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Old 02-20-2004, 05:06 PM   #1
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Eponine HB User
My boyfriend died 3 days after getting the diagnose of leukemia

Hi.

ive been having difficulties finding boards with people who have experienced this illness and i feel like im in complete darkness when it comes to my knowlegde about this disease.
well ill start from the beginning.

I met my boyfriend when i was 17 (my first boyfriend ever, and his first girlfriend too), and had 7 wonderfull years together. Its needless to say i loved this man deeply and planned my future with him, he was the most caring, loving man ive ever met.

I dont even know when the weightloss started, and the pain in his back and joints. I thought he was overworked, maybe had an back injury from carrying heavy weight and so on. We went to a doctor in december, and he took a bloodtest. My boyfriend called him up a couple of days later, but we didnt really get a clear message on what was wrong with my boyfriend back then( he went to see the doctor cause he was experiencing feavor and he was feeling sick). Yesterday i found out they saw that he had 37 white blodcells back then, and this is my first concern. Is this in an early stage? Could he had begunn treatment and have a chance of surviving back then if they told us he had leukemia?

Early this febuary we are again at the doctors office(after a stop at the doctor in january, back then he got the diagnosis of an kind of back injury). Now they actually take a bloodtest and they call back the day after sending us to the hospital. There we get the message(in a quite cold and harsh way if i may add) accute leukemia (i think he had 278 white blodcells at this point, with the leukemia infecting his kidneys).

My boyfriend is puking and also urinating blood at this moment, and they send him up to another hospital so he can donate sperm...he is puking blood all the way up and has to be transported in a wheelchair everywere. Then we were free to go home the doctors said, and come back later.

Well me and his other family clearly saw he was in no state to be transported home, he needed medical care, so we insist on him staying over at the hospital.

This night my boyfriend looses his mental stability, he is starting to ramble and then he goes into unconsienceness. They scan his head and find 1 major bleeding and 2 minor, and 3 days after knowing his diagnoses he dies of the bleeding..

What i really want to know is, how bad was the state of my boyfriend at the two points you guys think?
Talking first bout december when they didnt tell him, with the whiteblodcell count of 37. And when he died with 278 whitebloodcells..could he have survived if he didnt get the bleeding in the brain? or was that too late, cause i dont even know what a high count of whitebloodcell is, like what is "normal" under the circumstances of leukemia?

I guess i want to know if anything at all could have been done to save my love.

 
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Old 02-20-2004, 08:29 PM   #2
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dazedandconfused1 HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

my mother was diagnoised with the same thing she kept insisting that she wanted to see an cancer doctor they found it and treated he aggressivly with chemo she is now in remission

 
Old 02-22-2004, 10:44 AM   #3
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grracne HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

Quote:
Originally Posted by dazedandconfused1
my mother was diagnoised with the same thing she kept insisting that she wanted to see an cancer doctor they found it and treated he aggressivly with chemo she is now in remission
What a sad story, I couldnt stand to not respond to your message. I am sorry for your loss. I do not know anything about cancer, but hopefully some others can give you some.

I am sorry.

 
Old 02-22-2004, 12:07 PM   #4
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dazedandconfused1 HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

i am really sorry about your boyfriend they should have sent him to a oncacolgy cancer doctor

 
Old 02-22-2004, 08:44 PM   #5
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princess18 HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

Quote:
Originally Posted by dazedandconfused1
i am really sorry about your boyfriend they should have sent him to a oncacolgy cancer doctor
I also wish i could give you advice, but i dont really know much about leukimia. Im so sorry about your boyfriend and you having to deal with his loss. He sounded like a really sweet peson and im sue hes looking down on you and very happy that you are trying to find out some answers to his death. I dont know what its like to lose a love, but im sure its worse than a person can ever imagine. Although you are tremendously greiving try not to be sad all the time. I think your boyfriend would want you to be happy, even though its hard for you. Hes not in pain anymore, but your sad because of his death and what he went through. He will never really be gone though, hes in your heart forever. And try and think of the happy times with him, instead of when he was sick. Itll make you feel a little bit better. Try looking at pictures if it doesnt make you too emotional. I hope you find some releif in the greiving process.
christine

 
Old 02-22-2004, 09:38 PM   #6
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Anamika HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

Hi Eponine
It is really a shocking experience to witness leukemia in a person whom you love so dearly...I am recently dianosed with lymphocytic leukemia...In India we call it Karma...Whatever has to happen will happen anyway, even if we were doubly careful. I have posted my story at obesity and you can read it for a change...Be happy always even for the present you feel otherwise..Life is beautiful and be strong to tackle anything headlong...

 
Old 03-15-2004, 05:59 AM   #7
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jennfaery HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

I am truly sorry for your loss. I do not know what I would do if I was in your situation. I wish there were something I could say or do to make the pain that I am sure you are feeling go away. Take care.

 
Old 03-16-2004, 12:02 PM   #8
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logical_ditz HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

I am so sorry for your loss... I lost my grandmother to cancer... I know it's not the same but we were truelly best friends.... It's been 4 years and I still cry over it to this day. It gets easier but you never stop missing the ones you love after they pass on.. I've heard that it is better when you go fast so your family doesn't have to suffer. I don't know if this is true... I'm sorry you have to deal with this. Doctors don't want patients to die, otherwise they wouldn't be doctors, so there was probably little warnings... or they thought they had more time. They should have from what you are saying taken a deeper look into why his count was so low. Find a way to be happy.... Please, do it for yourself.... Try to make his memory last forever... volunteer, talk to others who are having the same problems..... just do something that helps him live on and makes you feel good at the same time... Life goes on... let yours go on....


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Old 03-19-2004, 11:27 AM   #9
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Neechie HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

I am so sorry for your loss. I don't have anything that I can add except my condolences. I think it's emotionally difficult to allow your mind to guess at what might have happened under different circumstances - although we all do it. I hope that finding like-minded people will help with the sorrow that you feel. Take care.

 
Old 03-26-2004, 09:42 PM   #10
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heatherdarbs HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

I too had a boyfriend with AML. I did a lot of research about it. I'm not sure I understand why the doctors didn't know the diagnosis through a blood test, as it is after all a blood disease. Since the disease is acute, the onset is rapid and the disease is rapid, so it's not very easy to save the person, especially if it's a late diagnosis. I'm no doctor, but this is what I've learned. My boyfriend almost died, but they were able to do a bone marrow transplant to save him. He was in remission for 5 years, but it came back. He went through the treatment again and he's now in remission. I'm sorry to hear of your loss. It's a dreadful path ahead while trying to rid yourself of that type of cancer. And with the treatments that put that cancer into remission may come major side affects that the patient may have to endure even while in remission. I guess in a way it may have been God sparing him. I don't know if that makes you feel better, but some people would rather know thier loved one is safe in heaven.

Last edited by heatherdarbs; 03-26-2004 at 09:53 PM.

 
Old 03-27-2004, 05:43 AM   #11
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LIBLONDIE45 HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

Quote:
Originally Posted by heatherdarbs
I too had a boyfriend with AML. I did a lot of research about it. I'm not sure I understand why the doctors didn't know the diagnosis through a blood test, as it is after all a blood disease. Since the disease is acute, the onset is rapid and the disease is rapid, so it's not very easy to save the person, especially if it's a late diagnosis. I'm no doctor, but this is what I've learned. My boyfriend almost died, but they were able to do a bone marrow transplant to save him. He was in remission for 5 years, but it came back. He went through the treatment again and he's now in remission. I'm sorry to hear of your loss. It's a dreadful path ahead while trying to rid yourself of that type of cancer. And with the treatments that put that cancer into remission may come major side affects that the patient may have to endure even while in remission. I guess in a way it may have been God sparing him. I don't know if that makes you feel better, but some people would rather know thier loved one is safe in heaven.
My gf was diagnosed with AML in January and went through 2 rounds of chemo which still hasn't put her in remission. She's been in the hospital for 2 1/2 months, went home for 2 days and was re-admitted. The doctors are going to try different drugs THIS time since the same drugs they used for the 2 rounds didn't work.

I have researched AML for 2 months to try to find answers because doctors are NOT forthcoming. It is so frustrating to not know why she got this dreaded disease but the research helps a little.

What I wanted to find out is can CML become AML? I think I read the other night that if the blasts become more than 30%, then it is acute. Is it possible she could've had CML for years and never knew? She complained of not feeling right but blood tests showed nothing abnormal. A doctor told me leukemia can hide in the bone marrow and not show up in the blood tests till a later time.

Thank you for your help.

LIBlondie45

 
Old 03-29-2004, 10:45 PM   #12
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heatherdarbs HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

Quote:
Originally Posted by LIBLONDIE45
My gf was diagnosed with AML in January and went through 2 rounds of chemo which still hasn't put her in remission. She's been in the hospital for 2 1/2 months, went home for 2 days and was re-admitted. The doctors are going to try different drugs THIS time since the same drugs they used for the 2 rounds didn't work.

I have researched AML for 2 months to try to find answers because doctors are NOT forthcoming. It is so frustrating to not know why she got this dreaded disease but the research helps a little.

What I wanted to find out is can CML become AML? I think I read the other night that if the blasts become more than 30%, then it is acute. Is it possible she could've had CML for years and never knew? She complained of not feeling right but blood tests showed nothing abnormal. A doctor told me leukemia can hide in the bone marrow and not show up in the blood tests till a later time.

Thank you for your help.

LIBlondie45

Hmmmm...that's a good question. I've never heard or read of that, so I can't say for sure. Is this something you asked the doctors and they were just ambiguous? When my x-bf was first diagnosed, he waited until the last minute to see a doctor, which is why he almost died. But he was in the hospital for 6 months the first round. I'll try to recall some of what I researched, but I think that I've forgotten some of it since it is no longer part of my life. From what I've read, she's lucky to have caught it in time for treatment....good luck and stick by her no matter what.

 
Old 03-31-2004, 12:05 AM   #13
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amlgirl2 HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

When CML is in "blast crisis" it resembles AML, but remains a separate form of the disease. Gleevac can control the disease and the only true cure is a bone marrow transplant. Most cases of CML are associated with the Philadeplphia chromosome. I haven't heard of this mutation showing up in any other form of leukemia except for some VERY RARE cases of childhood ALL.

Not sure what chemo drugs your girlfriend has already had, but if the usual first drugs fail (cytarabine with daunocrucibin usually) doctors often try a chemotherapy called Molotarg. Also, not too often, some AML protcols will have vincristine, predisone, and even other drugs added into the mix. With AML, doctors will do a bone marrow transplant, even if the disease isn't in remission at the time the preparative therapy is started and there are patients who have had remissions following this procedure.

 
Old 04-01-2004, 07:30 PM   #14
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silverjewel HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

My husband is in remission from AML following a BMT. His transplant was in June 2003. He has been battling this since Dec. 2001. He has had all the chemos listed by amlgirl2. 3 times they give him a less than 15% chance of pulling through. The last time, after the BMT, the leukemia came back, they sent us home with hospice. After discontinuing his anti-rejection medication, his new bone marrow (from an unknown donor)(10 out of 10 match) kicked in and attacked the leukemia, also attacking his liver, of course. But they got the graph vs. host (cause of the attack on his body) under control. Today he had to go to Duke, our second home, to have his lungs scoped. He has some kind of infection. He also has sores in his mouth. But since coming home in Oct. has gained 40 lbs. and can stay out of the bed all day. I can actually try to find a job after being his caregiver since February. Everything is affected by this disease but don't give up and tell those doctors their percentages are for those that don't make it. Some of us have to pull through. I decide that was going to be us. So far we are lucky. We must have love and hope, and treat everyday special by living it to our fullest. Our lives will be as long as it's supposed to be. I just have to keep reminding myself that. I pray everyday they find a cure. I have lost several friends at the bone marrow clinic and hospital unit. It's hard to accept. My husband is 43. never been sick. until now. I will say a special prayer tonight.

 
Old 04-06-2004, 09:04 AM   #15
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chitrick HB User
Re: My boyfriend died 3 days after getting the diagnose of leukemia

I'm not sure if anybody has answered your initial question about the white cell counts. 37 (actually 37,000) is very high; and should have triggered a warning to the doctors, to invistigate further. A bone marrow biopsy would have been in order, to confirm leukemia. Not sure what caused the bleeding in your boyfriend's head...or even if it is related to the leukemia (possibly low or no platelets). But chances are, if they had begun aggressive treatment in December...they might have been able to prevent such a rapid spread of the cancer. If his counts were almost 300 (thousand) at the time of diagnosis, then they could have been nearing a million by the time of his death. That would have totally wiped out any room for any healthy cells (red, white or platelets) to survive in the blood.

My wife has leukemia. And I've learned a ton of information over time. Doctors hate it when we (lay persons) research on our own. But they don't always have the time or desire to share as much information as we feel the need to know.

You may want to locate and join a group, geared at supporting the loved ones of cancer victims. Check with your local hospitals and churches.

 
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