24 replies to this topic

[luvmybees24]

I TRIED pleading with my onc saying how I had a 3 log reduction and why can't he just do a FISH test on me to check for remission and he said it's only done on marrow and I have to have one to ensure I am having the chemical remission or whatever its called (sorry I forgot the term). He said I probably won't need another one unless things go downhill, which he doesn't think they will. (so that's good) I am so upset. My other one was so hard for them to do (I was sedated at least). I was in so much pain for 2 weeks or so and couldn't swim or work out for about 3-4 weeks. It's been 4 months and I'm still on codeine because of the pain in my hip. I think scar tissue. Leukemia sucks. I feel bad complaining when there are people going through worse right now and I AM happy my blood levels are so good. I am just dreading this test. In mid May I think...

Laura.

[jrsboo]

So sorry you are dreading that Laura. They do suck.  But each one is also very different I have found, and hopefully this second one for you goes much easier. 

And leukemia does indeed Bite the Big One.

Sigh.

Hugs,

Caroline

[hannibellemo]

Laura,

I need Trey or someone else to verify but it seems to me that you are past cytogenetic testing, you have already had a molecular response (if you have had a 3 log reduction). PCRs, the test used to measure molecular response, can be done on bone marrow aspirate or peripheral blood. Mind you, I had one this year, and I've been MMR for over 1 1/2 years but I swear it will be my last unless there is some indication that I am losing response.

Good luck!

Pat

[luvmybees24]

That's what I told him! He said my FISH can only be done on marrow and that's the only way they are going to know for sure if I am in remission. I would get a 2nd opinion but I have no insurance so I'm wondering if it would just be a waste of time and money. I asked him if we could just repeat the PCR in 3 months and he said no, it has to be on marrow since I've only been dx 4 months ago.

[luvmybees24]

I know there are excellent doctors at U of M, which is only an hour away from me..but I don't know if I should risk the time/gas/money to just be told the same thing! Ugh....

[Marnie]

This isn't what you want to hear. . .but my first onc wasn't interested in doing a second BMB, and not having the verification of CMR from a second BMB was very stressful for me.  When I switched oncs, the new doc was surprised I hadn't had a second BMB (as per NCCN guidelines) and ordered it done.  I felt a LOT better after having it done and seeing the results.  That said, I'm a math teacher and I like having the data to verify what's going on.  Also, my BMBs were uncomfortable, but not intolerable.  Sounds like yours was pretty awful.

Marnie

[Susan61]

Hi Laura:  I agree with Pat.  We all wait for Trey to respond with his expertise on all of this.  The only thing I can think of is the fact that it is only 4 months, and this doctor is being extremely careful.  Every doctor is so different.  I have mentioned before that we have people who never even did a initial BMB, and their doctor just did a PCR from day 1.

I do not agree with that, but it just shows you how all these doctors vary.

I had gone to a new Oncologist after my doctor retired in 2010, and here I was at PCRU since 2003.  He insisted on me getting a BMB to look for a mutation.  I told him absolutely not, and if there was a mutation my blood work would have showed that my TKI was not working anymore. I have had a new Oncologist since that day.

     This insurance thing really controls our life, believe me I know what its like.  If you are going to let him do another BMB, then make sure you are sedated very well.  This soreness you still feel from the last one, does not mean you will be that bad again.  I am a hard stick like you, and even my original Oncologist who was extremely experienced told me that I was one of his toughest.  When are you supposed to get this other BMB?

Susan

[Lizzybee]

You have a right to refuse any treatment or test you don't want. The important thing is to consider all the pros and cons of having or not having a second BMB, but you have the right to make the final decision.

[pamsouth]

Luvmybees,  I agree with Lizzybee, "you have the right to make the final decision."  you are driving the bus!

I have said NO to the ONC before.  I had 1 BMB when I was first diagnosed (here in Indiana), actually had an IV of something during the Bi-opsy and  was OK until it wore off.  Was on a walker for a week.  The next year I had another BMB at MD anderson, was in pain for weeks, Horrible Pain, I absolutely refuse to have another one! 

You are driving the Bus, You have a voice!!

Pam South

[luvmybees24]

I know I have the right to refuse but I feel like I have no choice. Like, how would they know how to treat me without it? Will they not know if I'm in remission? Ugh.

[luvmybees24]

I am having it done at a hospital by an orthopedic surgeon, which is the same way I had my first one. This is a different hospital and my onc told me they are more experienced here. Honestly, I didn't feel too confident with the last hospital I was in. They kept making mistakes and although the surgeon seemed fine enough, the nurse felt it would somehow "help" me by telling me how painful her BMB was without sedation years ago. Gee, thanks just what I wanted to hear! I was sedated and didn't feel a thing during but after it was horrible. I was on Vicoden every 4 hours for a week and then one or 2 a day for the next 2-3 weeks. It's been 4 months and I still take codeine because my hip hurts. This is really irritating! I will probably go ahead and have this one but I am NEVER having another one again.

[luvmybees24]

Oh it will be done in May. I am hoping for early to mid-May so I can heal up enough to enjoy the summer.

[luvmybees24]

Hi Pam! Didn't they give you Vicoden? I was on it around the clock for a good 2 weeks. It was horrible. I felt like someone slugged me in the hip. As soon as I got on my belly in bed I could fall asleep but moving to get up or in bed was agonizing. I am just happy I didn't have to recover from it in the hospital! That would have been horrible!

[pamsouth]

I would wait on TREY, to say.  But my PCR's and fish are done without BMB, the just take the blood thru the vein in the arm.  I will see if I can find that video that someone put out, Where Dr Luckard, said  "that after diagnoses you don't need another BMB ( or at least not after the first year and you are responding properly"  unless there is a good reason, like losing your response to TKI Drugs.

PamSouth

[luvmybees24]

He told me I probably wouldn't need anymore after this one. I replied that was good because I WILL NOT be having another one, ever. I guess if I have to suck it up and do it so they can prove I'm in remission or whatever its called (what is the right term?) then I will do it. I just hope the surgeon enjoys a challenge and only has to poke me ONCE this time. Oh, does everyone get them from the side or from behind in the butt? I had mine on the side of my hip which i prefer. I can't imagine having my butt be sore with all the bending that area does.

[Judy2]

Hi Laura,

I am so sorry you have to go through another BMB but hopefully this will be the last one. Why does your doctor think you are still having pain? I had my BMB at the very top of the butt with just novacaine. It was extremely painful while they were doing it but sore for only 24 hours after that. I wonder if your doctor hit a nerve. What does your pain feel like, is it a burning pain? Do you think an anti-inflammatory or Neurontin (which is med for nerve problems) would help instead of painkillers? Do you think getting it in a different location would be a good idea? Also, why isn't your onc. doing the BMB, why are you having it done by an orthopedic surgeon? Laura, I  know this is lousy but we will be here to give you support. Sorry we can't take away the pain. but at least you know that you are not alone in this.

Hugs,

Judy

[Trey]

As I said in your other posting, I would have a second PCR after several months to confirm the intial 3 log reduction (MMR), and if it is also MMR, then forget the BMB. 

You have two very good reasons to NOT have another BMB unless PCR shows a loss of response. 

1) First is that the NCCN Guidelines for Treatment of CML say that a BMB is not needed after CCyR unless there is a loss of CCyR.  Although the NCCN says do a BMB at 6 and 12 months, it adds that achievement of CCyR makes the it unnecessary.  Your Onc is saying that he can only prove CCyR by a marrow test, which is not accurate.  FISH would be negative if PCR is over 2 log reduction; and you are well beyond that.  If your PCR proves MMR, then by definition you have achieved CCyR. 

2) Secondly, you have said that the BMB for you actually requires cutting tissue first to find the bone.  That is very invasive and can cause secondary complications, as you have already experienced.  Because of that, this invasive procedure should only be done when absolutely the only possible course of action, which in this case it is not.

You should discuss this with your Onc.  Tell him to read the NCCN Guidelines for Treatment of CML about testing after CCyR is achieved.  If that fails, you can just refuse.  If he drops you, then you are better off.

[luvmybees24]

Thanks Trey! I am sorry I am such a pain about this. Can FISH testing be done on peripheral blood? He told me it could only be done on marrow. What I think I am going to do is get a second opinion. I don't know of an exact doctor to go to but I know there are experts at U of M, which is only an hour away from me. I guess I will find someone and make an appt. It sure sounds to me that with a PCR as low as mine, a BMB wouldn't be necessary. Especially in someone like me where it's hard to get at the marrow. If I don't get a BMB will they be able to treat me properly? Just doing PCR's to monitor? I know I will have to continue to take the Tasigna regardless, he just said it may be less if I'm in CCyR.

[pamsouth]

Luvmybees.   I was diagnosed in 2005.  The only time I had a bone marrow biopsy, was before diagnoses and 1 year later.  So the last BMB was in 2006.  All my Fish & PCR are done peripheral blood.

There was a video on one of these threads about how often to do the BMB the speaker was Dr Akard of St Francis Indianapolis, I thought he did a good job.  I couldn't find it in my search, it's probably under whoever conducted the video.

Anyhow Trey answered that your question very throughly.

It makes me wonder why doctors insist on the BMB when there is no need. 

More and more patients are becoming educated thru sites like this.  That way we are not totally in the dark.  I have found not all doctors have your best interest at heart or perhaps a better way to say that is, they are not expert in the field, even though their title says oncologist.

I had been with my old oncologist for 6 years but am starting with a new CML Expert, this coming Monday March 19, 2012.  I have been to him once for a second consultation, he has a totally different view of my previous oncologist. He is at the number 1 leading Leukemia Cancer Center here in Indiana.  I didn't feel I had a need to change until my previous onc said lets change to a newer better drug.  So I definitly wanted a second opinion for an expert.  I don't take some things lightly, until I feel comfortably with it and I think the doctor know what he is doing.  It's your life in his/her hands.

PamSouth

PamSouth

[luvmybees24]

Thanks Pam! I am definitely going to see an expert at U of M. Going to call on Monday. From what I have read from everyone, I don't see a need for a BMB. I need another oncologist and wish I knew of one right around my house but if I have to drive an hour to see an expert in CML, then that's not all that bad. My doctor said FISH can't be done on peripheral blood and that scares me if he doesn't know it can be!!!!