Leukemia

[PeacefulChaos]

I have some questions from anyone who knows more than I.

 

 

A very close friend (practically family) found out a couple of years ago that she has leukemia.  At the time we were all shocked, as it was picked up at a very random time (she went into a walk-in clinic for a cold-like ailment that had her feeling down and they found it on a routine blood test).  She followed up with her regular doctor, who confirmed the diagnosis.

 

For a few months, she saw some specialists when they visited town.  They decided not to do anything, as her levels of ____ (I'm sorry, I do not remember what it is that they detect it by.... white blood cells?  Something else?) were high but just sort of sitting and fluctuating, not getting worse, and she was not feeling any different than she ever had.

 

She stopped going to the doctor for it because she doesn't have insurance and she was just not able to pay anymore - after all, if she goes back every month forever and it stays like this, they'll just nickel and dime her to death - those are her words.  

 

 

So I'm just sort of... surprised at the whole thing.  She's still fine.  She had heart surgery (completely unrelated) last year.  And so part of me is like, was it a misdiagnosis?  But then, no, because it was confirmed over and over, even with the specialists.  

 

I'm not trying to be ignorant here, but I honestly did not know this could happen.  I guess I always thought that if someone found out they had Leukemia, there was a timeline on it, or there was a severity to it, and they needed to do something about it.  But there was no treatment recommended, just to wait and see.

 

The specialists said that most people who were where she was when she first found out were likely to have 8 more years.  I don't know what that means.  Did those people also not get treatment?  Did they get worse and then get treatment that allowed them to live 8 years?  Did they get worse and not get treatment and last 8 years?  Is that the far end or the closer end?  

 

I think about 8 years and.... Link was 10 then.  This person is... so important to him.  I can't really imagine it.  A life without her in it, in as little as 8 years?  Or as long as 8 years?  (Interrupting myself here to say that Link - and the other kids - do not know about this diagnosis, as this person met with DH and I and told us but asked that the kids not find out.  At the same time, she does talk about it sometimes when the kids are around, but maybe she thinks they don't get it?  From what I can tell, they haven't caught on.)

 

I'm just kind of baffled about all this.  I'm not trying to pry and it isn't just about her, this is really just about me not understanding a disease the way I thought I did.  

 

Does anyone have any insight?  How does it work?  Has anyone experienced anything like this before?

Edited February 27, 2016 by PeacefulChaos

[Frances]

She likely has a form of chronic, rather than acute, leukemia. I'm no medical expert, but my dad did pass away from one of the forms of chronic leukemia. If I recall correctly, he was just monitored for about the first five years. During the last five years, he went through low dose chemo a couple of times and had his spleen removed. His doctor's strategy was always to use the lowest level treatment that worked to bring it back under control, so as to save more serious treatments for later, and mitigate side effects. Generally speaking, I don't think people are cured of chronic leukemia, although perhaps this varies by type and age at onset.

[PeacefulChaos]

JSYK, I'm 'liking' the posts not because the content is necessarily 'likable', but just as a 'ahh I see'.  I just like showing that I've read the replies but don't always reply.  

 

Didn't want anyone to feel like I was 'liking' their posts about leukemia... that could be weird.  

[Roadrunner]

I don't understand the differences between thoes, but my relative went through almost 2 years of chemo, which completely cured her disease. She had since given birth. It has been 15 years disease free.

[catz]

Sounds like the chronic form of the disease to me too. A freinds mother and my aunt had forms of chronic leukemia and were in holding patterns for years.

[JudoMom]

As far as the 8 years go, could it have been "8 years until treatment is needed"?

[alisoncooks]

Yes, chronic.  My DH met many people when he was going through his cancer treatments last year.  One was a lady who had cancer, but it was so slow growing (chronic) that she only came in for a low-dose treatment every so often (months/years, I can't remember).  But it blew our mind! (DH's cancer likely went from nothing to stage 4 with complications --pleural effusion/partially collapsed lung/large mass near heart-- in 6 months, the doctor said.)

[magnificent_baby]

This sounds similar to my mom's leukemia. She has Chronic Lymphocytic. It was found randomly through her blood work (her white count was really high) without symptoms. She was sent to a specialist immediately and was confirmed through a bone marrow biopsy. She will never need treatment until she becomes symptomatic (rapid weight loss, night sweats, enlarged lymph nodes, fevers, etc.). Her doctor explained that 30% plus of his patients end up dying from other causes (old age, etc) than from the cancer. That being said she had checkups with the specialist (very thorough physical exam and blood work) every 3 months for over a year and now only checks in with him every 6 months since her white count has been slowly going down and still no symptoms. She goes to a well known specialist who has written textbooks on this disease so we are very, very comfortable with his opinion. It was a true shock when she was diagnosed but now I almost forget she has it because she hasn't needed to do anything so far other than a lot of testing. 

 

I would highly suggest she try to keep up on appointments. While you CAN sit around on without treatment on this type, it shouldn't be ignored because she should be getting frequent exams/labs. Perhaps even getting a second opinion or establishing care at a university medical center just to be sure not treating is appropriate in her case. If my mom had not have been seen by a true expert in this case, we would have for sure gotten a second opinion to ease our minds. I would also try to help her find insurance or whatever assistance she can, if it ever came time for her to be treated, you wouldn't want to delay due to paperwork/insurance. If you are a blood relative, it's important to know what type she has as it raises the chances of her children (very slightly, I believe) of having leukemia as well someday. 

 

Good luck!!

[Laurie4b]

Yikes. She has leukemia and no medical insurance? If she needs medical care, she will pay out of pocket for any treatment until the new open enrollment period. I think a lot of people don't understand that while you can buy insurance with pre-existing conditions in the open enrollment period, that you are stuck if you incur medical bills before that time. 

[AmandaVT]

My friend's mom has a form of  Lymphoma (I can't remember if it's Hodgkins or Non Hodgkins)- She's had it for a long time. I've known my friend for 8 years and when we met, her mom had already been diagnosed a number of years prior. So maybe 15 years? They basically monitor it. I think she's had maybe one round of chemo that I know of. She's still healthy today and the disease doesn't affect her day to day life much, if at all.

[umsami]

My Dad has CLL.  For the first two years, it was watchful waiting.  Basically, they watched his white blood cell count and see how it changed.  He didn't have his first round of chemo until his WBCs reached 100k and he was having other issues.   Since then, it's been about five years of on and off chemo and other things.  New drugs have come out recently that are very expensive, yet very effective. 

 

She should not go without insurance, and sadly I think she missed the open enrollment period for the health insurance exchanges.   She is unlikely to remain symptom free long-term and one of the drugs my Dad was on cost 100k. 

[Lynnae]

My mom was diagnosed with CLL when she was in her 50s, which is pretty young for that kind of leukemia, from what I understand. At first they said living 10 years would be a good outcome. 

 

She had to do oral chemo every couple of years at first. Eventually she had to do a round of the drip kind. That was miserable, but apparently it did its job, because it's been several years, and her doctors are now calling her cured. I've heard that's pretty rare. She just celebrated her 70th birthday.

 

While your friend may not need treatment yet, she definitely needs to get insurance. Because when the white blood cell count starts going up, it can go up in a hurry, and she'll get some bothersome physical symptoms then, and she'll probably need some chemo to knock the leukemia down a little.

 

As far as symptoms, it's been a while, but I remember my mom had frequent bloody noses and bloodshot eyes when she was first diagnosed, and those symptoms would usually return right about the time she needed more chemo. I think her WBC was over 100K when she was first diagnosed at a routine doctor's visit.

[Debbi in Texas]

Dh has CLL and it was found when he was 36. He is 54 now. As others have said, at first all they did was watch his numbers. Then he went on cyclosporine for quite some time. Several years after that, he had chemo. He goes in for blood work regularly, like once a month. Sees the doc every three months.

 

I can't imagine going through this without insurance. It has been expensive enough With insurance.

[Debbi in Texas]

I meant to say that when he was diagnosed the doctor told him that most people who get CLL are older, live a long time, then die from something else. They are seeing more younger people with it now.

[Katy]

There's also a sort of pre-leukemia diagnosis that some people describe as leukemia basically because it's easier than going through "I have abnormal blood cells but it's not malignant yet," every time. I can't recall the name of it.

Edited July 22, 2016 by Katy

[PeacefulChaos]

This is all very helpful.  It definitely helps me see that probably she has the chronic form, or even the pre-leukemia type that Katy is describing above.  

 

I do think that she still sees her regular doctor every once in awhile, and I'm hoping that he keeps tabs on her white blood cell count so that he can tell her if it's getting any worse.  The specialists she saw are from a great University Cancer Center near us, they come down to our town about twice a month to see patients here for a day, and then it's only about 1.5 hours away.  I've known many people to go through cancer treatments there and have always heard wonderful things, so I think they're well-respected in the field.  

 

Unfortunately, I'm guessing she just can't afford insurance, either.  (We're the same, our kids have it but DH and I don't.)  I don't know exactly or for sure... she may have it now, but I remember her saying one time that she's never had it in her life (she's in her early 60s).  And just based on what I know and see, I don't *think* she has it still, but I could be wrong.  

[LMV]

There's also a sort of pre-leukemia diagnosis that some people describe as leukemia basically because it's easier than going through "I have abnormal blood cells but it's not malignant yet," every time. I can't recall the name of it, but I had a frequently hospitalized patient with it at one particular hospital I worked at.  He also had genetic immunity issues and HIV, so he was admitted all the time with various infections.

 

Myelodysplastic Syndrome is what you're thinking of.  Some variations can present with or progress to AML or CMML.

[idnib]

A friend of mine had this situation and passed away about 10 years after his diagnosis, in his late 40s. He seemed fine, except for low physical stamina, until a couple of weeks before he passed. Those were spent in the hospital, but even there he was lucid and social until a couple of days before his death.

 

He tried a couple of treatments (can't remember what they were) but they didn't change anything so after that he just lived with it.