The Myeloma Beacon

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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: STEROIDS

by suzierose on Wed Feb 29, 2012 2:32 am

Hey Snip!!

""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 "

You are so genuinely on target, it makes me cry sometimes, with the reality of it all...
I just ask folks what can be more cruel than taking your mind?

IOWs..here is one of my favorite ice breaker questions:

If someone offered you the ability to have all the riches and life of your wildest dreams for 90 days and at the end of those 90 days you would have no memory of it...would you take it?

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: STEROIDS

by suzierose on Wed Feb 29, 2012 2:37 am

Mark, Indy, Ben, Nancy, Lisa

Can't believe it has taken me so long to get back and see this thread. Your posts are so meaningful and uplifting. I am going to keep on striving to be that person. But I gotta tell you these drugs are taking a toll on my mental abilits.

Thank you for giving me such positive feedback. My motto is I do not want to be the light I want to be enlightened and enlighten. thankyou for letting me know that I have done that!!

Wishings you all blessings that are overdue!!

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: STEROIDS

by suzierose on Wed Feb 29, 2012 2:44 am

xxxx
crazy mad crazy on dex

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: STEROIDS

by suzierose on Wed Feb 29, 2012 2:46 am

xx

suzierose
Name: suzierose
When were you/they diagnosed?: 2 sept 2011

Re: STEROIDS

by Nancy Shamanna on Wed Feb 29, 2012 10:44 am

Hi Suzierose......Imagine my surprise when I checked this a.m. and saw several posts from you. I would think that since the 'dex' is really bothering you, you should check with your excellent physicians about it. They may have some alternative strategies! I am sure that the NIH is a very TOP facility, in North America.

I went through something similar, and I guess that is, at least for now, in the past.

Are your references to 'point' person, from basketball? I sometimes think of all this information sharing as being akin to a game of volleyball, or hockey. You know, the ball is 'set up' in volleyball and then someone spikes it over the net. Or in hockey, a 'passing' game is how the puck gets down the ice. All depends on the goalie as to whether there is a goal or not. Some of our online chats are like that. wE try to problem solve stuff that way.

W
Last edited by Nancy Shamanna on Thu Mar 01, 2012 9:16 am, edited 1 time in total.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: STEROIDS

by indy mike on Wed Feb 29, 2012 11:22 am

Hi Suzierose, you are among friends here so this is a good place to vent. Most of us have at one time or another been under the spell of roid rage. I can remember being very short with my 10 year old daughter. My patience level was virtually nonexistent and she is a fairly easygoing child so it was generally misplaced. She seemed to be the focal point but I found myself getting testy in public with store clerks, other drivers etc. The worst part of it is I felt like a bystander; it felt out of my control.

The weight gain is a whole other topic.....

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

by Kevin J on Wed Feb 29, 2012 12:59 pm

suzierose, I concur with others here in saying we all understand what you go through, so don't worry about it. I view the people on this sight as an extended family / support group. As such, there will be ups and downs for all of us. We can share in each other's good times and support each other and be empathetic when it gets tough.

I can't really offer much advice on dealing with the dex, since it doesn't seem to have the severe effects on me that it does on others. It probably helps that I'm a very laid back person to begin with - I was once told I have the volatility of a doorknob. For me, the effects are increased heart rate, and a little edginess, but not much more. I do find that doing something to get my body and mind occupied helps - usually biking, or working on some project. It also helps if the things I do to occupy myself are not too difficult, since I do struggle concentrating and doing complex work at times. Doing things on my own helps as well since I'm more self-conscious of the issues if I'm in an environment where I'm interacting with others.

Kevin J
Name: Kevin J
Who do you know with myeloma?: myself
When were you/they diagnosed?: Jan 2011
Age at diagnosis: 52

Re: STEROIDS

by terryl1 on Wed Feb 29, 2012 5:24 pm

Hi All, I am currently smoldering and dreading the day I have to start treatment based on all of these posts since I work daily in a public courthouse and retirement is not an option as I need to work to maintain my health insurance. To the Canadians on this blog, welcome to the US health care system. I was just wondering if xanax, valium, etc. is prescribed to counter dex's bad side effects. If not, why?

terryl1
Name: Terry
Who do you know with myeloma?: self
When were you/they diagnosed?: August 10, 2011
Age at diagnosis: 49

Re: STEROIDS

by Ed Garbarino on Thu Mar 01, 2012 3:52 am

I have been following the beacon. And I have really received a lot from it. It's nice to see that I am not alone. I just started treatment Sunday night with my first dose of Revlimid 25 mg. I took my first dose of dexamethasone 80 mg this morning. So far I have not had any negative side effects from the meds but it is early in treatment. I started juicing and eating raw one month ago. I am doing what I can to give my body the best environment for its immune system. I drink essiac tea and juice wheat and barley grass daily. I think that is helping me.

Suzie, I have always been impressed by your posts. And to Terryl I hope you'll keep coming back. We do need one another and i'm glad to be here.

Ed Garbarino

Re: STEROIDS

by Canuck Bob on Tue Mar 20, 2012 5:17 pm

I'm a lumpy old jock linebacker. I hated Dex as my response was very aggresive and angry with limited control. It is the drug that I would walk on coals to avoid going forward!

Canuck Bob
Name: Bob
Who do you know with myeloma?: Myself
When were you/they diagnosed?: Feb. 2011
Age at diagnosis: 57

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