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MPDL 3280A - Back from Nashville #4

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

I hope it's okay I started a new thread. The old one was two pages long and quite honestly, I didn't know where to reply..the top or the bottom! Anyway, a short update (that's good!) Everything if fine. My RBC needs some tweaking...9.5, might need some more blood out there in the future. My weight is a bit of a problem. Can't believe I'd EVER need an appetite stimulant. I have ALWAYS been a trustworthy member of "The Clean Plate Club". As a child of the fifties, my mother would always tell me about the poor starving children in Europe (and then YELL at me if I didn't eat) Good old Zelda! She meant well, I'm sure. Anyway, I have 2 prescriptions...one for Megase and one for Marinol. I'm going to try to avoid filling either. Already planning my meals for today!!

So....feeling good this morning and hanging in another 3 weeks until the definitive scans are done. These are the 12 week ones that should really show whether or not this treatment is working. 3 weeks of blissful ignorance and forcing myself to eat. Doesn't sound half bad, does it?

I've missed "hanging out" with y'all. XXXOOO

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Enough to make us all want to sing! The side-effects, coupled with your back-to-normal happy tone, suggest it's going fine. Roll on those good scans!
It doesn't look like you'll be needing that headstone any time soon. Don't starve but if you have surplus food you can parcel it up and send it to us starving Europeans - funny but in wartime London we used to be told about the starving children in Africa!

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Far out. "Ain't nothing like the real thing baby, ain't nothing like the real thing"...... So glad you are feeling better. That was a tough few months for you but you took on the challenge like a trooper. Your spirit seems to have returned. That makes me even feel better. Keep up the good work Paula! Fox loves ya!

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

Doesn't sound bad at all Paula! And thrilled you're feeling well. Not familiar with Megase but became too familiar with Marinol when John became stoned, not knowing it was synthetic THC. According to John's clients (many drug merchants), Marinol has a high
street value. So if things get bad. . . :)

Glad you're back!

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Hi Paula,

My 86 year old Mom was on Megace for a couple of years and it was great for improving her appetite. She put on weight and looked really good. When we changed her doctor to a gerontologist he took her off of Megace because he said there was a potential for blood clots. Before I posted this, I checked the side effects to be sure and found this:

Hematologic

Hematologic side effects including a significant risk to develop blood clots have been reported.
Blood clots are particularly a risk in cancer patients and others susceptible to clotting.

Here's the link: http://www.drugs.com/sfx/megace-side-effects.html

I'm not trying to be an alarmist. I just wanted you to know what I learned from my Mom's experience.

--David

Just learned that on the new system, it appears clicking "add new comment" on the original post puts your post at the top of the list even though it wasn't the first comment. That wasn't my intention but that's what happened.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

The fact that it is a hormonal drug weirded me out. I never did HRT. And a drug that may cause vaginal bleeding is off my list. I just don't want to have to worry about another set of side effects. The marinol also weirds me out a bit. I don't like to be out of control and get anxious when I am (while others LOVE to be out of control and think it sounds like a great drug. I agree with Fox..."ain't nothin' like the real thing baby, ain't nothin' like the real thing!" Here's to better living through chemicals...(said sarcastically of course).

Oh wow!

Paula XO

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Ater 2 terrible weeks of feeling dizzy, fainting., not eating and basically wasting away, I finally pushed myself forward ( with the assistance of screaming frantic family and friends) and went to my Atlanta doctor and asked, WTF?  Am I dying? After fainting out cold 4 or 5 times in 2 days, enough was enough.  So off I trotted to my oncologist here and evidently after describing my "out of touchness" and noices/voices I was hearing, the culprit was Calcium  My Calcium was 12.1.Yesterday I spent half the day in lab, along with half the day Tuesday.  Got 1/2  hours worth of Zometa and I am a new person.  In order be really cool, I had given marinol a whack, but  was already feeling wacky, so for the last 4 days I have used Megace and actually woke up hungry today

Now I am waiting for th 9-9:30 phone call with whether or not I need to have another zometa based on the balanced after yesterday' blood draw AFTER the infusion.

And then. I go to Nashville for further examination and evaluation.  I do hope this present good feeling I am having is way more akin to what I should have been feeling this last week.  Am anxious to go and be back and feel relatively normal.

 

I do know I have pretty much slept away 2 weeks without really enjoying it.  I plan to make up for that in one way or another!   Love you all.  Will get back to you after doctor appointment on Friday.  Need some good news as my positivity is flagging

Paula XOXO

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Paula, sorry you are having it hard. But you can do this. You've demonstrated tremendous fortitude and are one tough chick.  It's all just a test. I can't see you not winning. Better times are near. FLY.

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Hi Paula,

I've been wondering about you since we haven't heard from you lately. I'm sorry you've had a rough 2 weeks, but glad you are doing better. I know tomorrow is a big day and I wish you the best!

--David

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Hey Paula,

Whatsa couple rough weeks or months compared to what awaits?  Keep your eye on the prize, you have proven you are tuff enuff to do what ever it takes, when you've gotten down you've always responded with WTF and got back up even more determined than before.  You are a warrior with the battle scars to prove it, this dragon has no chance against you.  Hang in there, we're sending every ouce of positive energy we can muster your way.

Can you feel it,

Gary

I am alive
Posts: 229
Joined: Jul 2012

Paula,

  I'm sorry you're not breezing through this round  but thank God your family & friends got you up and out the door and on your way to Atlanta/Nashville. (What do folks without that support do when overwhelmed with side effects and mental/emotional fatigue?) I'm not a super religious person, or very religious at all, really, but I do believe in grace and I think it is all around you. You'll ride this out.   I can't believe you fainted 4-5 times and never called the doctor!!!! You ARE  one tough chick. But don't do that again. We don't get gold stickers for not bothering the doc. Glad to hear you're feeling better, and thanks for sharing your journey with us. (I'm not really fond of that word - journey - to describe the road we're all on. I guess because it connotes "choice" and none of us chose this. But I can't think of any better word. Plain old "experience" ? Seems clinical. Any ideas?) Onward!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Not the only connotation though, Peg.  Our 'journey' isn't chosen - it's a route march! 

However, while on the march we do have choices, one being to give up, lie down and die.  We can all rejoice that Paula is made of sterner stuff, makes the right choices and even when they're tough choices she has the guts to stick with them, which is just one of the reasons we all love her and will keep 'rooting' for her!

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

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!

 

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Liz, I'm sorry if my post reads that way to anyone - I was intending simply to convey the message that no-one should lose heart and I've often cited you, Donna Lee and Paula (plus Fox and others, of course) as examples who encourage others to put their best foot forward. .

Maybe my condition/drugs are causing me to become insensitive? I seem to be going 'off topic' and offending people these days, so I guess I ought to try to get a life and withdraw from posting on CSN. 

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

Dont you dare withdraw from us Texas,you are fine just the way you are,your drugs and or condition have nothing to do with your opinions it is just the way you are and i mean that in a nice way.I  know you hate this disease and you care about every one here so please keep posting and if you offend anyone we all know you you meant well so deal with it.

I am alive
Posts: 229
Joined: Jul 2012

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 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

OK Peg, you got me!

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

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
Posts: 229
Joined: Jul 2012

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's picture
alice124
Posts: 881
Joined: Mar 2012

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's picture
foxhd
Posts: 2059
Joined: Oct 2011

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.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

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.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

So  glad you have given us an update. Have been worried, and have come in here several times with the intention of contacting you only to be frozen in place, a SE of the CSN upgrade I guess.  Will anxiously await your next report reflecting more (and improved) normalcy. Your family and friends were so  right in pushing you to be more aggressive with your doctor; that fainting has got to stop. But hope this is just one more  bump on this unpaved highway. And knowing your drive, determination, and courage that's what we're talking about--right???

Looks like you and John will have a stockpile of the Marinol, "wacky" was one of words he used to describe his Marinol experience too. (But then when I think back, didn't we used to call it wacky weed? Fox????) Take care of yourself.

Soulnergy with you Paula.  XOXO

foxhd's picture
foxhd
Posts: 2059
Joined: Oct 2011

Why are you asking me?.........HEY, PASS the CAKE!!!!!!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

FAR OUT!!!

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

MMMMMM!!! AHHH yes me Mary Jane and the Munchies oh the memories

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