Question

[Guest guest]

Reactive lymphocyte is an enlarged lymphocyte. The reason for the enlargement can be a viral infection or the side effect of some medications. It's not related to CLL.

Andy

question

Hi!Can anyone tell me...............are reactive lymphocytes NORMAL(non-cll) lymphocytes?Thanks,Ellen

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[Guest guest]

CLL/SLL Friends and especially Ellen & ,

It is so good to share these queries, for possibly professional, as has stated, may have considered a link between mono and CLL. By getting the word out, as you have on this post, you make that information available, which might never surface except for this medium.

I recall that almost 50 years ago when my first husband was dealing with Hodgkin Lymphoma to which he succumbed in 1969, we questioned a number of things that might have been "triggers" to his disease. These included making "homemade choke cherry wine", of which he drank VERY little; to paneling our basement with "pecky Cypress" boards that had to be cleaned out with a wire brush, creating wood dust which he undoubtedly inhaled; to being extremely frightened when our 16-month old daughter was accidentally backed over with her grandfather's pickup; to having radiation treatments on his facial acne in his twenties. (By the way, that daughter is a 50-yr. old mother of two lovely children and healthy herself). We had no support group with which to share these possible triggers to the disease showing itself with the first lymph node's appearance just three weeks after that accident.

So, keep questioning, folks; you may get some answers, and perhaps more people who speak up about possible connections.

Norma Oxley

dx 12/05; tx 2/06 to 3/06 w/six weekly Rituximab infusions. Still doing very well. An active, healthy 72-yr. old.

In a message dated 2/28/2010 4:45:51 P.M. US Mountain Standard Time, kjohnsonmay@... writes:

Hi Ellen:I also wondered about the same question. I had mono at 14 years of agewith lymph nodes, sore throat and oatmeal rash. Then, again at 23years I had mono with enlarged spleen.In the interim, I developed an unusual clotting/platelet problem thathas continued to elude explanation.I bet some researcher out there has considered a possible link betweenthe mono and CLL. It will be interesting to see other responses.>> Has anyone besides me been struck by the similarities between cll and> infectious mononucleosis? I tested positive for all EBV> antibodies.............Mono has the same symptoms as cll. Enlarged> nodes, spleen, etc., etc.. I wonder if my cll was triggered by EBVfrom> many years ago. Any thoughts?> Ellen>

[Guest guest]

Hi Ellen:

I also wondered about the same question. I had mono at 14 years of age

with lymph nodes, sore throat and oatmeal rash. Then, again at 23

years I had mono with enlarged spleen.

In the interim, I developed an unusual clotting/platelet problem that

has continued to elude explanation.

I bet some researcher out there has considered a possible link between

the mono and CLL. It will be interesting to see other responses.

>

> Has anyone besides me been struck by the similarities between cll and

> infectious mononucleosis? I tested positive for all EBV

> antibodies.............Mono has the same symptoms as cll. Enlarged

> nodes, spleen, etc., etc.. I wonder if my cll was triggered by EBV

from

> many years ago. Any thoughts?

> Ellen

>

[Guest guest]

How are you so sure it's not related to cll?

Thanks,

Ellen R.

Gach wrote:

Reactive lymphocyte

is an enlarged lymphocyte. The reason for the enlargement can be

a viral infection or the side effect of some medications. It's not

related to CLL. Andy

[Guest guest]

Rituxan alone is not considered to be the optimal TX for naive CLL. The original idea behind Rituxan as first line TX was, I think, for use with follicular NHL, where CD20 is strongly expressed.

The optimal dose is considered to be 375mg/m2. People (Dr. O'Brien at MDA) have used much larger doses. Dr. Chesson once said that the limit of Rituxan is not medical but financial, i.e. how much can be paid for. :-)

I do not know of people dosing at less than 375. Why would they?

In a message dated 3/15/2010 8:00:08 P.M. Eastern Daylight Time, rhudy@... writes:

Thanks for your advice, however, the last oncologist I had at s Hopkins suggested rituxan only as a first-line tx.. I'll bear in mind what you wrote about the amount of CD20. So, is it less, or more, CD20 that makes rituxan work well? Thanks, Ellen R.

[Guest guest]

Just because some people do well on Rituxan does not mean you will.

It depends on many factors, the most important the amount of CD20 you have.

Rituxan is not approved anywhere that I'm aware of as a mono therapy for CLL.

You may be able to get it on a drug plan, but it is off-label use.

If you want to use a monoclonal antibody, you would be wise to look

to the second or third generations mAbs like Ofatumumab or GA-101

both are in clinical trials. They are considered more potent than Rituxan and

have

fewer side effects.

~chris

[Guest guest]

Thanks for your advice, however, the last oncologist I had at s Hopkins

suggested rituxan only as a first-line tx.. I'll bear in mind what

you wrote about the amount of CD20. So, is it less, or more, CD20

that makes rituxan work well?

Thanks,

Ellen R.

cllcanada wrote:

Just because some people do well on Rituxan does not

mean you will.

It depends on many factors, the most important the amount of CD20 you

have.

Rituxan is not approved anywhere that I'm aware of as a mono therapy

for CLL.

You may be able to get it on a drug plan, but it is off-label use.

If you want to use a monoclonal antibody, you would be wise to look

to the second or third generations mAbs like Ofatumumab or GA-101

both are in clinical trials. They are considered more potent than Rituxan

and have

fewer side effects.

~chris

[Guest guest]

The dose of rituxin is very arbitrary, largely based on the amount that the company had and the numbers that they wanted to treat. In view of the reduced density of CD20 on CLL cells the dose (after the first one) for CLL is higher than for lymphoma at 500 mg/m2. O'Brien conducted a study of higher doses (up to 2000 mg/m2) and there was some improvement in performance, but obviously not enough to change the routine of the MDACC.

However, various scientists (especially Ron ) have demonstrated that after even a small dose of rituxin (<60 mg) any remaining CLL cells have lost their CD20 from the surface and it does not reappear for 2-3 days or even longer in some cases. calls this antigen shaving, though it seems very similar to what we called antigenic modulation in the 1980s. Because of this some trials of low dose rituxin given more frequently have been taking place. In the UK a trial of FCR versus FCminiR is underway.

Obviously there are cost advantages to this approach and the British trial is being funded by the NHS. There may be a different response to rituxin with circulating cells compared with cells in lymph nodes, so watching this sort of trial will be interesting.

Terry Hamblin MD

[Guest guest]

I can't answer your question, except to say that a s Hopkins oncologist

told me that he would start me on 50 mg. of rituxan and build up the doses

slowly over time, due to high WBCs. Apparently, he feels that it

would do the trick, or else he's well aware of the side effects of chemo.

Ellen R.

jb50192@... wrote:

Rituxan

alone is not considered to be the optimal TX for naive CLL. The original

idea behind Rituxan as first line TX was, I think, for use with follicular

NHL, where CD20 is strongly expressed. The

optimal dose is considered to be 375mg/m2. People (Dr. O'Brien at MDA)

have used much larger doses. Dr. Chesson once said that the limit of Rituxan

is not medical but financial, i.e. how much can be paid for. :-)

I do not know of

people dosing at less than 375. Why would they?

In a message dated

3/15/2010 8:00:08 P.M. Eastern Daylight Time, rhudy@... writes:

Thanks

for your advice, however, the last oncologist I had at s Hopkins suggested

rituxan only as a first-line tx.. I'll bear in mind what you wrote

about the amount of CD20. So, is it less, or more, CD20 that makes

rituxan work well?

Thanks,

Ellen R.

[Guest guest]

>>Less or more

The more you have the better. It is the surface protein on the B-cells

that Rituxan actually attaches to. The more you have the more attachment

and the better Rituxan works.

However you should be aware that with each round of treatment

Rituxan uses up some of the CD20, until you reach a point it no longer

works at all. This is called being Rituxan refractory.

Yearly clinical trials with Rituxan as a mono-therapy found about

3 rounds was the maximum for most CLL patients.

~chris

>

> > Just because some people do well on Rituxan does not mean you will.

> >

> > It depends on many factors, the most important the amount of CD20 you

> > have.

> >

> > Rituxan is not approved anywhere that I'm aware of as a mono therapy

> > for CLL.

> > You may be able to get it on a drug plan, but it is off-label use.

> >

> > If you want to use a monoclonal antibody, you would be wise to look

> > to the second or third generations mAbs like Ofatumumab or GA-101

> > both are in clinical trials. They are considered more potent than

> > Rituxan and have

> > fewer side effects.

> >

> > ~chris

> >

>

[Guest guest]

3 rounds meaning what? once a week for 3 weeks, then wait a month,

then another?

Ellen R.

cllcanada wrote:

>>Less or more

The more you have the better. It is the surface protein on the B-cells

that Rituxan actually attaches to. The more you have the more attachment

and the better Rituxan works.

However you should be aware that with each round of treatment

Rituxan uses up some of the CD20, until you reach a point it no longer

works at all. This is called being Rituxan refractory.

Yearly clinical trials with Rituxan as a mono-therapy found about

3 rounds was the maximum for most CLL patients.

~chris

>

> > Just because some people do well on Rituxan does not mean you will.

> >

> > It depends on many factors, the most important the amount of CD20

you

> > have.

> >

> > Rituxan is not approved anywhere that I'm aware of as a mono therapy

> > for CLL.

> > You may be able to get it on a drug plan, but it is off-label use.

> >

> > If you want to use a monoclonal antibody, you would be wise to

look

> > to the second or third generations mAbs like Ofatumumab or GA-101

> > both are in clinical trials. They are considered more potent than

> > Rituxan and have

> > fewer side effects.

> >

> > ~chris

[Guest guest]

Hi, I was dx 5 yrs. ago at age 50 and just started R only tx 3 weeks ago, I have one full day of R this Friday left to do. I went from wbc of 175,000 to 80,000 as of the start of last Friday IV. I'll have my cbc again this Friday and then one more cbc the following week. I had 200mg on Mon., Wed., and Fri. the first week than 600mg each Friday following. After 1/2 hour of R on my first 600mg day my blood pressure dropped to 70/30, I said I wasn't feeling well and we stopped the IV for 1/2 hour, my BP came back and we finished the TX. I went to the gym for 1 1/2 hours each day following the tx day and cycled on Sun, for 30 miles and 45 the second Sun. I have no symptoms, feel great and am never tired. I hope this continues and I will report in one week with the new results Steve question > Has anyone on this list had good success with rituxan only as a> first-line tx.?> Thanks,> Ellen R.> > >

[Guest guest]

You are amazing! To go right from tx to exercising. Did you

have pre-meds, what were they, and were they by mouth or IV? Did

you have very large lymph nodes, or a very large spleen? I wish you

the best of luck.

Ellen R.

stevecagg@... wrote:

Hi, I was dx 5 yrs. ago at age 50 and just

started R only tx 3 weeks ago, I have one full day of

R this Friday left to do. I went from wbc of 175,000 to 80,000 as

of the start of last Friday IV. I'll have my cbc again this Friday

and then one more cbc the following week. I had 200mg on Mon., Wed.,

and Fri. the first week than 600mg each Friday following. After 1/2

hour of R on my first 600mg day my blood pressure dropped to 70/30,

I said I wasn't feeling well and we stopped the IV for 1/2 hour,

my BP came back and we finished the TX. I went to the gym for 1 1/2

hours each day following the tx day and cycled on Sun, for 30 miles and

45 the second Sun. I have no symptoms, feel great and am never

tired. I hope this continues and I will report in one week with

the new results Steve

question

> Has anyone on this list had good success with rituxan only as a

> first-line tx.?

> Thanks,

> Ellen R.

[Guest guest]

Hi Lynn,

 

I looked into this in regard to an buying an RV.  In the case of RV's, the

solar *conversion* machinery (I don't remember the technical name, sorry)

bothers some people with ES/MCS.  However, I was told if you could place this

remotely, it would be okay.  In other words, if it is placed a good distance

from where the ES/MCS person is, it should be okay.  My understanding is it

might also have MCS problems, not just emf problems.  I received this info from

a guy who renovated RV's for people with MCS.  (I think his name was Tad

, if memory serves--he is since deceased) and I have not had personal

experience with solar panels to check that out.

 

Good luck; let us know how it works if you decide to go with it; thanks,

Diane

From: Lynn Rose Demartini <lynn@...>

Subject: question

emfrefugee ,

Date: Sunday, March 28, 2010, 9:39 AM

 

I have a client that posed this question and am wondering if anyone has

explored this..

" Does anybody know if the solar panels are good for our kids health? I am

asking this because we got this very good offer from a company that can

install the solar photovoltaic panels on the roof of our home and we don't

have to own it and pay anything about it - only pay the electricity bills

which will be much lower than what we are paying now and the panels will be

still owned and mainteined from the company. While this is very tempting and

I have always liked the idea of making our home as green as possible, I am

also wondering if this will be better for our and mainly for my kids health.

I know that electricity, EMF radiation and everything wireless is bad, but

what about the electricity generated from solar systems? Is it possible that

this might generate more bad radiation?

Thanks in advance for any information on this topic. "

Lynn Rose Demartini DSH-P, RN, LMT

www.indigocenter. com

www.homeopathyhoust on.com

" If people let government decide what foods they eat and what medicines they

take, their bodies will soon be in as sorry a state as are the souls of

those who live under tyranny. " - Jefferson

" The doctor of the future will give no medicine but will interest his

patients in the care of the human frame, in diet, and in the cause and

prevention of disease. " - Edison

" Let food be thy medicine; medicine thy food " - Hippocrates

" Drugs never cure disease. They merely hush the voice of Nature's protest

and pull down the danger signals she erects along the pathway of

transgression. " - H Kress, MD

" Take no part in the unfruitful works of darkness, but instead expose them. "

- Ephesians 5:11

" Never doubt that a small group of thoughtful committed citizens can change

the world. Indeed, it is the only thing that ever has. " - Margaret Mead

" The only thing necessary for the triumph of evil is that good people do

nothing. " -Edmund Burke

" Our lives begin to end the day we become silent about things that matter. "

- Luther King, Jr

" Liberty can not be preserved without general knowledge among people. "

-

" That which is looked upon by one generation as the apex of human knowledge

is often considered an absurdity by the next, and that which is regarded as

a superstition in one century, may form the basis of science for the

following one! " -Paracelsus

" Blessed are the cracked, for they let in the light. " -Unknown

DO NO HARM!

[Guest guest]

Question

Hello Aunt Keely,

I was hoping you could direct me to more information about something. I am

dealing with a woman who I test is a " warlock " , and I would like to know how to

best handle her. I have an important upcoming meeting with her and she usually

chooses to degrade me in front of about 10 other people. I have come to

understand a " lesson " for me pertaining to her, just yesterday, which is good,

but for the meeting I want to be as prepared as possible. I am hoping that it

will be the last one. I have known her for three years and we have to meet

because of my work 2 - 3 times a year. I see her more often and she scowls at

me, but won't talk with me.

Thank you,

Gloria

[Guest guest]

Hi Lyn,

Solar panels generate dirty electricity, so you would need to measure your

power outlets after installation and remediate the problem.

Cheers, Helen

On Sun, Mar 28, 2010 at 11:39 PM, Lynn Rose Demartini <lynn@...

> wrote:

>

>

> I have a client that posed this question and am wondering if anyone has

> explored this..

>

> " Does anybody know if the solar panels are good for our kids health? I am

> asking this because we got this very good offer from a company that can

> install the solar photovoltaic panels on the roof of our home and we don't

> have to own it and pay anything about it - only pay the electricity bills

> which will be much lower than what we are paying now and the panels will be

> still owned and mainteined from the company. While this is very tempting

> and

> I have always liked the idea of making our home as green as possible, I am

> also wondering if this will be better for our and mainly for my kids

> health.

> I know that electricity, EMF radiation and everything wireless is bad, but

> what about the electricity generated from solar systems? Is it possible

> that

> this might generate more bad radiation?

> Thanks in advance for any information on this topic. "

>

> Lynn Rose Demartini DSH-P, RN, LMT

>

> www.indigocenter.com

>

> www.homeopathyhouston.com

>

> " If people let government decide what foods they eat and what medicines

> they

> take, their bodies will soon be in as sorry a state as are the souls of

> those who live under tyranny. " - Jefferson

>

> " The doctor of the future will give no medicine but will interest his

> patients in the care of the human frame, in diet, and in the cause and

> prevention of disease. " - Edison

>

> " Let food be thy medicine; medicine thy food " - Hippocrates

>

> " Drugs never cure disease. They merely hush the voice of Nature's protest

> and pull down the danger signals she erects along the pathway of

> transgression. " - H Kress, MD

>

> " Take no part in the unfruitful works of darkness, but instead expose

> them. "

> - Ephesians 5:11

>

> " Never doubt that a small group of thoughtful committed citizens can change

> the world. Indeed, it is the only thing that ever has. " - Margaret Mead

>

> " The only thing necessary for the triumph of evil is that good people do

> nothing. " -Edmund Burke

>

> " Our lives begin to end the day we become silent about things that matter. "

> - Luther King, Jr

>

> " Liberty can not be preserved without general knowledge among people. "

> -

>

> " That which is looked upon by one generation as the apex of human knowledge

> is often considered an absurdity by the next, and that which is regarded as

> a superstition in one century, may form the basis of science for the

> following one! " -Paracelsus

>

> " Blessed are the cracked, for they let in the light. " -Unknown

>

> DO NO HARM!

>

>

[Guest guest]

Thanks everyone for your feedback...I will give her this information.

Re: question

Hi Lyn,

Solar panels generate dirty electricity, so you would need to measure your

power outlets after installation and remediate the problem.

Cheers, Helen

On Sun, Mar 28, 2010 at 11:39 PM, Lynn Rose Demartini <lynn@...

> wrote:

>

>

> I have a client that posed this question and am wondering if anyone has

> explored this..

>

> " Does anybody know if the solar panels are good for our kids health? I am

> asking this because we got this very good offer from a company that can

> install the solar photovoltaic panels on the roof of our home and we don't

> have to own it and pay anything about it - only pay the electricity bills

> which will be much lower than what we are paying now and the panels will

be

> still owned and mainteined from the company. While this is very tempting

> and

> I have always liked the idea of making our home as green as possible, I am

> also wondering if this will be better for our and mainly for my kids

> health.

> I know that electricity, EMF radiation and everything wireless is bad, but

> what about the electricity generated from solar systems? Is it possible

> that

> this might generate more bad radiation?

> Thanks in advance for any information on this topic. "

>

> Lynn Rose Demartini DSH-P, RN, LMT

>

> www.indigocenter.com

>

> www.homeopathyhouston.com

>

> " If people let government decide what foods they eat and what medicines

> they

> take, their bodies will soon be in as sorry a state as are the souls of

> those who live under tyranny. " - Jefferson

>

> " The doctor of the future will give no medicine but will interest his

> patients in the care of the human frame, in diet, and in the cause and

> prevention of disease. " - Edison

>

> " Let food be thy medicine; medicine thy food " - Hippocrates

>

> " Drugs never cure disease. They merely hush the voice of Nature's protest

> and pull down the danger signals she erects along the pathway of

> transgression. " - H Kress, MD

>

> " Take no part in the unfruitful works of darkness, but instead expose

> them. "

> - Ephesians 5:11

>

> " Never doubt that a small group of thoughtful committed citizens can

change

> the world. Indeed, it is the only thing that ever has. " - Margaret Mead

>

> " The only thing necessary for the triumph of evil is that good people do

> nothing. " -Edmund Burke

>

> " Our lives begin to end the day we become silent about things that

matter. "

> - Luther King, Jr

>

> " Liberty can not be preserved without general knowledge among people. "

> -

>

> " That which is looked upon by one generation as the apex of human

knowledge

> is often considered an absurdity by the next, and that which is regarded

as

> a superstition in one century, may form the basis of science for the

> following one! " -Paracelsus

>

> " Blessed are the cracked, for they let in the light. " -Unknown

>

> DO NO HARM!

>

>

[Guest guest]

The solar panels do not generate dirty electricity - SOME inverters that convert

DC to ac so you can run your 110v appliances generate intermediate dirty

frequencies.

There is a simple solution for this - there are whole house power conditioners

that can remove this frequency if you purchase a cheep inverter - or just run

12v DC. People that are off the grid often run 12v OLED lights and 12v

appliances - anything that is battery operated or runs on transformers. ( like

portable computers )

On 2010-03-28, at 11:48 PM, Lynn Rose Demartini wrote:

> Thanks everyone for your feedback...I will give her this information.

>

> Re: question

>

> Hi Lyn,

>

> Solar panels generate dirty electricity, so you would need to measure your

> power outlets after installation and remediate the problem.

>

> Cheers, Helen

>

> On Sun, Mar 28, 2010 at 11:39 PM, Lynn Rose Demartini <lynn@...

> > wrote:

>

> >

> >

> > I have a client that posed this question and am wondering if anyone has

> > explored this..

> >

> > " Does anybody know if the solar panels are good for our kids health? I am

> > asking this because we got this very good offer from a company that can

> > install the solar photovoltaic panels on the roof of our home and we don't

> > have to own it and pay anything about it - only pay the electricity bills

> > which will be much lower than what we are paying now and the panels will

> be

> > still owned and mainteined from the company. While this is very tempting

> > and

> > I have always liked the idea of making our home as green as possible, I am

> > also wondering if this will be better for our and mainly for my kids

> > health.

> > I know that electricity, EMF radiation and everything wireless is bad, but

> > what about the electricity generated from solar systems? Is it possible

> > that

> > this might generate more bad radiation?

> > Thanks in advance for any information on this topic. "

> >

> > Lynn Rose Demartini DSH-P, RN, LMT

> >

> > www.indigocenter.com

> >

> > www.homeopathyhouston.com

> >

> > " If people let government decide what foods they eat and what medicines

> > they

> > take, their bodies will soon be in as sorry a state as are the souls of

> > those who live under tyranny. " - Jefferson

> >

> > " The doctor of the future will give no medicine but will interest his

> > patients in the care of the human frame, in diet, and in the cause and

> > prevention of disease. " - Edison

> >

> > " Let food be thy medicine; medicine thy food " - Hippocrates

> >

> > " Drugs never cure disease. They merely hush the voice of Nature's protest

> > and pull down the danger signals she erects along the pathway of

> > transgression. " - H Kress, MD

> >

> > " Take no part in the unfruitful works of darkness, but instead expose

> > them. "

> > - Ephesians 5:11

> >

> > " Never doubt that a small group of thoughtful committed citizens can

> change

> > the world. Indeed, it is the only thing that ever has. " - Margaret Mead

> >

> > " The only thing necessary for the triumph of evil is that good people do

> > nothing. " -Edmund Burke

> >

> > " Our lives begin to end the day we become silent about things that

> matter. "

> > - Luther King, Jr

> >

> > " Liberty can not be preserved without general knowledge among people. "

> > -

> >

> > " That which is looked upon by one generation as the apex of human

> knowledge

> > is often considered an absurdity by the next, and that which is regarded

> as

> > a superstition in one century, may form the basis of science for the

> > following one! " -Paracelsus

> >

> > " Blessed are the cracked, for they let in the light. " -Unknown

> >

> > DO NO HARM!

> >

> >

[Guest guest]

No. TLS is caused by too rapid white cell death. These cells dump their

contents into the blood and it becomes toxic and backs-up the kidneys,

causing a number of problems: hyperuricemia, hyperkalemia, hyperphosphotemia,

hypocalcemia and uremia

Any treatment can cause TLS, but FC and Revlimid seem to cause the

most problems. It is also seen in Rituxan and Campath on occasion.

The majority of WBCs are in the lymph system and while removing them from

the peripheral blood might lower counts, I doubt it would have much effect on

TLS.

The key to controlling TLS is to control the rate of WBC kill and to keep

extremely well

hydrated. Allopurinol is used to control uric acid levels.

~chris

>

> Has anyone heard of using transfusions to knock back high WBCs before

> rituxan tx., instead of leukeapheresis or chemo? Would that prevent

> TLS?

> Thanks,

> Ellen R.

>

[Guest guest]

Ellen, when my Hg was low (9-11), I most noticed it in aching thigh muscles when going up steps. And in shortness of breath with the same exertion.

Regards,

Marcia in CA

question

Can a low hemoglobin cause weak thigh muscles? Feels like there's toomuch lactic acid in them, yet should have recovered by now from walkinga lot last Wed. & Thurs.Ellen R.

[Guest guest]

at the risk of sounding stupid....could that be why i have pain in my legs at times...from cll in general?From: Ellen <rhudy@...> Sent: Mon, April 19, 2010 2:24:03 PMSubject: question

Can a low hemoglobin cause weak thigh muscles? Feels like there's too

much lactic acid in them, yet should have recovered by now from walking

a lot last Wed. & Thurs.

Ellen R.

[Guest guest]

I have the same issue - my thighs ache from walking uphill, even short distances uphill. My RBC and hemoglobin are below normal, which may be the reason.

Ron

Can a low hemoglobin cause weak thigh muscles? Feels like there's toomuch lactic acid in them, yet should have recovered by now from walkinga lot last Wed. & Thurs.Ellen R.

[Guest guest]

Ellen,

did he tell you why he attributes this much importance to MCV?

Levels of WBCs in blood are not so important in themselves, but they are

important as indicators of disease progression. I take it that presently you

have no direct signs of it, ie, a decline in RBCs, and/or platelets, and/or ANC,

and getting the feared B symptoms. I guess that's why your onc isn't concerned.

As far as his philosophy not to treat till it gets bad off, I guess it depends

on what he means by " bad off, " but letting it progress too far is a risky

strategy as you may end up with a permanent damage to the bone marrow, and

perhaps acquiring new chromosomal changes, etc.

Arnold

NJ

>

> My new oncologist is of the philosophy to not treat until you're getting

> bad off. He said my MCV at 100 was good, so there was no need to treat

> at this time. He said the WBCs mean next to nothing, just the other

> stuff. However, 2 years ago, a different onc wanted to treat me when my

> WBCs were 1/2 what they are now. Why the big discrepancy? Is it

> because, bottom line, there's no survival advantage to treating before

> symptoms become real apparent?

> Thanks,

> Ellen R.

>

[Guest guest]

No, he didn't tell me. I have a follow-up e-mail to him that he hasn't

responded to yet. I'm aware that I don't want things to get too bad.

He didn't use the term "bad off," that's just my analysis.

Thanks,

Ellen

apeckerm wrote:

Ellen,

did he tell you why he attributes this much importance to MCV?

Levels of WBCs in blood are not so important in themselves, but they

are important as indicators of disease progression. I take it that presently

you have no direct signs of it, ie, a decline in RBCs, and/or platelets,

and/or ANC, and getting the feared B symptoms. I guess that's why your

onc isn't concerned.

As far as his philosophy not to treat till it gets bad off, I guess

it depends on what he means by "bad off," but letting it progress too far

is a risky strategy as you may end up with a permanent damage to the bone

marrow, and perhaps acquiring new chromosomal changes, etc.

Arnold

NJ

>

> My new oncologist is of the philosophy to not treat until you're

getting

> bad off. He said my MCV at 100 was good, so there was no need to

treat

> at this time. He said the WBCs mean next to nothing, just the other

> stuff. However, 2 years ago, a different onc wanted to treat me when

my

> WBCs were 1/2 what they are now. Why the big discrepancy? Is it

> because, bottom line, there's no survival advantage to treating before

> symptoms become real apparent?

> Thanks,

> Ellen R.

>

[Guest guest]

If you are asking for thyroid tests then these are the ones you should get - you can order them on your own from www.healthcheckusa.com and look for the STTM labelled tests.

TSH

Free T3

Free T4

TPO Ab

Tg Ab

Ferritin

B12

Iodine loading test with bromide levels www.hakalalabs.com

I would get an electrolyte panel done too. You may be able to get that from Health Check USA.

I do not have anyone in Delware to offer but here are some in land and New Jersey. You may have to travel a bit to a good doctor. I drive 2 1/2 hours to mine.

Steph

MARYLAND1) Sharon Montes, M.D.; Family Medicine Medical Acupuncturist; University of land School of Medicine; Integrative Medicine, LLC; 2200 Kernan Drive, 2nd Floor; Baltimore, land 21207-6697 410-448-6361 www.compmed.umm.edu

Kind, compassionate, calming and understanding. Not a thyroid expert, but will prescribe dess. thyroid, test adrenals (ask for saliva), the free's and hormones, takes insurance, good holistic pharmacy she works with. She is also very aware of the lack of knowledge of the so-called thyroid specialist

NEW JERSEY1) Dr. Kershner 18 Leonardville Road; Middletown, New Jersey 07748 (732) 671-3730; Fax (732) 706-1078

He's open to desiccated thyroid and treats subclinical hypo to the patient, not just to numbers.

2) Dr. Cacciola; 403 Fairview Ave.; Paramus, NJ 07652; 201-261-8386

early 2007: He sees 5 to 6 thyroid patients a day. He listens to your suggestions about your treatment & just doesn't brush off your symptoms. Tests the free's, prescribes desiccated thyroid. 12-07: patient states he did NOT test the free's, getting too busy, and wouldn't listen to new ideas. So all he does is prescribe desiccated thyroid. Need updates.,

3) Elaine Hardy, MS,RN,APN,C.;Holistic Family Healthcare, PC; 319 Airport Road; Hackettstown, NJ 07840; 908-850-0888; http://www.holisticfamilyhealthcarepc.com

Nurse practitioner with her own practice. Treats by symptoms, looks at both frees and antibodies. Prescribes dess. thyroid.

4) Dr. M. ph Russo 128 Valley Rd Clifton, NJ 07013 (973) 279-5116

Here is a list of the insurance carriers that Dr. Russo accepts: United Healthcare Options PPO, Aetna Choice PPO, BlueCross BlueShield BlueCard PPO, CIGNA PPO First Health, GHI PPO, Greatest PPO, Hipprime PPO, Multiplan PPO, Oxford Freedom, PHCS PPO Need info on him in particular.

5) Dr. Zimmerman; Family Wellness Center; 1680 State Highway 35; Middletown, NJ 07748732-671-3730

Tests Total T3, Total T4, TSH, Free T3, Free T4, AntithyroglobinAby, Cortisol and Ferritin. Understands temperature taking and the saliva test.

question

Hi I have a question I was told I need to go on a salt free diet and was wondering if the swelling in legs more so when I get into my menstrual cycle and the feet itching could be related to not having enough Iodine in my system as I know there is reg salt in all foods especially in packaged foods , I only have 1 thyroid and I am feeling it die or give up more and more can someone PLEASE send me a list of all the test I need to be tested for and anyone know of a good thyroid doc in Delaware not for diabetes as these docs are no better then Primary docs when it comes to thyroid issues