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Jestagrrrl1 06-06-2012 10:08 AM

CML Diagnosis? Is it possible after tests came back normal?
My mom was diagnosed with having a large spleen due to low platelet count. She had the spleen removed over a month ago, prior to the removal, she was tested for all types of cancers and any other blood disorders. She had a bone marrow biopsy as well. Everything came back normal or negative of any illnesses. The spleen was removed and her platelet count rose and she was feeling great. She still is feeling great, but now I just found out, that she had a call from her Dr, stating that they found something in her blood? She is going in for the results today and from what she tells me the Dr believes she has CML. I have no idea what this is, other than she said it is leukemia. Why wouldn’t this have been found prior to the spleen removal? If they did all these blood tests and everything came back fine, what escalated this to where we are now? I am so upset and nervous, and I am “googling” everything and every word associated with this under the sun? HELP

TremoringFun 06-08-2012 11:39 AM

Re: CML Diagnosis? Is it possible after tests came back normal?
First, I hope your Mom is doing well and that she was not diagnosed with CML. However, if she was, an enlarged spleen is actually a very common symptom of CML. I'm surprised it didn't show up on any of her blood tests but false negatives are known to happen or she could just be in the very beginning stages of the disease and it was only picked up now. Hopefully the fact that it wasn't picked up before and she feels pretty good means she is in chronic phase CML.

The good news though, of all the cancers out there, if there is a "good" one to have, chronic phase CML and thyroid cancers are usually them. Five year overall survival rates for people with CML is nearly 90%. And that's overall survival so those people with CML who pass away don't necessarily die from their cancer. Anyway, CML in general is highly treatable and for all intents and purposes has become no more than another chronic disease like diabetes or high blood pressure. Especially if like most CML patients, your mother is Philadelphia chromosome positive.

Most CML patients get by just fine on oral therapies such as imatinib, dasatinib, and nilotinib so there is no horrifically toxic chemotherapy regimen so often seen in other cancers. That's not to say there won't be any side effects, there probably will but, they won't be anything like nausea and vomiting, neuropathic pain, hair loss, etc. dealt with by other cancer patients.

One of the most interesting things seen in CML patients is that sometimes they don't respond as well to therapy immediately but that doesn't mean that your prognosis is worse. In most other cancers, the faster you respond to therapy the better your prognosis typically. This is not necessarily true in CML patients. So don't be scared or frustrated if it takes a few months for your Mom to show a partial or complete response.

I hope this helps!

Jestagrrrl1 06-08-2012 12:46 PM

Re: CML Diagnosis? Is it possible after tests came back normal?
Thank you for your reply, I was able to find out more of the situation. She had a very enlarged spleen and it was removed back in the beginning of May.
All prior blood work, blood test, bone marrow biopsy turned out negative. They removed the spleen and everything has been fine. 3 weeks after her spleen was removed, they noticed the white blood count a little low, so that is then they did further test and she was diagnosed with CMML. But it is in the very early early stages, so early that the Dr. does not want to do anything about it yet because her blood is still getting back to normal and regulated after the surgery. Her platelet count is almost perfect and the Dr said that her blood results have been improving after each test, I believe they were doing them weekly. So my question is, and I've been googling like crazy, would it be possible that if the spleen is removed it put her in some type of remission. Because the Dr. said her spleen was eating up everything, and now that it is no longer there, her body is now in the recooperating phase, meaning that her blood levels are now adjusting and he wants to see what her body will do on its own. She has no symptoms and "knock on wood" is doing fine. He said if and when the time comes, since this is a very slow moving disease, he will adminster treatment or dacogen I believe is what she said. Is that normal for the body to somewhat correct itself after a spleen is removed? Now mind you this spleen was 16 cm long and approximately 7-8 lbs. It was enormous. My mom is 72, she said she isn't worried and has faith in her Dr, but I am the worrier I suppose.

TremoringFun 06-08-2012 02:02 PM

Re: CML Diagnosis? Is it possible after tests came back normal?
Ok, so CMML is quite different from your typical CML although they tend to get lumped together quite often for a couple reasons but, that's irrelevant. And a 7-8 lb spleen! No wonder she feels better regardless!

I don't think removing her spleen put her in remission, your spleen should be a little less than half a pound. Your Mom's was many times larger than what it should have been and since your organs don't normally just grow out of control for no reason, it was obviously diseased. Removing it took a huge burden off your Mom's body, instead of constantly fighting this insanely diseased organ it can now take a rest and get back to normal. Hence all of her blood counts getting better.

A normal platelet count is obviously great news and in my personal opinion (I work in oncology research and I have a particular interest in leukemias, but I'm not an MD) not having a spleen to worry about when she does need to take Dacogen (decitabine) is even better. CMML does progress pretty slowly and knowing now rather than later will help as her doctor will be able to monitor her closely for any changes and begin treatment as necessary. That's way better than being diagnosed when you're in an acute phase or having symptoms.

I'm happy to hear your Mom really likes her doctor! Not everyone can say that!

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