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  • 1 year later...

Hi Priya

Glad to hear from you.

Your case is a good example of how it can be important to eat enough

protein. As I always say, it's depends on the individual situation.

Pierre

Update

>

>

> Hi all,

>

> Howz everyone doing??? Its been a long time that I checked and

> posted mails....I was very busy with my work and family trips...So,

> I couldn't even check my mails...Anyway I went to my neph today for

> the first time after I was diagonised and the lab results were

> ok...my protein is unfortunately still around 3.5gm/day but my

> creatinine level is good...so happy about that...since proteinuria

> has not decreased with altace 2.5mg, my neph increased the dosage to

> 5mg. He also asked me to take more protein diet as my albumin level

> in the blood was on the lower side...so thats from my side....

>

> i hope everyone is doing fine....it will take a long time for me to

> catch up with the mails...i hope i didn't miss too much....i would

> be clearing my deadlines in my work only by january i guess...till

> then i'll not be that active in posting or reading mails...haffun...

>

> HAPPY HOLIDAYS!!!

>

> Priya

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

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Hi Aruna,

That is such great news that you are able to wean Manju down to 80 mg.

You are moving in the right direction.

If the red eye is due to allergies, that would be good news and fairly easy to

treat. Certainly better than cataracts anyway.

God bless you both,

In a message dated 12/16/2004 4:06:40 PM Eastern Standard Time, prm

writes:

>

>Hi All,

>

>Update on Manju

>

>Our Neph reduced the dosage to 80mg from 100 mg pred

>every other day,, Great news for us, but should see

>how it acts on Manjus body... keeping my fingers

>crossed

>

>And also our neph too was clueless about Manjus red

>eye on every other day without pred,, infact he showed

>us how cataract is caused and Manjus redness is no way

>related to cataract. And our doc was too excited about

>a paper released by American Kidney Assoc which has

>found some promising facts that pred is indeed good on

>the IgAN patients, he will give us next time :( sorry

>

>Priya - Sorry I couldnot ask our neph about the

>protein issue you were asking y'day, really sorry

>dear,, many of our questions were not properly

>answered y'day, probably first time I saw our neph to

>be in a little hurry,,

>

>And we went to the ophthalmologist today. Manju

>actually had seen him same time last yr due to some

>allergies in his eye, probably its the same thing that

>has repeated this yr, infact pred might have kept it

>less intense which other wise was bad last yr.That

>could be the reason. Last yr when Manju had seen him

>Manju had no IgAN( I mean was not Dxed), but this yr

>we gave him list of drugs Manju takes and his current

>state, kind of weird feeling that within an yr our

>lives has changed so much. The ophthalmologist was

>well informed and he gave us suggestions keeping an

>eye on Manjus sugar, he was good,

>Also we have to see him again after 2 or 3 weeks to

>find out what is causing Manjus allergies,, so kind of

>relieved that its not pred which is causing this,

>

>Thats about Manju, Thanks for listening, I am relieved

>,, wanted to share with you guys,

>

>

>Aruna

>

>__________________________________________________

>

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Hi Sophia,

Congratulations on the Pred wean, the face coming back, the good labs and a

wonderful trip to look forward to! I smiled all the way through your email.

Thanks for sharing the good news!

In a message dated 12/17/2004 7:37:26 PM Pacific Standard Time,

yipee_ladybug@... writes:

> Overall, I am happy with the results thus far. I wish my kidney

> function could miraculously increase, but I am slowly accepting what

> may be inevitable.

>

> The only other bit of news about me is that we are going on a trip

> to China and HK in January. I am very excited as I have never been

> there before, and the most exciting thing is that the tour we are

> going on will take us through my parents' hometowns, so it will be

> very cool to see the places where my parents were born.

>

> So, that's it about me. Merry Christmas to all! : )

>

> Sophia

>

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  • 1 month later...

Hi Ray,

Your post made me so happy! Great job losing 45 pounds. WOW that is great

:-) Keep up the good work so you can get your transplant.

Your labs look really good, many of them much better than mine.

Ray, thank you so much for your prayers for this group. That just means so

much to me.

Thanks for sharing the good news and I am certainly thanking our Lord and

rejoicing with you!

In a message dated 1/21/2005 6:48:09 P.M. Pacific Standard Time,

silerray@... writes:

Hi All, I need to bring you up to date on my condition. I read most of the

post every day and follow what is going on in this wonderful group. I received

my January test results. My dialysis clinic does a major blood workup every

month.

Albumin - Normal 4.0, enPCR - low 0.77, eKdrt/v - adequate 1.29, Potassium -

Normal 4.9, Calcium - Normal 9.1, Phosphorus - normal 4.3, glucose - normal

146, BI-PTH - low 31.7, Triglycerides - high 318, Cholesterol - low 139,

HgbA1C - normal 6.9

My heart is doing great from the bypasses, next appt 4 months. I talked to

my neph about a transplant He says when I get my weight to 220 lb he would

concider it. I am now at 238 I have lost 45 lb so far.

Everything is going fine in my church, I have been able to return to my

Pastoring duties. I pray for this group all the time. -Ray-

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Ray,,,i am so happy to hear about your weight loss,,i am one to know going on

a diet is very hard,,,,i have lost 115 pounds in 14 months now,,,i am doing

weight watchers ,,which is a great program,,and congrads on going back to

pastoring again,,,god bless you!!!,,,,Crystal

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Ray,,,i am so happy to hear about your weight loss,,i am one to know going on

a diet is very hard,,,,i have lost 115 pounds in 14 months now,,,i am doing

weight watchers ,,which is a great program,,and congrads on going back to

pastoring again,,,god bless you!!!,,,,Crystal

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Pretty good looking numbers Ray. When albumin, potassium and phosphorus are

at levels like that in my monthly dialysis bloodwork, the dietician is very

happy. More importantly, I'm happy to hear your heart is going great. That's

a very important factor on dialysis, no matter whether it's PD or hemo. I

wish you the best of luck in reaching your weight loss goal.

Nice to hear from you.

Pierre

update

>

> Hi All, I need to bring you up to date on my condition. I read most of the

post every day and follow what is going on in this wonderful group. I

received my January test results. My dialysis clinic does a major blood

workup every month.

> Albumin - Normal 4.0, enPCR - low 0.77, eKdrt/v - adequate 1.29,

Potassium - Normal 4.9, Calcium - Normal 9.1, Phosphorus - normal 4.3,

glucose - normal 146, BI-PTH - low 31.7, Triglycerides - high 318,

Cholesterol - low 139, HgbA1C - normal 6.9

>

> My heart is doing great from the bypasses, next appt 4 months. I talked to

my neph about a transplant He says when I get my weight to 220 lb he would

concider it. I am now at 238 I have lost 45 lb so far.

>

> Everything is going fine in my church, I have been able to return to my

Pastoring duties. I pray for this group all the time. -Ray-

>

>

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Pretty good looking numbers Ray. When albumin, potassium and phosphorus are

at levels like that in my monthly dialysis bloodwork, the dietician is very

happy. More importantly, I'm happy to hear your heart is going great. That's

a very important factor on dialysis, no matter whether it's PD or hemo. I

wish you the best of luck in reaching your weight loss goal.

Nice to hear from you.

Pierre

update

>

> Hi All, I need to bring you up to date on my condition. I read most of the

post every day and follow what is going on in this wonderful group. I

received my January test results. My dialysis clinic does a major blood

workup every month.

> Albumin - Normal 4.0, enPCR - low 0.77, eKdrt/v - adequate 1.29,

Potassium - Normal 4.9, Calcium - Normal 9.1, Phosphorus - normal 4.3,

glucose - normal 146, BI-PTH - low 31.7, Triglycerides - high 318,

Cholesterol - low 139, HgbA1C - normal 6.9

>

> My heart is doing great from the bypasses, next appt 4 months. I talked to

my neph about a transplant He says when I get my weight to 220 lb he would

concider it. I am now at 238 I have lost 45 lb so far.

>

> Everything is going fine in my church, I have been able to return to my

Pastoring duties. I pray for this group all the time. -Ray-

>

>

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Crystal,

Congratulations on your 115 pound weight loss! WOW! that is an entire

person you have lost. Keep up the great work. I am so proud of you Crystal.

In a message dated 1/22/2005 10:49:13 A.M. Pacific Standard Time,

cryslo785@... writes:

Ray,,,i am so happy to hear about your weight loss,,i am one to know going

on

a diet is very hard,,,,i have lost 115 pounds in 14 months now,,,i am doing

weight watchers ,,which is a great program,,and congrads on going back to

pastoring again,,,god bless you!!!,,,,Crystal

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Crystal,

Congratulations on your 115 pound weight loss! WOW! that is an entire

person you have lost. Keep up the great work. I am so proud of you Crystal.

In a message dated 1/22/2005 10:49:13 A.M. Pacific Standard Time,

cryslo785@... writes:

Ray,,,i am so happy to hear about your weight loss,,i am one to know going

on

a diet is very hard,,,,i have lost 115 pounds in 14 months now,,,i am doing

weight watchers ,,which is a great program,,and congrads on going back to

pastoring again,,,god bless you!!!,,,,Crystal

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Crystal,

Congratulations on your 115 pound weight loss! WOW! that is an entire

person you have lost. Keep up the great work. I am so proud of you Crystal.

In a message dated 1/22/2005 10:49:13 A.M. Pacific Standard Time,

cryslo785@... writes:

Ray,,,i am so happy to hear about your weight loss,,i am one to know going

on

a diet is very hard,,,,i have lost 115 pounds in 14 months now,,,i am doing

weight watchers ,,which is a great program,,and congrads on going back to

pastoring again,,,god bless you!!!,,,,Crystal

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  • 1 year later...
Guest guest

Hi Steph, thought I would chime in here and hope you share my

expereince with these drugs! Other than loosing my hair, being

tired, having sores in my mouth, I really cant complain much about

the AC. I continued exercising, flying across the country for two

weeks after each treatment etc.

I ate very nutrious foods and took the supplements reccommended in

the book By Dr. Quillen, " Beating Cancer with Nutrition " ,

before I started Chemo and the supplements really helped me. He

works with the 4 Cancer Treatment Centers of America. I would NOT

take them the day before, day of, or day after due to the

antioxident properties, I feel they truly helped my body get through

the treatment a little easier than some. Only once did my wbc drop

to the point I couldnt have treatment for one week, My wbc count

came back up on it's own, then I began giving myself the Nuelasta

shots for the remainder of AC. All of my other counts stayed high,

and I never deloveped the neutropeanic fever, even when my count was

700. So.........point being here, there are quite a few of us, most

of my clinic-( Army Medical Center), in fact that did't have

too much trouble , I wish it were the same for everyone, I cant

imagine keeping sptrits up when you are feeling so crummy. I

maintained most of my energy during this cycle. The Taxol kicked me

in the rear with body pain, fatigue, hunger from the steroids, but

too exhausted to exercise--weight gain (massive), then depression

set it for a while! Now that I'm just taking Herceptin alone, I am

loosing the weight...much SLOWER than when I was Pre-menstrual,

that's for sure!LOL But I AM recovering from all it it. I hope and

pray you have an easy time with this fight as well. Believe in your

chemo to do it's job of ridding your body of any possible lurking

cancer cells, and believe in your meds to fight any possible side

effect. I know you will do GREAT! Good Luck!

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Guest guest

Hi Steph, thought I would chime in here and hope you share my

expereince with these drugs! Other than loosing my hair, being

tired, having sores in my mouth, I really cant complain much about

the AC. I continued exercising, flying across the country for two

weeks after each treatment etc.

I ate very nutrious foods and took the supplements reccommended in

the book By Dr. Quillen, " Beating Cancer with Nutrition " ,

before I started Chemo and the supplements really helped me. He

works with the 4 Cancer Treatment Centers of America. I would NOT

take them the day before, day of, or day after due to the

antioxident properties, I feel they truly helped my body get through

the treatment a little easier than some. Only once did my wbc drop

to the point I couldnt have treatment for one week, My wbc count

came back up on it's own, then I began giving myself the Nuelasta

shots for the remainder of AC. All of my other counts stayed high,

and I never deloveped the neutropeanic fever, even when my count was

700. So.........point being here, there are quite a few of us, most

of my clinic-( Army Medical Center), in fact that did't have

too much trouble , I wish it were the same for everyone, I cant

imagine keeping sptrits up when you are feeling so crummy. I

maintained most of my energy during this cycle. The Taxol kicked me

in the rear with body pain, fatigue, hunger from the steroids, but

too exhausted to exercise--weight gain (massive), then depression

set it for a while! Now that I'm just taking Herceptin alone, I am

loosing the weight...much SLOWER than when I was Pre-menstrual,

that's for sure!LOL But I AM recovering from all it it. I hope and

pray you have an easy time with this fight as well. Believe in your

chemo to do it's job of ridding your body of any possible lurking

cancer cells, and believe in your meds to fight any possible side

effect. I know you will do GREAT! Good Luck!

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Guest guest

Hi Steph, thought I would chime in here and hope you share my

expereince with these drugs! Other than loosing my hair, being

tired, having sores in my mouth, I really cant complain much about

the AC. I continued exercising, flying across the country for two

weeks after each treatment etc.

I ate very nutrious foods and took the supplements reccommended in

the book By Dr. Quillen, " Beating Cancer with Nutrition " ,

before I started Chemo and the supplements really helped me. He

works with the 4 Cancer Treatment Centers of America. I would NOT

take them the day before, day of, or day after due to the

antioxident properties, I feel they truly helped my body get through

the treatment a little easier than some. Only once did my wbc drop

to the point I couldnt have treatment for one week, My wbc count

came back up on it's own, then I began giving myself the Nuelasta

shots for the remainder of AC. All of my other counts stayed high,

and I never deloveped the neutropeanic fever, even when my count was

700. So.........point being here, there are quite a few of us, most

of my clinic-( Army Medical Center), in fact that did't have

too much trouble , I wish it were the same for everyone, I cant

imagine keeping sptrits up when you are feeling so crummy. I

maintained most of my energy during this cycle. The Taxol kicked me

in the rear with body pain, fatigue, hunger from the steroids, but

too exhausted to exercise--weight gain (massive), then depression

set it for a while! Now that I'm just taking Herceptin alone, I am

loosing the weight...much SLOWER than when I was Pre-menstrual,

that's for sure!LOL But I AM recovering from all it it. I hope and

pray you have an easy time with this fight as well. Believe in your

chemo to do it's job of ridding your body of any possible lurking

cancer cells, and believe in your meds to fight any possible side

effect. I know you will do GREAT! Good Luck!

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  • 1 month later...
Guest guest

Hi ,

You have some difficult decisions to make. Hopefully with the treatment

option tools you and your doctor can get the information you need to

understand what the percentages of recurrences are with each option.

It's difficult to make decisions when there's such an impact on what you

want to do in the future to have a family. But please, make sure you

know what the tradeoffs are in choosing a treatment. If the Zoladex

means a 7% drop in recurrence - for me that would be a huge reason to

take it. If it doesn't...then it's easier to decide you don't need it.

Perhaps your husband is of the mindset to just do what the doctor

recommends, and not realizing we all have to do our own research,

understand what the doctor recommends, and ask the right questions to

get to the right decision for us.

I agree chemopause is harder than going into menopause naturally, but it

is just another group of side-effects to deal with - as I am finding out :-)

Did your doctor say you would definitely go into permanent menopause

from the Zoladex? If you just take Arimidex could you get pregnant while

on Arimidex?

As some other ladies have mentioned, there are many ways to have a

family. Maybe not the way you had originally planned, but a family

nonetheless.

Please let us know how your appt with the 2nd doctor goes.

take care,

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Guest guest

Hi ,

You have some difficult decisions to make. Hopefully with the treatment

option tools you and your doctor can get the information you need to

understand what the percentages of recurrences are with each option.

It's difficult to make decisions when there's such an impact on what you

want to do in the future to have a family. But please, make sure you

know what the tradeoffs are in choosing a treatment. If the Zoladex

means a 7% drop in recurrence - for me that would be a huge reason to

take it. If it doesn't...then it's easier to decide you don't need it.

Perhaps your husband is of the mindset to just do what the doctor

recommends, and not realizing we all have to do our own research,

understand what the doctor recommends, and ask the right questions to

get to the right decision for us.

I agree chemopause is harder than going into menopause naturally, but it

is just another group of side-effects to deal with - as I am finding out :-)

Did your doctor say you would definitely go into permanent menopause

from the Zoladex? If you just take Arimidex could you get pregnant while

on Arimidex?

As some other ladies have mentioned, there are many ways to have a

family. Maybe not the way you had originally planned, but a family

nonetheless.

Please let us know how your appt with the 2nd doctor goes.

take care,

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Guest guest

Hi ,

You have some difficult decisions to make. Hopefully with the treatment

option tools you and your doctor can get the information you need to

understand what the percentages of recurrences are with each option.

It's difficult to make decisions when there's such an impact on what you

want to do in the future to have a family. But please, make sure you

know what the tradeoffs are in choosing a treatment. If the Zoladex

means a 7% drop in recurrence - for me that would be a huge reason to

take it. If it doesn't...then it's easier to decide you don't need it.

Perhaps your husband is of the mindset to just do what the doctor

recommends, and not realizing we all have to do our own research,

understand what the doctor recommends, and ask the right questions to

get to the right decision for us.

I agree chemopause is harder than going into menopause naturally, but it

is just another group of side-effects to deal with - as I am finding out :-)

Did your doctor say you would definitely go into permanent menopause

from the Zoladex? If you just take Arimidex could you get pregnant while

on Arimidex?

As some other ladies have mentioned, there are many ways to have a

family. Maybe not the way you had originally planned, but a family

nonetheless.

Please let us know how your appt with the 2nd doctor goes.

take care,

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Guest guest

Hi ,

Not at this point as I am node negative, thank heavens. It would have

to be perscribed off label as, currently, it is used for mastetic

disease. Also, would have to weigh the possible heart complications

with the possible benefits. Congestive heart failure runs in the family.

Ruth

>

> Hi Ruth,

>

> Did your doctor recommend Herceptin since you are Her2+?

>

> -

>

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Guest guest

Hi ,

Not at this point as I am node negative, thank heavens. It would have

to be perscribed off label as, currently, it is used for mastetic

disease. Also, would have to weigh the possible heart complications

with the possible benefits. Congestive heart failure runs in the family.

Ruth

>

> Hi Ruth,

>

> Did your doctor recommend Herceptin since you are Her2+?

>

> -

>

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Guest guest

Hi Ruth,

I forgot you had mentioned heart problems in your family as one reason

you decided against chemo. I am node negative, but on Herceptin because

it is now being used for early stage women as well. Also, I'm er/pr-, so

I didn't have other treatment options (hormone therapy) as fortunately

you did.

take care,

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