A New Year personal challenge

G'day G'day Folks,

It is with some trepidation that I make this post. One option is to
carry on as though nothing untoward is happening for me. People out
there need support which I'm capable of giving. Having a meaningful
existence is important to personal survival. Many people with worse
situations than my own manage to carry on supporting others here.
I'd like to do the same without invoking a stressful situation.

However at this moment in time I need the help of other people, people
who are willing to devote some time to finding solutions where
solutions are unlikely to have been found before.

You see things are not going well for me at the moment. Most regular
posters will know I have multiple myeloma, MM, the bone marrow cancer
that produces excess immunoglobulin G crowding out other healthy forms
of immunoglobulin. A stem cell transplant failed completely. The
drug that has produced success is the sleeping tablet thalidomide.
Thalidomide is the drug that produced all the fetal abnormalities.
Thalidomide is thought to have a success rate of about 60%. For me it
has been a miracle life saver. It also has a rate of side effects of
about 80%. Given the choice; of only 80% side effects, one goes for
the thalidomide. I've had a few side effects but somehow survived
them all. The one that is currently hitting me hard is peripheral
neuropathy. It is so bad my oncologist is seriously considering
discontinuing the thalidomide treatment.

The implications of that are almost unthinkable.

For those who are wondering.

Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
time in about a half dozen years. This could be attributed to chemo
courses of dexamethasone, a steroid on steroids or simply to a more
relaxed attitude to bread and potatoes.

Coincidentally the most recent chemo course was incredibly successful.
The indicator of rogue immunoglobulin dropped from 17 to 10 which is
phenomenal.

Yes, I have tried evening primrose oil combined with alpha lipoic
acid. This is where I need folk who are prepared to go the hard yards
as there could be drug interactions. If you have a sound science
background and are willing to help please email me. I need all the
information I can get in order to have a well informed conversation
with my GP and oncologist.

Best wishes,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

"Quentin Grady" <quentin@paradise.net.nz> wrote in message
news:cihmn3l76rj36umhgph82845anec5brqff@4ax.com...
> G'day G'day Folks,
>
> It is with some trepidation that I make this post. One option is to
> carry on as though nothing untoward is happening for me. People out
> there need support which I'm capable of giving. Having a meaningful
> existence is important to personal survival. Many people with worse
> situations than my own manage to carry on supporting others here.
> I'd like to do the same without invoking a stressful situation.
>
> However at this moment in time I need the help of other people, people
> who are willing to devote some time to finding solutions where
> solutions are unlikely to have been found before.
>
> You see things are not going well for me at the moment. Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. A stem cell transplant failed completely. The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. For me it
> has been a miracle life saver. It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> The implications of that are almost unthinkable.
>
> For those who are wondering.
>
> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
> time in about a half dozen years. This could be attributed to chemo
> courses of dexamethasone, a steroid on steroids or simply to a more
> relaxed attitude to bread and potatoes.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal.
>
> Yes, I have tried evening primrose oil combined with alpha lipoic
> acid. This is where I need folk who are prepared to go the hard yards
> as there could be drug interactions. If you have a sound science
> background and are willing to help please email me. I need all the
> information I can get in order to have a well informed conversation
> with my GP and oncologist.
>
> Best wishes,
> --
> Quentin Grady ^ ^ /
> New Zealand, >#,#< [
> / \ /\
> "... and the blind dog was leading."
>
> http://homepages.paradise.net.nz/quentin

With hand on heart, I wish you all the best advice in the world - I pray
someone out there can help you to make the right choices on what the next
course of action should be to keeping you leaping through life.

Keep being beautiful, Quentin.

"Quentin Grady" <quentin@paradise.net.nz> wrote in message
news:cihmn3l76rj36umhgph82845anec5brqff@4ax.com...
> G'day G'day Folks,
>
> It is with some trepidation that I make this post. One option is to
> carry on as though nothing untoward is happening for me. People out
> there need support which I'm capable of giving. Having a meaningful
> existence is important to personal survival. Many people with worse
> situations than my own manage to carry on supporting others here.
> I'd like to do the same without invoking a stressful situation.
>
> However at this moment in time I need the help of other people, people
> who are willing to devote some time to finding solutions where
> solutions are unlikely to have been found before.
>
> You see things are not going well for me at the moment. Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. A stem cell transplant failed completely. The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. For me it
> has been a miracle life saver. It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> The implications of that are almost unthinkable.
>
> For those who are wondering.
>
> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
> time in about a half dozen years. This could be attributed to chemo
> courses of dexamethasone, a steroid on steroids or simply to a more
> relaxed attitude to bread and potatoes.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal.
>
> Yes, I have tried evening primrose oil combined with alpha lipoic
> acid. This is where I need folk who are prepared to go the hard yards
> as there could be drug interactions. If you have a sound science
> background and are willing to help please email me. I need all the
> information I can get in order to have a well informed conversation
> with my GP and oncologist.
>
Sorry to hear that Quentin. Wish I could be of more help.

Sadly i have no answers to give but i do offer my support and best wishes.

KROM

"Quentin Grady" <quentin@paradise.net.nz> wrote in message
news:cihmn3l76rj36umhgph82845anec5brqff@4ax.com...
> G'day G'day Folks,
>
> It is with some trepidation that I make this post. One option is to
> carry on as though nothing untoward is happening for me. People out
> there need support which I'm capable of giving. Having a meaningful
> existence is important to personal survival. Many people with worse
> situations than my own manage to carry on supporting others here.
> I'd like to do the same without invoking a stressful situation.
>
> However at this moment in time I need the help of other people, people
> who are willing to devote some time to finding solutions where
> solutions are unlikely to have been found before.
>
> You see things are not going well for me at the moment. Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. A stem cell transplant failed completely. The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. For me it
> has been a miracle life saver. It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> The implications of that are almost unthinkable.
>
> For those who are wondering.
>
> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
> time in about a half dozen years. This could be attributed to chemo
> courses of dexamethasone, a steroid on steroids or simply to a more
> relaxed attitude to bread and potatoes.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal.
>
> Yes, I have tried evening primrose oil combined with alpha lipoic
> acid. This is where I need folk who are prepared to go the hard yards
> as there could be drug interactions. If you have a sound science
> background and are willing to help please email me. I need all the
> information I can get in order to have a well informed conversation
> with my GP and oncologist.
>
> Best wishes,
> --
> Quentin Grady ^ ^ /
> New Zealand, >#,#< [
> / \ /\
> "... and the blind dog was leading."
>
> http://homepages.paradise.net.nz/quentin

On Jan 2, 2:44*am, Quentin Grady <quen...@paradise.net.nz> wrote:
> G'day G'day Folks,
>
> *It is with some trepidation that I make this post. One option is to
> carry on as though nothing untoward is happening for me. *People out
> there need support which I'm capable of giving. Having a meaningful
> existence is important to personal survival. *Many people with worse
> situations than my own manage to carry on supporting others here.
> I'd like to do the same without invoking a stressful situation.
>
> However at this moment in time I need the help of other people, people
> who are willing to devote some time to finding solutions where
> solutions are unlikely to have been found before. *
>
> You see things are not going well for me at the moment. *Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. *A stem cell transplant failed completely. *The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. *For me it
> has been a miracle life saver. *It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. *I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. *It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> The implications of that are almost unthinkable. *
>
> For those who are wondering.
>
> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
> time in about a half dozen years. This could be attributed to chemo
> courses of dexamethasone, a steroid on steroids or simply to a more
> relaxed attitude to bread and potatoes.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal. *
>
> Yes, I have tried evening primrose oil combined with alpha lipoic
> acid. *This is where I need folk who are prepared to go the hard yards
> as there could be drug interactions. If you have a sound science
> background and are willing to help please email me. I need all the
> information I can get in order to have a well informed conversation
> with my GP and oncologist.
>
> Best wishes, * *
> --
> Quentin Grady * * * ^ *^ */
> New Zealand, * * * >#,#< [
> * * * * * * * * * * / \ /\ * *
> "... and the blind dog was leading."
>
> http://homepages.paradise.net.nz/quentin

I also have no answers, but would like to relate to you a line from
Walt Whitman's "Song of Myself" that has seen me through many a rough
patch:

"Divine am I inside and out, and I make holy whatever I touch or am
touch'd from"

Best wishes,
Black Seamus Murphy

This post not CC'd by email
On Wed, 2 Jan 2008 08:44:06 -0800 (PST), Black Seamus
<blackseamus@gmail.com> wrote:

>I also have no answers, but would like to relate to you a line from
>Walt Whitman's "Song of Myself" that has seen me through many a rough
>patch:
>
>"Divine am I inside and out, and I make holy whatever I touch or am
>touch'd from"
>
>Best wishes,
>Black Seamus Murphy

Thank you.
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

This post not CC'd by email
On Wed, 02 Jan 2008 09:52:04 GMT, "Julie Bove"
<juliebove@verizon.net> wrote:

>Sorry to hear that Quentin. Wish I could be of more help.

Thank you,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

This post not CC'd by email
On Wed, 02 Jan 2008 09:23:44 GMT, "Helen Back"
<SiriusC-63@hotmail.co.uk> wrote:

>With hand on heart, I wish you all the best advice in the world - I pray
>someone out there can help you to make the right choices on what the next
>course of action should be to keeping you leaping through life.
>
>Keep being beautiful, Quentin.

G'day G'day Helen,

Thank you for the best wishes. People are emailing me with offers
which is what I desperately need at the moment.

Best wishes,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

This post not CC'd by email
On Wed, 2 Jan 2008 07:42:55 -0600, "krom"
<thekromremoveremove@hotmail.com> wrote:

>Sadly i have no answers to give but i do offer my support and best wishes.
>
>KROM

Thank you,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

Quentin Grady wrote:
> This post not CC'd by email
> On Wed, 02 Jan 2008 09:23:44 GMT, "Helen Back"
> <SiriusC-63@hotmail.co.uk> wrote:
>
>
>>With hand on heart, I wish you all the best advice in the world - I pray
>>someone out there can help you to make the right choices on what the next
>>course of action should be to keeping you leaping through life.
>>
>>Keep being beautiful, Quentin.
>
>
> G'day G'day Helen,
>
> Thank you for the best wishes. People are emailing me with offers
> which is what I desperately need at the moment.
>
> Best wishes,

I also send you my very best wishes, Quentin! I am glad you are getting
some of the technical assistance for which you are looking!

You are one of the brightest starts on this site, and I wish you well!

Gillian

Quentin Grady wrote:
> G'day G'day Folks,
>
> It is with some trepidation that I make this post. One option is to
> carry on as though nothing untoward is happening for me. People out
> there need support which I'm capable of giving. Having a meaningful
> existence is important to personal survival. Many people with worse
> situations than my own manage to carry on supporting others here.
> I'd like to do the same without invoking a stressful situation.
>
> However at this moment in time I need the help of other people, people
> who are willing to devote some time to finding solutions where
> solutions are unlikely to have been found before.
>
> You see things are not going well for me at the moment. Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. A stem cell transplant failed completely. The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. For me it
> has been a miracle life saver. It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> The implications of that are almost unthinkable.
>
> For those who are wondering.
>
> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
> time in about a half dozen years. This could be attributed to chemo
> courses of dexamethasone, a steroid on steroids or simply to a more
> relaxed attitude to bread and potatoes.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal.
>
> Yes, I have tried evening primrose oil combined with alpha lipoic
> acid. This is where I need folk who are prepared to go the hard yards
> as there could be drug interactions. If you have a sound science
> background and are willing to help please email me. I need all the
> information I can get in order to have a well informed conversation
> with my GP and oncologist.
>
> Best wishes,

Quentin, you have been a very supporting person on the newsgroups for a
number of years now.

I hope that they don't remove you from the thalidimide, being as it has
given you life this far, and seems to be working........... i hope that
you can come up with something to deal with the neuropathy as well

unfortunately, i can only offer my sympathies while you are having this
time of trouble......... i lack the scientific background to understand
the drug interactions

((((((((((((((((((((((((HUGS)))))))))))))))))))))) )))))))
kate

Quentin Grady <quentin@paradise.net.nz> wrote:
: G'day G'day Folks,

: It is with some trepidation that I make this post. One option is to
: carry on as though nothing untoward is happening for me. People out
: there need support which I'm capable of giving. Having a meaningful
: existence is important to personal survival. Many people with worse
: situations than my own manage to carry on supporting others here.
: I'd like to do the same without invoking a stressful situation.

: However at this moment in time I need the help of other people, people
: who are willing to devote some time to finding solutions where
: solutions are unlikely to have been found before.

: You see things are not going well for me at the moment. Most regular
: posters will know I have multiple myeloma, MM, the bone marrow cancer
: that produces excess immunoglobulin G crowding out other healthy forms
: of immunoglobulin. A stem cell transplant failed completely. The
: drug that has produced success is the sleeping tablet thalidomide.
: Thalidomide is the drug that produced all the fetal abnormalities.
: Thalidomide is thought to have a success rate of about 60%. For me it
: has been a miracle life saver. It also has a rate of side effects of
: about 80%. Given the choice; of only 80% side effects, one goes for
: the thalidomide. I've had a few side effects but somehow survived
: them all. The one that is currently hitting me hard is peripheral
: neuropathy. It is so bad my oncologist is seriously considering
: discontinuing the thalidomide treatment.
:
: The implications of that are almost unthinkable.

: For those who are wondering.

: Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
: time in about a half dozen years. This could be attributed to chemo
: courses of dexamethasone, a steroid on steroids or simply to a more
: relaxed attitude to bread and potatoes.

: Coincidentally the most recent chemo course was incredibly successful.
: The indicator of rogue immunoglobulin dropped from 17 to 10 which is
: phenomenal.

: Yes, I have tried evening primrose oil combined with alpha lipoic
: acid. This is where I need folk who are prepared to go the hard yards
: as there could be drug interactions. If you have a sound science
: background and are willing to help please email me. I need all the
: information I can get in order to have a well informed conversation
: with my GP and oncologist.

: Best wishes,
: --
: Quentin Grady ^ ^ /
: New Zealand, >#,#< [
: / \ /\
: "... and the blind dog was leading."

: http://homepages.paradise.net.nz/quentin

Quesntin,

I am so sorry to hear this. I can't help, but I do hope tht those more
experienced in the ways of neuropathies can come up with some ideas for
you. Meanwhile, if a few otatoes or bread give you comfort, indulge, but
only mildly:-)

(((((((((((((((((((((((((((Hugs))))))))))))))))))) ))))))))

Wendy

"Helen Back" <SiriusC-63@hotmail.co.uk> wrote in message
news:AKIej.23201$h35.5275@newsfe2-gui.ntli.net...
>
> "Quentin Grady" <quentin@paradise.net.nz> wrote in message
> news:cihmn3l76rj36umhgph82845anec5brqff@4ax.com...
>> G'day G'day Folks,
>>
>> It is with some trepidation that I make this post. One option is to
>> carry on as though nothing untoward is happening for me. People out
>> there need support which I'm capable of giving. Having a meaningful
>> existence is important to personal survival. Many people with worse
>> situations than my own manage to carry on supporting others here.
>> I'd like to do the same without invoking a stressful situation.
>>
>> However at this moment in time I need the help of other people, people
>> who are willing to devote some time to finding solutions where
>> solutions are unlikely to have been found before.
>>
>> You see things are not going well for me at the moment. Most regular
>> posters will know I have multiple myeloma, MM, the bone marrow cancer
>> that produces excess immunoglobulin G crowding out other healthy forms
>> of immunoglobulin. A stem cell transplant failed completely. The
>> drug that has produced success is the sleeping tablet thalidomide.
>> Thalidomide is the drug that produced all the fetal abnormalities.
>> Thalidomide is thought to have a success rate of about 60%. For me it
>> has been a miracle life saver. It also has a rate of side effects of
>> about 80%. Given the choice; of only 80% side effects, one goes for
>> the thalidomide. I've had a few side effects but somehow survived
>> them all. The one that is currently hitting me hard is peripheral
>> neuropathy. It is so bad my oncologist is seriously considering
>> discontinuing the thalidomide treatment.
>>
>> The implications of that are almost unthinkable.
>>
>> For those who are wondering.
>>
>> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
>> time in about a half dozen years. This could be attributed to chemo
>> courses of dexamethasone, a steroid on steroids or simply to a more
>> relaxed attitude to bread and potatoes.
>>
>> Coincidentally the most recent chemo course was incredibly successful.
>> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
>> phenomenal.
>>
>> Yes, I have tried evening primrose oil combined with alpha lipoic
>> acid. This is where I need folk who are prepared to go the hard yards
>> as there could be drug interactions. If you have a sound science
>> background and are willing to help please email me. I need all the
>> information I can get in order to have a well informed conversation
>> with my GP and oncologist.
>>
>> Best wishes,
>> --
>> Quentin Grady ^ ^ /
>> New Zealand, >#,#< [
>> / \ /\
>> "... and the blind dog was leading."
>>
>> http://homepages.paradise.net.nz/quentin
>
> With hand on heart, I wish you all the best advice in the world - I pray
> someone out there can help you to make the right choices on what the next
> course of action should be to keeping you leaping through life.
>
> Keep being beautiful, Quentin.
>


Dear Quentin, I have been thinking of you lately with plans to write, so
will follow with my plans to do so.

I have an IVIg infusion coming up on the 11th, and I have an idea I want to
put before my endo. I want to drop my carb intake as low as he will let me
to see if it will have a positive effect on my pain side effects from the
drug used. I've been searching the different drugs used, and found that
different brands can have different effects. Why does it take so much
effort to stay alive and virile?

Hang in there man!
I'm with you!-

Ragdoll Billie
http://andlifegoesononedayonestepatatime.blogspot.com/

Striving for a world without Myasthenia Gravis
http://www.myasthenia.org/amg_whatismg.cfm

Quentin, unfortunately I dont have the knowledge or the ability to check
websites as I only have webtv. I wish I could help in some scientific
manner, but I cant, But i can offer you emotional support if you want
to talk to me, you have my address.

Since I found out my daughter is pregnant, I have been attending
Saturday services, I am going to ask the Rabbi to say a special prayer
for you. On Friday, when I light the candles, I will also pray for you

My prayers are with you Quentin.

Loretta

This post not CC'd by email
On Wed, 2 Jan 2008 15:03:27 -0500, sassybklynlady@webtv.net (Loretta
Eisenberg) wrote:

>Quentin, unfortunately I dont have the knowledge or the ability to check
>websites as I only have webtv. I wish I could help in some scientific
>manner, but I cant, But i can offer you emotional support if you want
>to talk to me, you have my address.
>
>Since I found out my daughter is pregnant, I have been attending
>Saturday services, I am going to ask the Rabbi to say a special prayer
>for you. On Friday, when I light the candles, I will also pray for you
>
>My prayers are with you Quentin.
>
>Loretta

G'day G'day Loretta et al,

Thank you for your kind wishes and prayers.

Please excuse me not thanking everyone individually. I know I'm well
loved by many people here and just knowing that gives me strength.

This morning is a bit of a struggle and I need to attend to the
practicalities of life.

Best wishes,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

On 1/2/08 1:23 AM, in article AKIej.23201$h35.5275@newsfe2-gui.ntli.net,
"Helen Back" <SiriusC-63@hotmail.co.uk> wrote:

>
> "Quentin Grady" <quentin@paradise.net.nz> wrote in message
> news:cihmn3l76rj36umhgph82845anec5brqff@4ax.com...
>> G'day G'day Folks,
>>
>> It is with some trepidation that I make this post. One option is to
>> carry on as though nothing untoward is happening for me. People out
>> there need support which I'm capable of giving. Having a meaningful
>> existence is important to personal survival. Many people with worse
>> situations than my own manage to carry on supporting others here.
>> I'd like to do the same without invoking a stressful situation.
>>
>> However at this moment in time I need the help of other people, people
>> who are willing to devote some time to finding solutions where
>> solutions are unlikely to have been found before.
>>
>> You see things are not going well for me at the moment. Most regular
>> posters will know I have multiple myeloma, MM, the bone marrow cancer
>> that produces excess immunoglobulin G crowding out other healthy forms
>> of immunoglobulin. A stem cell transplant failed completely. The
>> drug that has produced success is the sleeping tablet thalidomide.
>> Thalidomide is the drug that produced all the fetal abnormalities.
>> Thalidomide is thought to have a success rate of about 60%. For me it
>> has been a miracle life saver. It also has a rate of side effects of
>> about 80%. Given the choice; of only 80% side effects, one goes for
>> the thalidomide. I've had a few side effects but somehow survived
>> them all. The one that is currently hitting me hard is peripheral
>> neuropathy. It is so bad my oncologist is seriously considering
>> discontinuing the thalidomide treatment.
>>
>> The implications of that are almost unthinkable.
>>
>> For those who are wondering.
>>
>> Yes, my A1c has drifted up to 6.2 being out of the 5s for the first
>> time in about a half dozen years. This could be attributed to chemo
>> courses of dexamethasone, a steroid on steroids or simply to a more
>> relaxed attitude to bread and potatoes.
>>
>> Coincidentally the most recent chemo course was incredibly successful.
>> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
>> phenomenal.
>>
>> Yes, I have tried evening primrose oil combined with alpha lipoic
>> acid. This is where I need folk who are prepared to go the hard yards
>> as there could be drug interactions. If you have a sound science
>> background and are willing to help please email me. I need all the
>> information I can get in order to have a well informed conversation
>> with my GP and oncologist.
>>
>> Best wishes,
>> --
>> Quentin Grady ^ ^ /
>> New Zealand, >#,#< [
>> / \ /\
>> "... and the blind dog was leading."
>>
>> http://homepages.paradise.net.nz/quentin
>
> With hand on heart, I wish you all the best advice in the world - I pray
> someone out there can help you to make the right choices on what the next
> course of action should be to keeping you leaping through life.
>
> Keep being beautiful, Quentin.
>
>
Quentin, I couldn't say what Helen has said nearly as well. Please accept my
heartfelt support to your problem. I can't help, but I know there are
several here who can.

Take care,

--
Martha T2 Canada
1500mg. Metformin, 4mg. Avandia

Quentin --

I'm so glad you're getting responses so quickly -- no surprise there
will all the science-minded folks here so generous with their time. I
know you'll get all the help you need.

I'll be thinking of you -- be well.

--
BlueBrooke
T2/D&E/June 2005
May 2007 A1c 5.5
Oct 2007 Yellow Belt! Yeah!

On Thu, 03 Jan 2008 06:12:20 +1300, Quentin Grady
<quentin@paradise.net.nz> wrote:

> Thank you for the best wishes. People are emailing me with offers
>which is what I desperately need at the moment.

Quentin, if your research team could use someone with time but not the
specific skills you're looking for - give me a yell.

Nicky.
T2 dx 05/04 + underactive thyroid
D&E, 100ug thyroxine
Last A1c 5.6% BMI 25

Hi Quentin:


> Most regular
> posters will know I have multiple myeloma, MM, the bone marrow cancer
> that produces excess immunoglobulin G crowding out other healthy forms
> of immunoglobulin. A stem cell transplant failed completely. The
> drug that has produced success is the sleeping tablet thalidomide.
> Thalidomide is the drug that produced all the fetal abnormalities.
> Thalidomide is thought to have a success rate of about 60%. For me it
> has been a miracle life saver. It also has a rate of side effects of
> about 80%. Given the choice; of only 80% side effects, one goes for
> the thalidomide. I've had a few side effects but somehow survived
> them all. The one that is currently hitting me hard is peripheral
> neuropathy. It is so bad my oncologist is seriously considering
> discontinuing the thalidomide treatment.
>
> Coincidentally the most recent chemo course was incredibly successful.
> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
> phenomenal.


Multiple Myeloma

Updated: October 12, 2007

* Comprehensive overview of
Multiple Myeloma
* Explore your treatment options
* Learn about new developments
* Read medical journal abstracts
* Find doctors, hospitals, research centers

More Information About the Guidebook

Introduction

Multiple myeloma (MM) is one of several cancers categorized as "plasma
cell dyscrasias." They account for 10% of all blood system malignancies.

The immune system has several types of cells that work together to fight
infection and disease. Lymphocytes are the main immune system cell
types. When B-cell lymphocytes respond to an infection, they mature and
change into plasma cells, which produce and release proteins called
immunoglobulins (antibodies) that attack and help kill disease-causing
germs.

But, when these plasma cells grow out of control, they can produce
tumors that in several sites, especially in bone marrow (plasmacytomas).
When these tumors grow in multiple sites, they are called multiple
myeloma (MM). - http://tinyurl.com/2uejx2

Multiple Myeloma Cancer Center -
http://tinyurl.com/2zdus8

Multiple myeloma therapy, compound from marine bacteria shows potential
- http://www.medicalnewstoday.com/articles/33560.php (2005 artical)
"In preclinical studies, NPI-0052 blocks a wider range of proteasome
activities than bortezomib, say the researchers, and works at lower
doses. NPI-0052 also appears to be less toxic to normal cells.
Bortezomib is currently given by intravenous infusion. "NPI-0052 can be
given orally, although the first clinical trials will be using the
intravenous route," says Paul Richardson, M.D, who is also a co-author
in this study and will be leading the Phase-I clinical trial in myeloma
at Dana-Farber."

Scholar.google search for NPI-0052 - http://tinyurl.com/397oz6
(Salinosporamide A).

The proteasome inhibitor NPI-0052 is a more effective inducer of
apoptosis than bortezomib in lymphocytes from patients with chronic
lymphocytic leukemia - http://mct.aacrjournals.org/cgi/content/full/5/7/1836
Citations of Ruiz artical above - http://tinyurl.com/2p8t9q - such as
NPI-0052, a novel proteasome inhibitor, induces caspase-8 and
ROS-dependent apoptosis alone and in combination with HDAC inhibitors in
leukemia cells -
http://bloodjournal.hematologylibrar...ract/110/1/267

Google Groups Archives on Multiple Myeloma prior to my post on the
alt.support.cancer newsgroup Sunday afternoon - http://tinyurl.com/23chmb.

I am waiting for a Google Group archive of a long post covering previous
e-mails to QG since certainty of receipts seems to be a problem.

Frank

This post not CC'd by email
On Mon, 07 Jan 2008 05:06:15 -0500, Jefferson
<fwroy@adelphia.netexopheno> wrote:

>Hi Quentin:
>
>
>> Most regular
>> posters will know I have multiple myeloma, MM, the bone marrow cancer
>> that produces excess immunoglobulin G crowding out other healthy forms
>> of immunoglobulin. A stem cell transplant failed completely. The
>> drug that has produced success is the sleeping tablet thalidomide.
>> Thalidomide is the drug that produced all the fetal abnormalities.
>> Thalidomide is thought to have a success rate of about 60%. For me it
>> has been a miracle life saver. It also has a rate of side effects of
>> about 80%. Given the choice; of only 80% side effects, one goes for
>> the thalidomide. I've had a few side effects but somehow survived
>> them all. The one that is currently hitting me hard is peripheral
>> neuropathy. It is so bad my oncologist is seriously considering
>> discontinuing the thalidomide treatment.
>>
>> Coincidentally the most recent chemo course was incredibly successful.
>> The indicator of rogue immunoglobulin dropped from 17 to 10 which is
>> phenomenal.

G'day G'day Frank,

Thank you for all the information on treatment for multiple myeloma.
It helps me have intelligent conversations with my oncologist or his
interns.

(My favourite intern is called Susan. Most of them a very good she
however seems smarter than most. It is easy to spot that she has read
my notes, discussed them and given them considerable thought. Those
who read Terry Pratchet will recognise an irony here. Perhaps Susan is
one of my favourite Terry Pratchet characters.)

I've tried to reply to your emails. Comcast however have decided my
emails are spam thanks largely to me using Incredimail. Repeatedly
trying to reach you has only made things worse as I discovered when I
approached them to have the spam block removed. All the trying has
caused them to deny me access on the grounds that a large volume of
spam has originated from the isp number. There is a lesson for others
here. Explaining that I need your help has had zero effect.

In the mean time I may need to reply via a third party.


[continued at the end of the post]

>Multiple Myeloma
>
>Updated: October 12, 2007
>
> * Comprehensive overview of
> Multiple Myeloma
> * Explore your treatment options
> * Learn about new developments
> * Read medical journal abstracts
> * Find doctors, hospitals, research centers
>
>More Information About the Guidebook
>
>Introduction
>
>Multiple myeloma (MM) is one of several cancers categorized as "plasma
>cell dyscrasias." They account for 10% of all blood system malignancies.
>
>The immune system has several types of cells that work together to fight
>infection and disease. Lymphocytes are the main immune system cell
>types. When B-cell lymphocytes respond to an infection, they mature and
>change into plasma cells, which produce and release proteins called
>immunoglobulins (antibodies) that attack and help kill disease-causing
>germs.
>
>But, when these plasma cells grow out of control, they can produce
>tumors that in several sites, especially in bone marrow (plasmacytomas).
>When these tumors grow in multiple sites, they are called multiple
>myeloma (MM). - http://tinyurl.com/2uejx2
>
>Multiple Myeloma Cancer Center -
>http://tinyurl.com/2zdus8
>
>Multiple myeloma therapy, compound from marine bacteria shows potential
>- http://www.medicalnewstoday.com/articles/33560.php (2005 artical)
>"In preclinical studies, NPI-0052 blocks a wider range of proteasome
>activities than bortezomib, say the researchers, and works at lower
>doses. NPI-0052 also appears to be less toxic to normal cells.
>Bortezomib is currently given by intravenous infusion. "NPI-0052 can be
>given orally, although the first clinical trials will be using the
>intravenous route," says Paul Richardson, M.D, who is also a co-author
>in this study and will be leading the Phase-I clinical trial in myeloma
>at Dana-Farber."
>
>Scholar.google search for NPI-0052 - http://tinyurl.com/397oz6
>(Salinosporamide A).
>
>The proteasome inhibitor NPI-0052 is a more effective inducer of
>apoptosis than bortezomib in lymphocytes from patients with chronic
>lymphocytic leukemia - http://mct.aacrjournals.org/cgi/content/full/5/7/1836
>Citations of Ruiz artical above - http://tinyurl.com/2p8t9q - such as
>NPI-0052, a novel proteasome inhibitor, induces caspase-8 and
>ROS-dependent apoptosis alone and in combination with HDAC inhibitors in
>leukemia cells -
>http://bloodjournal.hematologylibrar...ract/110/1/267
>
>Google Groups Archives on Multiple Myeloma prior to my post on the
>alt.support.cancer newsgroup Sunday afternoon - http://tinyurl.com/23chmb.
>
>I am waiting for a Google Group archive of a long post covering previous
>e-mails to QG since certainty of receipts seems to be a problem.
>
>Frank

Frank. When you look at treatment for MM it is possible that you are
considering only the scientific efficacy of various treatments. This
of course is not how it happens here in NZ. Cost is of major concern.
Fortunately my oncologist is at the top of the tree as it were. What
he says goes when doctors discuss my treatment. Well on one occasion
he considered a new treatment after the stem cell treatment failed
completely. The catch was he was allocated FOUR treatments that year.
He had to choose who to give them to. It is then that one realises
one's worth to society is calculated with a mathematical formula.

As it happened thalidomide treatment became available and the question
was not put.

Best wishes,
--
Quentin Grady ^ ^ /
New Zealand, >#,#< [
/ \ /\
"... and the blind dog was leading."

http://homepages.paradise.net.nz/quentin

Jefferson wrote:

> Google Groups Archives on Multiple Myeloma prior to my post on the
> alt.support.cancer newsgroup Sunday afternoon - http://tinyurl.com/23chmb.


> I am waiting for a Google Group archive of a long post covering previous
> e-mails to QG since certainty of receipts seems to be a problem.

Ok, my post is the second one listed for "Multiple Myeloma
Therapy"+Jefferson - http://tinyurl.com/2l3lf5. This was a long post but
it is not likely that I will post in that newsgroup often.

Frank