25 replies to this topic

[Judy2]

I have done a Google search and can only find that Etta James died of chronic leukemia, I cannot find out if it was CML or CLL. Does anyone know?

Judy

[Judy2]

I just found the answer, CML ,http://articles.lati...e-etta-20110115 but she had a ton of other problems.

Judy

[Susan61]

Hi Judy:  I was going to answer your first post, and then saw your second one.  Yes, this woman had so many different health issues.  I do not know what type of Leukemia she had, but she had so much going against her with all her other health problems.  I hope nobody puts too much emphasis on her Leukemia.  Sometimes you read things like this, and then you start thinking of so many what if's.  Don't anyone do that to yourself.  They say she had some type of Chronic Leukemia, but I truly believe there  were other factors leading to her death.  She had no chance of any long time survival no matter what she had.

Susan

[HandsAndFeet]

Excellent advice Susan - thank you.  All too often we can wander off into the world of what-ifs...

[reedgirl]

Yes, she did have CML.  She also had several other health issues.  I agree with everyone else, we shouldn't focus on that part of her "bad health", just wish they wouldn't say it was from complications of leukemia that caused her death.  At least if they are going to do that I wish they would let us know what her treatment was, how far along she was when diagnosed, etc.

[Judy2]

She had major kidney issues, I'm sure that played a big part., Also, I think she was into drugs when she was younger, that probably caused a lot of damage. I'm with you reedgirl, I wish the media hadn't said it was from complications due to leukemia, it was kind of hard to ignore that but I keep thinking of all her other health issues and I'm sure that played a huge part in it. I guess I'm a little scared because I also have kidney problems. Everyone is different though, we really don't know everything that was going on with her.

Judy

[eithne01]

She did have Cml, no matter when you go it's all about complications of something. Focus on how well we usually are and all the research that goes on.

[pamsouth]

Susan, You are right she had a lot of other health issues, then CML.  However the news report of dying from Leukemia, Ouch!

PamSouth

[Tedsey]

It is quite possible that the report was incorrect.  Like Susan said, with so many health issues, Ms. James didn't stand a chance at a long, long life.  But making it until 70 with all her problems was pretty lucky.  We don't know what her real situation was or if she took her medication regularly. 

My aunt was very sick (in her 80s) and was dx with CML after she was dx with other serious things.  But her health issues and cause of death had nothing to do with her CML.  Could be the same sort of thing.  I would assume that when anyone hears that someone with cancer dies, they automatically think it must be the cancer that killed them.  Cancer, esp. leukemia in adults, is a death sentence, right?  Too bad the media is sometimes the vehicle that propigates such ignorance.  May we all live long to reset their thinking.  May we all die after a long life with CML, not from it.  Cannot wait 'til that gets out there.

Teds

[pamsouth]

Also I think the news said over the years she had issue with alcohol and drug abuse. That could be enough to kill anyone!

PamS

[BY196]

I wonder if she was able to be treated with TKIs, since news reports say she had chronic hep C (given the years of heroin and alcohol abuse, she was probably cirrhotic).  Given the relatively short time between when her diagnosis was announced and when she died, it seems logical that she was in accelerated or blast phase when diagnosed.  If that's the case, she could have required more aggressive therapy, which her family might have decided not to pursue because of liver and kidney function.  As well. she had dementia and her family may have chosen not to push aggressive treatment to preserve the quality of life she had left.  It's sad but I don't think any of us should worry as a result of it. 

Beth

[Susan61]

Hi Beth:   The more that comes out about Etta, you have to realize that nothing would have worked.  Like I said I hope nobody is dwelling on her problem because she also had CML.  Having CML was not her main culprit to all she endured, but when you see anything in the news regarding CML you have a tendency to look into the situation more.

      I feel so bad that this woman went through so much, and had so many many problems.  May she rest in Peace, and just let it go.  God Bless Her

Susan

[Tedsey]

Well, the article mentioned that she was "undergoing chemotherapy".  Either she was preparing for a SCT (which I doubt) or they got their facts wrong.  Chemotherapy generally doesn't work for people with CML.  If they are talking about TKI therapy, which is not chemotherapy, they have misinformed the public.  As scary as it sounds, we all know that some of us with CML will succumb to our disease or complications.  For example, low neutrophils and other low counts can subject a person to a myriad of dangerous health conditions.  Some of us have to take other medications to keep our blood counts steady that cause or may cause other medical issues.  I don't mean to be a downer.  We all know how serious this is and it is very hard to face, but we all deal with it daily on some level.  And the truth is, we are only speculating about her.  It is truly very sad if the CML drugs did not work for Ms. James or she was unable to be compliant with drug therapy.  However, since the success rate for 5 years is close to 90% for most of us, and the longer we live with the disease the better chance we have of outliving it, most of us will probably be OK. 

[pamsouth]

Tedsey

That is true Tedsey.  CML is serious, any cancer is serious.  We really do not know especially on the new drugs, which of course are keeping us alive, what the outcome will be in the long run and for different folk, and with age, etc.  None of us really knows what is coming down the pike.  I think that is why Cancer seems to lurk in the back of our brains. 

At a church down the street from me, the Pastor of about 3000 people, was just diagnosed with neck and throat cancer.  That is what he was called to do, preach (neck & throat cancer).  He is having chemo and radiation, so others are standing in to preach for him.  I would say he is in his late 40's to early 50's.  I mean he has been a preacher all of his life, led a good life, good family.  Not around construction, and hazards jobs.  Cancer is not respecter of age or occupation.

I think are enviorment and food and water supply gets worse.  I don't think our body can handle the overload.  Just my thoughts.

PamSouth

PamSouth

[Jamar]

Seems like when any celebrity dies from leukemia the news reports never say which specific type. This used to drive me crazy when I was first diagnosed over 2 years ago.

I am confident in the treatment available to me (to us) that I will not succumb to CML,

I totally plan on going out some other way, even if I have to ramp up the crazy in order to do so (skydiving anyone?)

[pamsouth]

Regarding ""If they are talking about TKI therapy, which is not chemotherapy"" CML is cancer and TKI do kill the cancer cells, thus I was wondering why we do not call TKI drugs Chemo?  

Defining Cancer

Cancer is a term used for diseases in which abnormal cells divide without control and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems.

Chemotherapy

Definition

Chemotherapy is treatment of cancer with anticancer drugs.

Purpose

The main purpose of chemotherapy is to kill cancer cells. It usually is used to treat patients with cancer that has spread from the place in the body where it started (metastasized). Chemotherapy destroys cancer cells anywhere in the body. It even kills cells that have broken off from the main tumor and traveled through the blood or lymph systems to other parts of the body.

Chemotherapy can cure some types of cancer. In some cases, it is used to slow the growth of cancer cells or to keep the cancer from spreading to other parts of the body. When a cancer has been removed by surgery, chemotherapy may be used to keep the cancer from coming back (adjuvant therapy). Chemotherapy also can ease the symptoms of cancer, helping some patients have a better quality of life.--

Pam Spurgeon

H/ 317-888-2913

C/ 317-507-4221

[CallMeLucky]

skydiving anyone?

I've done it - great experience, would highly recommend it if you have never done it as something you should do in your lifetime.  Of course I did it before I had CML, which probably seems crazy to some people, but it's actually pretty safe.  The only reason I don't do it now is because I told my wife I wouldn't do it when we had kids.  It just seemed irresponsible of me to do something recreational that I could potentially die from when I had a family to take care of, even though it is relatively safe.  But as soon as the second one goes off to college, I'm heading to the airport

[CallMeLucky]

It is important to understand the distinction between TKI drugs and traditional chemo therapy.  I think it is important for us as patients to have this distinction, and I think it is important for caregivers and other people in our lives.

These are some quotes from Dr. Druker

What is chemotherapy?

Chemotherapy is certainly a very effective therapy and in some cases it can cure advanced cancers, for example, testicular cancer or Hodgkin's Disease so chemotherapy certainly has a place.

But the problem with chemotherapy is that it is very nonspecific. It basically kills dividing cells whether they're cancerous or normal. It seems to have some sort of a therapeutic window where it kills more cancer cells than normal which is why it can even be given. But it's still nonspecific and that's why it has so many side effects. The hope is that over the next few decades we can start to replace chemotherapy with much more targeted treatments.

How does Gleevec work?

In chronic myeloid leukemia, we know that the leukemia cells, the growth of the white blood cells, is driven by a particular enzyme called the "tyrosine kinase." We know that this family of enzymes regulates cell growth. It's sort of like the on or off switch for a light. This is the on switch that triggers cells to grow.

In the case of chronic myeloid leukemia, there is an abnormality in the chromosomes. Two chromosomes have broken and rearranged and stuck this kinase in the "on" position so it's always signaling the white blood cells to grow and divide. A normal white count would be 5,000 or 10,000; in a chronic myeloid leukemia patient [the count is] 50,000 to 500,000, so 5 to 50 times the upper limit of normal.

What Gleevec does is bind to this specific enzyme and turn it off. It just completely shuts it down, and in fact because of the way that this enzyme works, the cells stop growing and then ultimately die.

How does this represent a new way of treating cancer?

Up until now the way we've treated cancer has been with relatively nonspecific therapies, things like chemotherapy which takes advantage of the fact that cancer cells are growing and dividing, but so are normal cells.

What Gleevec has done is it takes an understanding of what specifically drives the growth of one particular cancer, targets a drug against that specific abnormality-and just that abnormality-and thereby has been a very effective and relatively nontoxic therapy.

That's an important paradigm shift. It's like introducing antibiotics for infections whereas before you treated them pretty nonspecifically. Now you can actually target the abnormality and just attack the cancer cells without harming the normal cells.

This is from Wikipedia

Chemotherapy is the treatment of cancer with an antineoplastic drug or with a combination of such drugs into a standardized treatment regimen.

The most common chemotherapy agents act by killing cells that divide rapidly, one of the main properties of most cancer cells. This means that chemotherapy also harms cells that divide rapidly under normal circumstances: cells in the bone marrow, digestive tract, and hair follicles. This results in the most common side-effects of chemotherapy: myelosuppression (decreased production of blood cells, hence also immunosuppression), mucositis (inflammation of the lining of the digestive tract), and alopecia (hair loss).

Newer anticancer drugs act directly against abnormal proteins in cancer cells; this is termed targeted therapy and, in the technical sense, is not chemotherapy.

I think one of the big things to draw the line on is that while we think of Gleevec as killing leukemia cells, that is not what is actually happening.  Chemo kills cells (hopefully it kills more cancer cells then normal cells).  Gleevec blocks BCR-ABL, which in turn results in the leukemia cells dying off and no longer proliferating.  So that is a minor difference, that is actually a big difference.

Of course, my Gleevec comes in a bright neon green zip lock that says "WARNING CHEMOTHERAPEUTIC AGENT" on it.

[pamsouth]

The reason I asked the question, About chemo and TKI.  Some insurance are changing their view of codes for chemo and targeted drug therapy such as Gleevec.  Most insurance such as mine, Blue Cross of Michigan UAW RETIREE.  Will Pay for 3 follow up office visit to the oncologist every 30 days, using a code of V672.  Otherwise the insurance does not pay for office visits to the oncologist. However when I was diagnosed with CML and put on Gleevec, our insurance has interpreted the code V67.2 that is use for IV fusion chemo, to also be used for cancer such as CML and Targeted TKI drugs thus allowing or paying for 3 office visit per 30 days to the oncologist.  Most other insurance will not do this.  Most Oncologist in Indiana are not familiar with the ruling.  We live in Indiana but our Insurance is Blue Cross of Michigan as my husband is retired from Chrysler auto, and the auto makers insurance hub is out of Michigan.  I must be one of the few in the area I live in, Indiana, that has CML & Bl Cr of Michigan.  Lucky Me.

PamSouth

[Trey]

Pam,

Your definition of "chemotherapy" is not a generally accepted one.  Chemo kills much more than just cancerous cells.  TKI drugs do not.  That is a huge difference.

Gleevec is called a "biologically targeted therapy", not a chemotherapy. The term "chemotherapy" means literally "chemical therapy", but the usage of the term is reserved for potent agents that  are not targeted. Gleevec is like a bullet, and chemo is like a shotgun.  If someone took chemotherapy every day, they would not survive very long, since it kills a lot of good cells along with the bad. Also, you will never hear Dr Druker, Dr Shah, Dr Goldman, Dr Talpaz  or any of the most notable CML experts call these CML drugs "chemotherapy". Dr  Druker's bio makes a point to distinguish Gleevec from chemotherapy:

"He began treating patients in a community cancer clinic half a day a week—an  experience that cemented his desire to develop targeted drugs to attack  cancer cells without the harmful side effects of chemotherapy."

http://www.hhmi.org/...druker_bio.html

(See  para 3)

If  someone says the "broader" use of the term would apply to TKIs, then it would also apply to aspirin and every drug that is not a naturally occurring substance.