O my!! Tommorrow is IV steroid day,
Have I alienated everyone from the previous ones?
I hope not.
Please forgive me if I have.
I have strengths and weaknesses like all of us.
But these steroids bring out the best & worst.
I am a good person. I pride being a positive contributor.
My spouse read several of my recent posts and
sorry if I may have given a wrong impression
I am not myself...my hubby has assured me that I am not.( but he likes my Deliah)
and so he just told me. And this forum doesn't get that side.
I fear you may have seen my best and then the worse now I just need to sit on the sidelines.
I ask your forgiveness.
Forums
Re: STEROIDS
Dear Suzierose,
In my opinion, your true heart of compassion and empathy for those who also have this horrible disease is evident in the time you take to share so much helpful/encouraging information, and also in the sincerity of your apology.
My experience with the "Beacon" is that we are truly connected as a "family", who share one another's joys, sorrows, and occasional steriod-induced outbursts!!
Personally, I think your apology is unnecessary, but it does reveal your sweet spirit! I'm sure others in this family will join me in saying that you are loved and appreciated!!!
Lisa B.
In my opinion, your true heart of compassion and empathy for those who also have this horrible disease is evident in the time you take to share so much helpful/encouraging information, and also in the sincerity of your apology.
My experience with the "Beacon" is that we are truly connected as a "family", who share one another's joys, sorrows, and occasional steriod-induced outbursts!!
Personally, I think your apology is unnecessary, but it does reveal your sweet spirit! I'm sure others in this family will join me in saying that you are loved and appreciated!!!
Lisa B.
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Lisa B. - Name: Lisa B.
- Who do you know with myeloma?: My mother, Barbara Henson
- When were you/they diagnosed?: 10-28-11
- Age at diagnosis: 71
Re: STEROIDS
Hi Suzierose and Lisa...
Lisa, I really agree with you! Suzie, you are an awesome edition to the online postings...I have learned a lot from your postings, and admire your energy, intelligence and savvy.
In this world of relapsing patients, which everyone says is be the norm, we may all be on ALL the differing chemo treatments, if the fates allow.
I have already taken, since '09, Velcade, Dex, Cytoxaphan (?), Melphalan, and Revlimid. Yikes..its like a pharmacopeia unto itself! Even if the whole 'system' has its flaws, I am very grateful to have received those treatments...they literally saved my life. God works in mysterious ways, nest-ce pas?
So , who knows, maybe I will need carblloxifan too, in the future, and hope it will be there for me. I will write letters for it when the time is right. Best wishes in your quest too. It has been a real pleasure 'meeting you' online. ... Nancy
Lisa, I really agree with you! Suzie, you are an awesome edition to the online postings...I have learned a lot from your postings, and admire your energy, intelligence and savvy.
In this world of relapsing patients, which everyone says is be the norm, we may all be on ALL the differing chemo treatments, if the fates allow.
I have already taken, since '09, Velcade, Dex, Cytoxaphan (?), Melphalan, and Revlimid. Yikes..its like a pharmacopeia unto itself! Even if the whole 'system' has its flaws, I am very grateful to have received those treatments...they literally saved my life. God works in mysterious ways, nest-ce pas?
So , who knows, maybe I will need carblloxifan too, in the future, and hope it will be there for me. I will write letters for it when the time is right. Best wishes in your quest too. It has been a real pleasure 'meeting you' online. ... Nancy
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: STEROIDS
I have to "pile on" and agree with the earlier comments. I enjoy reading your very insightful posts and your many contributions to this blog. Having been on steroids last Jan through March I certainly understand not feeling like yourself. I was very irritable at times not to mention not sleeping and the weight gain which thankfully came off farily easily once the Dex was stopped.
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indy mike - Name: Mike Mathias
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 51
Re: STEROIDS
Hi, Suzierose:
From you posts to the forum, you are a knowledgeable, intelligent and warm person fast to come to the help of your fellow patients. Everyone has the right to speak his or her mind and even vent sometimes. Don't be too hard on yourself. Hope you remain the contributor to the many discussions on the forum as you have always been, not just sitting on the sideline. And best wishes for your own treatment!
Ben
From you posts to the forum, you are a knowledgeable, intelligent and warm person fast to come to the help of your fellow patients. Everyone has the right to speak his or her mind and even vent sometimes. Don't be too hard on yourself. Hope you remain the contributor to the many discussions on the forum as you have always been, not just sitting on the sideline. And best wishes for your own treatment!
Ben
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Ben S.
Re: STEROIDS
Suzierose,
I agree with everyone else - your posts are VERY informative and you have uncovered some great research that I have learned a lot from. I like the fact that you express your opinions on different subjects and your academic/work background gives you a unique perspective that most of us do not have.
Speaking of opinions, in one of your posts with respect to Lou's recent article you said:
"Yes, many doctors receive funding from the industry that is their choice and it is a two-sided street. One need not talk down to any doctor to pursue the rationale for their decision or decision making process. "
I really feel that doctors receiving consulting fees, honoraria, and sitting on drug companies boards of directors is a really big issue. From my own experience, the doctor I chose to treat me is the only one whose research papers say no relevant conflicts of interest, and she is the only one that described a treatment plan that could potentially offer me long-term drug free remission. The other treatment plans discussed with me always sounded better for Celgene's stock price than my QOL.
Do you think the financial compensation treating doctors receive from the drug companies is as big of an issue as I do?
Mark
I agree with everyone else - your posts are VERY informative and you have uncovered some great research that I have learned a lot from. I like the fact that you express your opinions on different subjects and your academic/work background gives you a unique perspective that most of us do not have.
Speaking of opinions, in one of your posts with respect to Lou's recent article you said:
"Yes, many doctors receive funding from the industry that is their choice and it is a two-sided street. One need not talk down to any doctor to pursue the rationale for their decision or decision making process. "
I really feel that doctors receiving consulting fees, honoraria, and sitting on drug companies boards of directors is a really big issue. From my own experience, the doctor I chose to treat me is the only one whose research papers say no relevant conflicts of interest, and she is the only one that described a treatment plan that could potentially offer me long-term drug free remission. The other treatment plans discussed with me always sounded better for Celgene's stock price than my QOL.
Do you think the financial compensation treating doctors receive from the drug companies is as big of an issue as I do?
Mark
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Mark
Re: STEROIDS
Hehe... had to laugh at this a bit, Suzie. I read those posts, and just kind of nodded to myself and smiled: "oh yeah... she is SO on Dex!" Many of us have been there / done that, girl. It's one of the wonders of the Marvelous Myeloma Ride. No need at all to apologize... you just keep on keeping on and we'll all do the ride together, OK?
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Snip - Name: John Snippe
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Jan, 2011
- Age at diagnosis: 56
Re: STEROIDS
Hello ALL!
OMG!!
I checked out for for awhile and did not see these respsones!!
I am overwhwelmed by your compassion, caring and sharing!!
It means so much.
Of course I found it tonight...cause I am seriously DEXing!!
This drug is a helluva TRIP!!
I was so afraid of offending folks but your posts have made me realize that even in the mist of the Steroid rage...there is positive.
Thank you for being there and sharing. I needed this
But I also gotta tell you. These drugs have taken my mental acuity.
I cannot focus like I did. I can not analyze, deduce and reason with the same skill.
That is frightetning.
My only strength in life has been my mind and losing that edge is scaring me.
I can search out studies but my understanding is diminished.
Searching remains..but assurance on deductive reasoning has wavered.
Love u all
sorry for my diminished capicity.
Still striving.
OMG!!
I checked out for for awhile and did not see these respsones!!
I am overwhwelmed by your compassion, caring and sharing!!
It means so much.
Of course I found it tonight...cause I am seriously DEXing!!
This drug is a helluva TRIP!!
I was so afraid of offending folks but your posts have made me realize that even in the mist of the Steroid rage...there is positive.
Thank you for being there and sharing. I needed this
But I also gotta tell you. These drugs have taken my mental acuity.
I cannot focus like I did. I can not analyze, deduce and reason with the same skill.
That is frightetning.
My only strength in life has been my mind and losing that edge is scaring me.
I can search out studies but my understanding is diminished.
Searching remains..but assurance on deductive reasoning has wavered.
Love u all
sorry for my diminished capicity.
Still striving.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: STEROIDS
So let me ask you guys...
What do you do?
God gives all of us different strengts and abilities.
We build our lives aroung those potentials...so when you see they are eroding.
What do you do? Where do you go? What do you rely on? How do you cope when your strengths are not there?
How do you focus, how do you feel, if poosible, that choices/decisions are the best?
I am so overwhelmed by this.
Yes I am type A.
How do you adjust.
Is there a process of trust, other than family...who may not have ever had your skills, but that was what you brought to the table? If your family was a team, and you were the point guard..what do you do?
I mean a point guard, knows timing strengths and favorite shot spots and delivers the ball..that is a womans role in the family...what do you do..when you can no longer distribute the ball to the right person and more importantly deliver it quickly for them to make the shot when they in the spot.
DEXing....DEXing!!
What do you do?
God gives all of us different strengts and abilities.
We build our lives aroung those potentials...so when you see they are eroding.
What do you do? Where do you go? What do you rely on? How do you cope when your strengths are not there?
How do you focus, how do you feel, if poosible, that choices/decisions are the best?
I am so overwhelmed by this.
Yes I am type A.
How do you adjust.
Is there a process of trust, other than family...who may not have ever had your skills, but that was what you brought to the table? If your family was a team, and you were the point guard..what do you do?
I mean a point guard, knows timing strengths and favorite shot spots and delivers the ball..that is a womans role in the family...what do you do..when you can no longer distribute the ball to the right person and more importantly deliver it quickly for them to make the shot when they in the spot.
DEXing....DEXing!!
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Anonymous
Re: STEROIDS
Another question?
Is the UP of DEX addictive..the energy, the focus...is is like a narcotive like? Do you ever wanna take it not to feel the crash?
Just curious.
didn't realize I was not logged in..! that anonymous was me also
DEX!!!
Is the UP of DEX addictive..the energy, the focus...is is like a narcotive like? Do you ever wanna take it not to feel the crash?
Just curious.
didn't realize I was not logged in..! that anonymous was me also
DEX!!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
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