Need Advice

[Guest guest]

Hi

C (we have another and a ) so can you use C when you

write. Welcome to our forum and I hope you get the support you need.

I

think you need to go to our website www.tpa-uk.org.uk

and click on 'Hypothyroidism' in the Menu, and in the drop down menu, click on

'Associated Conditions'. Read about every single one of these and see if you

could be suffering from one of these and nobody has pointed this out to you.

Any of these conditions will stop your thyroid hormone replacement from

working. You may also not be converting the mainly inactive hormone thyroxine

(T4) to the active hormone triiodothyronine(T3). T3 is needed by every cell in

the body and brain to make them function, and if you are not making sufficient

thyroid hormone, your body will continue with all the symptoms of

hypothyroidism. Sadly, doctors have NOT been taught about these things, so this

is something you will have to take on yourself. There are tests you can get

done, and you will be told about these. Some you can get done within the NHS,

others need to be done privately.

Have

you considered taking all of your levothyroxine at night when you go to bed.

There has been a study showing excellent results in that sufferers sleep fitter

and longer, and they feel better during the day. Another advantage is that you

can take any iron and calcium supplements during the day. You might want to try

this. Tomorrow, don't take your normal medication before breakfast, save your

thyroxine until you go to bed - but make sure you don't eat anything an hour

before.

Let

us know what you think after you have read about the associated

conditions that go along with being hypothyroid and that can stop your thyroid

hormones from being absorbed.

Luv -

Sheila

Feeling confused and that

i'm wasting th dr's time but it's now getting to the stage that i am

only averaging 4 to 5 hrs sleep and disturbed sleep at that. Also why

do i feel so poorly if i forget to take my tablets even for 2to3 doses,

when dr's say that it stays working in your system for ages? Should my

ankles and hands be swollen when i am supposd to be taking a theraputic

dosage. I have also been having episodes of chest pain but th dr's say

it 'may' be anxiety attacks cos i dont sweat profusely when it happens.

Feel that i am wasting my dr's time but am suprised at how they brush

everything off. Are they right to?

[Guest guest]

Hi Gillian,

I think your temperatures during the day might mean more than the basal one - the average of 3 or more, taken 3 hours after waking & every 3 hours after that.

I am intrigued (spelling?) does the 56 in your email address relate to the year you were born - mine does.

Val

I have been taking my basal temperature on waking for a few days now and I am intrigued that the readings are so low considering that I feel so hot? Most weird... I suffer from hot flushes (worse at night) and I feel like I am burning up from inside out.Gillian

[Guest guest]

Yes Val 56 is the year I was born...I'm 53 this month!

Thanks for the tip...I'll start doing my temp every 3 hours for a few

days and see what pattern emerges. (I did take it before I went to

bed and it is usually around 36.8.)

I still don't understand what the temperatures mean with regards to

hypothyroidism though? I always thought I had menopausal hot flushes.

Its all a bit confusing...

Gillian

>

> Hi Gillian,

>

> I think your temperatures during the day might mean more than the

basal one - the average of 3 or more, taken 3 hours after waking &

every 3 hours after that.

>

> I am intrigued (spelling?) does the 56 in your email address relate

to the year you were born - mine does.

[Guest guest]

Gillian ~ If you go to www.drrind.com you will get a comprehensive explanation of the role of core body temperature in thyroid and adrenal issues.

He has some handy charts you can download and print to fill in your daily readings which makes it a lot easier to see the overall picture.

Shout again if you get lost!

Mo

ps it is unlikely that a digital thermo will be accurate enough for this purpose unless that is you have checked it against a reliable one like mercury or similar. Very important point this.

From: gilliani56 <alpha.piscium@...>Subject: Re: need advicethyroid treatment Date: Tuesday, 3 February, 2009, 3:53 PM

Yes Val 56 is the year I was born...I'm 53 this month! Thanks for the tip...I'll start doing my temp every 3 hours for a few days and see what pattern emerges. (I did take it before I went to bed and it is usually around 36.8.)I still don't understand what the temperatures mean with regards to hypothyroidism though? I always thought I had menopausal hot flushes. Its all a bit confusing...Gillian>> Hi Gillian,> > I think your temperatures during the day might mean more than the basal one - the average of 3 or more, taken 3 hours after waking & every 3 hours after that.> > I am intrigued (spelling?) does the 56 in your email address relate to the year you

were born - mine does.

[Guest guest]

Hi Gillian,

I am also 53 this month. It will be weird - my husband was the only person I would expect a card & present from on the day. I am sure my son will not forget, but he will be at work anyway, and he lives in London. I think Valentine's Day will be even worse - never ever forgot - I guess I could put up last year's card as I notice that he kept it in his filing cabinet.

I also have menopausal hot flushes, but now just at night, and not that many either - but I did lose my ovaries quite a few years ago so may well be ahead of you from a time point of view for this.

I think it is just if the daytime temps are low then it shows a low metabolism & so could be needing more thyroid, but also it can take a long while for temps to catch up even when taking enough thyroid I believe. I always had extremely low temperatures before being diagnosed.

Val

Yes Val 56 is the year I was born...I'm 53 this month! Thanks for the tip...I'll start doing my temp every 3 hours for a few days and see what pattern emerges. (I did take it before I went to bed and it is usually around 36.8.)I still don't understand what the temperatures mean with regards to hypothyroidism though? I always thought I had menopausal hot flushes. Its all a bit confusing...Gillian

[Guest guest]

Bless you Val...you make sure you put 's card up on

Valentine's day. I know I would. I am sure your son won't forget your

birthday..(I've got two sons and I don't let them forget mine!!)What

date is your birthday by the way? Are you a piscean too?

Gillian

x

>

> Hi Gillian,

>

> I am also 53 this month. It will be weird - my husband was the

only person I would expect a card & present from on the day. I am

sure my son will not forget, but he will be at work anyway, and he

lives in London. I think Valentine's Day will be even worse -

never ever forgot - I guess I could put up last year's card

as I notice that he kept it in his filing cabinet.

>

[Guest guest]

Hi

No, I can't say I've noticed any smell...I'll have a good sniff

tonight though to check.

I don't actually sweat...I just burn up from the chest upwards like

I'm in a furnace. Its worse when I am lying down and I am in and out

the duvet all night long, cooling down...warming up...etc...it drives

me mad. I don't get so many hot flushes during the day and they are

less severe.

I tell you what though...I'm coming back in my next life as a man!

Gillian

>

> Hi Gillian,

>

> I can relate to that!!!I started suffering from hot sweats at

nighttime

> about 4 years ago and thought I had left my electric blanket on.

And the smell sometimes!

> Its not BO smell, its weird. Do you have the same thing?

>

> Jean

[Guest guest]

16th - aquarius, and yours?

Val

What date is your birthday by the way? Are you a piscean too? Gillian

[Guest guest]

,

Lightbulb moment- internal shivering- adrenal. It's an odd

feeling almost like the early quickening of a baby ,though it goes on

for longer.

Suggest you do the adrenal questionnaire in the files

Low adrenals stresses further with the addition of thyrois meds

Subject: Re: need advice

I

strangely feel cold during the day like a weird 'internal shivering'

and as others often comment its warm there must be something wrong

with me. Sadly its just one of the many strange things that happen

despite levothyroxine (or perhaps because of it as I never had this

before treatment!!).

Regards

>

> 16th - aquarius, and yours?

> Val

>

> What date is your birthday by the way? Are you a piscean too? Gillian

>

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

When that happens have you tried some salt water and extra magnesium? Sometimes my adrenals were a little stressed and would do that. Being out of town may have put some added stress on you.

Steph

Need Advice

I have been out of town so not able to keep up with the group however have been taking the Iodoral, sea salt, BalanCe etc; & feeling well. I take the Natural Calms mag.in a tea at night so have been realizing a great improvement in the sleep pattern. I am actually able to sleep all the way thru' some nights now!

However, yesterday I had a really frightening experience. I had the usual brkft. took the Iodoral 12.5 mg.s ,on that dose now since Mar.26. Within 1 1/2 hr.s I was in such pain I could hardly get my breath, was around my heart, felt much like the worst ever indigestion, my b/p shot up to 153/83 a real rarity for me who is usually at 92/48! The pain came in waves then subsided then repeated this for several times over a 30 minute period to the point my partner was insisting we go to the ER. I refused & sat it out. Once it stopped it did not return.

Now today............same scenario just less painful. Terrible indigestion like feeling lasting now for several hr.s .What should I do? I feel sure it is being caused by the Iodoral. Should I increase the dose, stop taking it for a day or two or...........?

Any, all feedback very appreciated!

jeanie t.

[Guest guest]

You should go to the ER…it could be a heart attack. Women tend

to localize the pain and identify it more as indigestion. The elevated BP and

chest pain are enough warning signs to get into a doctor for evaluation.

Carol

From:

iodine [mailto:iodine ] On Behalf Of Jeanette

Taber

Sent: Saturday, April 25, 2009 11:50 AM

iodine

Subject: Need Advice

I

have been out of town so not able to keep up with the group however have been

taking the Iodoral, sea salt, BalanCe etc; & feeling well. I take the Natural

Calms mag.in a tea at night so have been realizing a great improvement in the

sleep pattern. I am actually able to sleep all the way thru' some nights now!

However,

yesterday I had a really frightening experience. I had the usual brkft. took

the Iodoral 12.5 mg.s ,on that dose now since Mar.26. Within 1 1/2 hr.s I was

in such pain I could hardly get my breath, was around my heart, felt much like

the worst ever indigestion, my b/p shot up to 153/83 a real rarity for me who

is usually at 92/48! The pain came in waves then subsided then repeated this

for several times over a 30 minute period to the point my partner was insisting

we go to the ER. I refused & sat it out. Once it stopped it did not return.

Now

today............same scenario just less painful. Terrible indigestion like

feeling lasting now for several hr.s .What should I do? I feel sure it is

being caused by the Iodoral. Should I increase the dose, stop taking it for a

day or two or...........?

Any,

all feedback very appreciated!

jeanie

t.

[Guest guest]

Good point Carol - I forget sometimes that I talk to my doctor all day long. Yes Jeanette get it checked out.

Steph

RE: Need Advice

You should go to the ER…it could be a heart attack. Women tend to localize the pain and identify it more as indigestion. The elevated BP and chest pain are enough warning signs to get into a doctor for evaluation.

Carol

From: iodine [mailto:iodine ] On Behalf Of Jeanette TaberSent: Saturday, April 25, 2009 11:50 AMiodine Subject: Need Advice

I have been out of town so not able to keep up with the group however have been taking the Iodoral, sea salt, BalanCe etc; & feeling well. I take the Natural Calms mag.in a tea at night so have been realizing a great improvement in the sleep pattern. I am actually able to sleep all the way thru' some nights now!

However, yesterday I had a really frightening experience. I had the usual brkft. took the Iodoral 12.5 mg.s ,on that dose now since Mar.26. Within 1 1/2 hr.s I was in such pain I could hardly get my breath, was around my heart, felt much like the worst ever indigestion, my b/p shot up to 153/83 a real rarity for me who is usually at 92/48! The pain came in waves then subsided then repeated this for several times over a 30 minute period to the point my partner was insisting we go to the ER. I refused & sat it out. Once it stopped it did not return.

Now today............same scenario just less painful. Terrible indigestion like feeling lasting now for several hr.s .What should I do? I feel sure it is being caused by the Iodoral. Should I increase the dose, stop taking it for a day or two or...........?

Any, all feedback very appreciated!

jeanie t.

[Guest guest]

I think you are on the right track getting a second opinion with a CLL person like Dr. Coutre.PatOn Sat, Jun 20, 2009 at 11:12 PM, <Rekarp@...> wrote:

Hello,

 

I'm looking for some advice on how to deal with a very aggressive case. I was diagnosed in December with a WBC count of 10,000 and platelets at 175. Over  the months both have gotten progressively worse with my WBC now at 82,000 and  platelets at 114. Otherwise, the blood counts are ok. My lymph nodes have gone from 1 cm to 2 - 2.5 cm and my spleen  has grown to 11 cm from the middle of the rib cage.

 

Most of the time I feel good with lots of energy. Occasionally I have digestive difficulties, which I have had for years and are probably not related to the CLL. I actually feel better now than six months ago. For the past 3 months I have been taking herbal tinctures prescribed by a local acupuncturist (for the CLL), which is probably why I am feeling better.My oncologist things this is obviously a very aggressive case and I need to treat right away with FR or FCR. He says if the platelets go lower I could have  difficulty with chemo. I'm almost 53 and very healthy with no real symptoms of the  disease. The oncologist doesn't think it is worth getting specialized blood  tests for any of the markers because the treatment would be the same regardless. He did suggest that I get a 2nd opinion, and I have an appointment in early August to see Dr. Coutre at Stanford.

 

My concern is that I might not respond well to the chemo and be left with few  options. I'm hoping there are less toxic ways to treat this if I become symptomatic and have further deterioration of the platelets.RonDx 12/0852 years old

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Ron, supplemental to peripheral standard blood testing, for thorough diagnosis

inquire about getting these tests & reports guidelines: core needle biopsy (bone

marrow biopsy, BMB), typical B-CLL immunophenotyping, cytogentics (usually via

FISH technique), molecular genetic analysis in re IgVH, as well as testing for

CD-38 (say, via cytometry) & / ZAP-70 (say, via immnohistochemistry).

It is my understanding that the issue with testing for the ZAP-70 (a protein) is

twofold: that its location is inside the cell rather than on the surface and

which different directly cojugated antibody is utilized. You should probably

rest assued that Stanford will get you right through these tests like pulling a

chain of pearls thru a labyrinth of post bearings.

In re spleen " from the middle of the rib cage " , do you mean along the end

(coastal) of lower left portion of rib cage?

Remember that the more accurate, relevant info you acquire within a given time

constraint - - the better decision you'll be able to make.

What's the composition of the " herbal tinctures " ?

>

> Hello,

>

> .. looking for some advice... diagnosed in December with a WBC count of 10,000

and platelets at 175. ... WBC now at 82,000 and platelets at 114. .... lymph

nodes .. gone from 1 cm to 2 - 2.5 cm spleen ... to 11 cm ... from the middle of

the rib cage.

>

> .... have been taking herbal tinctures prescribed by a local

> acupuncturist (for the CLL), which is probably why I am feeling better.

>

> ... oncologist doesn't think it is worth getting specialized blood tests for

any of the markers because the treatment would be the same regardless. He did

suggest that I get a 2nd opinion, and I

have an appointment in early August to see Dr. Coutre at Stanford.

>

> My concern is that I might not respond well to the chemo and be left with few

options. I'm hoping there are less toxic ways to treat

> Ron Dx 12/08 52 years old

>

[Guest guest]

Ron,

My mother's doc Dr. Hegge at UCSF very good.

lea

>

> I think you are on the right track getting a second opinion with a CLL

> person like Dr. Coutre.

>

> Pat

>

> On Sat, Jun 20, 2009 at 11:12 PM, <Rekarp@...> wrote:

>

> >

> >

> > Hello,

> >

> > I'm looking for some advice on how to deal with a very aggressive case. I

> > was diagnosed in December with a WBC count of 10,000 and platelets at 175.

> > Over the months both have gotten progressively worse with my WBC now at

> > 82,000 and platelets at 114. Otherwise, the blood counts are ok. My lymph

> > nodes have gone from 1 cm to 2 - 2.5 cm and my spleen has grown to 11 cm

> > from the middle of the rib cage.

> >

> > Most of the time I feel good with lots of energy. Occasionally I have

> > digestive difficulties, which I have had for years and are probably not

> > related to the CLL. I actually feel better now than six months ago. For the

> > past 3 months I have been taking herbal tinctures prescribed by a local

> > acupuncturist (for the CLL), which is probably why I am feeling better.

> >

> > My oncologist things this is obviously a very aggressive case and I need to

> > treat right away with FR or FCR. He says if the platelets go lower I could

> > have difficulty with chemo. I'm almost 53 and very healthy with no real

> > symptoms of the disease. The oncologist doesn't think it is worth getting

> > specialized blood tests for any of the markers because the treatment would

> > be the same regardless. He did suggest that I get a 2nd opinion, and I have

> > an appointment in early August to see Dr. Coutre at Stanford.

> >

> > My concern is that I might not respond well to the chemo and be left with

> > few options. I'm hoping there are less toxic ways to treat this if I become

> > symptomatic and have further deterioration of the platelets.

> >

> > Ron

> > Dx 12/08

> > 52 years old

> >

> > ------------------------------

> > *A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!<http://pr.atwola.com/promoclk/100126575x1221323000x1201367220/aol?redir=h\

ttp://www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=Junes\

tepsfooterNO62>

> > *

> >

> >

>

[Guest guest]

Ron,

Your case exemplifies a subject that we have spoken about here quite a bit and

is one that I believe is often misunderstood and results in a great deal of harm

to patients if not treated properly.

The decision regarding immediately starting treatment versus deferring treatment

until symptoms arise is really meant for patients who are not progressing and it

is unclear when they will need treatment. The two big studies done in the 1980s

looking at immediat versus deferred therapy tested chlorambucil or chlorambucil

plus prednisone as treatment. These studies demonstrated no benefit to

immediately treating patients. There are theoretical grounds for defering

treatment, namely avoidance of complications like infections, secondary leukemia

that might result given time, etc. What the studies also showed were that there

were no disadvantages to immediate treatment. Everyone did the same in the end!

With that being said, you do not fit into these studies. Your rising WBC,

decreasing platelets, and splenomegaly, especially with this time course mean

that your disease is active and given the rate at which this is happening,

treatment is indicated at this time.

I do worry that patients often defer therapy too long, thinking that it will

provide them additional time later, and end up becoming too ill to really

tolerate therapy. I believe your doctor is correct in suggesting therapy at

this time.

Rick Furman, MD

>

> Hello,

>

> I'm looking for some advice on how to deal with a very aggressive case. I

> was diagnosed in December with a WBC count of 10,000 and platelets at 175.

> Over the months both have gotten progressively worse with my WBC now at

> 82,000 and platelets at 114. Otherwise, the blood counts are ok. My lymph

> nodes have gone from 1 cm to 2 - 2.5 cm and my spleen has grown to 11 cm

> from the middle of the rib cage.

>

> Most of the time I feel good with lots of energy. Occasionally I have

> digestive difficulties, which I have had for years and are probably not

related

> to the CLL. I actually feel better now than six months ago. For the past 3

> months I have been taking herbal tinctures prescribed by a local

> acupuncturist (for the CLL), which is probably why I am feeling better.

>

> My oncologist things this is obviously a very aggressive case and I need

> to treat right away with FR or FCR. He says if the platelets go lower I

> could have difficulty with chemo. I'm almost 53 and very healthy with no

real

> symptoms of the disease. The oncologist doesn't think it is worth getting

> specialized blood tests for any of the markers because the treatment would

> be the same regardless. He did suggest that I get a 2nd opinion, and I

> have an appointment in early August to see Dr. Coutre at Stanford.

>

> My concern is that I might not respond well to the chemo and be left with

> few options. I'm hoping there are less toxic ways to treat this if I

> become symptomatic and have further deterioration of the platelets.

>

> Ron

> Dx 12/08

> 52 years old

>

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

(http://pr.atwola.com/promoclk/100126575x1221323000x1201367220/aol?redir=http://\

www.freecreditreport.com/pm/default.aspx?sc=668072 & hmpgID=62 & bcd=

> JunestepsfooterNO62)

>

[Guest guest]

Dr. Furman, in re your reply to Ron, did the following thought get crossed when

distilled down to keying it in? The sentence I'm referring to is: " What the

studies also showed were that there were no disadvantages to immediate

treatment. " I get the impression that the wording may be a cross of two

different ways of stating the message then in mind.

Am I correct in thinking that the intended sentence was similar to that stated

within your 2nd para., i.e., " These studies demonstrated no benefit to

immediately treating patients. " ?

> > .... looking for some advice on how to deal with a very aggressive case. ..

diagnosed in December with a WBC count of 10,000 and platelets at 175. ....WBC

now at 82,000 and platelets at 114. Otherwise, the blood counts are ok. My lymph

nodes have gone from 1 cm to 2 - 2.5 cm and my spleen has grown to 11 cm from

the middle of the rib cage.

> > Most of the time I feel good with lots of energy. ....

> > My oncologist .. obviously a very aggressive case ... treat right away with

FR or FCR. ..says if the platelets go lower I could have difficulty with chemo.

I'm almost 53 and very healthy with no real symptoms ....

> > .. oncologist doesn't think it is worth getting specialized blood tests for

any of the markers because the treatment would be the same regardless. .. did

suggest that I get a 2nd opinion ... appointment in early August .. Dr. Coutre

at Stanford.

> > My concern ... I might not respond well to the chemo and be left with few

options. I'm hoping there are less toxic ways to treat this if I become

symptomatic and have further deterioration of the platelets.

> > Ron

[Guest guest]

I guess if you cancel out the redundant negatives, etc. the answer is simply

that everyone did the same, whether they were treated immediately upon diagnosis

or whether they waited until they had symptoms and met the classic criteria for

treatment. Therefore, there is no advantage (or disadvantage) of one over the

other.

The reason why people then elected for deferring treatment is that there is

always a risk with treatment (neutropenia, infection, etc) at the time of

treatment, as well as long-term, namely " burned out " bone marrow. But these

risks are theoretical.

This is all being retested currently, but only in patients with IgVH unmutated

disease. In these patients with aggressive disease, there might be a benefit

that was not seen when everyone (unmutated and mutated) were treated.

The " art of oncology " is knowing when to treat.

Rick Furman

> > > .... looking for some advice on how to deal with a very aggressive case.

... diagnosed in December with a WBC count of 10,000 and platelets at 175.

.....WBC now at 82,000 and platelets at 114. Otherwise, the blood counts are ok.

My lymph nodes have gone from 1 cm to 2 - 2.5 cm and my spleen has grown to 11

cm from the middle of the rib cage.

> > > Most of the time I feel good with lots of energy. ....

> > > My oncologist .. obviously a very aggressive case ... treat right away

with FR or FCR. ..says if the platelets go lower I could have difficulty with

chemo. I'm almost 53 and very healthy with no real symptoms ....

> > > .. oncologist doesn't think it is worth getting specialized blood tests

for any of the markers because the treatment would be the same regardless. ..

did suggest that I get a 2nd opinion ... appointment in early August .. Dr.

Coutre at Stanford.

> > > My concern ... I might not respond well to the chemo and be left with few

options. I'm hoping there are less toxic ways to treat this if I become

symptomatic and have further deterioration of the platelets.

> > > Ron

>

[Guest guest]

I think Dr. Furman is tactfully saying that as yet there's no change in

the overall average life expectancy of people with CLL as a result

either of early or late intervention, which is not to minimize the

importance of the right intervention for each individual person. As

his patient, I know he's a great believer in quality of life and he

aims for that wherever he can. It's clear he's closely watching the

ongoing research about whether early intevention can make a difference

under any circumstances. I think one of the challenges for oncologists

must be to believe in and stand firmly behind the best current

research, inspiring confidence in their patients about tx decisions,

while at the same time keeping a completely open mind about possible

new findings.

-Ellen D.

On Jun 23, 2009, at 9:15 PM, rrfman wrote:

>

>

> I guess if you cancel out the redundant negatives, etc. the answer is

> simply that everyone did the same, whether they were treated

> immediately upon diagnosis or whether they waited until they had

> symptoms and met the classic criteria for treatment. Therefore, there

> is no advantage (or disadvantage) of one over the other.

>

> The reason why people then elected for deferring treatment is that

> there is always a risk with treatment (neutropenia, infection, etc) at

> the time of treatment, as well as long-term, namely " burned out " bone

> marrow. But these risks are theoretical.

>

> This is all being retested currently, but only in patients with IgVH

> unmutated disease. In these patients with aggressive disease, there

> might be a benefit that was not seen when everyone (unmutated and

> mutated) were treated.

>

> The " art of oncology " is knowing when to treat.

>

> Rick Furman

>

>

> > > > .... looking for some advice on how to deal with a very

> aggressive case. .. diagnosed in December with a WBC count of 10,000

> and platelets at 175. ....WBC now at 82,000 and platelets at 114.

> Otherwise, the blood counts are ok. My lymph nodes have gone from 1 cm

> to 2 - 2.5 cm and my spleen has grown to 11 cm from the middle of the

> rib cage.

> > > > Most of the time I feel good with lots of energy. ....

> > > > My oncologist .. obviously a very aggressive case ... treat

> right away with FR or FCR. ..says if the platelets go lower I could

> have difficulty with chemo. I'm almost 53 and very healthy with no

> real symptoms ....

> > > > .. oncologist doesn't think it is worth getting specialized

> blood tests for any of the markers because the treatment would be the

> same regardless. .. did suggest that I get a 2nd opinion ...

> appointment in early August .. Dr. Coutre at Stanford.

> > > > My concern ... I might not respond well to the chemo and be

> left with few options. I'm hoping there are less toxic ways to treat

> this if I become symptomatic and have further deterioration of the

> platelets.

> > > > Ron

> >

>

>

[Guest guest]

Dr. Furman. thank you for the reply. I fully understand that there's an optimal

point along the deferment curve where one must be prudently cognizant of as the

point in space & time to commit to the decision treatment --- realizing that

each of our indiviual specific set of disease variables confluence at that

point. I know it as the decision " saddle point "

My mind just picked-up on the incongruency with the similar 1st sentence & my

reply was simply to provide a venue for clarifying my dissonance and that of the

record. So, I don't want to get into a back & forth.

In re mentioned IgVH unmutated treatment initiation studies - - I take it that,

should it come to fruition, the end result may be another branching in NCCN

practice guidelines - - similar to that for 17p. Any study published yet?

Just so that we have them in the archives, in re " two big studies done in the

1980s looking at immediat versus deferred therapy tested chlorambucil or

chlorambucil plus prednisone as treatment. " , I believe the following 3 abstracts

may capture the gist.

In a way, the first abstract " strings " to more recent statistical prognostic

modelling out of MDACC & validation out of Mayo. I took the liberty of posting

the third (from 1998), as I find it of interest to discern the expected negative

pay-off value of chlorambucil in Stage A v. B/C. I've tried to separate the

three (3) by a string of periods (....).

" Effects of chlorambucil and therapeutic decision in initial forms of chronic

lymphocytic leukemia (stage A): results of a randomized clinical trial on 612

patients. "

The French ative Group on Chronic Lymphocytic Leukemia.

Blood 1990 Apr 1;75(7):1414-21.

In 1980, the French ative Group on Chronic Lymphocytic Leukemia started a

randomized clinical trial in which 612 good prognosis patients (stage A)

received either no treatment (309 patients) or an indefinite course of

chlorambucil at the daily dose of 0.1 mg/kg (303 patients). Overall survival

appeared to be better in the untreated group (50 deceased patients compared with

62 in the chlorambucil group), but the difference was not significant (P = .21)

even after adjusting for both prognostic and imbalanced factors (P = .09). The

crude 5-year survival rates were 82% in the untreated group and 75% in the

chlorambucil group. The action of chlorambucil appeared to be a complex

phenomenon associating beneficial effects consisting in slowing down disease

progression to stage B or C (P less than .01), and favoring disease remission

with harmful effects given by a short survival after disease progression to

stage B or C in the chlorambucil group and an increased incidence of epithelial

cancers (33 v 19), as well as an excess of epithelial cancer deaths (13 v 3), in

the chlorambucil group. As these results suggested an overall harmful effect of

chlorambucil, we tried to define, within stage A patients, a group of patients

with a low probability of disease progression. We showed that stage A patients

with hemoglobin greater than or equal to 120 g/L and lymphocyte count less than

30 x 10(9)/L had a survival that was not significantly different (P = .46) from

that of the age- and sex-matched French population. These patients, accounting

for about 50% of all chronic lymphocytic leukemia patients, should not be

treated unless disease progression is observed.

PMID 2180492

..............................................................

High dose continuous chlorambucil vs intermittent chlorambucil plus prednisone

for treatment of B-CLL--IGCI CLL-01 trial.

Nouv Rev Fr Hematol 1988;30(5-6):437-42.

Jaksic B; Brugiatelli M

Dept. of Medicine, University Hospital, Zagreb, Yugoslavia.

279 B-CLL patients entered randomized IGCI clinical trial to compare the

remission rate and survival of high dose continuous chlorambucil (regimen A) vs

intermittent chlorambucil plus prednisone (regimen , and to assess the effect

of early treatment on survival.

Regimen A was significantly better for remission induction (p less than 0.001),

and prolonged survival (p less than 0.01) in comparison to regimen B.

More aggressive chemotherapy is associated with better response but requires

close monitoring of both antineoplastic effect and haematological toxicity.

Total tumor mass score (TTM) proved to be suitable for definition of both early,

stable disease and the response to therapy because of its quantitative

continuous character and its independence of bone marrow failure. This system is

helpful for the detection of treatment toxicity and consequently enables safe

monitoring of therapy. Although statistically significant difference has not yet

been reached between the patients treated early and non treated patients the

latter group seems to fare better.

PMID 3065740

...........................................................

Chlorambucil in Indolent Chronic Lymphocytic Leukemia

NEJM Volume 338:1506-1514 May 21, 1998 Number 21

Guillaume Dighiero, M.D., Ph.D., Karim Maloum, M.D., Ph.D., Bernard Desablens,

M.D., Bruno Cazin, M.D., Maurice Navarro, M.D., Leblay, M.D., Michel

Leporrier, M.D., Jérome Jaubert, M.D., Gérard Lepeu, M.D., Brigitte Dreyfus,

M.D., Jacques-Louis Binet, M.D., Philippe Travade, M.D., François-Louis Turpin,

M.D., Gérard Tertian, M.D., Agnès Bichoffe, M.D., for The French ative

Group on Chronic Lymphocytic Leukemia

ABSTRACT

Background. To determine whether chlorambucil treatment benefits patients with

indolent chronic lymphocytic leukemia (CLL), we conducted two randomized trials

in 1535 patients with previously untreated stage A CLL.

Methods. In the first trial, 609 patients were randomly assigned to receive

either daily chlorambucil or no treatment; in the second trial, 926 patients

were randomly assigned to receive either intermittent chlorambucil plus

prednisone or no treatment. Median follow-up for the first and second trials

exceeded 11 and 6 years, respectively. The end points were overall survival,

response to treatment, and disease progression.

Results. Treatment of indolent CLL did not increase survival in either trial. In

the treated group, as compared with the untreated group, the relative risk of

death was 1.14 (95 percent confidence interval, 0.92 to 1.41; P=0.23) in the

first trial and 0.96 (95 percent confidence interval, 0.75 to 1.23; P=0.74) in

the second trial, with 76 percent and 69 percent of patients, respectively,

having a response to therapy. Although chlorambucil slowed disease progression,

there was no effect on overall survival. In the untreated group in the first

trial, 49 percent of patients did not have progression to more advanced disease

and did not need therapy after follow-up of more than 11 years; however, 27

percent of patients with stage A CLL died of causes related to the disease.

Conclusions. Chlorambucil does not prolong survival in patients with stage A

CLL. Since deferring therapy until the disease progresses to stage B or C does

not compromise survival, treatment of indolent CLL is unnecessary.

> >

> > Dr. Furman, ......... Am I correct in thinking that the intended sentence

was similar to that stated within your 2nd para., i.e., " These studies

demonstrated no benefit to immediately treating patients. " ?

> >

[Guest guest]

Dear Dr Furman,

I am sending you the info on my

son-in-law.

I am sorry to keep bothering you. I would

appreciate your opinion on his case enourmously.

Thanks.

Aviva

Dear Dr Furman and fellow SLL/CLL patients,

My 38 old son-in-law was diagnosed with SLL in January 2008.

His disease has been very aggressive and relentless.

Lymph nodes started to grow after three rounds of FCR.

That led to five rounds of OFAR. The OFAR did not bring him into

remission. He experienced lymph growth in between treatments. He

underwent another nodal biopsy four days ago. The PET/CT before that

showed a mixed picture with improvement in some of the nodes and a new hyper

metabolic focus in the right tonsil area and the left neck lymph node in level III, measuring 1.6 × 1.6 cm (SUV 10.3,

higher than previous 5.9). This node was biopsied. The pathology

report reads:

§

Small lymphocytic lymphoma, with plasmacytoid

differentiation( so called lymphoplasmacytoid variant) with increased mitotic

and proliferated index (53% by Ki-67 image analysis), consistent with an

accelerated phase/transformation

§

Immunophenotype: B-cell lineage

(CD20 positive) with expression of PAX-5, CD%, CD23, CD43, BCL-2, kappa; and

absence of CD3, CD10, CD30, BCL-2, BCL-6, lambda

§

FISH and cytogenetic studies are

pending (previous FISH normal).

Currently, there in no match for a stem cell transplant with

an adult donor. There is a possibility of matching with cord blood.

Considering his situation, I will very much appreciate answers to the

following:

What would you suggest

regarding a next possible treatment?

What do you think about a cord

blood transplant?

I am sorry for the lengthy email.

Thank you.

Aviva

[Guest guest]

Hi Tracey 2,

Levothyroxine isn't really a drug- its an artificial hormone to

replace that which you are unable to make for yourself anymore. I can

understand wishing to be on a desiccated thyroid instead as this contains

all the hormones a healthy thyroid would produce, not just one. But for ease

of treatment as levo is the NHs preferred option it would be sensible to

give the levo a proper try- 25mcg is a baby starter dose and should be

increased every 6 weeks ( it takes that long for any dose change to

stabilise)and retested until you reach optimum- which will be around125 mcg

for a full replacement dose. Feeling miserable is a usual symptom of low

thyroid- try not too worry it should lift as your dose increases.

Subject: need advice

Hi ive been on Levo for three weeks 25mcg and im taking my temperature every

morning for Dr Peatfields questionaire.This morning my heart rate was 76

beats per minute.Does this sound high im abit worried as im sure my GP will

increase my dosage next time i see her.Im concerned that my BPM will keep

rising.I havent felt any better yet i didnt really expect to on such a small

dose but i do feel more tearful and irritable has anyone else experienced

this.I hate being on this drug im looking forward to maybe changing to

something natural but in a way i dont want the dissapointment of finding

something that really helps and then not being able to get it anymore.Warm

Regards 2.

------------------------------------

TPA is not medically qualified. Consult with a qualified medical

practitioner before changing medication.

[Guest guest]

,

Your TSH is still too high, and 25mcg is too low. However, how do you feel on this. If you feel OK there is no problem. If you still have the symptoms then why not suggest to the doctor that you are still not well, that although 2.29 is within the range so is 1.0 so could you not try having a bit more thyroxine to bring your TSH slightly lower but still within range, and see if it makes a difference.

Lilian

[Guest guest]

Hi Tracey2, Suggest that you go back and ask for a refferal to an endo if you are still symptomatic- or you could wirte a letter asking for this, detailing your symptoms and cc to the head of practice- it is unethical to leave you unwell. Ask for the letter to be kept on you file. letters are less confrontational and being on file leave the doc feeling liable if you are proved right at a later date. > thyroid treatment > From: tomhorsfall@...> Date: Fri, 11 Sep 2009 15:50:48 +0000> Subject: need advice> > Hi there i would welcome peoples opinions on my lastest blood test resul> ts.Im on 25mcg Levo and my GP wont increase the dose.> TSH level 2.29 mIU/L.Regards 2.> > > > ------------------------------------> > TPA is not medically qualified. Consult with a qualified medical practitioner before changing medication.> >

[Guest guest]

Sorry 'bout the duplicate above. I was " editing " to make it easier to read

and did something with my fast fingers that got this sent. Sorry again.

P.S. First one is easier to read!!!!!

Duffy