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Enlarged spleen from CML

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I was diagnosed Feb 24 2017, I have an enlarged spleen and the doctor won't scan it. I am afraid it is hurting my other organs. Everytime I ask the doctor about it he says it's fine and isn't hurting anything else. How does he know this if he can't actually see it? I am worried

I was diagnosed on April 2016; I had a very enlarged spleen; not hurting or anything, but I could feel it myself pretty well. I had mistaken it for a swollen stomach, clever as I am...  

Doctor said it was just a symptom, removing it would not change anything in CML. Of course, among other things, the spleen size worried me.

Doctor ordered an abdomen ultrasound, but without any hurry; I think I did it a few weeks after diagnosis. I believe its purpose was not to check the spleen, but rather to make sure the other organs (the liver, mainly) were all right. Actually the radiologist said the result was good, because the splenomegalia (large spleen) was the only noticeable thing.

At any rate, after a few weeks of Sprycel the spleen returned to its normal size, and it's been normal since.

So I believe enlarged spleen by itself is not something to be worried about, especially if your doctor isn't worried. 

Hi Tasha,

An experienced doctor will be able to feel your spleen through pressing on your abdomen if the spleen is palpable past the rib cage (it was in my case). When your spleen gets really big, it will make your abdomen expand a bit - actually I wondered why I had a "fat" belly even though I was losing weight before I was diagnosed.

As your spleen gets larger before treatment it can press against your stomach. Sometimes patients with a large spleen will feel full after only a small amount of food, or get more acid reflux than they did before due to this.

However, this is all temporary. Once you are on treatment your spleen will reduce in size quite quickly. Your other organs are not in any danger - when the spleen has no more space to go your abdomen will expand to accommodate it but as I said, this will all reverse quite quickly. I wouldn't have any concerns with your doctors approach.

David.

Thank you! I feel less worried!!! Thank you

Thank you! I am on Sprycel now too so hopefully it will bring mine down aswell! Thank you! I'm not as worried now! How do you like Sprycel? The doc had me me 140mg, which really took down my white cells, but the side effects were unreal. I head such bad headaches and nausea I could not function. So now the doc has me cutting the pill in half and I can actually function now but still have lost of join and muscle pain and sometimes weird vision. I just hope it's working just as well with it being cut in half. I also hope my body will be able to handle the side effects when they start up in my dose, which will probably be soon!

I actually am at 140mg Sprycell, because CML was diagnosed in the accelerated phase, on April 2016.
I believe it was borderline chronic/accelerated, but of course doctors tend to err on the safe side.
I am 39, and was 38 at diagnosis, so quite young in CML terms.

The main problem was at beginning, because I had myelofibrosis; Sprycel hit hard and my WBC dived.
Luckily I made it through a few weeks without getting any bug, and the the bone marrow started working properly again.

I had headaches the first few weeks, and fatigue, but nothing too dramatic.
I take my pill at 13:00, and those symptoms hit me around 18... What I did was, well, taking a nap.
Also, my home made remedy, which was also approved by my doctor, was a coffee (espresso, writing from Italy) at 16:00. This did the trick of minimizing the headaches.
Eventually they headaches disappeared; now the only residual element is, some days, a minor sense of fatigue at 18:00, but this depends on my other activities.

Another issue is skin related. I always had a sensitive skin, Sprycel has amplified that. At the beginning I was covered with little pimples on the forehead, other times on the legs, etc.
Now I have a few extra pimples, like if I had too much chocolate, but nothing noticeable. Also, some itching issues, described in another thread.

The only severe side effect caused by Sprycel is pleural effusion, which hit me in December. It was classified as degree 1, which is the less severe.
We are keeping it at bay with furosemide and low dosage predisone; unluckily when I stopped the prednisone the pleural effusion came back.
I guess the Sprycell dosage will be reduced to 100mg if the BCR-ABL count allows it.

The good news is Sprycell so far has done wonders so far for my PCR results; I almost reached MMR in 6 months, and got to 0.09 at 9 months, so it's really working well.
I'll keep my fingers crossed for my anniversary PCR. I hope we find a balance of dosage to keep pleural effusion at bay without extra meds.

Also, at the moment I lead a completely normal life. I work, sometimes hard, and also do some heavy gardening on weekends. 
My experience is that side effects really decrease over time, and consider that I am on the highest dosage.
So Sprycel is a bit of an annoyance, but is really working for me. 

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side effects. It's nice to talk to someone who is going through the same thing I am. Thank you so much. Its nice to know I'm not alone!

I am 29 and also in the same phase as you were when diagnosed. The sprycel seems to be working so far. When they put my dose back up to 140mg I will have to figure out how to cope with the side effects. It's nice to talk to someone who is going through the same thing I am. Thank you so much. Its nice to know I'm not alone!

On my hospital hematology area, monday is CML day; most people come in as a father/mother son/daughter couple, and usually the elderly is the patient. With me and dad, it's the opposite.
Well, at least he's healthy :)

 Also, accelerated phase is not that usual.  At any rate, frankly I am still adjusting, 10 months is not that much; being Italian I am kind of superstitious, and intimidated by saying it out loud... but I am definitely  better now.  So hold on tight, take your pills, finger crossed and stay in check. And the best of luck to you. Well, to us all.

Thread continued from: 
DIGNOSIS OF CML