Hi Kelly, So sorry to hear about your problems. I tend to think,"they don't know"!!! My Onc nevers looks at my files until I am in the office, and then he has to go back and see what I'm talking about. I told him I wanted a PCR and he said if my platelets didn't come down, he wanted to do a BMA. I had one of those done late last year, and he never even discussed the results with me. I have had high platelets now since Aug of last year, and he had me take more Gleevec, but only looks at the cbc and doesn't order the PCRs like I think he should. He has been my Onc ever since I was dx, and it seems to get worse with time. What's the solution? I just don't know. Hang in there CML warrior. Blessings, Jeanie<3 In a message dated 6/19/2008 11:53:34 A.M. Eastern Daylight Time, [EMAIL PROTECTED] writes:
Hi good people! Just an inquiry to see if anyone else has experienced this. I have been suffering from lumbar, thoracic and cervical back pain for months (the entire spine). Some days it is worse than others. In April I had an MRI which showed the lumbar spine to have "diffuse heterogeneous infiltrate consistent with leukemic or tumor involvement." Cleveland Clinic doc said he didn't see anything in my MRI to account for my complaints of lower back pain, so I put off making an appointment to see an orthopedic within my insurance network. Long story short, I soon tired of the constant pain and how it was limiting my activities of daily living (grocery shopping always ends in severe pain). I made an appointment with an orthopedic doc within my network. He read my MRI reports and stated there was nothing he could do for me other than prescribe pain medication. He prescribed tramadol 50 mg and told me to check with CCF to make sure I can take the medication. I called my NP at CCF and she indicated she thought he was full of baloney until I told her that, YES, the MRI report does say there is infiltrate consistent with leukemic or tumor involvement in the lumbar spine. (I was completely surprised she had not read my MRI results since she is my primary contact and caregiver at CCF and they were the ones who ordered the studies). She said she would check into the medication and call me back. She called me back several hours later and told me that I could take the medication and that she would be offering me palliative care and would be referring me to their palliative care unit. Well, I've done medical transcription for many years and the term "palliative care" rang some serious alarm bells in my fog-filled brain. I do realize that palliative care is NOT hospice. After some research, I found that patients who have experienced complete cytogenic response have developed CNS and other tumors which are very hard to treat - especially in chronic ML. My oncologist had previously told me that CMLers do NOT develop "solid" tumors, CML is systemic. Which begs the question - do they simply do not know? or, do they lie? My last PCR-ABL was 0. I know I shouldn't believe everything I read, but, my physicians are seriously lacking when telling me ANYTHING regarding this disease and I have to find everything out on my own, whether it be accurate or not. I was just celebrating with my family last weekend on my "complete remission." What a crock. The last thing I need is to get depressed again over the indifference I've encountered with these health care professionals. I am getting really po'd. Depression is anger turned inside out, eh? ANY information anyone can provide would be greatly appreciated. I'm not asking for miracles, I just want the damn truth. My oncologist doesn't even deal with me anymore just the NP - LOL! The same with my PCP - I get the NP instead. I am polite, professional and easy to get along with. I guess my insistence and blunt nature can be misinterpreted, or, they don't want to admit they don't know the answers. My insurance company is now demanding to know why I don't have insurance coverage through my employer instead of through my husband's. I guess they are sick of paying. I am sick of the whole ball of wax. Thank you all for your knowledge, comfort and support. Kelly **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
