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#21 Pinkbubbles9642

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Posted 28 January 2012 - 01:54 PM

Oh I'm use to the BMB by now, they hurt, I cry it's nothing new... but I'm starting my BMT (bone marrow transplant) meeting to get started



#22 luvmybees24

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Posted 28 January 2012 - 02:18 PM

Don't they put you under?!? They do mine in the surgery room and i'm OUT.



#23 pamsouth

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Posted 28 January 2012 - 03:09 PM

MJ thinking of you.

Reg BMB, ouch.  You are still young. 

I have only had 2 done in six years.  My First BMB God Bless the Doctor he gave me a strong IV of something it took hours to wear off, but then, Ouch, I was on a walker.  The second BMB I flew to MDAnderson and didn't have anything, I was in pain for weeks.  I never had another one.  Pain Pill make me sick, and I used ice and went to the chiropractor as well.  I think the second one was worst because she drilled 3 or 4 spots.  The girl that was suppose to do got called out for a telephone call, so another girl who usually just assist, decided to do it, how did I know she didn't know what she was do.  She would drill a spot and say can you feel that and I would say yes, then another spot and another, she finally decided to stop, I believe that BMB was very not a good one.  Then the girl who usually does them came it and the girl that drilled about 3 or 4 holes said oh I'm all done, but I couldn't get it.  But I sure did suffer the pain for week.  But then I was 57 years old and had muscular skeleton pain anyhow.

When are you starting your BMT?  Who is going to be helping you?  Have you got your house set up for everything you might need?  What hospital will you be in and for how long? How good a donor match did you get?

Thinking of you everyday and standing in prayer for you, that all will go well, you are young.

PamSouth


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#24 Judy2

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Posted 28 January 2012 - 03:33 PM

Hi MJ,

You are not going alone to your BMT appointment are you? If the med you are on now starts to work for you will they reconsider the BMT?

I hope you are having a peaceful day, hang in there.

Hugs,

Judy



#25 Pinkbubbles9642

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Posted 28 January 2012 - 04:10 PM

If the Tasigna starts working I hopfully wont have to have it but I dunno.. there so much goin on who knows anymore...Lab work yesterday all my numbers are still messed up horribly :-(. I've having HORRIBLE side effects from Tasigna from constant headache, hair loss, extream fatigue, joint pain itchy scalp and nauseous.... I feel like Gleevec all over again :-(.... Judy My friend is tryingt to get off work so she can go with me to the appointment but as of right now nope it's just me.. But NO I have never been put under for a BMB, first time I got shot of morphine 10 mins before then they did it while I laid on my side right there in the room you meet the doctor in.... Second time I had no shot just used the numbing shot before they started drillin and saying can you feel that and I was laying on my tummy... my last one was the worst I was on my tummy and the first thing they used wasn't "long enough" so she had to start over and it was horrific!!! omg horrific experience.... I don't want to do another but I know i'll have to lol.. Wish they would put me under in order to do mine... :-/ they said I have deep bone cavities and i don't care how many people say it doesn't hurt them, (granted I'm happy that they don't hurt you lol) I cry my eyes out, grip the sheets and right leg always raises each time... Either I'm a massive pansie, which I didn't think I was, or my body is different and I feel the pain...



#26 Judy2

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Posted 28 January 2012 - 04:28 PM

Hi MJ,

Your friend from Maine isn't flying down to be with you? If she can't be there in person perhaps she could be on speaker phone during your appointment. I think it would be a good idea to have another set of ears there as there will be lots of info and I'm sure you will be anxious. Please let  me know if this is a possibility.

Judy



#27 Pinkbubbles9642

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Posted 28 January 2012 - 04:37 PM

Hey judy... She has a ticket bought already to come with me but her husband just had a major medical issue so not sure if she'll make it... I rather her be there for her husband who needs her physically there when I need her more emotionally... but she is still going to be coming to the transplant with me if I end up getting one....



#28 Judy2

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Posted 28 January 2012 - 04:40 PM

Hi MJ,

If she can't come what about the speaker phone idea?

Judy



#29 Pinkbubbles9642

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Posted 28 January 2012 - 04:45 PM

It is an option... I actually thought about bringing my tape recorder I use for classes and asking the doctor if I could record it so I don't forget it or incase I don't really "hear it"



#30 Judy2

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Posted 28 January 2012 - 04:56 PM

Hi MJ,

Great idea!!! When my step-father was sick last year I would take him to all his onc appointments. His older son, who is a physician, lives out of state so he would "sit in" on some of the appointments by speaker phone. This worked out really well as he thought of questions to ask the doctor that I had not thought of. Perhaps you could do both things, record the appointment and also have your friend there by speaker phone so she would be able to ask questions also. You know what they say, two heads are better than one.

Also, I forgot, did your onc ever try you on Sprycel? This works a little differently than Gleevec or Tasigna.

Judy



#31 Elizablest

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Posted 28 January 2012 - 05:25 PM

Oh my gosh, Pam!

What a horrible experience. I would have been reporting it.

I now realize how fortunate I am. My doctor did my BMB himself. And except for the needle with the numbing stuff, I felt NOTHING at all except pressure. No other meds. I expected it to be hellacious. I have another one coming up and we shall see if i am so lucky this time.



#32 Elizablest

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Posted 28 January 2012 - 05:29 PM

Seems to me, MJ, you have a right to ask for anesthesia of some kind after what you have been through. A person has a legal right to be treated in a humane way. I think those might be the words you could say before the appointment date is agreed upon. If your appointment is already set. i would call and still say it. I'm so sorry you have to go through so much of this alone. We are here for you. I know it's not the same as a real flesh and blood person. But we are here for you!



#33 luvmybees24

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Posted 28 January 2012 - 07:03 PM

You need to INSIST they put you out. I would flat out refuse to if they didn't. There is no reason why you can't be sedated!



#34 pammartin

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Posted 28 January 2012 - 07:43 PM

Hi MJ,

I just wanted to mention your Effexor, I have taken this drug and it worked well for me, but I have a friend who experienced a deeper depression after a few months on Effexor.  Each of these anti-depressants have serious warnings with them, and even the best of them have different reactions for different people.  I cannot take several anti-depressants for the same reason.  Maybe you could talk to your doctor about trying a different anti-depressant, but right now, please call one of the numbers others gave you, or send me an private message and perhaps if you are comfortable we could talk on the phone.  reach out, there are many people who care about you, and what you are going through, even if many of us have never met you.  Please take care

Pam



#35 felursus

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Posted 28 January 2012 - 08:43 PM

MJ - no one should be in such pain with a BMB!  It shows poor technique on the MD's part. When I had my 2nd one , my MD had a Fellow with him, and he did part of it. I was kicking out (despite IV pain meds) but then my MD took over, and it became bearable. The 3rd one was as an out-pt, and he used the drill and that one only hurt for a minute - actually it was an intense burning sensation in the groin, so I think he hit a nerve. I yelped, he paused, and that was it in terms of pain. It was done in a regular exam room.

You really should have someone else at least listening in during your consult - someone who is forthright and who will ask questions.   You will probably be feeling overwhelmed and might not think of things to ask.  You should read lots of posts on the transplant board, as there will be issues discussed that might apply to you.

Hugs,

Karen



#36 lthouse612

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Posted 29 January 2012 - 12:07 AM

Hey MJ...

Although so far I've only had to have one BMB... I will NEVER forget it!!!  I have never been in so much intense pain in my life!  They too just did the procedure in the doctor's office--same place they do their consults.  Since having never had one before I never thought about asking to be put under or at least I don't remember asking.  Had I known the amount of pain I would have experienced, there would have been no question about them putting me under.  I gripped that table so tightly I thought I was going to crush it.  Apparently my bone density/toughness is such that she had a hard time getting in there and it was not an easy task. My wife said when she saw the whole thing it reminded her of some kind of torturous horror movie..LOL  Anyway, I hope if you do have any future BMB that they be handled much better and hopefully with less pain... if that's even possible.  Hope you're continuing to hang in there the best that you can!

Mark



#37 pamsouth

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Posted 30 January 2012 - 03:01 PM

LTHOUSE612,  I;m with you!  The first (BMB) one I had was in a small room, at a cancer hospital and I was lying on my side, in a fetal position. 

The doctor was kind enough to say I would not do a BMB on you with out sedation/IV and whatever was in was pretty potent.  God Bless that Doc!!!!  I did not feel anything, but a few hours after the sedation worn off, well lets just say I was on a walker for a week, ouch.......  The next one (BMB) I had, I hate to say was at MD Anderson Houston TX, as I highly respect them.  I probably should have reported the incident.  I was flat on my stomach and the tech whoever, was about to do the BMB when she was called out on a phone call, so another gal stepped in her place and said I will do it, she would drill one spot and say can you feel that, I would say yes, she did this 3 or 4 times, and finally quit. Then the girl who was suppose to do it came back in the room and the girl who did it said I already did it but I couldn't get enough.  They didn't get enough of a sample to really mean anything.  But I was in pain for weeks.  Tried Ice, and went to Physical Therapy, did pain pills even though they made me nauseated. Needless to say that was the last one I ever had.  I know the doc's keep saying I have been doing this forever and rarely do I have a patient complain.  Seems to me that would be me!!!

PamSouth


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