I had a BMB at diagnosis 11/14/11 and am scheduled for one in May. Do I have to have one? Can't they tell the same thing from the blood smears? I have no insurance and do not recover well from them. I am thinking of refusing it. It is totally necessary? Of course my oncologist says yes but he's not the one who has to pay and recover from it.
Do I HAVE to have another Bmb?
Posted 04 March 2012 - 12:03 AM
If your FISH shows CCyR (or PCR shows 2 log reduction), then it is not necessary.
Posted 04 March 2012 - 12:39 AM
Thanks Trey! I should get the results hopefully next week. I am still not sure exactly what I had done so I will probably ask when I get the results. I don't see the dr. until the 16th but I go pick up my results before I see him. If i have to switch oncologists, I will. I am not having unnecessary BMBs just because he thinks I have to. I know it was a PCR but I'm not sure if I had a FISH.
Posted 04 March 2012 - 08:28 AM
My husband had one at diagnosis, July 2010, and another one Jan 2011. His dr, Dr Talpaz at U of M, said he would not require another one unless he saw changes that warranted one. So, thankfully for now he's in the clear with those! Good luck to you, hope you can avoid having one
Posted 05 March 2012 - 11:05 AM
I had one at dx in sept 2011, and they told me I wouldn't need another one. As long as they can do the FISH and look for the % of the PH+ then you shouldn't need it. If you can aviod feeling like a sledge hammer hit you in your hip, I would!
Posted 05 March 2012 - 11:15 AM
Yea I've decided I am NOT undergoing anymore. No one can make me. I am still waiting on the results from my last PCR and I think I may go to this CML specialist at U of M, since I live close to it. Why put myself through these crappy tests for nothing?
Posted 05 March 2012 - 11:16 AM
I live close to U of M (I assume you mean Michigan) and am thinking of going to see a doctor there. I'm not all that happy with my oncologist.
Posted 05 March 2012 - 02:47 PM
You can insist that they knock you out for the procedure..... also insist it is done by someone who is extremely experienced.
Posted 05 March 2012 - 02:53 PM
I was knocked out. I just had horrible pain for about a month after and now it's been 4 months and I still have bone pain. NO thank you.
Posted 05 March 2012 - 06:45 PM
Hi: I know how you feel, and at one point I had to switch Oncologists. You have to go where you feel you are getting the right treatment, and they should be able to talk to you and answer all your questions. I agree with Trey, and I would post all your results as soon as you get them. Once I got to a Ccyr, I never did another BMB. Don't get yourself all worked up over it. Most likely you can just get the PCR tests to see where you are. Trey will break everything down for you so you know whats going on. May is weeks away, so you have time to decide what to do.
Posted 05 March 2012 - 07:43 PM
Yes, my husband sees Dr Talpaz at University of Michigan. He still at times has uncomfortable feelings in his hip, both sides, where he had the biopsy. He was completely sedated for the first one. The second one he was "made to feel happy", which did nothing for him! I sat in during the procedure to try to keep him calm. I did not watch what they did, but out of the corner of my eye I could see it, oh my! It should be inhumane to do that to someone with out putting them out if they want. No way could I do it, sorry
Posted 05 March 2012 - 08:08 PM
Does he like him? Is he one of the specialists there? Wasn't the BMB done in the ER? I had mine in the ER and I was totally out. I wouldn't do it any other way. There is absolutely no way I'd have it done without sedation. I didn't have a breathing tube but I was OUT with an IV.
Posted 05 March 2012 - 10:22 PM
Yes, we really really like Dr Talpaz, we feel very fortunate that he wanted to accept Greg as a patient. We drive just under 5 hours to get there, but it's well worth the drive. He is one of the top CML specialists, google him and you'll find lots of info about him. The first bmb Greg had was while he was admitted to a hospital in Pittsburgh, the were going to do it in his room, in fact they wheeled the cart in the room, looked at me and asked if I'd be ok in there while they did it. I about flew through the roof and in a very matter of fact way told them they were NOT doing this to him in the room that he was to be sedated. They kept trying to force the consent form onto him to sign. Finally I had enough and said, NO you will NOT do this in the room, you will schedule him to be sedated no matter what it takes. They were not happy, but left the room, he had it done the next day in some kind of O.R. room. The last one done in Michigan was in a surgical type room, not an O.R. They told me they couldn't sedate him because they would have to have anesthesiology there and these were just RN's and whatever. They just juiced him up real good, but it wasn't enough. Hopefully things wont change causing a need for another one.
Hope your results come back good so you too can avoid having this done!
Posted 17 March 2012 - 11:37 AM
Hello! You said you are very happy with Dr. Talpaz. I am considering going to him for a second opinion about my BMB. You said your husband needed one 6 months after diagnosis. Were his PCR results good then? I have a 3 log reduction. I am just wondering because if Dr. Talpaz said he needed a BMB if he had good PCR results like mine, then there is no point in me going to see him. I want a 2nd opinion but I have to be careful because I don't have insurance and all these appointments aren't happy on the wallet. lol.
Posted 17 March 2012 - 11:37 AM
Do they do the FISH just on blood from your vein? My onc told me the Fish can only be done on marrow, which I didn't think was true...
Posted 17 March 2012 - 12:35 PM
I didn't have my 2nd BMB/A until my second anniversary. Yet, I had a FISH done every three months until I reached CCyR. Those were done on peripheral blood draws. (As were the PCR tests - so there is no confusion.) They can be done on BMA but it's not necessary.
If your onc doesn't understand that simple thing I would be looking for another one.
I just reread your post, not having insurance should give you all the ammunition you need. I think it is almost criminal to advocate an unneccesary procedure on anyone, much less someone who is struggling without insurance!
"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>
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