5 replies to this topic

[CheriJ]

Hi everyone

So I had my first visit with the new doc.  He said he thinks maybe there was an issue with the BMB not being read correctly.  They are going to have the slides pulled and relooked at.  He's wondering if there is any issue at all.  After leaving and some reflection, I remembered that the reason I went for a check at all was the MRI that showed marrow issues.  So there is an issue.  He just doesn't  know what. 

Says my spleen is not enlarged enough and my other levels are not enough to give a diagnosis.....

New blood tests including a test for JAK2. 

Ongoing - blood test every three months.  Wait and watch...  And that's it.

So I guess I live in limbo.

Cheri

[Trey]

So that whole jumping the gun to diagnose a very rare disease and imminent death thingy was likely a mistake by your Onc?  No real surprise.  Hope all turns out well.

Your previous posting with more details:

http://community.lls.org/thread/16522

[JLGoodwin]

I think that the general MO for diagnosising rare diseases is by exclusion.  So you'll probably be tested for everything under the sun that has a potential to fit your symptoms and then when nothing else fits it points to the more rare diseases.  I would say stick with it and see if anything results from it.  Good Luck.

[Trey]

As we discussed in your original posting (linked above), it is possible that you cannot be diagnosed yet because it is too early.  That is why a "watch and wait" approach makes sense under circumstances such as yours.  "Normal" CML cannot be diagnosed until the marrow has enough leukemic cells to be seen during a BMB biopsy, and this can take a year or more from the start of the disease.  So you may have nothing wrong with your marrow, or it could just take a while to diagnose it.  From what you have said, your marrow cellularity is high (granulocytes and megakaryocytes -- which are pre-platelet cells), your spleen was enlarged (at least at one point), and your monocyte count is high.  So it deserves watching, but that aCML diagnosis was a never justified by the data your first Onc had. 

[Happycat]

I'll agree with you on that, Trey, but at least the onc got Cheri to a specialist who will have a lot more knowledge.

Cheri, I'm very glad to hear you'll be in wait and see mode.  I hope they don't torture you with a whole bunch of new tests. Or, if they do, I hope you've got decent insurance with low copays so they don't bankrupt you. I once had an attack of pancreatitis, probably viral, but had to go the emergency room and ended up with X-rays, ultrasounds, CT scans and MRIs. Unfortunately, my dh was unemployed and all we had was my company's crappy insurance with a 20% copay on everything. I paid dearly for that ER visit. Thank goodness, when I got CML, he was employed so we had good insurance. I prefer $20 copays to 20% of the bill! 

Traci

[Pin]

Oh Cheri - that's a tough place to be. Hopefully it will mean they can exclude atypical CML, which on the plus side could mean much better things for you - but I do feel for you having to wait like this. I remember having to wait for my biopsy to come back at diagnosis and that felt like a million years and it was only a day. The unknown is a tough thing to face - with our disease though, we face it every day (but hey, so does everyone, they are just not as aware of it as we are!).

Thanks for letting us know though - I have been thinking about you, and please get on here if you feel like it to chat or anything!