Can anyone answer me honestly?

I want answers

My really good friend just told me, when he was around 14 he found out he had leukemia.... He did chemo for a year or more. And after they needed to do a BMT. His brother was a perfect match. As i said this was all when he was 14-16 years old. Now he is 18 and he is fine. The BMT was successful. But I'm just wondering if everything was successful, what's his life expentancy? This is what I read on google, and it scared me so much
"Patients who have survived for at least 5 years after hematopoietic cell transplantation without recurrence of the original disease have a high probability of surviving for an additional 15 years, but life expectancy is not fully restored. Further effort is needed to reduce the burden of disease and treatment-related complications in this population"

Does THIS MEAN PEOPLE CAN ONLY LIVE 20 OR LESS YEARS AFTER A BMT???? PLEASE SOMEONE ANSWER ME, WITH A TRUTH.

mortalcleo

#1 rule. Don't read into all
#1 rule. Don't read into all those statistics online.

BMT have a huge success rate. Your good friend will be just fine!

nempark

# 2 - 20 years survivorship is a blessing
20 years survivorship is a blessing. Enjoy the present and cross that bridge when you reach there. Don't get there before you are there. ONLY GOD KNOWS WHAT OUR LIFE EXPENTANCY IS.

mchurch

CLL chemo started
I was originally DXed with esophageal cancer in Mar.09 and had a trans-hiatal esophagectomy May 9. About this same time, I was DXed with CLL. The surgical removal found an isolated 5mm adenocarcinoma near the esophoageal stricture with the stomach. We got it very early and there was no evidence of metastasis.
Outside of learning to deal with dumping syndrome I came out of that experience as good as it gets. Since then they've been tracking the CLL and in the last six months started having enlarged lymph nodes that were finally giving some abdominal cramping. It was decided to start a 6-month regimen with Rituximab, Fludarabine and Cyclophosphamide, 3 days per week, one week per month for six months. My first treatment was last week and the improvement has been dramatic, I'm feeling very good, a little tired, like I was advised I would feel from the after effects of the chemo.
When all this started, I remember being obsessed with the,"How long do I have?" question. That's worn off to,"Well, I feel better today than yesterday." That seems to be a better way to look at it. If I was told I had 10 years to live what would I do? Have a great time for 9 years then retreat for the last year? 8 then hide for 2? Live as good as I can till I'm done? Be bitter? Resigned? Depressed? The truth is there will be good days and bad days, kind of like what a healthy life is like.

Canada10

mchurch said:

CLL chemo started
I was originally DXed with esophageal cancer in Mar.09 and had a trans-hiatal esophagectomy May 9. About this same time, I was DXed with CLL. The surgical removal found an isolated 5mm adenocarcinoma near the esophoageal stricture with the stomach. We got it very early and there was no evidence of metastasis.
Outside of learning to deal with dumping syndrome I came out of that experience as good as it gets. Since then they've been tracking the CLL and in the last six months started having enlarged lymph nodes that were finally giving some abdominal cramping. It was decided to start a 6-month regimen with Rituximab, Fludarabine and Cyclophosphamide, 3 days per week, one week per month for six months. My first treatment was last week and the improvement has been dramatic, I'm feeling very good, a little tired, like I was advised I would feel from the after effects of the chemo.
When all this started, I remember being obsessed with the,"How long do I have?" question. That's worn off to,"Well, I feel better today than yesterday." That seems to be a better way to look at it. If I was told I had 10 years to live what would I do? Have a great time for 9 years then retreat for the last year? 8 then hide for 2? Live as good as I can till I'm done? Be bitter? Resigned? Depressed? The truth is there will be good days and bad days, kind of like what a healthy life is like.

Like your attitude! Agree
Like your attitude! Agree -as long as you continue to feel good who cares about " how many years" enjoy your life now!

Justdebcasazza

mchurch said:

CLL chemo started
I was originally DXed with esophageal cancer in Mar.09 and had a trans-hiatal esophagectomy May 9. About this same time, I was DXed with CLL. The surgical removal found an isolated 5mm adenocarcinoma near the esophoageal stricture with the stomach. We got it very early and there was no evidence of metastasis.
Outside of learning to deal with dumping syndrome I came out of that experience as good as it gets. Since then they've been tracking the CLL and in the last six months started having enlarged lymph nodes that were finally giving some abdominal cramping. It was decided to start a 6-month regimen with Rituximab, Fludarabine and Cyclophosphamide, 3 days per week, one week per month for six months. My first treatment was last week and the improvement has been dramatic, I'm feeling very good, a little tired, like I was advised I would feel from the after effects of the chemo.
When all this started, I remember being obsessed with the,"How long do I have?" question. That's worn off to,"Well, I feel better today than yesterday." That seems to be a better way to look at it. If I was told I had 10 years to live what would I do? Have a great time for 9 years then retreat for the last year? 8 then hide for 2? Live as good as I can till I'm done? Be bitter? Resigned? Depressed? The truth is there will be good days and bad days, kind of like what a healthy life is like.

Attitude is the biggest drug to survive longer

For many years my husband has had extremly high liver counts, Biopsy after biopsy, never showed anything. Now we are talking 20 years plus.

He went in jan 2012 for a biopsy, and the nurse did the routene blood work and questioned it, It turned out he had CLL. So off to the cancer clinic

we went. Eye opening experience!!  His blood work and cat scan showed scaring in the liver, "still no answer for that" But the rest of the blood work 

showed 1st stage CLL, So with the big slap in the gut with the Big C, They told him, if he were to choose a cancer, this would be it, since it is one of the

slowest progresive cancers, he can be in the watch and wait for 10 to 20 years.  His age at the time was 56!

 

Since then he has made many visits to the oncoligist for blood work, and he has stayed in the norm untill Nov 2012. His platelettes were down to 

52, So off for a Bone Marrow draw, which tells him his Bone Marrow is 80% cancer!  WOW, in less then a year from stage 1 to 4, Talk about some scarry 

stuff going on inside a persons head. 

 

His response was just another hurdle in life, "I will be ok" His laughter is contagious. On Jan 8th 2013, he went in for the long first day of Chemo "FCR"

7 hrs in the chemo room watching so many with so many different types of cancer, from every walk of life. He read almost a whole book, sat did not complain

joked around with a few other patients, and felt totally fine...  "I was more stressed" the next 2 days he went in for 2 more infusions, that lasted 1  1/2 hrs.

The 3rd day they removed the port, and sent him home. He will start again in 28 days on going for 6 months....  So far so good. 

 

I know we have a long haul in front of us, But keep up the laughs find a silver lining to laugh about. which can be anything silly. I have HUGE hopes of beating this nasty

Scarry monster that is TRYING to run our lifes!!! It wont happen... My husband has just excepted this as a hurdle to make him stronger, he ask no questions,

does not complain, and continues to think of everyone around him... 

 

Just a foot note, He feels fine, and he goes to work daily, And this morning went out and shoveled the side walk of all the snow we just got, So smile be happy and think QUALITY!!!

RogerB40uk

Justdebcasazza said:

Attitude is the biggest drug to survive longer

For many years my husband has had extremly high liver counts, Biopsy after biopsy, never showed anything. Now we are talking 20 years plus.

He went in jan 2012 for a biopsy, and the nurse did the routene blood work and questioned it, It turned out he had CLL. So off to the cancer clinic

we went. Eye opening experience!!  His blood work and cat scan showed scaring in the liver, "still no answer for that" But the rest of the blood work 

showed 1st stage CLL, So with the big slap in the gut with the Big C, They told him, if he were to choose a cancer, this would be it, since it is one of the

slowest progresive cancers, he can be in the watch and wait for 10 to 20 years.  His age at the time was 56!

 

Since then he has made many visits to the oncoligist for blood work, and he has stayed in the norm untill Nov 2012. His platelettes were down to 

52, So off for a Bone Marrow draw, which tells him his Bone Marrow is 80% cancer!  WOW, in less then a year from stage 1 to 4, Talk about some scarry 

stuff going on inside a persons head. 

 

His response was just another hurdle in life, "I will be ok" His laughter is contagious. On Jan 8th 2013, he went in for the long first day of Chemo "FCR"

7 hrs in the chemo room watching so many with so many different types of cancer, from every walk of life. He read almost a whole book, sat did not complain

joked around with a few other patients, and felt totally fine...  "I was more stressed" the next 2 days he went in for 2 more infusions, that lasted 1  1/2 hrs.

The 3rd day they removed the port, and sent him home. He will start again in 28 days on going for 6 months....  So far so good. 

 

I know we have a long haul in front of us, But keep up the laughs find a silver lining to laugh about. which can be anything silly. I have HUGE hopes of beating this nasty

Scarry monster that is TRYING to run our lifes!!! It wont happen... My husband has just excepted this as a hurdle to make him stronger, he ask no questions,

does not complain, and continues to think of everyone around him... 

 

Just a foot note, He feels fine, and he goes to work daily, And this morning went out and shoveled the side walk of all the snow we just got, So smile be happy and think QUALITY!!!

Honestly!

As some have said, NO-ONE, however 'expert', can precisely predict one's life-span.

I recommend that you read the aricle by Stephen Jay Gould, here:

http://cancerguide.org/median_not_msg.html

At 41, he was told his condition had a 'median life expectancy' of  EIGHT MONTHS, and he lived in fact, a further TWENTY YEARS!

Be well!

Roger

lynnyb323

Internet and misinformation

I don't think so. It's been 11 years since I have had a Stem cell transplant and I feel wonderful. My doctor told me that I should live a very long and healthy life. As a matter of fact, he is planning my "over the hill" birthday party. 

The thing is, the internet will only terrify you. Nobody can predict when someones life will end. I think the information you have been given is just an average that isn't taking other factors into the equation. I have a friend that is currently 40 that had a bone marrow transplant 32 years ago, he is also doing great. One of my nurses was also diagnosed with ALL when she was 13, she is now 68 so there are definitely survivors out there. 

Enjoy each day as if it's your last. Any moment of any day your life can change forever, don't look at the bad things, enjoy the fact that your friend is here now and stay strong. 

tscadron

lynnyb323 said:

Internet and misinformation

I don't think so. It's been 11 years since I have had a Stem cell transplant and I feel wonderful. My doctor told me that I should live a very long and healthy life. As a matter of fact, he is planning my "over the hill" birthday party. 

The thing is, the internet will only terrify you. Nobody can predict when someones life will end. I think the information you have been given is just an average that isn't taking other factors into the equation. I have a friend that is currently 40 that had a bone marrow transplant 32 years ago, he is also doing great. One of my nurses was also diagnosed with ALL when she was 13, she is now 68 so there are definitely survivors out there. 

Enjoy each day as if it's your last. Any moment of any day your life can change forever, don't look at the bad things, enjoy the fact that your friend is here now and stay strong. 

Agreed!

That's excellent advice, lynnb323.  Nobody lives forever, and you only torture yourself pondering how much time you have left.  My uncle has had CLL since 1998, and has never needed treatment.  His wife was cancer-free and in amazing shape -- teaching yoga, in fact.  And she died suddenly of a brain aneurysm 2 years ago.  You just don't know.  I myself was diagnosed with CLL in May 2013 and after going through a one-month weepy phase feeling sorry for myself, I realized I'm exactly the same person I was before the diagnosis.  I don't know if or when my CLL will become symptomatic, but I'm not going to spend this healthy period worrying about it. 

KickedCancer

The truth

I want answers,

You asked for the truth, well here it is:

1) Nobody knows how long they will live. It doesn't matter how sick a person is or was, if God wants him/her to live, they will! This is not just a nice sentiment, I truly believe so. If one believes that everything is orchestrated by God and that whatever will happen is with our ultimate good in mind, one will feel much calmer and less anxious. Maybe try and talk to a spiritual mentor or someone whose views you respect and relate to.

2) The Internet is mostly useful, but lots of what you read online is 100% bogus. Don't let it keep you up at night.

lynnyb323

tscadron said:

Agreed!

That's excellent advice, lynnb323.  Nobody lives forever, and you only torture yourself pondering how much time you have left.  My uncle has had CLL since 1998, and has never needed treatment.  His wife was cancer-free and in amazing shape -- teaching yoga, in fact.  And she died suddenly of a brain aneurysm 2 years ago.  You just don't know.  I myself was diagnosed with CLL in May 2013 and after going through a one-month weepy phase feeling sorry for myself, I realized I'm exactly the same person I was before the diagnosis.  I don't know if or when my CLL will become symptomatic, but I'm not going to spend this healthy period worrying about it. 

:-)

I love your positive attitude and mindset tscadron!! You have this way about you that obviously puts others in a good mood. I have never met you and up until this point never had a discussion with you but there is something about you that just makes me smile. I hope all goes well with the CLL treatment. I will certainly be keeping you in my prayers. 

God Bless

lynnyb323

KickedCancer said:

The truth

I want answers,

You asked for the truth, well here it is:

1) Nobody knows how long they will live. It doesn't matter how sick a person is or was, if God wants him/her to live, they will! This is not just a nice sentiment, I truly believe so. If one believes that everything is orchestrated by God and that whatever will happen is with our ultimate good in mind, one will feel much calmer and less anxious. Maybe try and talk to a spiritual mentor or someone whose views you respect and relate to.

2) The Internet is mostly useful, but lots of what you read online is 100% bogus. Don't let it keep you up at night.

MmmHmm

Well said KickedCancer! 

My motto is live each day as if it were your last. Don't dwell on the bad just be happy about the good. :-)