MPDL 3280A - Back from Nashville #4

alice124

lbinmsp said:

You bring up an issue

that I wanted to address for some time.  You say (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?).  And to this question I say with total clarity and experience - that you cannot take these drugs, undergo these treatments, manage all of this - alone. This is the situation that I am in - I have no family close by - I do have great friends who are my angels - but they are caregivers for their own elderly parents and are stressed to the max with those things.  They do everything they can to help me, but basically I'm walking this road alone.  After being on Sutent for 18 days and so sick I wanted to die - nausea, diarrhea, fatigue and weakness,mouth sores and, in my situation, plummeting blood pressure (instead of raising) until I too fainted flat on the floor, alone.  I did call the on-call doctor and was told to stop the drugs and head to the ER if my blood pressure didn't normalize within an hour or so.  

Next time I saw my oncology team I said, very honestly, that I didn't think anyone could fight cancer alone.  You cannot drive yourself to your appointments sometimes because you're so wobbly and weak that to drive would be dangerous.  You don't eat or drink much because you're so exhausted that even standing 5 minutes to make a sandwich takes too much energy.  Showering is scary because you feel you'll end up on your back in the bottom of the tub again because you're weak and too tired to care.  Surprisingly my doctor and his team listened to me and agreed and now they/we are treating symptoms and issues as they come up and I am living my life as thought I don't have cancer and doing really really well.  We're now looking at a couple of other treatments that may keep my going for a much longer time but without the drugs.

Also, and totally in my humble opinion, remarks like this: "while on the march we do have choices, one being to give up, lie down and die" do nothing but alienate people from this board and it actually feels like a line has been drawn in the sand to say - 'if you don't fight this thing, you don't belong here - you're an embarrassment to all the warriors and survivors who post here' (my remarks, my feelings).  It is this type of attitude that keeps me away from here most of the time - I don't need to be totally ignored because I'm not waving pom-poms at everyone - or feel that those of us who have chosen a different path get 'cyber slapped' because we're not 'fighting the good fight' that somebody else, in entirely different circumstances, determines everyone should do.  Nuff said and I apologize for getting off topic but I did respond to comments made 'on topic'.

LB and STILL NDY!

 

 

 

Liz,
Just wanted to pipe in

Liz,

Just wanted to pipe in here and say if I've offended you or discouraged in any way since being on this Board, I sincerely apologize.

For the record, I've always viewed your decision to discontinue Sutent and treat symptoms as a different course, never as giving up. And I don't think Tex or anyone else ever thought that. "You" and "give up" never met in my mind. You are one courageous lady who provides valuable experience, information, and insight and fights this disease on her own terms and whose contributions on this Board we all value.

But even in this post, you've again provided valuable insight as complications others may be faced with when facing RCC. I readily admit it hasn't always come to mind for me  in the past. But as a result of your post, I think it will in the future.    Thank you once again.

alice124

I am alive said:

Yea, Texas, shut up!

I picture you as the loveable, sometimes curmudgeonly professor who has a big heart and a short fuse which he struggles sometimes to keep in check. Don't you dare leave us! Who would keep the balls in the air? Who would drill so deep on issues? Who would broaden our vocabularies? You got cyber slapped today. It happens. The choice you make in response should not be to lay down and die now, should it? I do thank Liz for her comments on living alone with cancer and choosing a different path, and I can understand how she and others might feel like an outcast among Pom Pom wavers. I feel I'm at the beginning of metastasis world and have no idea how I will cope as time goes on. I came to this board to learn what is in store for me because doctors don't like to spell things out unless they absolutely have to and Internet info is stark and terrifying, and also doesn't tell you what your day to day life will be like. It was in getting to know the people on this board - you in particular, Tex, since we both have chromophobe and not many others do - that I began to have a clue, and a handle on what might be in store. It is a HUGE service that you and everyone else on this board does. It's like helping hands out there in the ether. I'm in the Pom Pom phase of things right now, and if I get a bad CT result next Tuesady I'll be posting on this board. I sure hope you'll be there, Tex, to console and encourage me, as I hope to do for you when you get your first CT result with Votrient. who 

Well said Peg.
Your note, "I

Well said Peg.

Your note, "I feel I'm at the beginning of metastasis world"; I can't find additional reference. Continue to have a fit with this board and search engine. Can you point me to earlier post on topic or brief me on what's going on?

I am alive

alice124 said:

Well said Peg.
Your note, "I

Well said Peg.

Your note, "I feel I'm at the beginning of metastasis world"; I can't find additional reference. Continue to have a fit with this board and search engine. Can you point me to earlier post on topic or brief me on what's going on?

Met World

Hi Alice,

  re: "at the beginning of metastasis world," I  was inelegantly referring to Liz's choice, as she noted in her post above, not to pursue treatment at this time, and feeling a bit of an outcast for making that choice. I started drug therapy just this past July (Afinitor/Avastin trial for nonclear cell) and I have no idea how all this will shake out. I was trying to say that there may come a time when I, too, may choose not to opt for therapy.  Who knows? Dealing with metastasis is tricky business. I find myself longing for the good old days when a 4-5 hour surgery got rid of the damn thing. I thought your post to Liz was beautifully said and gracious. And I wholeheartedly concur.

alice124

I am alive said:

Met World

Hi Alice,

  re: "at the beginning of metastasis world," I  was inelegantly referring to Liz's choice, as she noted in her post above, not to pursue treatment at this time, and feeling a bit of an outcast for making that choice. I started drug therapy just this past July (Afinitor/Avastin trial for nonclear cell) and I have no idea how all this will shake out. I was trying to say that there may come a time when I, too, may choose not to opt for therapy.  Who knows? Dealing with metastasis is tricky business. I find myself longing for the good old days when a 4-5 hour surgery got rid of the damn thing. I thought your post to Liz was beautifully said and gracious. And I wholeheartedly concur.

Now I understand why my

Now I understand why my searches were in vain! Thank God.  I'm thankful it was simply an error in  my comprehension.

I'm thinking you told us you had a scan coming up on  Tuesday (1/15) ? If my memory is accurate (and it like my comprehension may be off), I will anxiously await a positive report.  Here's to success!

 

foxhd

I am alive said:

Yea, Texas, shut up!

I picture you as the loveable, sometimes curmudgeonly professor who has a big heart and a short fuse which he struggles sometimes to keep in check. Don't you dare leave us! Who would keep the balls in the air? Who would drill so deep on issues? Who would broaden our vocabularies? You got cyber slapped today. It happens. The choice you make in response should not be to lay down and die now, should it? I do thank Liz for her comments on living alone with cancer and choosing a different path, and I can understand how she and others might feel like an outcast among Pom Pom wavers. I feel I'm at the beginning of metastasis world and have no idea how I will cope as time goes on. I came to this board to learn what is in store for me because doctors don't like to spell things out unless they absolutely have to and Internet info is stark and terrifying, and also doesn't tell you what your day to day life will be like. It was in getting to know the people on this board - you in particular, Tex, since we both have chromophobe and not many others do - that I began to have a clue, and a handle on what might be in store. It is a HUGE service that you and everyone else on this board does. It's like helping hands out there in the ether. I'm in the Pom Pom phase of things right now, and if I get a bad CT result next Tuesady I'll be posting on this board. I sure hope you'll be there, Tex, to console and encourage me, as I hope to do for you when you get your first CT result with Votrient. who 

I am a pom pom waver

Sorry Liz. I think everyone knows where you are coming from. Your decisions are viewed as realistic and powerful. It takes a strong person to plan their future as you have and then accept it. You are commended by everyone. (may be bold of me to speak for others) but committing to ones belief takes a strong will. We love you for it. And we hope to face the music should that day come. ..but...being a survivors network implies optimism, not accepting fate. So we encourage each other. We suport the new, the scared, and the uninitiated. We may not converse with the experienced in the same manner. There are smart people here. Many can read between the lines. The pom poms come out when it appears that someone needs to feel they are not alone. Love you Liz.

garym

lbinmsp said:

You bring up an issue

that I wanted to address for some time.  You say (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?).  And to this question I say with total clarity and experience - that you cannot take these drugs, undergo these treatments, manage all of this - alone. This is the situation that I am in - I have no family close by - I do have great friends who are my angels - but they are caregivers for their own elderly parents and are stressed to the max with those things.  They do everything they can to help me, but basically I'm walking this road alone.  After being on Sutent for 18 days and so sick I wanted to die - nausea, diarrhea, fatigue and weakness,mouth sores and, in my situation, plummeting blood pressure (instead of raising) until I too fainted flat on the floor, alone.  I did call the on-call doctor and was told to stop the drugs and head to the ER if my blood pressure didn't normalize within an hour or so.  

Next time I saw my oncology team I said, very honestly, that I didn't think anyone could fight cancer alone.  You cannot drive yourself to your appointments sometimes because you're so wobbly and weak that to drive would be dangerous.  You don't eat or drink much because you're so exhausted that even standing 5 minutes to make a sandwich takes too much energy.  Showering is scary because you feel you'll end up on your back in the bottom of the tub again because you're weak and too tired to care.  Surprisingly my doctor and his team listened to me and agreed and now they/we are treating symptoms and issues as they come up and I am living my life as thought I don't have cancer and doing really really well.  We're now looking at a couple of other treatments that may keep my going for a much longer time but without the drugs.

Also, and totally in my humble opinion, remarks like this: "while on the march we do have choices, one being to give up, lie down and die" do nothing but alienate people from this board and it actually feels like a line has been drawn in the sand to say - 'if you don't fight this thing, you don't belong here - you're an embarrassment to all the warriors and survivors who post here' (my remarks, my feelings).  It is this type of attitude that keeps me away from here most of the time - I don't need to be totally ignored because I'm not waving pom-poms at everyone - or feel that those of us who have chosen a different path get 'cyber slapped' because we're not 'fighting the good fight' that somebody else, in entirely different circumstances, determines everyone should do.  Nuff said and I apologize for getting off topic but I did respond to comments made 'on topic'.

LB and STILL NDY!

 

 

 

From the heart...

LB,

I have great respect for you and your willingness to share your experience and help others, you are and always be an inspiration to me.  Every time I come here I hope to see a post from you or Donna, you both top my list.  I've never felt that your choice of life on your terms was any indication that you had given up, just the opposite actually, because you took up the NDY mantra at the same time.  NDY tells me that you intend to spit in the face of cancer for as long as you draw a breath and, if possible, much beyond.  Its people like me who have had it easy that should question their relevance here, not fighters like you and so many others, you are the true survivors, you are the ones that matter most here as in life.  It is an honor to know you though I hate the reason for it.

To NDY and beyond,

Gary