8 replies to this topic

[dee145]

I have been seeing my onc. since April of 2010 after a horrible experience with another onc.  I have been PCRU since July of 2010.  Now he feels it's time to do a BMB and I am scared to death.  The 1st onc. let me lay there crying and screaming cause it hurt so bad.  My current onc. says he's giving me a local and I won't feel a thing but I'm still afraid cause my blood pressure dropped last time and they wouldn't give me any more sedation med.  Can you be PCRU and still have something major going on in your marrow?  I am still dealing with the tightness and what they say is anxiety, I think I am stuck with that.   I am on Buspar and xanax but I won't take more than 4mgs a day of xanax.  I don't know if the Buspar is doing any good really and I have tried to cut back on the xanax and can't.  I feel like a drug addict and don't like that.  My onc. says if I need it to take it but he's not the one getting addicted to it.  He's a wonderful dr and I feel he did wonders for me compared to the other one but just not sure on the xanax and BMB.  He is a specialist and the other one wasn't.

I had a partial hysterectomy done in Sept. but it was just a cyst on left ovary and came back ok but my little cut on right side won't heal right.  It's not closing like it should and oozing clear liguid and a little blood so I guess I have to go back for that.  My husbands work changed insurance Oct. 1st to HealthAmerica with high deductable but his work is paying part of my share for me.  Waiting for the speciality pharmacy to call me about my Gleevec, dr did his part already.  It's called Accredo.  Hope it's not to long so I don't have a shortage of pills.  I think I have like 17 left.  My co-pays for specialists went from $20 to $40 but some co-pays for meds went down.  I hate change!!!!!

Just a update and really scared on this BMB after the bad experience.  I am done venting now!!!!

                                             Dee

[scuba]

Dee - You say you are PCRu - and I assume your blood counts are normal or near normal (CBC's).

I don't understand why a BMB is necessary at all.  Unless PCR is rising after having been PCRu (significantly rising), I don't see the value of having your bones sucked out.

Michael

[grannyd]

Hi Dee, I am in the same boat as you!!! I have been on tasigna since Feb. 1st of 2011. Been in CMR since July. Just had my PCR test & everything is good, still CMR & all numbers are good. Dr. told me she wants me to have a BMB just to make sure all is good & nothing more in there. Of course I questioned her to death, thinking something must be going on she isn't telling me!! She is the CML specialists I see every 3 months. So I went for my monthly BW, to my regular onc & ask her. She said it was just her protocol to do another one. I hope they don't find anything else brewing in there!! I also am scared like you. THey haven't set me up yet for the BMB, don't seem to be in any hurry!! My son just had a BMB, they found he has LOW WBC & HIGH RBC. Had it done last Tuesday & won't get results until next week, the 25th!!! The waiting is what really makes me anxios. I have been praying so much for him!!!! Good luck & keep posting. prayers to all, granny d

[noelani]

My husband is a very tough guy but his first BMB was excrutiating. It took vicodin for a week to deal with the pain. So when he needed to get another one, he had so much anxiety about it, he literally fainted in the middle of the night and fell on the bathroom floor. We told this to the doctors and so they gave him vicodin and valium. A big difference was that the first time, the doctor was a very petite short person. She couldn't get into the bone and so had to try a second time. The next doctor was about 6'3". He had a wonderful gentle approach. He talked my husband through it. He said my husband had hard bones but not as hard as some people have. His oncologist thought his high white blood cell count may have also impacted the first BMB. Anyway, the second one was a piece of cake. My husband was so happy-didn't feel any pain and no pain afterward.

[dee145]

My blood counts are great and I'm  still at 'not detected'  all 0.00% on BCR-ABL.  He has never done one on me so he wants to do one just to check things out.   My liver counts are great also.  I am just scared cause of the way the other onc. treated me, I was really screaming and crying and he didn't care but my new onc. is wonderful and you can feel the compassion when he walks into the room.  He promised me I wouldn't feel any pain but if my blood pressure drops again I am afraid they won't give me enough sedation and I will be hurting like before.  I go Nov. 1st, my husbands birthday.  I forgot to ask but do they let any one go in the room with you while it's being done?  My husband can't, he would pass out, but my daughter in law would and she's a nurse.

                                                      Dee

[Taylor]

Hi Dee,

If you've never ever had one, then it might be good to have one just so they have a picture of what things are like so that they can go off of them in the future.  In any case, they do let people be in there with you.  My dad was in the hospital room with me when I was first diagnosed, and my fiancee was in the room with me for the second one.

Taylor

[scuba]

Hi Dee,

Let's review:

PCR = zero

Blood counts = 'great'

Liver = 'great'.

Onc wants to do a BMB just to 'check things out'.

You tell your Onc ... that you will have the BMB AFTER he has one FIRST.

No way would I have a BMB if I had your current results.

[Susan61]

Hi Dee: Sorry your still suffering with the anxiety so bad.  If you are at PCRU, there is no reason to get a BMB.  I was seeing a excellent Oncologist, and when he retired his new doctor who took over his practice told me on my first visit to him that I needed a BMB.  I told him NO, and he insisted.  I left his office,and found another Oncologist who totally agreed with my former doctor who retired.  I have been PCRU now since 2003, and you can tell him that you do not want it.  I went through some painful BMB in the past, but when I complained about the pain I finally got enough in me to spare me all that pain and stress.

I used to get the Versed IV, Lidocaine, and a dose of Demerol into the IV.  I was in a semi-conscious state but felt nothing.

I know you like your new doctor, and if he is easy to talk to then just ask him WHY he wants a BMB when you are PCRU.  Tell him your going through enough anxiety, and it will just make it worse.

Susan

[Susan61]

HI Michael: You are absolutely right.  If you read my post I just sent to Dee, this doctor who wanted to do the BMB was trying to prove something in my estimation and make some money.  He was very new to treating CML, and I felt  I knew more than he did.  He would not listen to me, and with no notice I just left and went to another doctor.  I always keep copies of all my records, therefore, I did not even have to request copies from his office.  They never heard from me again.  The hard part was that he took over my old doctors practice who I worked for before he retired, and I had to leave the nurse also who I was good friends with.  She never spoke to me again either for leaving.  Its our body and our health, and I do not care who's toes I step on.