Hi All:

I've been following the thread above about Diana's dad and his elevated counts. I'd like to offer a note of clarification on a couple of points discussed above by Gary.

First off, I would be cautious about directing someone to ask if receiving a transfusion is a "marginal issue". It is really hard to make a call about that without seeing a specific patient's panel of blood results over time. Sometimes, with oncology patients who are in for a long haul, there are expected drops in counts, call nadir points, which occur at predictable intervals. If a downward trend in counts in seen, a transfusion may be recommended prophylactically to rally the counts before they bottom out. In any case, it is appropriate to ask the provider to show you a copy of the trends and interpret the results so you can make an informed choice.

On the issue of the blood cultures, let me offer further clarification. A complete blood count measures predominantly the amount of red blood cells (RBC's) and blood volume (hematocrit) as well as the oxygen carrying capacity of the blood (hemoglobin). It also measures the white blood cell count (wbc) and can detect the presence of bacteria outside of a normal range and on an upward trend which may indicate a local or sytemic infection with an organism which is a bacteria ONLY.

A blood culture, often done when systemic infection is suspected, is a different type of test where the blood taken from the patient is planted on an agar plate to see if organisms grow that are present systemically in the person. It screens for organisms that are bacterial but ALSO picks up those that are protozoal and fungal in nature among others. People who are immunosupressed from chemo often pick up funky organisms that the general public have immunity against if they are healthy.
So,a blood culture is an ADJUNCT to the diagnostic process when a simple CBC may not capture all of the caustive agents that could be responsible for infection.

Gary-my intent is not to offend you in any way. I just think we need to be careful about posting information that is not technically correct because people here often take what is posted as hard fact and I would hate for you or any of us to unintentionally mislead someone undergoing treatment who is making decisions.Being a health care provider myself, I am especially sensitive to making sure the posts that offer medical explanations are accurate.

Thanks for listening,

Kim

Kim,
you DO have an uncanny way of offending me.

I have personally seen people die from blood transfusions, so what I said still stands. All I said (or implied) was question the doctor to make, in your words, an "informed choice". It seemed pretty clear to me. I didn't think I needed to go into "Sometimes, with oncology patients who are in for a long haul, there are expected drops in counts, call nadir points, which occur at predictable intervals. If a downward trend in counts in seen, a transfusion may be recommended prophylactically to rally the counts before they bottom out." which is way over the head of most visitors here.

Although I am impressed with your knowledge (as I am sure you are also) could you explain to me what the semantic difference is between "Make sure he really needs one" and "...you can make an informed choice".

We all know that sometimes doctors will order tests and procedures that MAY be of marginal benefit, hence my statement to question it. It's all about risk/benefit.

And your wonderfully detailed explanation about blood cultures is the same. I said bacterial (NOT viral) and mentioned in MY experience, I never had a blood culture, which are both truths.

About your statement (and obvious implication) "...I am especially sensitive to making sure the posts that offer medical explanations are accurate." would you care to elaborate which part of my experience was not accurate or true? I didn't sign off with "Dr." after all.

Are you the official OCF "medical police" now? Maybe Brian will offer a letter of introduction.

I merely share my medical experience, strength, and hope as do many other patients on this site (although most of the others are able to escape your personal scrutinization).

The underlying tone of my posts has always been either "question the doctors and be be your own advocate" or "your experience is not that much different from mine" -period.

Since I have personally actually BEEN through the treatment I think a little more respect is in order. You are singlehandly the reason why I choose to take breaks from posting here and sadly that IS a truth.

This is a public forum and people come here not looking for medical advice as much as trying to figure out, from a laymans perspective, what is happening to them or their loved one. Or, as in Diana's experience with her dad, what is a "normal" experience (please note the attempt to stay "on topic").

That was the biggest benefit to me personally throughout my cancer journey - knowing what was a "normal" parameter (and I will forever be in debt to Brian and various OCF members for sharing their experience, strength and hope with me, hence de-mystifying the process). The so called medical advice (that I received often) merely served as a springboard to open a dialog with the doctors to have a better understanding of the treatment process, potential complications, areas to be diligent about and making an "informed choice" as it related to me.

Gary (I AM NOT A DOCTOR) A.

Gary:

This post is out of line and I am respectfully asking you to please reconsider the accusatory tone it takes as it is neither beneficial to the mission of the forum nor is it productive in the quest to provide support and accurate factual information to people in crisis.

As you point out, this is a public forum but those of us who post have an obligation to be as precise as possible when providing information that is medical in nature or staying out of the waters of making recommendations without the proper expertise do so. At times, I feel you cross the line when you cut and paste quotes about studies, statistics, and medical regimes without the proper interpretation of the information or the provision of credible sources to back up your statements. As I stated, as a health care provider, I feel I need to speak up sometimes when information needs further clarification and I am sorry if that is hard for you to hear.

We all have something vital to lend to this forum and if it is your personal experience with a treatment that is where, as you stated, the context should remain.On the flip side,none of the folks on this forum are my patients in a professional capacity so you may note I offer general advice but am very cautious about recommending specific courses of actions for people (and I have been asked).

I won't engage in character attacks with any member of this forum because I have respect for all of us who participate and that includes you and everyone who gives of their time and energy to make this forum happen.Additionally, the most salient point you make is that you have lived through the ordeal of cancer and I would never profess to take claim that I know better than you what that feels like everyday. Your bravery and that of all the survivors here is an amazing inspiration. It is unfortunate that in the effort to retaliate you missed that message.

Kim

Sooooooo....Anyone heard any good jokes lately?

Gary and Kim,

As an observer in this exchange, I need to express appreciation for both of you and the passion and commitment you bring to this forum. As someone with a limited experience thus far in my journey, I read all of Gary's posts and respect his opinions and experience. I haven't had to go where he has been and don't want to, but I will have some idea of what to expect if I do.

Thank you Kim for bringing the medical knowledge. You really do clarify things in an easy to understand manner. I know it is tough to bring a different perspective in a discussion or to gently modify what someone else has stated to insure we get a balanced picture.

Sincerely,
Lisa in Ks

*Posted from San Francisco, Cancer Conference. I want everyone to re read the last paragraph of the page which introduces the patient/survivor forum. I know most of you have saved the main forum page as a favorite and you no longer go through that original description of the board, its purpose, and accepted standards of behavior. However, it specifically states that personal attacks are way off base and will not be allowed. The next volley that contains snide remarks, rudeness, or personal attack and that individual

GOD for once I pray we could stay on track and forget politics.

When I read Gary's post and Kims reply I thought "they are not seeing each other's point" WHICH BY THE WAY IS THE SAME POINT! Kim artfully added more detail (but still at that point in agreement)and then ?????????????

what the hell?

SO Anybody heard any good jokes???