) may not be labeled this way.”

Duke

Suzanne –
There is so much help available on these Boards that is almost overwhelming. Take some time each day to explore. The Search function is good, but randomly following individual stories can tell you a lot, also.

Help comes in three forms.
There is an enormous amount of medical information here. It can help you form questions for your medical team.

The personal stories fill in the cracks not covered by medical information. They provide the inspiration to keep on, especially when the going gets tough.

Last, and most important, is faith. Faith in God. Faith in your medical team. Faith in each other. This is the part of your wedding vows where “in sickness and in health” steps up. It has been said by at least one person here that “This cancer sucks!” True, but it teaches you quickly what is important and what is not.

Duke

When I clicked on the “Read more” the link did not work.

I’m sorry, but what was the purpose of this study? They discovered that 30% of cancer patients have anxiety. That tells me that close to 70% of the patients were lying.

Again, I apologize for the cynicism.

Duke