On April 1,02 I was diagnosed with CML, (leukemia)I am taking Gleevec for it with good results. My Doctor says it is almost always fatal in 4 yrs. or about. My question is what will the end be like, they seem to always dodge that question and become diplomatic, when I ask. I need some straight info, not bullshit. I have done the web and it is not answering my questions. Save the sorry, what will be will be, what I need is info from those who know, and have the balls to shoot from the hip, and tell me. I would like to know, it is a fact of life thing, that few might understand. I would also like the bone marrow transplant survival chances ratio if known, or is it a last ditch kind of thing. Any replies would be appreciated. Please be brutally frank, I would like to, no need to know. Thanks in advance.

I'm not an expert at bone morrow transplants, but I donate platelets(its not a simple procedure, it takes something like 2-3hours) for transfusing into people who get bone morrow transplants. Contact the City of Hope in Duarte(15 miles east of L.A) Calif. [url]www.cityofhope.com[/url]. This hospital is the best in bone morrow transplants. If bone morrow transplant is an option let me know and I will donate blood platelets for you.

added--
It would be well to contact the City of Hope, in their literature, they claim to treat both the body and the soul. Maybe those folks can give you the straight answers you need.

added2--
I'm in the national Bone Morrow registery, so if Im a match, I will gladly donate for you.

I can't answer your question because I was very young, 8 or 9, when a teenage relative of mine died from leukemia.  I was told Brent was sick, and then later told that Brent had died.  I don't know what he went through.

The real question is what are you (and the rest of us for that matter) going to do between now and then?

How can we, your fellow AR15.com brethren help you?  Where can we go to find out if we are a suitable match for bone marrow for you or someone else?  We are here to help if you let us!

Just a little more info here, cause I did not want to edit the first post, the bone marrow thing is a no sibling affair. Not a big deal it is only a 1 in 4 chance of a match anyway.

None of us can really answer your question, and everyone that can will not be posting ever again....

Im sorry man, hang in there and never, ever give up hope.

Thanks but I need to know the odds of survival thing first if it is a long shot I will pass, I have seen the longshot thing speed the end result. I just can't say anything else right now. But thanks.

This is not what you want to hear, but I'll play it straight.

The first week of January 1995 my mother was diagnosed with early stage leukemia.

She died the second week of June 1995.

In her case the various aggressive therapies were moderately successful, but when the disease refused to go into remission, the chemo and other therapies did so much damage to her body that she elected to refuse further treatment and died within 72 hours.  She was 60 and previously in good health.

I was typed as a bone marrow donor, but in her case the disease progressed so quickly there was no opportunity to try a transplant.

Bone marrow transplant 5 year survival rates are actually pretty high, (~ 60~ IIRC). It's actually fairly difficult to find non-family donors however, as the donor procedure is actually more dangerous than being the recipient and very painful and debilitating.

If you really want to know what the end was like, shoot me a private email. I'd rather not discuss it here.

Good luck with your treatment. Keeping a positive outlook is really important. And remember that though the chances of long term survival are small, there is a chance and there is no reason you can't be one of the survivors.

Azazel where are you?

I know nothing about leukemia and even less about its treatment.

All I can do is offer my support, and you have it.  

my brother-in-law died of lymph cancer. they caught it very late and told him he had a 15% chance but it had gone on too far before it was caught and he had gone through so much bullshit he had a do not resuscitate order and the first time his heart stopped it was over. but he had it bad and was ready to go. he didnt really have much pain he was just tired all the time and had a weak appetite. he still played golf, hunted and fished and did everything he could do with his daughter

never give up. i bet you have a family that loves you and will support you. miracles DO happen. have faith and get your heart right with God. you just never know what could happen

No sir, I'm not him.

My Father, 69 at the time, was diagnosed with CML in April of 94. Doctors gave him 6 months to live. That's exactly how long he lasted. He elected to take experimental chemo, idarubicin in pill form, but it only made him weaker. He was too old for a bone marrow transplant. In those six months he went from 230 lbs to about 160. In his last days, he was given hydrea therapy to fight his skyrocketing white blood count as a last resort. He didn't have very much pain, but as his red count diminished, he got steadily weaker. When his brain was finally too starved for oxygen, he slowly faded into a coma, at home, under hospice care. He died two days later.

I wish you the best of luck with this, and I would hope that by now science can do more to treat CML. I must say that your positive attitude in fighting this is a very powerful ally.

Our preacher just got back from a treatment for CLL in Houston.  The treatment was a monoclonal antibody and his white count went from 80,000 to 7000 in a matter of four days.  It is still experimental but in the last four years the remission rate has been 80%.  Planerench out.

Brouhaha: You're my hero. Seriously.

Azazel: I admire your courage. Fight the good fight man. I wish you the best. If there's anything I can ever do for you or your family, please dont hesitate to ask.

-T.

Don't really know much about leukemia... but,

When i was 14 i was diagnosed with Osteogenic Sarcoma, Stage 2b.

i am now 20.

The bone cancer was on the inside of my femur just above my right knee.  After 6 months of radical chemotherapy (osteo-sarcoma doesn't respond well to radiation,) i underwent an eleven hour long surgery to have the bottom half of my femur replaced with cadaver bone and a titanium knee.

hence, the name TinLeg.

then, i had another 6 months of radical chemotherapy to ensure that no cancer had spread because of the surgery.

The MOST important thing is for you to remain positive.  You let it destroy you psychologically and you are as good as dead.

Remain positive, live positive, believe positive.

yes, you will have low points.  But thats why friends and family are there.

i am not sure exactly what Gleevec is... Chemo?  but i do know that chemo kills your bone marrow.  Your bone marrow is what produces new blood cells.  Thus your blood count goes down causing you to be susceptible to disease.  Like people with aids.  A cancer patient can contract a serious disease that the body will not be able to defend itself against because it lacks the white blood cells.

Chemotherapy itself is very very hard on the body.  I lost forty pounds in five days during my first chemotherapy treatment.  Toward the end of my treatments it didn't affect me nearly as badly.  i just sorta felt crappy for a few days afterwards.

my Chemotherapies were:
Methotrexate (bright neon yellow)
another one that looked like red gatorade
and two different clear ones
can't remember their names... might have them written down somewhere.


It is different for every person, it could be harder or easier for you.

The end?  Pain, the pain of cancer riddling your body.  Or the Pain of a body wasted away because of Chemotherapy.  However, if it does get to that point you will be so drugged up you don't notice.

you have two choices.

Say F@ck this shit, get up and live your live to its fullest, no matter how long it may be.

or sit down and die.

please feel free to email me if you have questions.

I don't know you, but if some part of me can keep you ticking, feel free to ask.. Hell, I used to donate blood a LOT, so marrow won't be a problem either..

You've now got TWO potential donors.. And I bet more will offer as this post gets read..

Meplat-

We had a patient at the hospital I work at, who had CML for several years.  Young guy, about 45 or so.  He beat the disease far longer than any original projection, and was able to live a reasonably pleasant life.  He had periods where he would get tired, especially after long days of activity (visiting friends, etc.)  However, in between periodic bouts of illness in which he was just pretty tired, he did ok.  In fact, the disease didn't get him...  he got shot in a sleazy motel room with a hooker in the middle of a drug deal.  But, that's another story...

All best wishes, and do keep a positive attitude.  I have seen people with a strong will to live do amazing things in battling illness, and beat the doctor's predictions by years.   Hang in there!!

John

Good attitude man.
I'll save the sorry's like you asked but instead offer any help I can.
If you need marrow I got some. Dont be afraid to ask.
Hope you get the best possible deal out of this, all things considered.

 One of my anuts was diagnosed with cancer of the internal organs, the doc sewed her up, and sent her home to die in 6 months.  It did get her in the end, 20 yrs later. She outlived the doc.  We are exceptionally strong willed in this family, and Aunt Dorothy took second place for it.  Guts and strength of will can get you a long way.
 Having said that, if testing me for a bone marrow match will help, say the word. It would be an honor to help one with the guts you have. I mostly just sit here and collect dust, so even if it is a snowball's chance in Hell, it's worth a try.  Stand tall.  Ops

Mentally, knowing you're facing death is a lot easier if you deal with God about it.  Whatever you're feeling, tell God about it.  Yell at God if you want, just get things right between you and God.  A good church can make a good support group, and it can't hurt to have people praying for you, even if you don't believe in prayer.  I'll keep you in prayer.  Hang tough.  Keeping a positive mential attitue is half the battle.  Just don't loose hope.

Azazel,

I dont have anything to share as far as what you are asking for the only one I have known to die from cancer was my friends dad and I was too young to know.

-----HOWEVER,-----

How did you know that you had a problem to get the diagnosis... in other words what were your symptoms??

You may want to speak to the people at the Washington University Medical School - they have a number of cutting edge programs, including some new types of bone marrow transplant.

My former father-in-law was diagnosed with melanoma leukemia, and was only given a few months.  But bescause he worked for Wash U. he was told of their program, and after the treatment he went at least five years, and last I heard he's still doing well.

[b]Azazel[/b] how old are you? How "fit" are you? That matters in your prognosis and how you may respond to treatments and their side effects.

In short - the chemotherapy wipes you out. Always fluish-feeling, nausea, diarrea, fatigue, nightsweats. But it does buy you time.

A bone marrow transplant (BMT) has a pretty good cure rate for CML. Of all the leukemias to get, that's one of the "better" ones as far as treatments.

If you get a BMT - it makes your chemotherapy look like a day at the spa. But it has a very good chance of curing you. It's DEFINITELY worth it if you find a match.

A VERY close family member had CML and received a bone marrow transplant. He had it for six years before the transplant and lived for 9 months after. After six years my brother was about 6months from dead when they found a donor - unrelated. He died of complications at 36 from graft-versus-host disease. He was cured of leukemia but the graft killed him because it wasn't a close enough match.  He left three small boys 4,5 & 7.

I've been in the National Bone Marrow Donor list for 10 years.

My prayers are with you.

azazel, I haven't been associated with leukemia, but I have had four family members die of cancer in the past 7 years. The oncologists all have said the same thing... one thing about cancer is that for MOST types, it's rarely the cancer itself that gets you. In many cases, the body starts to lose its ability to derive nutrients from normal stomach digestion. Therefore, the patient "wastes away" (malnourishment) in a manner of speaking. I have no knowledge whether or not this is the case with leukemia. My family all had either liver or lung.

I hate to be so blunt about it, but you seem to have a good attitude and want to know more about the last stages of the disease. I wish I had more to offer other than my own observations with my family members.

[b]Ditto![/b]

I'm in NJ.  If you would like me to get tested, please drop me an e-mail.

[email protected]

There is no maybe about the City of Hope giving you the answers you need. They have four, highly experienced Oncology Nurses, whose only job is just to answer questions, such as yours. They do a damned good job of answering. And you can talk to them repeatedly, at no cost to you.

How do I know that? I was given my own dire warning in 1995. Like you, I was looking for information. Man, I want to tell you, I got every question answered.

The doctors told my wife to make my final arrangements, because my time was short. How nice of them. Ninety days, and turn up your toes. God must have felt that he didn't have me perfected enough yet, because I am still here. But, I am perfectly content to go, anytime my Master calls me. I am on a vigorous watch regimen, and will be for a while.

I told those F-Bleep-ing idiots that I would be around to piss on their graves when they died. The look on their faces was hilarious.

Do call the City of Hope. Also, depending on where your located, the Sloan Kettering Cancer Institute has the same question answering facility. And the Mayo Clinic will answer your questions. Good Luck!

Bill

Edited to say: Because of my medical history, I am not a donor candidate, I wish I was.

BW

Could someone who knows how these things work please post describing how arrange to be checked for a match?

Azazel,

Quit looking forward to dying and think about living. Here's what I would do if anyone told me that I had cancer.

First, I'd get a second opinion.

Second, (I'm going to sugar coat this) I'd "F" the doctors I went to for both of those opinions. Them soothsayers would be only too eager to have me commit to poisoning it out (chemotherapy) or maybe burning it out (radiation), or cutting it up (bone marrow transplant). No way!

Did your doctor have a big fat gold nugget watch on his wrist? Or maybe he/they have their new boat all picked out? Screw 'em. Tell 'em you ain't gonna die and you ain't buying their shxx. I'd tell 'em to find another patsy!

Them SOB's are already progamming you into setting a death date (and so are some people on the thread - sorry fellas). The mind is a powerful thing: it can cure in an amazing way. You do NOT want to program yourself to die.

Third, I'd get into alternative medicine. These people will work to build up and strengthen your body's immune system. Those other slice and dicers offer therapies that lower the body's immune system. I'm told that all of us have cancer! The difference is how your body's immune system handles it. Here's some recommendations.

1. Dr. Stanislaw R. Burzynski, MD PhD

[url]www.cancermed.com[/url]

I understand that Dr. Burzynski has had fantastic results with cancer patients. He's in Houston, Texas.

2. Dr. Lorraine Day, MD

[url]www.drday.com[/url]

Dr. Day cured herself with nutrition and her ten step program. Now that she's OK, she's going around the country teaching people about it. Take a look at her site and see the tumor she had! She what she has to say about Dr.'s programming you to set a death date.

3. Dr. Mercola, DO

[url]www.mercola.com[/url]

Dr. Mercola has a side study in nutrition. He offers supporting information for the above Dr.'s.

4. Continue researching. I believe that there's many more workable herbs and remedys. Even O2 therapy. I'd try all the alternatives before I the "others" work on me.

You other doc's out there, quit messing the people up. Get some nutition training.

Attitude is everything.

Chemo and radiation have differing affects to people.  There are some GREAT new treatments that are coming out.  Everyday that you live increases the chance that a cure will be found.

For some people chemo knocks them on their butt and radiation does not bother them.  Others it is just the opposite.  Still others, both or neither have an affect.

You don't know till you get there.

Check out [url]http://www.nci.nih.gov/cancer_information/[/url]

Cancernet is a great place to get a lot of information.

See 2 or more doctors, if possible.  Check out new treatments (trials) that are in study - one may work for you.

Keep on living your life the best you can.

If you need to talk to someone who has gone through it (not same as yours), you can contact me and I will be glad to talk to you.

Above all, go shoot your gun and have some fun!

Last year me and my wife and I went to give blood during a blood drive (military sets up big blood drives a couple of times a year), and next to where they were taking the blood there was a bone marrow donor registration point set up.  What they do is take blood samples and add them to this database and if you are a match they call you up and you go donate your marrow.  I can't remember the name of the program right now but I will post it as soon as I find out.  We both entered the databse and if I am a match I would proudly give what is needed.

Our prayers are with you.

I believe it is one of these:

http://www.leukemiafoundation.org/Donor/Donor1.htm

http://www.bonemarrow.org/resource/

Hope this helps.  

Thats the one 82ndAbn.  Thanks.

I have no experience or knowledge on this matter, but you have my support and I wish you well my friend.

I had a big scare a couple of years ago and was told that I had only 6 months to live. I was then told, several weeks later, that there had been a mistake and I had several years to live. In the middle was many days of feeling like my life was over. I made my peace w/ my family, gathered my friends around and most importantly, made peace w/ God. At the same time I was determined to fight it as hard as I could and after a surgery to remove the tumor and my left testicle, I was on the path to recovery. Unfortunately, because of this episode, I am not eligible for marrow donation. But I will do what ever I can for you and yours during this time, just drop me a line.

Matt

An article appeared in the Journal of the American Medical Association (JAMA), (I believe Vol. 284, July 26, 2000?) stating that doctors are the third leading cause of deaths in the US causing 250,000 DEATHS EVERY YEAR. Do you understand? That's 250,000 every year.

[url]www.mercola.com/2000/jul/30/doctors_death.htm[/url]

With that record I wouldn't be so quick to go under their knife. Cancer patients have a poor working immune system as it is. Surgery only add more stress to the body. And stress deteriorates the body's immune system even more. So now it has to not only fight the cancer, it has to fight the trauma and infection of the cut.

There are posts above which offer help and that's commendable. But to me, I see it as being brain washed by the doctors to induce more cancer patients. Seems that they are not satisfied with just reducing the patients immune system, but that of others as well. And their pocket book. Seems to me that the doctors want more bodies with lowered immune systems so that cancer has even more of a chance to proliferate.

The doctors two prong plan of attack seems to be first ruin the body's chance of fighting cancer then ruin the patient's mental attitude for success. This is a program for death. That wouldn't be this puppy. Perhaps it's time to view doctors as purveyors of mental anguish. Perhaps they should be indicted for unnecessary mental cruelty resulting from an arrogant and over zealous state of power.

Dr. Day used to be a trauma surgeon. She knows how the body reacts to being cut. And she was able to "doctor" herself through nutrition. If she had believed her death notice, she wouldn't be here today. Now she won't eat anything that comes out of a can, a bottle, or a package.

The people who are offering help through bone marrow surgery may actually be offering a hindrance. They mean well but just don't realize the ramifications of surgery on the body. I'd consult the alternative doctors listed in my previous post on this thread.

I don't know what your condition is at this point in time. Hopefully, there is time to study and go "alternative". You're in control, not the doctors.

Take care and may the Lord Jesus Christ guide you in your hour of need.

Hint:
Peanut butter and coffee enemas won't cure cancer.

There is a lot of crazy shit out there.

If you want to know more email me private.

You need to live your life to the fullest.
If that means you want to watch Rockford files reruns or go base jumping off of El Capatain then do it.

I know a lady who was diagosed with leukimia in 1989.  She underwent chemo for a few months, losing almost all her hair, yet the disease kept on progressing.  She was informed that there is a Chinese traditional medicine practicioner in Jakarta, Indonesia, specializing in cancer treatment.  She stopped the chemo. She went to the Chinese lady and tried it out.  She was cleared of leukimia in 6 months and still lives a healthy life to this day.  

Another experience: my own wife.  She was diagnosed with a limph node cancer in her left breast in 1996.  It already progressed to the lungs, and liver, and it was on its way to the brain.  She was having problems breathing and could not lift anything as heavy as a text book using her left arm.

Based on modern medicine approach, the breast must be removed, followed by an aggressive chemo treatment.  But the limph node CA is the most difficult to treat as they flow in the liquid produced by the limph node and go to almost every organs.

We gave the Chinese lady a try.  The treatment consisted of numerous pills, tablets, boiled herbs, and fresh juice made of green apples and tomatoes mixed with some kind of honey.  The boiled herb was awful, but the juice was good.

At first, we went to see the Chinese lady once a week for a close observation.  After a month of treatment, we started seeing a siginificant improvements.  She was no longer having breathing problems, and she can start using her left arm again.  The dose of medicine was gradually reduced.  By the 6th month of treatment, she was back to her normal life again, taking her medicine just once a day.  By the 9th month, she was cleared of all CA.  But she still took the medicine at a much reduced dose (like twice a week or so) for another year just to insure there is no recurrence.  She has been well since.

BTW, the juice+honey mix will make you gain some weight, but not too much.  The treatment also comes with a list of dietary restriction. No meat at all during the course of treatment (that includes beef, pork, lamb, chicken etc).  I am not sure about seafood.

The cost is not too bad.  Back in 1996, we spend just about $100-$200 a week for medicines and other things.

If you would like to get some info, please email me direct at [email protected].

I dont know if the Chinese lady is still practicing now, but I can find out.  Indonesia is not exactly the safest place to be now.  But she lives in a prominent neighborhood in Jakarta that is relatively safe for Americans and foreigners alike.  


Good luck, and keep fighting !
oz

My grandfather died of Luekemia. He was the toughest old dude I ever met.

One time a northern pike spit out a big treble hook and it went right through Herb's(Granddad) thumb. He just grabbed his pliers and ripped that thing right out. Ouch!

Anyway, Herb was pretty weak after the disease hit him. He lived at home until the end. He was okay for about a year, then had a painful month, then that was it.

I suggest you live it up as best you can bro. Hug and kiss the family a bunch, pray daily, and take time to smell the gunpowder! If you want to go shootin, post it here and we'll figure it out for ya.

I'll be waiting for an answer!

I have been there my friend, feel free to contact me anytime and I will answer any question I can. I have been fighting for three years and recently got word I am cancer free. I started in 1999 with treatment, I was diagnosed with non hodgkins lymphoma, both large and small cell. The small cell was involved in the bone marrow in my case. I have taken about 50 chemo treatments and two months of that was gene cell therapy called "Retuxin". There are a lot of things that can and do happen to you and your body during all of this, I can tell you all about that. I spent the entire month of January in Vanderbilt hospital in Nashville for a stem cell transplant. I was violently ill for about 3 weeks, and I do mean violently ill. I was not capable of eating for about ten days and was given "steak & potatoes" in an IV that was attached to my chest VIA a three lumien port. My white cell count went to a -0.1 count for over 5 days, I was in isolation at that time. During that period of time ANY infection would have killed me very quickly and the docs could have not stopped it. I was not allowed to brush my teeth at all, and had to use a chemical to clean my teeth (minor gum bleeding could have resulted in my death due to bacteria). There are an awful lot of things that can and do happen to you as a cancer patient receiving chemo, I am very serious, get in touch and we can call and talk. By the way as an end to this horror trip, and to tell you NEVER GIVE UP!!!, I had a bone marrow biopsy on 14 November and got a call from Vanderbilt last week that informed me that my transplant was a complete success and I am now CANCER FREE!!!! That is the reason I say NEVER EVER GIVE UP!!!!

Tony G

I don't know about the Chinese lady. But I wouldn't write it off, who knows...But I do know of Dr. Burzynski. I'd start eating fresh fruits and vegetables and E-mail him to set up an appointment to visit him in Texas. That wouldn't cost too much.

As a matter of fact, those slice and dice doctors realize that they cannot make money by curing you. They make more money by treating you. So they have no financial incentive for your speedy relief. They just want you to keep coming back and try this then that. And do you think the pharmaceutical companies want you to not use their products? Not hardly!

Consider this, Most doctors who set guidelines have industry ties.

[url]www.mercola.com/2000/feb/20/doctor_guidelines.htm[/url]

In other words, doctors are prompted by the drug salesman to prescribe treatment. You think that chemo salesman wants you to try alternative remedies? Follow the money.

"A study published in 2000 in the AMA's journal concluded that doctors who have regular interactions with drug companies are influenced in their prescribing behavior by the gifts and perks they accept." and "...the pharmaceutical industry spends an estimated $2 billion a year on events for doctors in the United States." Part 2 eHealthy News You Can Use, March, 9, 2002, Issue 305.

Thinking of all the money you'd save by going to an alternative doctor is the reason people want to discredit this area of therapy. Don't fall for their deversionary tactics. Seek the alternatives.

I think you hit it on the head there.