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OUCHY! DON"T LIKE BMB TEST!!!!!!

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Have you ever heard of someone having DRY HARD BONE? Well lucky me...I have it. What a horrible experience today! My doctor went in for the marrow and tissue but kept saying she wasn't getting any blood...kept saying my bone was dry. I can't count how many times she tried, but she finally gave up and decided to go in at another location...higher up. She had to re-numb that whole area and then decided to give me a pill called adavan (sp?) to calm me down.By that time the only thing that could of calmed me down would have been a galon of Crown Royal!!!(seriously)Anyways, she started all over in the upper hip and after what seemed like an eternity she finally got enough blood with tissue. She had a heck of a time getting the bone sample because she said my bone was thick and hard as rock. I could hear the screwing sound going in to the bone and then a popping jerking sucking sound when she pulled it out. The pressure coming out was off the hook!!!! It took an hour and a half and I felt like a wet noodle when she finished. My hip is still numb right now, but I'm thinking it won't be long before that wears off. Hate to sound like a baby guys, but that BMB was one bad A$$ test and I don't look forward to EVER having it done again!!! She said we won't get the results back before July 26th.The tests have to go to Spokane and Seattle. She told me to take my 2 week vacation and I'm then scheduled to discuss what treatment she will plan for me the week we get home...Aug 16 at 2:30, So....it looks like I'll be fishin and relaxin before chemo..."YES"! Ok...need to go sit down and watch the 2 hour special on Captain Phil...Deadliest Catch. My oldest son fished the Bearing Sea for 12 years....I hated it! Now he's a Union roofer...thank God!
Sue

CiAnnaBananna's picture
CiAnnaBananna
Posts: 105
Joined: Mar 2010

the BMB was the worst part of all my tests, surgeries, and chemo combined so I really feel your pain. I can't imagine if they just kept poking around on me. No meds helped me either. Praying for you and hope your results come back favorable. What type of cancer are you facing if i may ask?

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

The type of cancer I have is Follicular NHL stage 3(if not in the bone)Grade 2 and I'm Type A. I have tumors in my left groin...abdomen...and left side of my neck. My CT scan showed no signs of it in the spleen..liver...kidney(only have one)...pancreas(sp?)...or lungs. Doesn't mean it won't travel to those areas down the road, but as of right now those vital organs are clean. So...thats a "Good" thing. Hubby and I talked this morning and have decided to stay home and cancel vacation. We want to save the money for all of the co-pays that just keep rolling in. He said we will do some mini trips...a day trip to Seattle...drive up in the mountains etc. Neither of us are in the mood for being gone 2 weeks. Yesterday really took the wind out of both of our sails...ha! We will have fun just being together, so it's all good for us and no big deal.
P.S...You look absolutely darling with-out hair!!! Seriously...you really do! You've got a beautifully shaped head and such a pretty face and awesome smile! I have a round face and I'm sure a fat round head under this hair, so I'm thinkin I won't look as attractive...ha! "LUCKY YOU"!!! You remind me of Natalie Portman.
Sue

CiAnnaBananna's picture
CiAnnaBananna
Posts: 105
Joined: Mar 2010

Aww, thanks for the compliment. I wasn't thrilled about losing my hair, BUT its a small price to pay to get better. Plus it's really easy to get ready! I have been taking a bunch of mini trips myself during all of my treatments and it's been fun. I have a few more planned for the summer and it's nice because when i'm feeling sick during and after chemo, i just keep counting down the days when I know i'll get my energy back and I have a little trip to look forward to. Let us know how everything pans out! I'll keep you in my prayers

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sorry you had to cancel your vacation. All my organs were clear on my pet scan as well. Yes, it could get to the organs later on. I think the chemo is supposed to help prevent that. There are so many coulds,shoulds,woulds,cans and maybes about this disease its a real waiting game. When do you start your chemo or is that still up in the air? I really feel you made the right decision to start as soon as possible. Its all about your own gut feeling when you come down to it.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John...
My doctor said we won't even have the results back on the BMB until around the week of the 26th. I suppose once we find out if it's in the bone she will get busy on when to start. We are perfectly fine with cancelling vacation. Hubby said he would be more comfortable not being away from home and actually that works good for me too. The fish will always be there! Have a good day....Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue, I went 2 days later to the hosp. where I had the test and they had the results already. I wasn't scheduled to go back to the the onc. for 10 days. Those results are diagnosed within 24 hrs. I already knew it was in the bone marrow way before I went back to the center. I am not putting the Drs. down, but it does not make any sense why they have to wait so long to give us results. Like we don't have enough weighing on our minds. No matter how it comes out they will still treat it the same. It almost seemed like that is what they were waiting for to begin with(to reach the bone). The Dr. told me we would do a bmb and see if it had reached the marrow and if it had we would start treatment immediately. Makes me wonder what would have happened if it was not in the marrow. Would I still be waiting?

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

I know John...I've asked myself the same questions, but at this point I'm trying to stay "in the day" and not let my "stinkin thinkin" get the better part of me. When my doctor said she was sending the bone sample to Seattle and the marrow sample to Spokane, I said "WHY"???? She said "it's just the way she does it"...????....What can I do?...Tell her I think the way she does it "stinks"? You see my point? At some point she's going to have to s--t or get off the pot with getting my treatment started.. so for right now I'm willing to give her the benefit of the doubt...ya know? Hubby is totally PO'd about all of this waiting around and I'm pretty sure thats why he decided to cancel our vacation. His mind is racing and he feels helpless...(even though he won't admit it to me), so I'm thinkin he just wants to hold on to his sanity by just sticking close to me and close to home. It's sad how hard this is on "EVERYONE"...not just the patient. I'm just taking it "one day at a time" buddy...what the heck else can we do...ya know?.....Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue, since she does things that way it is all you can do. Its "Hurry Up and Wait" anymore. Yes, it does have an impression on all people. Ever think if the shoe was on the other foot and she had the biopsy and how long would she would have to wait. I know and you know its beyond your control, its just a shame you have to wait that long. Its a long time to sit and wonder. Anticipation is worse than the diagnosis sometimes. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

When we left the clinic Tuesday after the BMB and the doctor said it would be 2 weeks before we know....my husband said..(quote).."you can bet your sweet A$$ if it was her child or husband, she would have the results back faster than you could blink an eye". I told him to just "drop it...I wasn't going to die in two weeks, so lets just roll with it and make each day count while we are waiting". He looked at me and rolled his eyes...ha! I have 7 sisters and at least twice a day one or the other of them calls to say..."hey...whens treatment?" I've gotten to the point where I'm screening calls...ha! Lets just pray the waiting will eventually reap some benefits and in the end we will all be ok. ...Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

You are both right!!!!!!!

vinny59's picture
vinny59
Posts: 1032
Joined: Nov 2006

I always say why the hell can't they sedate you, that is alot of pain to have to go through, but look on the bright side, go fishing and put all this crap on the back burner! wish you well! Vinny

onlytoday's picture
onlytoday
Posts: 604
Joined: Jun 2010

Glad that test is behind you (ha literally!!). And very glad you can now enjoy your vacation. Have a great time relaxing. Try your best to put this stuff out of your mind. God bless.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

They can and often do. I have had 2 and was asleep for both. I just don't get it, but it makes me kind of mad. My Md never does them with patients awake. I understand all Md's are different but come on. It's not like they're paying for it. OK I'm getting down from the soap box now.

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

You poor thing, but at least it's over. The whole thing sounds inhumane. I haven't heard of the dry,hard bone thing but there are probably as many scenarios as there are people. Enjoy your fishing trip and try not to worry too much. The treatment will be the same and yes it can clean up bone marrow too!! Mary

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue, My onc told me the same thing abour not being surprised if it was in the marrow. This got me to checking on all the sites to check it out. I was not aware of this site at the time. Because of the tumor sizes in my abdomen I figured it had been there for awhile. It was no surprise when the test came back positive. It was in the bone marrow,just a little but still it was in there. The Doc. said it would be treated the same as stage 3. That put me at stage 4. Nothing was ever said about the spleen,so I wonder about that as well. Spleen never showed any signs of swelling, but I don't know if that means anything or not. We are all different in treatment. I was really dragging after my first round up and down. This time I was a little better with the after effects, only its been 8 days out and my butt is dragging today. I guess thats normal, right guys? Hips are a little sore and now the taste has finally gone. The only thing I can taste is macaroni and cheese that I make myself. I know thats not the best thing to eat , but its the only thing I can really taste.I was outside most of the day yesterday in the heat and humidity and I am sure that did not help. Anyway, glad you get to go on the fishing trip. It would be no fun going if you had just gotten the chemo. You would not know what to expect from day to day. That tiredness feeling is no fun. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I am so sorry you had such a bad experience. I have been knocked out all 3 times and wouldn't have it any other way. I am wondering if you can request to be knocked out should you ever have to do it again?

The surgeon who did my biopsies told me and my hubby that bmb is the absolute worst, brutal test there is and even he said he wouldn't do it awake. I hope you get to feeling better quick and enjoy the trip!

Take care,
Beth

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Beth, I was awake with my test as well. I did have a local though. I did not feel the pain, but felt the pressure. It was horrible. I could feel the pulling when they were taking the needle or whatever it was out. They pulled and tugged. I was swaying back and forth on the table. I got so out of it I was close to passing out. BP dropped to 73/42. I started sweating and felt sick. I think it is the worst part of the test so far. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

My doctor attributes the dry bone marrow and thick solid bone to my taking Premerin(HRT) for the last 20 years. She promised that the next BMB will be done at the surgical center and she will be put me under. My hip is sore as heck today, but nothing un-bearable. Didn't get to sleep last night until 3:00a.m, but slept in this morning. Movin slow.
Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue, I was fortunate with my bmb as far as pain. For some reason today 8 days out of round 2 I feel like I am dragging really bad. Don't know if it from the heat yesterday or what. We are all different but this is rough. Hope I spring back tomorrow. This is what you have to look forward too. Its like a yoyo session from day to day. When you finalliy get back to near normal they hit you again and it all starts over again. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Man...I hate to hear when someone is feeling down. I know you had mentioned that you always were an active vibrant guy before all of this, as was I. I know how hard it is to not feel 100% and full of energy and how helpless it makes us feel. I was like the energizer bunny...go go go and keep on goin. I never felt like I was close to being 6O...more like 40. One of the hardest things for me right now is the loss of energy, and when I think that I haven't even started chemo yet...it scares the crap of me. I'm going to do everything in my power to not let this cancer get me down...energy or no energy. I sure hope you will bounce back...in the meantime, I'm thinking of you!
Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue, Don't mean to sound so negative, but this is one of those days where its just getting to me. Again, I want you to know what you have to look forward too. It will be like nothing you have experienced before. You are going to wonder why you feel so worn out and you haven't done anything to make you tired. Then you spring back the next day,then you don't feel good the next day after that. You will be able to tell what kind of day its going to be when you first get up in the morning. Been thru it quite a few times. It is a weird body feeling. I felt like a bus hit me sometimes. When I woke up this morning I opened my eyes and said "Oh, Sh--", gonna be one of those days. The good part of it is we know the chemo will help us in the long haul. John

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Already had 2 naps today and slept good last night. I feel like I been awake for 48 hours. the body is worn out, but strange as it may seem I am not mentally tired. Thats the only way I know how to explain it. It will get better, but it does get you down. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

John by the time I got done my routine was this.

Drink a cup of coffee on the porch, watch the sun rise............take a nap.

Shower..........take a nap.

Eat....take a nap.

Watch Tv.........take a nap.

Eat some more.......another nap.

Throw in a load of laundry............take a nap.

Cook dinner ( or wait for hubby to do it )

Eat....and go to bed.

It does get better!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Dixie, I do feel a little better today. The hips are sore though. I guess the bone marrow is working overtime. I do not get up early enough to watch the sunrise, but I do get the coffee and get on the computer. I should be feeling even better tomorrow if it runs like it did last go around. Then with the chemo nothing is a gaurantee,right? I just wonder how a person can feel pretty good and then 8-9 days later it knocks them down the way it does. John

kawilky
Posts: 1
Joined: Jul 2010

I have NHL, went thru a Bone Marrow Transplant (Autologous) my own stem cells. I had a clean BMB last October, my Onc wants me to have another one 8/2/10. She says she can't put me under, does your dr say they can? HELP I am already on Norco and Morphine for my burning hands and mouthwash for mouth sores. I was treated at Stanford but belong to Kaiser in Redwood City, CA. Please tell me if there is a way to be put out? I have to have one every year to stage the cancer, or see if there are any NHL cell come back.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi...I don't know what to tell you about how to convince your doctor to put you out, or under. Mine said "NO" to me on Tuesday, but AFTER the test was done and she saw how up-set I got through-out the prodedure, she promised me that the NEXT time she would sedate me. Believe me I will be holding her to that promise and if she gives me any signs of not keeping that promise I WON'T get it done. No way no how will I go through that again. Others in the group said they got a locale sedative or were put under, so that obviously tells us they(the dr's) "CAN" do it and it doesn't mess up the testing. Wish I could give you a solution, but I think you will have to battle this out with your doctor. I'll be thinking good thoughts for you. BTW...it's day 3 after my test and I really feel just fine. As crumby as the test was..I did survive it.
Sue

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Mid June I had a procedure in interventional radiology to obtain tissue samples from the area around and in front of my sacral spine. This procedure was completed under conscious sedation. My IR obtained 16 samples. He stated that they usually require only 8 but that my tissue appeared to be somewhat necrotic and he wanted an adequate sample. Since my blood pressure runs low, I was not able to get the best benefit from the conscious sedation, but is certainly took the edge off. The results were due back in 3 days. On day 4 I was informed that there was not enough tissue to complete all the testing and that they would need to repeat the test. I was still an inpatient at this point and believe that the testing was expedited due to that fact. My next trip down to IR brought in a total of 32 samples. The areas drawn from were similar to that of BMB but they use a stainless steel hammer and drive large, hollow bore needles into the sacrum. Absolutely horrible, even with the conscious sedation.

The following day, my oco completed a bedside BMB, without conscious sedation. It was difficult as she had difficulty obtaining a sample due to my "dry bones". I did not have conscious sedation for this procedure, buy I will request it in the future.

I am treated at a large teaching hospital and was assured that I could have conscious sedation if I requested it. I hope that they were not just saying that to put me at ease! The pain associated with BMB is what I consider to be unnecessary. As patients we have enough to worry about; plus, why subject our loved ones to the fact that we will be in pain, a pain that can be avoided. It can't hurt to request conscious sedation.

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi...I was so happy to see someone else use the term "dry bones". My doctor said my bone was rock hard(not pourous)and the marrow tissue was dry. Thats why she had to go in 3 seperate times with the needle before finally re-locating to another area in my hip to find marrow tissue with ample blood in it. I'm sure the procedure would have been less stressful/painful if she had not encountered the "dry/hard bone" situation.I agree 100% with you...we should NOT have to endure such tremendous pain and discomfort when having this test done. Bottom line...I "refuse" repeat "refuse" to have it done again if I am not going to be sedated...I don't care how they do it... conscious...un-conscious...or a hammer to the head...they "WILL" knock me out before I climb up on the exam table again...if not... it aint happenin!

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

I like your Spirit! Kellie

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