I get asked about various melanoma drugs a lot. Though I've never used any and cannot speak from experience, I do have access to a lot of people who have either tried, or are currently using, the treatments that are available. Not everybody, though, has access to advice about how to handle side effects or what to watch for. You can, and should, talk with your doctor, but I've noticed that when side effects start, people want to know if theirs is "normal" and they want to know what to do about it right then...not call the doctor's office. Also, not all my melahomies are in groups where they can pick the finest and kindest minds around for info.
That's where this post may come in handy. I'll be the first to admit that this will not be an exhaustive list of resources by any means, but hopefully it will be helpful.
All drug manufacturers have websites, and often an individual drug will have its own site. Here are three drug sites where you'll find patient resources of various kinds. You'll also find possible side effects that are associated with the drug and possible remedies. You'll learn when to call your doctor. Scour the website of your drug. NOTE: I'm using the more common names and not the scientific name.
Zelboraf
Yervoy
IL-2
Temodar has a site but it's only for "health professionals." If you click on "not a health professional" you will get Merck's website. Which, be sure to look at the website of your drug's manufacturer as that is where you may also find info for patient assist programs, etc.
Information for Interferon alfa 2-b and all the Interferons, as well as the above drugs and more, can be plugged into drugs.com which is the go-to site for pharmacists.
The information at drugs.com can also be easier to understand for laypeople. Information is out there. Do an Internet search and see if your drug has a website. If it doesn't, its manufacturer certainly will. And do check out what drugs.com says about your drug.
Information from reliable sources is out there and at our fingertips. And, by all means, plug into support groups if at all possible. There are excellent ones online, particularly on Facebook.
We're in this together.
charis
Thursday, August 29, 2013
Monday, August 12, 2013
HM CBQ Tsk-Tsks Fellow Clergy Regarding Melanoma
I'm on a roll, I guess. My melahomies need me to put on my Hotel Melanoma Chaplain Boss Queen hat, again, and issue a tsk-tsk that I regret having to make. This one goes out to some of my fellow clergy. I know there are many who do, indeed, know what melanoma is. They have it themselves or have seen it up close and personal in loved ones. I am not the only person standing behind a pulpit who also lives with this diagnosis. Nor am I the only one with an understanding of this disease. But I know there is one clergyperson who is ignorant, and where there is one, there are more. This post is for the clergyperson whose attitude toward melanoma is...
"not a big deal, people have that all the time, and they will just cut it out." The full context of this is in a comment that was left under my last post. Here's the relevant part, "Honestly, I have not been to church all summer because of the response I got from our pastor when I called to tell her about my melanoma diagnosis. Her response was that it was not a big deal, people have that all the time, and they will just cut it out. I'm tempted to send her a photo of my scar."
If that sounds familiar and is your attitude, please read this post Skin Cancer and Melanoma for Dummies. Read about the different stages at Aim at Melanoma.
And understand this and understand it well: a lack of understanding and compassion for your parishioner who has a melanoma diagnosis, at any stage, may cost you a parishioner, maybe even a whole family. It may cost you your reputation if they bad-mouth you to others and talk about how unfeeling you are. And understand your parishioner may die from this disease. Even if the person first calls you and tells you they are stage 0 or 1a. That can progress to stage 4 within a year. It's rare, but that happens. And once it progresses to stage 4, depending on where it spreads, how aggressive it is, and how well your parishioner responds to treatment(s), your parishioner could die within months from that stage 4 progression. Prayerfully that scenario won't happen. But it can. It does.
Melanoma is NOT the same as basal cell or squamous cell carcinomas. Both of which, by the way are scarring, disfiguring, and can be fatal...though rarely, particularly it's rare for basal cell to lead to death but it can happen. Read that post I linked to a couple of paragraphs up and do a blog site search about melanoma. Melanoma is not "just" skin cancer. It shouldn't even be still called "skin cancer" and the more you learn about basal cell and squamous cell...well, they aren't "just" skin cancer either.
I hope that when anyone in the clergy hears that a parishioner has cancer of any kind and any stage that "it's no big deal" is not the response. And frankly, I cannot imagine that it will be. Why is it the response, for some, towards melanoma?
Learn about this disease.
Oh, and by the way, if you're old enough to be in the pulpit, you're old enough to have had a sunburn or two in your past. You may have been in a tanning bed. And since you're human, you have a body. This disease doesn't need skin to start or spread in. A body works well. Got a mouth? Eyes? Ear canals? A rectum? Nails? This disease can literally start anywhere. Any race, age, or gender. And you know another horrible truth about this disease? People who have never had a sunburn, been in a tanning bed, or have a family history of this disease...get it.
So...from one preacher to another...listen to this Southern Mama Preacher with stage 3b melanoma.
I'll be grateful.
charis
"not a big deal, people have that all the time, and they will just cut it out." The full context of this is in a comment that was left under my last post. Here's the relevant part, "Honestly, I have not been to church all summer because of the response I got from our pastor when I called to tell her about my melanoma diagnosis. Her response was that it was not a big deal, people have that all the time, and they will just cut it out. I'm tempted to send her a photo of my scar."
If that sounds familiar and is your attitude, please read this post Skin Cancer and Melanoma for Dummies. Read about the different stages at Aim at Melanoma.
And understand this and understand it well: a lack of understanding and compassion for your parishioner who has a melanoma diagnosis, at any stage, may cost you a parishioner, maybe even a whole family. It may cost you your reputation if they bad-mouth you to others and talk about how unfeeling you are. And understand your parishioner may die from this disease. Even if the person first calls you and tells you they are stage 0 or 1a. That can progress to stage 4 within a year. It's rare, but that happens. And once it progresses to stage 4, depending on where it spreads, how aggressive it is, and how well your parishioner responds to treatment(s), your parishioner could die within months from that stage 4 progression. Prayerfully that scenario won't happen. But it can. It does.
Melanoma is NOT the same as basal cell or squamous cell carcinomas. Both of which, by the way are scarring, disfiguring, and can be fatal...though rarely, particularly it's rare for basal cell to lead to death but it can happen. Read that post I linked to a couple of paragraphs up and do a blog site search about melanoma. Melanoma is not "just" skin cancer. It shouldn't even be still called "skin cancer" and the more you learn about basal cell and squamous cell...well, they aren't "just" skin cancer either.
I hope that when anyone in the clergy hears that a parishioner has cancer of any kind and any stage that "it's no big deal" is not the response. And frankly, I cannot imagine that it will be. Why is it the response, for some, towards melanoma?
Learn about this disease.
Oh, and by the way, if you're old enough to be in the pulpit, you're old enough to have had a sunburn or two in your past. You may have been in a tanning bed. And since you're human, you have a body. This disease doesn't need skin to start or spread in. A body works well. Got a mouth? Eyes? Ear canals? A rectum? Nails? This disease can literally start anywhere. Any race, age, or gender. And you know another horrible truth about this disease? People who have never had a sunburn, been in a tanning bed, or have a family history of this disease...get it.
So...from one preacher to another...listen to this Southern Mama Preacher with stage 3b melanoma.
I'll be grateful.
charis
Saturday, August 10, 2013
HM CBQ Rises Up and Sounds Off
Man. I haven't had reason, or just cause, to don my tri-cornered HM CBQ hat in quite a while now. For the unenlightened, I'm the appointed Hotel Melanoma Chaplain Boss Queen. Before that I was, and still am, a Southern Mama Preacher. Mix that all together, stir or shake well, and I'm whatcha get. And right now, I'm plenty fired up. Watch out.
While I have one foot firmly rooted in the church, I also have the other foot firmly entrenched in the melanoma community. My melahomies have my heart, soul, and undying devotion. By "melahomies" I mean those with melanoma and those who battle alongside them...usually their spouse, child, parent, or sibling. Those closest to the warrior who knows all the details of the battle. And those, ahem, who are well aware of the attitudes of others toward their loved one.
Let me grab my trusty soapbox because I am rising up. If you have a complacent attitude towards melanoma, you might want to sit down. Or tune out. Or go into denial and think I can't possibly mean you.
"Denial" is what I want to think many people are into. But maybe not. Everyone's different.
I'm hearing over-and-over and over-again from melahomies who are growing increasingly frustrated by family and friends' flippant, and downright appallingly arrogant/ignorant attitudes about this disease. Flaunting tanning bed usage and sunburns is bad enough. But to hear of a loved one who has multiple surgeries in their battle against melanoma...a loved one...not a mere acquaintance...and shrug it off. To hear of a loved one undergoing a clinical trial and react with, "meh,"...well, we need to talk.
You need to understand how serious this is and what your loved one is up against and battling and how much they need your support. A text will not cut it.
If your loved one is undergoing multiple surgeries...the kind where they have to be put to sleep...then your loved one is in the stage 3-4 range. They are having lymph nodes removed at best and parts of major organs removed at worst. They are having tumors removed. If your loved one is undergoing any type of radiation, same thing. They are fighting mets and are in the later stage 3-4 range. If they are undergoing clinical trials, they are in the stage 3-4 range. And just so you know, stage 4 is as high as it goes. There is no stage 5.
This is serious. The disease can progress. They may die. They are doing everything they can to stop their melanoma and beat it back. They can use your support. They need you to understand, or at least try to understand. They need you to learn, ask questions, pray. They need a hug now and then. They need you to get your head out of the sand if you're in denial. This is real. Being put to sleep for surgery is risky. Getting infused with toxic chemicals that are being STUDIED is risky. Not fighting melanoma is riskier. Your loved one doesn't have much of a choice. It's either fight or die. Really.
I invite you to do a blog site search and learn about this disease. Especially since it's in your family tree. It really may behoove you to learn something, become vigilant and proactive, and maybe, just maybe, you won't be the next one in your family receiving a melanoma diagnosis and needing your family to rally around you!
Oh, and stop posting about going tanning and getting burned. That isn't good for your skin. At all. That's the sign of damaged skin. Your skin won't forgive and it won't forget. It just may rise up and bite you one day.
And I'll be your HM CBQ and I'll love you as my melahomey.
I'm pretty sure, though, that we'd both rather be grateful that that not happen.
charis
While I have one foot firmly rooted in the church, I also have the other foot firmly entrenched in the melanoma community. My melahomies have my heart, soul, and undying devotion. By "melahomies" I mean those with melanoma and those who battle alongside them...usually their spouse, child, parent, or sibling. Those closest to the warrior who knows all the details of the battle. And those, ahem, who are well aware of the attitudes of others toward their loved one.
Let me grab my trusty soapbox because I am rising up. If you have a complacent attitude towards melanoma, you might want to sit down. Or tune out. Or go into denial and think I can't possibly mean you.
"Denial" is what I want to think many people are into. But maybe not. Everyone's different.
I'm hearing over-and-over and over-again from melahomies who are growing increasingly frustrated by family and friends' flippant, and downright appallingly arrogant/ignorant attitudes about this disease. Flaunting tanning bed usage and sunburns is bad enough. But to hear of a loved one who has multiple surgeries in their battle against melanoma...a loved one...not a mere acquaintance...and shrug it off. To hear of a loved one undergoing a clinical trial and react with, "meh,"...well, we need to talk.
You need to understand how serious this is and what your loved one is up against and battling and how much they need your support. A text will not cut it.
If your loved one is undergoing multiple surgeries...the kind where they have to be put to sleep...then your loved one is in the stage 3-4 range. They are having lymph nodes removed at best and parts of major organs removed at worst. They are having tumors removed. If your loved one is undergoing any type of radiation, same thing. They are fighting mets and are in the later stage 3-4 range. If they are undergoing clinical trials, they are in the stage 3-4 range. And just so you know, stage 4 is as high as it goes. There is no stage 5.
This is serious. The disease can progress. They may die. They are doing everything they can to stop their melanoma and beat it back. They can use your support. They need you to understand, or at least try to understand. They need you to learn, ask questions, pray. They need a hug now and then. They need you to get your head out of the sand if you're in denial. This is real. Being put to sleep for surgery is risky. Getting infused with toxic chemicals that are being STUDIED is risky. Not fighting melanoma is riskier. Your loved one doesn't have much of a choice. It's either fight or die. Really.
I invite you to do a blog site search and learn about this disease. Especially since it's in your family tree. It really may behoove you to learn something, become vigilant and proactive, and maybe, just maybe, you won't be the next one in your family receiving a melanoma diagnosis and needing your family to rally around you!
Oh, and stop posting about going tanning and getting burned. That isn't good for your skin. At all. That's the sign of damaged skin. Your skin won't forgive and it won't forget. It just may rise up and bite you one day.
And I'll be your HM CBQ and I'll love you as my melahomey.
I'm pretty sure, though, that we'd both rather be grateful that that not happen.
charis
Monday, August 5, 2013
Addison...Melanoma World's Youngest Warrior
Read her story. She's our two year old melanoma warrior princess who today learned, or rather her family and friends learned, her battle is coming to a close. At two years of age, she won't be able to really comprehend what's happening in her tiny body.
But we comprehend.
She has fought an adult-sized battle with adult-sized weapons--weapons that were never meant for a baby/toddler-sized body--and done it with a larger-than-life grace and strength. She has bounced back every time--until now. She has taught us adults much in her short time. And now she will teach us how to stomp all over melanoma as she leaves it in the dust as she prepares to run her short race through Heaven's Gates of Praise and into her mama's waiting arms and her Lord's cancer-free Eternity.
She is, and always will be, our Addison.
Thank You, Lord, for the hope and miracle that is Addison. Unless You perform another miracle on her behalf, we're going to trust her into Your Loving Care. But You know what, Lord? That's where she has been all along, hasn't she? In Your Loving Care. And I, and all who inhabit Melanoma World are forever grateful.
Note: Little Addison died August 8, 2013. And we weep.
But we comprehend.
She has fought an adult-sized battle with adult-sized weapons--weapons that were never meant for a baby/toddler-sized body--and done it with a larger-than-life grace and strength. She has bounced back every time--until now. She has taught us adults much in her short time. And now she will teach us how to stomp all over melanoma as she leaves it in the dust as she prepares to run her short race through Heaven's Gates of Praise and into her mama's waiting arms and her Lord's cancer-free Eternity.
She is, and always will be, our Addison.
Thank You, Lord, for the hope and miracle that is Addison. Unless You perform another miracle on her behalf, we're going to trust her into Your Loving Care. But You know what, Lord? That's where she has been all along, hasn't she? In Your Loving Care. And I, and all who inhabit Melanoma World are forever grateful.
Note: Little Addison died August 8, 2013. And we weep.
Subscribe to:
Posts (Atom)