How long does it take leukemia to show up in bloodwork? - Mothering Forums

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#1 of 10 Old 10-20-2011, 03:36 PM - Thread Starter
 
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Please indulge me. My daughter has a genetic disorder that predisposes her to cancer (about 30-40% of kids with her disorder get cancer, usually leukemia or lymphoma). Well, her last CBC was only about a month ago and it was normal, For almost two months now she has been running hot (around 99-100 degrees tympanic, up from her normal of 97-98) and complaining of a belly ache off and on. For the past week her teachers and I have been noticing that she is more tired than usual, and yesterday and today she has been complaining of leg pain. 

 

No petechiae, no abnormal bruising, no swollen nodes that I can tell-and like I said her CBC was normal. Should I be concerned? I think she is probably fine but I get so nervous! 

 

IF she has developed leukemia (and I really don't think she has!!!!!!) how long would it take to show up in her bloodwork? Do you usually show changes in your CBC before the onset of symptoms? I would imagine you would, but I just don't know.

 

 

eta- if your child had/had cancer, what were the presenting symptoms? How did you get your diagnosis?


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#2 of 10 Old 10-21-2011, 04:52 AM
 
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I have no idea but just wondering if you've taken her to see a pediatric oncologist.  It may be a good person to have on your daughter's medical team.  She/He can tell you what to watch for, stay on top of things for you.  Just a thought.  

 

Maybe it's just growing pains?   My son gets those from time to time.  

 

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#3 of 10 Old 10-21-2011, 06:33 AM - Thread Starter
 
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We see an oncologist regularly. I just feel like I am always over analyzing dd's symptoms, and I never know if I should be concerned or not. I mean, her symptoms are really vague and if it was cancer she would be way sicker, right????????


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#4 of 10 Old 10-21-2011, 08:07 AM
 
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Oh Mamma, I would think so. I know it's hard not to obsess.  I have a rare disease that can turn to cancer.  It's incredibly rare for that to happen but for the first year after my diagnoses, I had myself dead and buried.  I realized that I could also walk in front of a bus tomorrow and finally was able to put it behind me.  That being said, my risks are much lower and if it were my child.... I don't know what I'd do.

 

In this case, because she's not her usual self, give the oncologist a call and see what they say.

 

 


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#5 of 10 Old 10-21-2011, 03:29 PM
 
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My DS is a little more than a year out from his leukemia diagnosis. It was something I also feared because he has Ds.

 

I think if you are worried, you should go get her blood work done.

 

DS was a perfectly healthy little boy one week, the next week we were in the hospital. I felt so terrible guilty that I missed something, but talking with other parents and their journey, I learned that the type of leukemia presents very quickly.

 

Here is what I saw that I wondered about. Over the preceding summer he had 2 separate instances of 24 hour mystery fevers that seemed to coincide with unusually swollen mosquito bites. He also seemed a little weak during that time, and did not want to walk too much. I dismissed these things at the time, but they did nag in the back of my head a little. I though maybe he was fighting a mosquito born virus, and he has low tone, was new to walking, and very cautious, so not wanting to walk was a reaction to not feeling great.

 

The week before he was diagnosed he was irritable at night, no fever. I thought maybe he was getting an ear infection (neither one of my kids had ever had one before.) We treated him for the ear infection with herbal remedies, he rallied and seemed to recover in 24 hours. During the 2 or 3 days we suspected an ear infection, one evening he alarmed me by looking a little pale, I thought he was going to throw up. It passed within a minute or two. He had a low grade fever that night. I think that was Wednesday night.

 

We do not usually go to the doc for illness, unless something unusual happens, I remember looking up the doc's weekend hours Friday night thinking I might need to take him in, just because instinct was pinging at me.

 

Saturday he was really good. Then that night he got a fever again, did not want to walk, was very clingy.

 

Sunday morning I opened my eyes, DS was sleeping in his bed right next to me, and with out being fully awake I sprung out of bed, shouting to DH we were going in to the doc, got dressed and went. I have no idea what triggered the panic feeling, I just reacted.

 

While we sat in the docs office I held DS, so I was not watching his face. After about 45 minutes of waiting, the nurse came out to call in a patient, looked over at DS and FREAKED OUT! Evidently he was very pale. They rushed us in and did a toe prick to check his iron, it was a 3, and I just knew. We were in an ambulance and on the way to the children's hospital 5 minutes later.

 

Once at the hospital, DS was given blood, a smear was done, and we knew it was most likely leukemia. He started treatment that day, was in remission 30 days later, and you would never know anything was wrong to look at him today. He still has 2 years to go with chemo, but the fear, for the most part, has left me and i feel confident he will live a long and healthy life.

 

I won't sugar coat, that 30 days was hell. After a few days in hospital, he needed to spend a week in PICU, sedated, on a resporator, being treated for congestive heart failure (due to his body compensating for the lack of blood he was making). He had several procedures in the OR, 2 bone marrow draws, his port being placed. He had several blood transfusions. The first 30 days of chemo is intense, the steroids in particular (I understand that all kids with cancer go through a similar 30 days.) He was in pain from the leukemia, it crowds the bone marrow, so he was on some strong drugs to manage that.

 

Looking back, a lot of the hell was the fear he would die. The fear of all the new procedures. Just the reality of processing what was happening. I was terrified of all of the drugs. He was unconscious for the worst of it (thank goodness for small favors.) Each individual procedure was in itself, not too bad. He was sedated for the big stuff, I don't think he even knew they happened. He was prenumbed for the very few needle pricks, and the morphine controlled his pain very well. He tolerated the chemo well, except for the steroids, which make everyone that takes them cranky and puffy looking.

 

I think you should follow your instincts. If you suspect something is off, go get it checked out. If you need to talk some more, feel free to message me, or we can talk here.

 

I am wishing you the best of luck that everything is fine, and you never have to go through this with your daughter. Cancer sucks. But know this, in the last 5 years, things have advanced in amazing ways, DS was given a 97% chance of survival, something that just was not possible in the recent past.


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#6 of 10 Old 10-21-2011, 11:23 PM
 
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I was a medical lab technologist and worked in hematology, the department that does CBCs. When I worked we did the blood smear that tells white blood cells apart on a microscope. Now it is done by a machine. I think an experienced technologist would pick up changes before the newer machines would. My son has recently gone through training in a lab with the new CBC machines and I will ask him and I will post again if he thinks I am wrong. WBC counts increase or decrease change quickly. Abnormal cells can take longer to show up. Lymphocytes are WBCs.  

 

My 3 children, grandson and I all have a disease called common variable immune deficiency (CVID). My children and I were diagnosed 23 years ago and my grandson was diagnosed 2 years ago when he was around 12 months. It's a rare disease and when we were diagnosed it didn't even have a name. I don't think it started being called CVID until about 10 years ago. I am one of the oldest survivers. I have been getting gamma globulin IVs every 3 weeks for 23 years to help prevent infections. We now know the 20 year survival rate is 64%.

 

Because doctors have gotten better at treating infections in people with CVID more people with CVID are dying from lymphoma than from infections. We are also at risk for stomach and other cancers.

 

Does that mean out of the 5 of us in our family that have it 64% should be dead? Am I going to get lymphoma? I had cervical cancer. I've had a lot of problems with auto-immune disorders. My kids were sick a lot until they hit their teens. They will probably start getting very sick around 30. I was 32 when I got sick. My oldest is 32. Will my grandson survive to be an adult?

 

You can drive yourself crazy with all these questions. Just because your daughter is at risk for lymphoma doesn't mean she is going to get it. I wouldn't send her to school. She is at risk of getting sick not feeling well and with a low grade fever. Most schools won't let kids go to school with fevers. My kids had fevers most of the time and we had to homeschool.


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#7 of 10 Old 10-23-2011, 06:31 AM - Thread Starter
 
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Quote:
Originally Posted by foreverinbluejeans View Post

I was a medical lab technologist and worked in hematology, the department that does CBCs. When I worked we did the blood smear that tells white blood cells apart on a microscope. Now it is done by a machine. I think an experienced technologist would pick up changes before the newer machines would. My son has recently gone through training in a lab with the new CBC machines and I will ask him and I will post again if he thinks I am wrong. WBC counts increase or decrease change quickly. Abnormal cells can take longer to show up. Lymphocytes are WBCs.  

 

My 3 children, grandson and I all have a disease called common variable immune deficiency (CVID). My children and I were diagnosed 23 years ago and my grandson was diagnosed 2 years ago when he was around 12 months. It's a rare disease and when we were diagnosed it didn't even have a name. I don't think it started being called CVID until about 10 years ago. I am one of the oldest survivers. I have been getting gamma globulin IVs every 3 weeks for 23 years to help prevent infections. We now know the 20 year survival rate is 64%.

 

Because doctors have gotten better at treating infections in people with CVID more people with CVID are dying from lymphoma than from infections. We are also at risk for stomach and other cancers.

 

Does that mean out of the 5 of us in our family that have it 64% should be dead? Am I going to get lymphoma? I had cervical cancer. I've had a lot of problems with auto-immune disorders. My kids were sick a lot until they hit their teens. They will probably start getting very sick around 30. I was 32 when I got sick. My oldest is 32. Will my grandson survive to be an adult?

 

You can drive yourself crazy with all these questions. Just because your daughter is at risk for lymphoma doesn't mean she is going to get it. I wouldn't send her to school. She is at risk of getting sick not feeling well and with a low grade fever. Most schools won't let kids go to school with fevers. My kids had fevers most of the time and we had to homeschool.

She doesn't technically have a fever- it is generally just about 99.2 or so. It is only concerning because her baseline was 97-98 until a month or so ago. I try to think of it like she has a 70% chance of not getting leukemia, instead of the other way around! My daughter gets IVIG as well. She has a very serious immune deficiency. I absolutely will not keep her home from school though. Her IVIG keeps her very healthy, and I am a huge believer in out of home schooling, if you have a positive school environment. I would rather her get sick than miss out on the social interaction. But, I know many disagree with me on that.

 

Thanks for the input, everyone. AbbieB, your story is very scary. Thank you for sharing. Now I am freaking out because dd told me not to rub her shoulder ( I was checking her lymph nodes- I am telling you, I am going crazy over here!!)because she has a bug bite! 


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#8 of 10 Old 10-23-2011, 02:22 PM
 
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#9 of 10 Old 10-24-2011, 04:50 AM
 
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Just a strange stab in the dark.  You don't say how old your daughter is but if she's about the age to start puberty, that can cause a temp shift.  Just something that popped into my head.  Again, if your Mommy sense is tingling - please go get it checked out.  Better it be nothing and you "waste" a doctor's appointment.


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#10 of 10 Old 10-24-2011, 06:54 AM - Thread Starter
 
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She's only five, but I do think the temp might just be her new normal. At least I hope so! 


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