-

[Guest guest]

- your new hematologist is certainly cautious, but there is nothing wrong with that.

My HGB has been falling from about 13 to the upper 11s, and my two docs are laughing it off. I do seem to have some sort of hemolytic anemia, but nobody can quite put their finger on it.

Re ITP, my understanding is that it comes on rapidly and dramatically. Again, as an encouragement, I have been very concerned about my platelets, which have been drifting down from the upper 100s to 117. Two days ago I had a CBC and they're 198!!

The numbers do go up and down.

Which is NOT to say that caution is not warranted.

Your whites are steady, your lymphs appear steady. Your HGB change is not dramatic. With your profile the one thing that would concern me are your Plats. But I'd wager that IF something is going on, it's not a transformation, just the CLL being obnoxious.

Do you have increased lymph node activity, growing nodes?

Lets see if Dr. Furman has a comment.

Create a Home Theater Like the Pros. Watch the video on AOL Home.

[Guest guest]

Thank you for your reply.

Yes my nodes have also grown in size, but

not that much. The nodes in my neck are about 3cm’s, all of the

others are just about 1cm.

I think it’s just my spleen chewing

up my platelets (maybe some Reds as well) and subsequently growing in size.

I also think she is being very cautious,

but as you say there’s nothing wrong with that.

Regards

From: [mailto: ] On Behalf Of jb50192@...

Sent: 21 March 2008 14:17

Subject: Re: -

- your new hematologist is

certainly cautious, but there is nothing wrong with that.

My HGB has been falling from about 13 to

the upper 11s, and my two docs are laughing it off. I do seem to have some sort

of hemolytic anemia, but nobody can quite put their finger on it.

Re ITP, my understanding is that it comes

on rapidly and dramatically. Again, as an encouragement, I have been very

concerned about my platelets, which have been drifting down from the upper 100s

to 117. Two days ago I had a CBC and they're 198!!

The numbers do go up and down.

Which is NOT to say that caution is not

warranted.

Your whites are steady, your lymphs

appear steady. Your HGB change is not dramatic. With your profile the one thing

that would concern me are your Plats. But I'd wager that IF something is

going on, it's not a transformation, just the CLL being obnoxious.

Do you have increased lymph node

activity, growing nodes?

Lets see if Dr. Furman has a comment.

Create a Home Theater Like the Pros. Watch

the video on AOL Home.

[Guest guest]

-

I am so happy for you. Must of taken a huge weight off you.

Is the infection going to be easy to treat? I will keep you in my thoughts.

Take care!

Love and Support,

Keri in CA

Saw the Surgeon

I have a really bad infection and the mass is benign. So good news!

Houston

________________________________________________________________________________\

____

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[Guest guest]

-

I am so happy for you. Must of taken a huge weight off you.

Is the infection going to be easy to treat? I will keep you in my thoughts.

Take care!

Love and Support,

Keri in CA

Saw the Surgeon

I have a really bad infection and the mass is benign. So good news!

Houston

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

-

I am so happy for you. Must of taken a huge weight off you.

Is the infection going to be easy to treat? I will keep you in my thoughts.

Take care!

Love and Support,

Keri in CA

Saw the Surgeon

I have a really bad infection and the mass is benign. So good news!

Houston

________________________________________________________________________________\

____

You rock. That's why Blockbuster's offering you one month of Blockbuster Total

Access, No Cost.

http://tc.deals.yahoo.com/tc/blockbuster/text5.com

[Guest guest]

Thanks Keri! I am on antibiotics for the infection. Only taken 2

doses adn i seem a little less red, but I am still having a lot of

pain and tickling with it. it's weird. i do have to be off Kineret

though while I manage this, so it's always something with not being

able to treat the Stills constantly.

I hope 's info was helpful to you and you get some new pain

meds soon.

Houston

[Guest guest]

Thanks Keri! I am on antibiotics for the infection. Only taken 2

doses adn i seem a little less red, but I am still having a lot of

pain and tickling with it. it's weird. i do have to be off Kineret

though while I manage this, so it's always something with not being

able to treat the Stills constantly.

I hope 's info was helpful to you and you get some new pain

meds soon.

Houston

[Guest guest]

Thanks Keri! I am on antibiotics for the infection. Only taken 2

doses adn i seem a little less red, but I am still having a lot of

pain and tickling with it. it's weird. i do have to be off Kineret

though while I manage this, so it's always something with not being

able to treat the Stills constantly.

I hope 's info was helpful to you and you get some new pain

meds soon.

Houston

[Guest guest]

Hi - that is a very tough one - 83 is a fairly advanced age, and you should indeed be careful.

First question: are you in the hands of a competent person? Have you had a second opinion from a top person? FR + Revlimid trial sounds to me like a fairly heavy hit. The 17p issue might actually make her not terribly responsive to FR.

I'm highlighting your e-mail to our Dr. Furman. I would like him to tell us what he thinks might be appropriate.

In a message dated 1/21/2009 5:16:34 P.M. Eastern Standard Time, psajobs@... writes:

My mother is 83 years old, and was diagnosed with "CLL" in January 2008. The diagnosis came after a routine CBC performed by her primary care physician. She has had no outward signs of illness, no fatigue, sweats or fevers. She has however lost approximately 12+ lbs in the last year, and tends toward early saiety, as a result of spleen involvement. (Her spleen tip is appreciated approximately 4-cm below the left costal margin.) She also has some node involvement. ..

Her oncologist would like to start a regimen/Clinical Trial of Rituxan and Fludarabine, 6ycles or Rituxan and Fludarabine, 6 cycles followed by Revlimid on trial, 6 cycles.

We are at a crossroads in determining what to do. We love our mother very much, and we are concerned that her age may present toxicity and toleration problems, with whatever treatment(s) she were to pursue. She has a good "performance status" now, gets around well, and even uses the treadmill regularly. She does however have a history of heart disease, high BP and Cholesterol. We are concerned whether those issues will contribute to additional new problems from treatment, or put her at a greater risk for complications from the treatment.

Lastly, she does present with poor prognostic markers, namely deletions of 17p13.1 and 13q14.3, along with positive expression of CD38 (85%) and ZAP-70 in the tumor cells. Will any of these treatments work with those indicators? In addition her B2M is 3.65, and or her LDH is 356. Her Lymphocytes are approx 140,000/mm-3.

We are concerned that she has a good quality of life now, gets around well, until this week when she developed some swelling in her right calf, making it difficult for her to walk. (We are not sure if this is related to her CLL) With her age and her prognostic indicators is treatment right, and is treatment with Fludarabine and Rituxan with or with out Revlimid the best treatment for her? Will treatment give her a longer overall survival, or just slow her disease down? Her life is good now, she does not "feel sick" even thought we know the disease is there. It is hard to think of making her "sick"with treatment if it will not help her in the long term.

Thank you very much for your input,

I

Inauguration '09: Get complete coverage from the nation's capital.

[Guest guest]

Dear ,

I find I just want to shout " Wait!! " Treatment shouldn't be based on

prognostics alone -- there's no concrete evidence that people with

some poor CLL prognostics will die sooner than those without them—there

are too many other factors involved. There's the weight loss and

other things you mention—certainly this is a situation that cries out

for at least one other doctor's assessment, maybe more.

Ellen D.

On Jan 21, 2009, at 5:28 PM, jb50192@... wrote:

> Hi - that is a very tough one - 83 is a fairly advanced age, and

> you should indeed be careful.

>  

> First question: are you in the hands of a competent person? Have you

> had a second opinion from a top person? FR + Revlimid trial sounds to

> me like a fairly heavy hit. The 17p issue might actually make her not

> terribly responsive to FR.

>  

> I'm highlighting your e-mail to our Dr. Furman. I would like him to

> tell us what he thinks might be appropriate.

>  

>

>  

>  

>  

> In a message dated 1/21/2009 5:16:34 P.M. Eastern Standard Time,

> psajobs@... writes:

>>

>>

>>  

>>  

>> My mother is 83 years old, and was diagnosed with " CLL " in January

>> 2008. The diagnosis came after a routine CBC performed by her primary

>> care physician. She has had no outward signs of illness, no fatigue,

>> sweats or fevers. She has however lost approximately 12+ lbs in the

>> last year, and  tends toward early saiety, as a result of  spleen

>> involvement. (Her spleen tip is appreciated approximately 4-cm below

>> the left costal margin.) She also has some node

>> involvement.                                                          

>> .. 

>>  

>> Her oncologist would like to start a regimen/Clinical Trial

>> of Rituxan and Fludarabine, 6ycles or Rituxan and Fludarabine, 6

>> cycles followed by Revlimid on trial, 6 cycles.

>>  

>> We are at a crossroads in determining what to do. We love our mother

>> very much, and we are concerned that her age may present toxicity and

>> toleration problems, with whatever treatment(s) she were to pursue. 

>> She has a good " performance status " now, gets around well, and even

>> uses the treadmill regularly. She does however have a history of

>> heart disease, high BP and Cholesterol. We are concerned whether

>> those issues will contribute to additional new problems from

>> treatment, or put her at a greater risk for complications from the

>> treatment.

>>  

>> Lastly, she does present with poor prognostic markers, namely

>> deletions of 17p13.1 and 13q14.3, along with positive expression of 

>> CD38 (85%) and ZAP-70 in the tumor cells. Will any of these

>> treatments work with those indicators? In addition her B2M is 3.65,

>> and or her LDH  is 356. Her Lymphocytes are approx 140,000/mm-3.

>>  

>> We are concerned that she has a good quality of life now, gets around

>> well, until this week when she developed some swelling in her right

>> calf, making it difficult for her to walk. (We are not sure if this

>> is related to her CLL) With her age and her prognostic indicators is

>> treatment right, and is treatment with Fludarabine and Rituxan with

>> or with out Revlimid the best treatment for her? Will treatment give

>> her a longer overall survival, or just slow her disease down? Her

>> life is good now, she does not " feel sick " even thought we know

>> the disease is there. It is hard to think of making her " sick " with

>> treatment if it will not help her in the long term.

>>  

>> Thank you very much for your input,

>>

>>  

>> I

>>

>>  

>>  

>

> Inauguration '09: Get complete coverage from the nation's capital.

>

[Guest guest]

Hi - it seems most people are steering you toward Fludara, regardless of the 17p situation. The argument appears to be that you'll be able to tell very quickly, after the first set, whether it's working or not (I believe Dr. Furman said that).

That certainly makes a lot of sense, as one round is not going to hurt your Mom.

But I'm sticking to my guns. If FR does not seem to work after one round, two at the most, I'd leave it and go for Bendamustine, possibly with Rituxan.

And I say again, I do not believe a Revlimid trial, at this point, is on deck for your Mom.

Best wishes, Know Your Numbers: Get tips and tools to help you improve your credit score.

[Guest guest]

,

Thank you and everyone for caring. Dr. Furman said the FR was a good start, and we would know immedietly if it was working. It is definitely less responsive with 17p, but he said it often does work. When you refer to rounds, do you mean the whole weekly session, as opposed to one day?

All my best,

Re: -

Hi - it seems most people are steering you toward Fludara, regardless of the 17p situation. The argument appears to be that you'll be able to tell very quickly, after the first set, whether it's working or not (I believe Dr. Furman said that).

That certainly makes a lot of sense, as one round is not going to hurt your Mom.

But I'm sticking to my guns. If FR does not seem to work after one round, two at the most, I'd leave it and go for Bendamustine, possibly with Rituxan.

And I say again, I do not believe a Revlimid trial, at this point, is on deck for your Mom.

Best wishes,

Know Your Numbers: Get tips and tools to help you improve your credit score.

[Guest guest]

Usually applies to the whole set of several days - Know Your Numbers: Get tips and tools to help you improve your credit score.

[Guest guest]

Hi Tonia

My GI doc is a Hepatobiliary Specialt/Achalasia Specialist so accoeding to my

research he is the best and most sympathetic to my needs in my area but if I

don't get satisfactory treatment from him in the near future I will ask (this is

the way that things are done on the NHS in the UK) for a referral to another

hospital. Why won't I go elsewhere? The NHS is free to all for treatment here in

the UK and as I am not currently working I cannot afford to go private. I had to

mention this as many kind people who have posted to me here ask me this. It is

the case of getting the treatment done on the NHS but at a slower pace unless

you fight for it to be pushed along at a faster pace as I am now doing. I will

keep in touch with the group about how things are going have no fear on this one

as to have the groups backing and support means such a lot to me in these trying

times.

________________________________

From: toniasdogsandi <toniasdogsandi@...>

achalasia

Sent: Monday, January 26, 2009 9:51:52 PM

Subject: -

I apologize I have not kept up with everything going on with you.One

thing from reading the most recent post is....who is your DR and is he

a specialist?? ??? It sure doesnt sound like it.I would highly consider

going else where for opinions and treatment.I dont know much about the

j tubes and all that but it sounds like your not getting the correct

treatment.

I hate to hear your having so many problems.I know it must be hard for

you..Do know I am thinking of you and hoping you soon get relief and

the care you need!!! Tonia

[Guest guest]

--

Just wanted to let you know of another negative side effect that I experienced which was heart palpitations. I do have a weakened heart and a prolapsed mitral valve. I have heard of several other people having heart palpitations while on MMS but all of them have had previous heart conditions. Another explanation that others have offered is that we actually have problems in our heart and the MMS is working on it causing the palpitations. I don't know the truth but if you have a history of any heart complications I would go very slowly. I will say that when the heart palpitations got severe all I had to do was take a good mineral supplement which had vitamin C in it and they were gone within five minutes.

Lianne

"We must not let our rulers load us with perpetual debt." -- Jefferson, letter to Kercheval, 12 July 1816

-----Original Message-----From: [mailto: ]On Behalf Of eauSent: Monday, April 27, 2009 4:04 AM Subject: [ ] Re: Teeth Enamel Erosion.

Hello,I just joined this group. I've been informed about the MMS a few weeks ago. Like almost everybody today, even in an occidental country, I'm surrounded with people who need to be desintoxicated or suffer from an important illness supposedly hard to cure, like cancer, but even with tools like MMS I feel powerless because it's hard to be taken seriously, and most of the time I even get people mad at me. Very strange reaction but it is. So far, I experimented this reaction with hyperbaric therapy and with pulsed electromagnetic field therapies, and now with MMS, each time unable to help, to the point of watching someone die or most precisely choosing to die because the pain is unbearable (essentially due to the treatment received), while I have a solution for them, and I know they can be cured. This will probably sound familiar to some of you.Also I will buy a bottle soon and will use it myself, I only read about positive results. The only negative side effect seems to be the effect on the teeth.I wonder if, regarding the "teeth enamel erosion" problem, if it would rather be linked to the use of citric acid? Does it happen to people who use lemon or vinegar?Thank you and best regards,> > >> > > Hi,> > >> > > I haven't written in ages but I thought I should send a message> > > stating that mouth washing with MMS (9 drops) for a minute or less> > > before cleaning teeth with it, has seriously eroded the enamel from> > > my teeth. I also had to stop it because it was causing me way too> > > much exacerbation of pain. My daughter is taking it now. Just once> > > daily and she's up to 7 drops tonight. She hasn't had any reaction> > > to it yet except to shudder at the taste.> > >> > > Best wishes, LD> > >> >> >> >> >> >------------------------------------> >> >

[Guest guest]

On 4/27/2009 6:05 PM, Lianne Lang wrote:

> Just wanted to let you know of another negative side effect that I

> experienced which was heart palpitations. I do have a weakened heart

> and a prolapsed mitral valve. I have heard of several other people

> having heart palpitations while on MMS but all of them have had previous

> heart conditions. Another explanation that others have offered is that

> we actually have problems in our heart and the MMS is working on it

> causing the palpitations. I don't know the truth but if you have a

> history of any heart complications I would go very slowly.

Actually, it appears from simple observation that MMS quickly depletes

the body of vital electrolytes. Most people with heart conditions are

already depleted of potassium, magnesium and other vital electrolytes,

so MMS will exacerbate any existing condition quickly.

It is strongly recommended to take a high quality mineral supplement for

a few weeks prior to starting a serious MMS regimen. I like the Fulvic

Acid Minerals from Vital Earth...

> I will say that when the heart palpitations got severe all I had to

> do was take a good mineral supplement which had vitamin C in it and

> they were gone within five minutes.

Yes, Vit C being a powerful antioxidant, it will stop the MMS reactions

very quickly, just like it does for ozone...