Susan's Recovery Chronicle: Special Edition: Everything You Wanted to Know about Adding Comments But Were Afraid to Ask

Tuesday, June 9, 2009

Special Edition: Everything You Wanted to Know about Adding Comments But Were Afraid to Ask

NOTE: today's update on Susan for DAY +7 is posted below this "Special Edition."

By popular demand, here's a "how-to" for those who don't know how to. It is intended for

(a) those of you who are wondering why/complaining about having to do a "word verification" in order to post a comment
(b) those of you who want to record comments for Susan but haven't because you don't know how
(c) those of you who are tired of commenting as "Anonymous"
(d) those of you who aren't "Followers" and wonder what you're missing, if anything (the "Followers" are those 19 people [current count] listed against their pictures or silhouettes in the green strip off to the right

WARNING !! Terminal boredom lies ahead (pun intended). If you aren't among those described in a, b, c, or d, read no further. It's a long post (I get paid by the word) and dull.

(a) Why "word verification"

Malicious "bots" troll the blogosphere looking for opportunities to post nonsense, advertisements, and even "malware" to blogs that have not defended themselves.
SPAM bots (bots that post SPAM) and other cybernetic bad guys cannot read randomly squiggly writing (sometimes we can't quite either), which is why you are being asked to decipher the squiggly word and type it in, thus proving that you are a human, not a software program up to no good.
If we did not take this precaution for Susan's Recovery Blog, we would risk spurious, and possibly harmful, postings.
NOTE: the word verification is only necessary when you come in as Anonymous or Name/URL or haven't yet signed on to your account ID (if you have one). If you have already signed on to one of the recognized profile accounts with your ID and password, like gmail, for instance, you won't be asked to interpret the squiggly word.

(b) To record a comment:

In the thin white rectangle that runs across the bottom of each posting you will see the word "comments" underlined and a small green dialog balloon icon immediately adjacent to its left. Clicking on either of these will take you to the top of the comments section for that posting. Beneath the most recently added comment is a blank white box (depending on how many comments have already been posted, you may have to scroll down to see it). Position your cursor anywheres within the box and click. You will now be in data entry mode and can type your comment.
Before you can post your comment you must choose a profile from the "Select profile" dropdown menu. The topmost choice is "Google Account" followed by five other much less common on-line profile IDs that some of you may have. If you select any one of these six, the nickname associated with your profile will appear at the top of your comment. If you do not have/select one of these profile IDs, you have the choice of two more profiles: "Name/URL" brings up input fields for you to enter that information, which will then appear at the top of your comment, or you can select "Anonymous," which is what most of us have been doing, not necessarily because we want to, but because we don't have any other online indentity to use. It is not bad to be "anonymous," but if you are, it is ESSENTIAL that you SIGN YOUR COMMENT (i.e., type in your name at the end) or Susan may not know that it is you sending her the comment.
If you select one of the six account profiles and you are are already signed in, then clicking the "Post Comment" button will add your comment to the bottom of the comments for that particular blog post. If you are not yet signed in, a "word verification" box will pop up, and typing in the squiggly word you see will bring you to the sign in page for your identified account. Signing in will cause your comment to post.
If you have selected "Anonymous" or "Name/URL" as your profile, you must then click on the "Post Comment" button, which will bring up the word verification box. Typing in the letters of the squiggly word you see and then clicking the "Finish" button will cause your comment to post.

If you are tired of being "anonymous" and don't have one of the six on-line account IDs (e.g., Google, AIM, et al.) the easiest solution is to let yourself be googlified.
To do this, select as your profile "Google Account" (even though you don't have one yet) and then click on the "Post Comment" button. This will open a word verification window [NOTE: if you are signed in with one of the specified online account IDs, you will not have to do word verification] where you will be asked to type in the letters of the squiggly word you see in order to prove that you are a human and not a machine (like a SPAM bot).
Typing the word in and then clicking the "finish" button will then open a page where you will be asked to sign in to "Blogger" with your Google account. If you already had a Google account (like gmail), but just hadn't signed in yet, you would do so here, but you don't, because if you did, you wouldn't need to read this instruction. Since you don't have a Google account, you'll want to avail yourself of the option at the bottom right to "Create an account now"
Click on it and follow the prompts and you will create your own gmail account, thus giving you the information you need (email ID and password) to sign into your Google account, and so, Blogger.
You don't have to use gmail, you just have to create the account. It's free, it's quick to do, it's easy, and it's part of Google's nefarious plot to googlify the world.

(d) For those who'd rather be Followers than Leaders:

Followers in a blog are simply those people who click on the "Follow" button in the green box and follow the prompts to become a follower. To do so, you must sign in with an account like Google, AIM, Yahoo or a few others. Clicking the Follow button brings you to a screen with prompts to do this.
Essentially, what being a Follower means is that you will be notified on your Blogger Dashboard when there is a new posting to any of the blogs that you "follow" (the Blogger Dashboard is an option that can be visible when you are signed in to one of the approved accounts). It also means that you are publicized in the blog as a Follower so viewers of the blog can see who the Followers are, and see what you look like if you have posted a photo as part of your account profile.

By the way, you do have the option of being a private Follower, which means you get to see but not be seen (i.e., have the blog tracked in your Blogger Dashboard but don't have yourself identified on the blog as a Follower).
As to whether or not to become a follower, it's your choice. It isn't necessary to do so in order to see the blog or to post comments. It can be useful if you're someone who looks at the Blogger Dashboard. Or it may be important to you to know that other people looking at the blog know that you are a Follower.

Hope the foregoing enlightens more than it confuses.

1 comment:

David FinkJune 10, 2009 at 5:20 PM
After reading that, I think I'm going back to quill and parchment. Otherwise, sounds as though Susan's in the category of no news is great news! Bob, when are you graduating from potatoes to a major food group, like brownies? By the way, Steve Brown agreed the pictures probably are hung too high in the apt. Feel free to adjust.
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Susan's disease

Chronic Lymphocytic Leukemia (CLL) is a slowly progressive form of lymphocytic leukemia, characterized by an increased number of B lymphocytes, one of 5 types of white cells in the marrow and blood (hence the concern when white cell counts are elevated). The role of B lymphocytes is to produce antibodies to help combat infectious agents such as bacteria and viruses. With CLL, B lymphocytes multiply unchecked and, in the absence of threats to combat, will attack healthy cells and tissue. It is common to experience enlargement of the lymph nodes and spleen as the disease progresses. CLL is the most prevalent form of leukemia and occurs predominantly after age 55, although Susan, ever the precocious one, was 50 when she was diagnosed.

Susan's diagnosis came in December, 1999, when routine bloodwork revealed an abnormally high white count. After evaluating the several world class cancer centers in the US, she settled on Boston's Dana Farber Cancer Institute (DFCI), affiliated with Harvard Medical School.

Susan was fortunate to be introduced by mutual friends to Dr. Lee Nadler, a Senior Vice President at DFCI and Professor of Medicine at Harvard Medical School. Dr. Nadler, who does not normally take on a patient load, agreed to become Susan's primary oncologist and has, over the years, arranged for her to see the appropriate specialists as needed, whether at DFCI or other institutions.

Susan underwent a regimen of chemotherapy from May through September of 2001 which provided her a strong remission lasting until the Spring of 2005, when elevated bloodcounts indicated that additional treatment was required. Tests revealed that the locus of the disease at that point was in her spleen, and she underwent a successful splenectomy operation in August 2005, enabling her to reestablish her remission.

Of course, there's a wrinkle. Over the past couple of years blood sample analyses have shown the presence of both Hodgkins Lymphoma and non-Hodgkins Lymphoma cells, suggesting that the disease has been morphing, muddying the waters as far as a clearcut diagnosis is concerned. There is no label for what Susan has (we are calling it a variant of CLL, for simplicity's sake). However, it doesn't really matter. The course of treatment at this point is the same: a stem cell transplant.

Although Susan has been fortunate enough to be essentially asymptomatic all these years, her white cell counts have gone up as high as 320,000, only to be brought back down to a reasonable level through chemotherapy. To put that number in perspective, a healthy individual's count usually ranges between 4,000-10,000. The fact that she doesn't look sick and generally feels fine does not mean that she doesn't have a serious and progressive illness.

From the beginning, Dr. Nadler had indicated that at some point the disease would advance to where the best course of action would be a transplant procedure, which is dangerous but potentially curative. That point is now.

Susan's Transplant Procedure

RATIONALE for the TRANSPLANT

While the right protocol of chemotherapy can produce a remission in patients with blood cancers, these remissions are almost always temporary, not curative. The number of remissions a particular patient's disease may enable him or her to realize is very limited - sometimes only one, sometimes several - but in general any successive remission(s) is less robust and of shorter duration. The time comes when the best approach is to go for a cure, which is what a successful blood and marrow stem cell transplant can offer. The transplant entails significant risks (as outlined below), but Susan is at the point where the benefits of another remission (if successfully achieved) might be fleeting and leave her less able to tolerate the transplant at some future date.

BLOOD and MARROW STEM CELL TRANSPLANTS: the SHORT COURSE

Blood, despite its homogenous appearance as a red fluid, is actually a very complex medium that contains many different factors, all of which are generated by a person's bone marrow. In a blood cancer like Chronic Lymphocytic Leukemia (CLL) these components of the blood become unbalanced. A person with CLL produces an ever increasing quantity of white cells in the blood over time, particularly B lymphocytes.

White blood cells , including lymphoctyes (B lymphocytes, T lymphocytes, et al.) act as the body's defense against infection and other foreign bodies, and so they naturally increase to combat such threats, but when the threat has been eliminated, the white cell count returns to its normal level. To oversimplify, elevated levels of white cells, pumped out by malfunctioning bone marrow, with no disease or infection to neutralize, begin attacking healthy tissues and systems. This is the case when a person has CLL.

If the bone marrow which produces the white cells can be restored to its proper functioning, then the white cell count will return to normal. A blood and marrow stem cell transplant can achieve this by largely destroying the sick person's marrow through chemotherapy and/or radiation and then replacing it with healthy marrow. To be more accurate, it is not the physical marrow which is destroyed and replaced but rather stem cells within the marrow responsible for the production of red cells, platelets, and the various kinds of white cells, including the lymphocytes. Therefore, the procedure is most accurately called "Blood and Marrow Stem Cell Transplantation" or Stem Cell Transplantation, although it is often referred to loosely as a Bone Marrow Transplant since the diseased marrow is being regenerated via the healthy stem cells of the donor.

There are two basic kinds of Transplants: autologous and allogeneic. In the autologous version, the patient's own stem cells are harvested during a period of strong remission when healthy stem cells predominate. The blood or marrow with the healthy stem cells is then frozen for later use when the disease has returned in force. In the allogeneic version, the healthy stem cells are provided by a donor whose tissue type closely matches that of the recipient. Susan will be having an allogeneic transplant.

In fact, there are two types of allogeneic transplants - the full or standard transplant (myeloablative transplant) and the so-called "mini-transplant" or "reduced intensity transplant" (non-myeloablative transplant). The standard transplant involves very high doses of chemotherapy and/or radiation in the conditioning phase (the week prior to the transplant), which is very hard on the recipient's system. The mini-transplant involves less intensive conditioning and is better tolerated by older patients (roughly 55 years old and up; Susan, like Jack Benny, is 39 . . . for the 22nd time). The standard transplant works by destroying the diseased bone marrow nearly completely, but with very significant stress on the recipient's system. The mini-transplant works by relying on the donor's immune cells, whose efficacy is bolstered by a drug protocol, to destroy the remaining cancer cells. Susan's medical team has determined that the mini-transplant is the most appropriate procedure for her.

The week or so prior to the actual transplant is referred to as the "conditioning phase" and is used to destroy as many of the cancer cells as possible as well as to suppress the patient's immune system to minimize rejection of the donor's cells. This is done via chemotherapy and/or full body irradiation, and can be very taxing. The actual transplant procedure is similar to a blood transfusion but takes several hours to accomplish.

In the immediate post-transplant period, the patient's immune system is severely compromised and he/she needs to be kept in a protected environment (first the hospital and then a kind of half-way house) and closely monitored. Within a month or so of the procedure, normal blood function is re-established to a degree sufficient to allow the patient to return home, but the environment needs to be very carefully managed to minimize infectious agents. Chronic Graft Versus Host Disease (GVHD - see below for "Risks") can be a significant risk for a year or more after the procedure.

RISKS

The conditioning procedure for an allogeneic stem cell transplant may produce a variety of unpleasant side effects, from mild to quite severe, but these are generally manageable and not considered life threatening. Because it involves a less rigorous conditioning, the "mini" version of the allogeneic transplant (the kind Susan is having) generally causes fewer and less difficult complications. However, there are still three major risks to consider with an allogeneic transplant :

1. Disease or infection.
The conditioning process essentially destroys the patient's immune system, leaving him or her virtually defenseless against disease or infection in the pre- and immediate post-transplant period. Therefore, it is extremely important that the patient's environment be carefully controlled to minimize contact with infectious agents. Measures include filtering the air in the room, requiring visitors to wear masks, ensuring frequent and thorough handwashing, eliminating raw foods (e.g., fruits and salads) from the diet, not allowing flowers or plants (which well-wishers might send) into the environment, and so forth. The medical team will also provide the patient with antibiotics and antimicrobial drugs as a preventive measure. It generally takes a month or so for the donor's stem cells to promote formation of enough blood and immune cells in the recipient for him or her to leave the protected environment.

2. Graft Versus Host Disease (GVHD)
The allogeneic transplant works largely through an effect called "graft versus tumor" (GVT), where the donor's lymphocytes identify the patient's cancer cells and destroy them. However, the donor's lymphocytes may also attack the patient's normal cells, which they might recognize as a foreign body and so a threat to be neutralized. When this happens, it is called Graft Versus Host Disease (GVHD), a complication that carries a definite mortality risk. The careful tissue matching that is done to ensure donor and recipient compatibility reduces the likelihood and potential severity of GVHD, but it cannot eliminate the risk.

The more complete the tissue matching (it is never 100%, except with identical twins), the healthier the recipient is going in, and the younger the recipient, the milder the case of GVHD is likely to be. Nevertheless, the majority of recipients will experience some degree of GVHD, despite the prophylactic drugs that the medical team administers.

GVHD occurs in two forms -- "acute" and/or "chronic." The terminology has nothing to do with the degree of severity, but rather refers to the timing. Acute GVHD occurs within the first three months, but its likelihood of occurrence diminishes somewhat with time. Chronic GVHD is what develops at some point after the period for the acute phase has passed. The risk for chronic continues for a year or more after the transplant procedure. A person who has developed and been cured of acute GVHD is still at risk for chronic, as is someone who has been symptom free even a year out.

3. Host Versus Graft Effect
Since the patient's immune system is not entirely destroyed by the conditioning regimen, it's possible for the remaining cells to reject the transplanted donor stem cells, in which case the transplant is unable to gain traction and do its work. Again, careful tissue matching between donor and recipient will reduce the likelihood of this effect to any worrisome degree, but some level of risk remains.

SUSAN'S MEDICAL TEAM

Dr. Lee Nadler - Lead oncologist and case manager - DFCI
Linda Drury - Physician's Assistant to Dr. Nadler - DFCI
Dr. Robert Soiffer - Lead transplant specialist - DFCI
Amy Joyce, Nurse Practitioner for Dr. Soiffer
Dr. Michael Grossbard - Local (NYC) oncologist and case manager - Roosevelt Hospital

Blood and Marrow Stem Cell Transplantation - a pamphlet

In the top right corner of the pamphlet's control bar is an icon that will toggle the document to full screen. Then use the +/- buttons to control the size of the viewed page. Toggle back to return to the top of the blog window.

Transplant Pamphlet

Publish at Scribd or explore others: Health & Medicine Research

http://www.scribd.com/doc/15894155/Transplant-Pamphlet?secret_password=14dot1c2s1fyv9g8j4k2

Susan's Recovery Chronicle

Tuesday, June 9, 2009

Special Edition: Everything You Wanted to Know about Adding Comments But Were Afraid to Ask

1 comment:

Background Information

Leukemia and Lymphoma Society-Home

Dana Farber Cancer Institute - Home

Blood and Marrow Stem Cell Transplantation - a pamphlet

National Bone Marrow Transplant Link

Followers

Blog Archive

Susan's disease

Susan's Transplant Procedure

Blood and Marrow Stem Cell Transplantation - a pamphlet