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Old 06-08-2012, 11:39 AM   #2
Join Date: Mar 2012
Location: Washington DC
Posts: 9
TremoringFun HB User
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!