Treatment Questions

[Guest guest]

Kat:

Good questions. Can't wait to see replies.

Jim

-----Original Message-----From: [mailto: ]On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 4:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Kat:

Good questions. Can't wait to see replies.

Jim

-----Original Message-----From: [mailto: ]On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 4:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Great questions! I've always assumed the brighter, louder or higher on the scale is the more "positive" direction for any training. Maybe that is in error but if it is then every design needs a major big red flag description!

--

Do Something Useful

treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Great questions! I've always assumed the brighter, louder or higher on the scale is the more "positive" direction for any training. Maybe that is in error but if it is then every design needs a major big red flag description!

--

Do Something Useful

treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Kat, good questions, I'll jump in here...and someone will surely correct me if I steer you wrong:

1)< yes, M2 is R mastoid

2) same reference: you need to put two references there, unless you have a "jumper cable" to combine them. You can put two ear clips side-by-side; or you can use a little paste between two leads and stack them (like for at Cz).

3) constant MIDI sounds: yep, this got me too, at first, but Pete explained it that the brain is constantly looking for patterns and relationships, and it figures out the patter pretty quickly. There is usually a second MIDI that only sounds a 'ding' infrequently. I simply tell the client that when they hear the ding, they are doing really well, but they won't hear it all the time. I don't usually tell them to go for the high or low notes (those you can set yourself in the MIDI properties. The box labeled 'note range' on the left is for low amplitude, and on the right for high amplitude.)

4) I go more for the symptoms...sometimes the numbers don't really change, but the person does. We don't really know what we are impacting, just that it's making a difference. Some people really want to know they did good on the numbers though....these are usually the people that I need to encourage to listen to their body more...

Hope this helps, and good questions!

treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Kat, good questions, I'll jump in here...and someone will surely correct me if I steer you wrong:

1)< yes, M2 is R mastoid

2) same reference: you need to put two references there, unless you have a "jumper cable" to combine them. You can put two ear clips side-by-side; or you can use a little paste between two leads and stack them (like for at Cz).

3) constant MIDI sounds: yep, this got me too, at first, but Pete explained it that the brain is constantly looking for patterns and relationships, and it figures out the patter pretty quickly. There is usually a second MIDI that only sounds a 'ding' infrequently. I simply tell the client that when they hear the ding, they are doing really well, but they won't hear it all the time. I don't usually tell them to go for the high or low notes (those you can set yourself in the MIDI properties. The box labeled 'note range' on the left is for low amplitude, and on the right for high amplitude.)

4) I go more for the symptoms...sometimes the numbers don't really change, but the person does. We don't really know what we are impacting, just that it's making a difference. Some people really want to know they did good on the numbers though....these are usually the people that I need to encourage to listen to their body more...

Hope this helps, and good questions!

treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Kat,

1. A2 refers to the right ear lobe, M2 refers to behind the right ear.

2. You have to have something plugged into both references. By far the easiest way is to use a jumper.

3 and 4 are very good questions.

3. The signal input will cause the MIDI feedback (pitch and volume) to vary with the signal. I myself am skeptical about this, because when training myself I find the variation in notes pleasing in itself. I always have the volume vary as well to help with this (very soft in the undesired direction). The occasional bell ding does help some.

I think people differ in what kind of feedback works best for them. And of course training myself is different than being trained, because I know what is "supposed" to happen. Even tho I am very much the "how am I doing" type, I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy.

4. There are two outcome measures. Whether the brain moved in the direction it was trained to move. And whether the person reports the improvements they were looking for. Obviously the second is more important, and you need to know. You should also certainly know whether the first has occurred. You should have a trend graph for within the session. And you should have data for between sessions.

I haven't trained other people. I think, tho, I would say something like, I would like your report over the first few sessions about any changes you are experiencing. I don't want to bias you by anything I would say. About what to do if you get no positive response from them, I will defer to those with a lot of experience training other people. Some of whom no doubt will say, the right protocol will work if you use it long enough, and others will say, switch protocols if you don't get results after a few sessions. You yourself will have to learn what you believe works best.

I know people in the field say, trainees can report results even if the brainwaves don't seem to change. This is certainly possible, if we are showing the brain new ways of being, which won't always be appropriate in a given situation.

Foxx

-----Original Message-----From: [mailto: ] On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 2:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Kat,

1. A2 refers to the right ear lobe, M2 refers to behind the right ear.

2. You have to have something plugged into both references. By far the easiest way is to use a jumper.

3 and 4 are very good questions.

3. The signal input will cause the MIDI feedback (pitch and volume) to vary with the signal. I myself am skeptical about this, because when training myself I find the variation in notes pleasing in itself. I always have the volume vary as well to help with this (very soft in the undesired direction). The occasional bell ding does help some.

I think people differ in what kind of feedback works best for them. And of course training myself is different than being trained, because I know what is "supposed" to happen. Even tho I am very much the "how am I doing" type, I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy.

4. There are two outcome measures. Whether the brain moved in the direction it was trained to move. And whether the person reports the improvements they were looking for. Obviously the second is more important, and you need to know. You should also certainly know whether the first has occurred. You should have a trend graph for within the session. And you should have data for between sessions.

I haven't trained other people. I think, tho, I would say something like, I would like your report over the first few sessions about any changes you are experiencing. I don't want to bias you by anything I would say. About what to do if you get no positive response from them, I will defer to those with a lot of experience training other people. Some of whom no doubt will say, the right protocol will work if you use it long enough, and others will say, switch protocols if you don't get results after a few sessions. You yourself will have to learn what you believe works best.

I know people in the field say, trainees can report results even if the brainwaves don't seem to change. This is certainly possible, if we are showing the brain new ways of being, which won't always be appropriate in a given situation.

Foxx

-----Original Message-----From: [mailto: ] On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 2:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Foxx,

Regarding the comment "I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy."

I personally for myself find the "if it dings, you sing!" way of feedback great in many cases. My only problem is that by looking at some of the designs getting frequent dings also means that you are training yourself to "flutter" over a constant "ding point". If the "ding point" is moving down/up as required (manually or on auto) this is as desired. But mentally I'm still struggling with the concept of the flutter, even though this is probably the natural process of what we are measuring in the brain.

--

Do Something Useful

RE: treatment questions

Kat,

1. A2 refers to the right ear lobe, M2 refers to behind the right ear.

2. You have to have something plugged into both references. By far the easiest way is to use a jumper.

3 and 4 are very good questions.

3. The signal input will cause the MIDI feedback (pitch and volume) to vary with the signal. I myself am skeptical about this, because when training myself I find the variation in notes pleasing in itself. I always have the volume vary as well to help with this (very soft in the undesired direction). The occasional bell ding does help some.

I think people differ in what kind of feedback works best for them. And of course training myself is different than being trained, because I know what is "supposed" to happen. Even tho I am very much the "how am I doing" type, I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy.

4. There are two outcome measures. Whether the brain moved in the direction it was trained to move. And whether the person reports the improvements they were looking for. Obviously the second is more important, and you need to know. You should also certainly know whether the first has occurred. You should have a trend graph for within the session. And you should have data for between sessions.

I haven't trained other people. I think, tho, I would say something like, I would like your report over the first few sessions about any changes you are experiencing. I don't want to bias you by anything I would say. About what to do if you get no positive response from them, I will defer to those with a lot of experience training other people. Some of whom no doubt will say, the right protocol will work if you use it long enough, and others will say, switch protocols if you don't get results after a few sessions. You yourself will have to learn what you believe works best.

I know people in the field say, trainees can report results even if the brainwaves don't seem to change. This is certainly possible, if we are showing the brain new ways of being, which won't always be appropriate in a given situation.

Foxx

-----Original Message-----From: [mailto: ] On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 2:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

Foxx,

Regarding the comment "I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy."

I personally for myself find the "if it dings, you sing!" way of feedback great in many cases. My only problem is that by looking at some of the designs getting frequent dings also means that you are training yourself to "flutter" over a constant "ding point". If the "ding point" is moving down/up as required (manually or on auto) this is as desired. But mentally I'm still struggling with the concept of the flutter, even though this is probably the natural process of what we are measuring in the brain.

--

Do Something Useful

RE: treatment questions

Kat,

1. A2 refers to the right ear lobe, M2 refers to behind the right ear.

2. You have to have something plugged into both references. By far the easiest way is to use a jumper.

3 and 4 are very good questions.

3. The signal input will cause the MIDI feedback (pitch and volume) to vary with the signal. I myself am skeptical about this, because when training myself I find the variation in notes pleasing in itself. I always have the volume vary as well to help with this (very soft in the undesired direction). The occasional bell ding does help some.

I think people differ in what kind of feedback works best for them. And of course training myself is different than being trained, because I know what is "supposed" to happen. Even tho I am very much the "how am I doing" type, I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy.

4. There are two outcome measures. Whether the brain moved in the direction it was trained to move. And whether the person reports the improvements they were looking for. Obviously the second is more important, and you need to know. You should also certainly know whether the first has occurred. You should have a trend graph for within the session. And you should have data for between sessions.

I haven't trained other people. I think, tho, I would say something like, I would like your report over the first few sessions about any changes you are experiencing. I don't want to bias you by anything I would say. About what to do if you get no positive response from them, I will defer to those with a lot of experience training other people. Some of whom no doubt will say, the right protocol will work if you use it long enough, and others will say, switch protocols if you don't get results after a few sessions. You yourself will have to learn what you believe works best.

I know people in the field say, trainees can report results even if the brainwaves don't seem to change. This is certainly possible, if we are showing the brain new ways of being, which won't always be appropriate in a given situation.

Foxx

-----Original Message-----From: [mailto: ] On Behalf Of Kat DuffSent: Tuesday, July 26, 2005 2:29 PM Subject: treatment questions

Dear Pete and other s:

Having completed several assessments, I've begun to treat myself and a few (brave) friends, and I find I have a few basic questions:

1) Does M2 refer to the right mastoid? (ie A2)

2) When a 2-channel protocol calls for using the same reference site (ex: C3/A1/g/P3/A1), do you put one of the reference electrodes there & trust both channels will use it, or do you (somehow) put both reference electrodes there?

3) When using MIDI sounds for rewards, it makes sense to me that the threshold object "pass/fail" output would be connected to the MIDI enable input, but I don't understand having the "signal" output connect to the MIDI. How would the brain make use of reward that is constant? Must it vary the sound somehow, by note, pitch or volume? If so, should we tell clients that higher or louder notes are better, or will the brain figure it out on its own?

4) What are we looking for when someone is doing a session? I know it varies according to the protocol, and the subjective experience is most important, but people ask me how they did and I always say "great"; but honestly, I don't know whether their brains "learned" anything or not. All I know to look for (since so many protocols show amplitude on the trainer's screen) is a general quieting. I generally start on auto threshold and once it stablizes, adjust to manual in accordance with the clients need for more or less feedback and try to make it a little harder when it seems too easy, but that's it. Am I missing something? Do we look for the changes in activation patterns we are treating, or does is not really matter as long as symptoms are addressed?

thanks

[Guest guest]

,

I think you may be referring to feedback that occurs whenever you cross the threshold. I personally don't think that is a good idea. Feedback that occurs when you are above (or below) threshold shouldn't cause flutter. If I'm understanding what you are saying.

Foxx

-----Original Message-----From: [mailto: ] On Behalf Of ASent: Tuesday, July 26, 2005 9:54 PM Subject: Re: treatment questions

Foxx,

Regarding the comment "I often find a simple bell sound every time the brain is going the right way, which makes it very clear "how I am doing," works very well with me. When the rate of dings increases, I am happy."

I personally for myself find the "if it dings, you sing!" way of feedback great in many cases. My only problem is that by looking at some of the designs getting frequent dings also means that you are training yourself to "flutter" over a constant "ding point". If the "ding point" is moving down/up as required (manually or on auto) this is as desired. But mentally I'm still struggling with the concept of the flutter, even though this is probably the natural process of what we are measuring in the brain.

--

Do Something Useful

[Guest guest]

Hi,

I haven't written in a while but now I find myself needing some feedback. I am

now 37 years old and was dx a little over a year ago in Jan 2008. Originally

based on all my blood work and scans I was supposed to be in w & w for many many

years before needing treatment. Unfortunately in April of this year I started

having symptoms - enlarged lymph nodes under my arms (the size of a golf ball)

and on my neck and my wbc jumped to 238. My Dr said I need to start the

" typical " FCR treatment right away. I went to Boston (Dana Farber) for a second

opinion on my treatment plan (FCR) as well as a consultation to become familiar

with Stem cell transplant. Again I was told the stem cell part was a premature

conversation that is until the Dr saw my FISH test results done on April 16th

2009.

The FISH test paperwork says: Process - PB Direct, Karyotype: nuc ish: deletion

of P53 in 90%. Report: Interphase FISH with 6 probes (Vysis/Abbott Molecular)

was performed on peripheral blood cells: nuc ish 13q14.3 (D13S319x2),

13q34(LAMP1x2)(D12Z1x2) [200] / (IGHx2) [200]/ 17p13.1 (P53x1), 11q22.3 (ATMx2)

[180/200]. Interpretation: Interphase FISH results are consistent with 90% cells

showing deletion of P53. Other 5 tested loci were present in disomy (normal copy

number). These are the most frequent chromosomal rearrangements associated with

CLL (Dohner et al NEJM 2000). Other molecular genomic defects may be present.

Deletion of P53 at 17p13.1 chromosomal site is associated with unfavorable

prognosis.

Flow Cytometric Findings on April 16, 2009 were: Abnormal Cells 92% small sized

(forward light scatter properties) monoclonal B-cells with a lambda (+),

CD45(+), CD5(+), CD19(+), CD20(-), CD23(+), HLA-DR(+), CD52(+), (95.1% of clonal

cells are positive), CD38(+) (32.8% of the clonal cells are positive), ZAP

70(-), (0.7% of the colonal cells are positive), CD10(-), FMC-7(-), kappa(-)

phenotype. Specimen Viability: 99%, DNA content analysis of all cells shows a

diploid pattern with a low S-Phase fraction.

On May 19th I received Fludora, Mesna and Cytoxan for 3 days and then waited 2

weeks before receiving the exact same treatment. My Dr. kept telling me he

wanted my WBC count to go down before starting Rituxan. At the start of my 3rd

treatment (June 29th) it finally went down to 33 and yet he still did not start

it. I never really did understand why. To date I have had 3 rounds of FC

treatment and today I finally started the Rituxan. I was also given what felt

like a large does of Benadryl. It drastically lowered my blood pressure and

made me feel very uncomfortable. Also I was told that I will now need to come

in once a week for my Rutixan treatments bec Rutixan is cumulative and the Dr

feels it will work better this way. He also wants me to try to have 8 treatments

before getting a bone marrow transplant. He expects my treatments to be

completed by January 2010.

I forgot to get a copy of today's blood work. My last blood work was taken on

6/30/2009 my #'s were:

WBC 34.1 LYM 89.8

RBC 2.96 MON 5.6

HGB 9.7 GRA 4.6

HCT 27.2

PLT 149

My Questions are:

- Does anyone have any feedback on the separation of the FCR treatments?

- Is Benadryl really necessary?

- During treatment can lymph nodes enlarge again after shrinking?

- What are the amounts of FCR given in the " typical recipe " ?

- Do the FCR amounts change throughout the corse of treatment?

- Can I ask the Dr to give me this information to keep for my records every time

I receive treatment?

- If I am having doubts about my treatment can I or should I get a second

opinion?

Thank you for taking the time to read this extremely lengthy e-mail.

Sincerely,

Suzanne

[Guest guest]

Suzanne,

I will add to Pat’s reply that it is normal to wait with the Rituxan until your white counts drop from FC treatment. This is to not overload your kidneys and liver with getting rid of dead white cells. Rituxan is so effective in killing white cells that it is held back until there are not so many of them.

If you are receiving your treatment in a center treating many CLL patients, they have had a lot of experience keeping down the most severe side-effects. Keep them informed about how you feel at all times, and by all means get the record of exactly what you were given, and over how much time.

You can always get a second opinion! Can you talk to the same folks at Dana Farber?

Hang in there! Your body is going through quite a bit with the treatment of your high white count. It will take awhile to feel “normal” again.

Others will chime in on your other questions. Try to rest easy and let your body recover.

I’m sending calming thoughts your way.

Marcia

on 7/8/09 11:02 PM, suzanne0704 at suzanne0704@... wrote:

Hi,

I haven't written in a while but now I find myself needing some feedback. I am now 37 years old and was dx a little over a year ago in Jan 2008. Originally based on all my blood work and scans I was supposed to be in w & w for many many years before needing treatment. Unfortunately in April of this year I started having symptoms - enlarged lymph nodes under my arms (the size of a golf ball) and on my neck and my wbc jumped to 238. My Dr said I need to start the " typical " FCR treatment right away. I went to Boston (Dana Farber) for a second opinion on my treatment plan (FCR) as well as a consultation to become familiar with Stem cell transplant. Again I was told the stem cell part was a premature conversation that is until the Dr saw my FISH test results done on April 16th 2009.

The FISH test paperwork says: Process - PB Direct, Karyotype: nuc ish: deletion of P53 in 90%. Report: Interphase FISH with 6 probes (Vysis/Abbott Molecular) was performed on peripheral blood cells: nuc ish 13q14.3 (D13S319x2), 13q34(LAMP1x2)(D12Z1x2) [200] / (IGHx2) [200]/ 17p13.1 (P53x1), 11q22.3 (ATMx2) [180/200]. Interpretation: Interphase FISH results are consistent with 90% cells showing deletion of P53. Other 5 tested loci were present in disomy (normal copy number). These are the most frequent chromosomal rearrangements associated with CLL (Dohner et al NEJM 2000). Other molecular genomic defects may be present. Deletion of P53 at 17p13.1 chromosomal site is associated with unfavorable prognosis.

Flow Cytometric Findings on April 16, 2009 were: Abnormal Cells 92% small sized (forward light scatter properties) monoclonal B-cells with a lambda (+), CD45(+), CD5(+), CD19(+), CD20(-), CD23(+), HLA-DR(+), CD52(+), (95.1% of clonal cells are positive), CD38(+) (32.8% of the clonal cells are positive), ZAP 70(-), (0.7% of the colonal cells are positive), CD10(-), FMC-7(-), kappa(-) phenotype. Specimen Viability: 99%, DNA content analysis of all cells shows a diploid pattern with a low S-Phase fraction.

On May 19th I received Fludora, Mesna and Cytoxan for 3 days and then waited 2 weeks before receiving the exact same treatment. My Dr. kept telling me he wanted my WBC count to go down before starting Rituxan. At the start of my 3rd treatment (June 29th) it finally went down to 33 and yet he still did not start it. I never really did understand why. To date I have had 3 rounds of FC treatment and today I finally started the Rituxan. I was also given what felt like a large does of Benadryl. It drastically lowered my blood pressure and made me feel very uncomfortable. Also I was told that I will now need to come in once a week for my Rutixan treatments bec Rutixan is cumulative and the Dr feels it will work better this way. He also wants me to try to have 8 treatments before getting a bone marrow transplant. He expects my treatments to be completed by January 2010.

I forgot to get a copy of today's blood work. My last blood work was taken on 6/30/2009 my #'s were:

WBC 34.1 LYM 89.8

RBC 2.96 MON 5.6

HGB 9.7 GRA 4.6

HCT 27.2

PLT 149

My Questions are:

- Does anyone have any feedback on the separation of the FCR treatments?

- Is Benadryl really necessary?

- During treatment can lymph nodes enlarge again after shrinking?

- What are the amounts of FCR given in the " typical recipe " ?

- Do the FCR amounts change throughout the corse of treatment?

- Can I ask the Dr to give me this information to keep for my records every time I receive treatment?

- If I am having doubts about my treatment can I or should I get a second opinion?

Thank you for taking the time to read this extremely lengthy e-mail.

Sincerely,

Suzanne