Trey and everyone here I got my test results back from the lab and onc did confirmed that I am indeed MMR. I was diagnosed in Jan 2012 with cml and actually started taking Tasigna in March at 300mg twice a day, but after a week of bone and muscle pain, was put on a half of dose. But scary thing I am supposed to go for my second bone marrow the last of February, but my doc expressed concern that my insurance will not pay for an outpatient BBM, even though i informed him that I have talked to my insurance co. several times and they will cover it, he says that he wants to just give me something to relax me. If you remember I had a horrible experience with that, and I believe I have post traumatic stress syndrome, because something has to be done or I am afraid to go back for my 3 month visit.
I am indeed in MMR
Posted 03 January 2013 - 06:56 AM
Congrat on MMR in such a short timeframe! glad to hear it
You can try to have your insurance put it in writing to you that they will cover procedure or get the insurance persons name as most of those lines are recorded and just document it...
We can understand anxiety for one of these bmb as we all have that least until the procedure is over. Take the mild sedative should that put you more at ease and lessen the pain.
Posted 03 January 2013 - 07:16 AM
Insist on having an In-patient BMB with "Conscious Sedation". Regards, Frank
Posted 03 January 2013 - 10:31 AM
Many Oncs would not do a BMB after MMR. It is not really necessary at this point unless the previous BMB showed something like marrow fibrosis or some other specific marrow issue.
Posted 03 January 2013 - 08:12 PM
Oh really Trey, wow, I read that some doc only do one bmb, and others do more often. But after first one, can't they just do sensitive blood tests?
Posted 03 January 2013 - 09:39 PM
Hi Marie: That is great news, and at this point they should not have to do a BMB on you unless like Trey said they see something in the Marrow. I started out with a BMB every 3 months in the beginning, but Once I got to MMR, I never had another BMB again. I am constantly monitored with regular blood work every 3 months and then my regular blood work with a PCR test every 6 mnths. I have not had a BMB in over 10 years now. Ask why they want another BMB to be done. I went through a rough time when my BMB was done in the office setting. They had to do it with the conscious sedation all the time on me in the outpatient section at the hospital, and I had no problem when it was done that way.
Ask why he is not just doing blood testing on you at this point.. I hope you get the answers your looking for.
If your Oncolologist insists, then tell him to get the permission from the insurance for the sedation, as you need to have it done that way.
When I was in the clinical trial, they insisted on doing it right there in the office of the Oncologist because I was not paying anything. They were looking for the cheapest way to go to do it.
Posted 04 January 2013 - 09:08 AM
As Trey said, unless you had something unusual going on such as excessive fibrosis or any unusual deletions / translocations there is no real point in doing a BMB at this stage - so just tell your onc that you're not having one. To help drive the message home you may want to wear one of these:
Congratulations on the MMR
Posted 04 January 2013 - 04:24 PM
Do you always look at booty shirts or maybe you have a couple!!
Posted 04 January 2013 - 06:52 PM
I somehow don't think I'd look as good in it as the lady in the picture - and to be honest 'Booty' is a bit on the polite side for my normal vocabulary! Actually, I'm not sure I've ever owned any garment with writing on it - other than the maker's name and the washing instructions.
Posted 04 January 2013 - 10:02 PM
I reached PCR-U at 9 months. Still, my doctor says I have to have another BMB on my 1-year anniversary of diagnosis. Bleah. Can I really refuse to get the test? I am dreading February....
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Posted 05 January 2013 - 10:03 AM
This is actually in reply to antilogical and mariebow:
As patients we have the right to refuse any test or treatment! However, if we choose not to follow our doctor's game plan I suppose they also have the right to refuse to treat us. That's why it's important to develop a good relationship with your doctor. If your doctor will not listen to well thought out reasoning or will not follow the most up-to-date protocol (in this case) it may be time to get a new doctor anyway.
I would also insist on conscious sedation, that is not unreasonable. If your doctor is in network for your insurance plan then it is up to them to get the procedure certified (approved). If they are out of network, then it is up to you. "Being concerned" that your plan will not cover it, rather than finding out for sure with a simple phone call, makes me question your doctor anyway.
Good luck and believe in yourself!
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 05 January 2013 - 11:13 AM
Also, ask your Onc if he follows the NCCN Treatment Guidelines for CML. If so, then he should not do a BMB for any patient after CCyR unless there was previous evidence of higher risk CML (advanced phases, secondary mutations, fibrosis, etc).
This summarizes both European and U.S. recommendations for treatment of CML (see notes in Table 3):
Here is the patient version of the NCCN for CML, but the professional version is even more clear.
It is possible that insurance would deny coverage of a BMB procedure after CCyR since it is not recommended by the NCCN Treatment Guidelines.
Posted 06 January 2013 - 04:24 AM
The important thing is that you discuss it with your onc to try to come to a solution you are both happy with. The bottom line though, (no pun intended) is that if he still insists he wants to carry out a painful procedure that is both against the patient's wishes and contrary to the NCCN guidelines, and he can't give you a persuasive arguement for doing so, then changing doctors is a perfectly sensible option - and one that many people on here would choose in that situation.
Posted 06 January 2013 - 11:33 PM
Thanks PhilB, all these comments will help me decide what to do. you all are familiar with all this, my friends and family is not.
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