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3am and 200mg of Prednisone 4th one down

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Fellow Lymphomaniacs,

I have just survived my 4th of 6 rounds of cvp-r treatments and glad to report that I am still feelin funky.

I have been soooooo blessed, but anyone that has taken prednisone at sky high levels knows this cancer crap will kick your butt one way or another. I have gained over 20lbs and am praying for that weightloss symptom to kick in Wink. I made it through childbirth unscathed and without donning stretch marks only to get a disease that is trying to kill me(which I out smarted) only to have these nasty tasting lil pills keep me up all night and eating every 20 minutes.

I hope this post finds everyone in good health

I truly feel like I am kicking Cancer's ass !!! I know that this is a disease that will try to comeback with a vengence, but I am ready to continue to fight like "you know what"...lol...only one swear per day

Sue you were right, it's almost over already. I am kinda starting to feel the saddness of not going for treatments and seeing my amazing staff that has given me an opportunity to have a much longer, healthier life. I can see how people could go through depression when it's over, but I haven't been lucky enough to get sympathy or pampering. My friends and family feel that I am fine and always have been, because I have never appeared sick. I did let them all know in the beginning that this was my fight and I had to stand up and fight it, maybe that's what led them to believe I didn't want pampering.....either way fighting is hard work and calls for wine and a bubble bath sometimes!

I am looking forward to camping out under the stars with my son to see the SuperMoon this sunday, check it out it is supposed to be pretty cool. Plus side is it has nothing to do with being sick or feeling bad, you can still look at that moon. If you are on prednisone like me, you can catch the sun coming up alsoLaughing perhaps with a snack in between!

Dang it... I almost forgot to tell you about the awesomeness of being at chemo and having the county cop come and fill out a police report for me...somebody stole my identity and half of my freaking bank account...now what kind of monster steals $ from a single mom with cancer???geesh, if you are going to steal my identity atleast pay my bills, while you are paying you AT&T and Sprint bills..Is that too much to ask? lol...it only happens to me

my love to you all

XXXOOO

CARIE

allmost60's picture
allmost60
Posts: 3176
Joined: Jul 2010

Hi sweetie,

  Oh man...I know how the nasty pred can make us feel. For some reason I didn't get the ravenous appetite, but....I had many other irritable reactions...racing heart, shortness of breath, NO SLEEPING, and just plain miserable feeling! So...I know what your dealing with! I'm so sorry about your identity theft! Piece of S%*T people that do that just suck! I hope you get it squared away soon. We will be moving now on July 1 instead of the 15th, so if you don't hear from me for a few weeks, you will know why. I'll keep in touch as best as possible until we leave, but it will be a week or so after we get to the river before I can get my cable, internet, phone etc all hooked up. UGH...I'm happy to be moving, but it's all a bit overwhelming. You take care sweetie and enjoy your good days with your son. I'll be keeping everyone in my daily prayers. Much love...Sue

GKH
Posts: 326
Joined: Jul 2012

You sure seem to have a nack for kicking the butt of whatever life throws at you! Even though I am on a Rituxan only treatment, my onc tried me with 20 mg prednisone per day to try to stop some of my body pain. I am assuming that is a small dose? Anyway it really made me feel weird and i was eating constantly. After about 5 days my tastebuds changed and I had gained 10 pounds. I stopped taking it. I suppose some day i will move on to CVP or something similar. At that point I will think of you and try to follow your good example as I swallow the little pill. Fortunately  (maybe?) for me I don't have your astounding good looks so no one will even notice when i lose my hair!

Identity theft is a big pain. Its happened to me several times, mostly in the form of credit card fraud. Last month someone ordered almost $500 in Keurig Coffee on one of my credit cards which I use to order parts for my hobby. He/she must have owned a restaurant as that is a lot of coffee! They say medical establishments are the worst for letting info slip out. I keep my online checking account passwords very long and complex and change them often. I also helps to change your PIN every week and to not do banking on a public wifi unless you use a trusted VPN which uses strong encryption. I am so paranoid now that i use 3 different VPNs and constantly switch between them when making online purchases or trading stock.

Had another Rituxan infusion on Tuesday, my 21st. Only 4 more to go! My scan shows "diminished lymph nodes size but with some potential for viable tumors in the mesentary". Guess I will find out when the Rituxan stops next year.

I will look for the super moon.

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

GKH,

I will be going on the rituxan maintenance after I am done with my last two full treatments, it is my understanding that I will be on the rituxan for 2 years. Sounds like we might just switch treatment plans..lol.. How often are your treatments? Way to go on 4 more left. I am guessing that you will find that the full treatments isn't much different than the rituxan you are already on, it seems pretty mild to me or I have just been really lucky!! The Prednisone isn't that bad for me, I shouldn't even complain about it other than it's nasty taste and my weight gain<----it could be alot worse, most people lose a bunch of weight. Not o mention it is only for 5 days per treatment, but as you said you gained 10 lbs same thing here and in the following weeks I work my butt off to lose the weight to just gain it right back in 5 days.

 

Thanks for the tips on the fraud, this is the first time it got me....If I changed all my passwords I would be screwed, I can't even remember what day it is half the timeLaughing. Luckily I check my accounts often, I can't even imagine what would happen to someone like my family memebers whom never know how much money they have in their accounts. I will surely be on much higher alert from now on. Good news is AT&T has returned my money to my account as of close of business today, Kudos to them and my financial institution for the fast fix.

Keep me posted on how the treatments are going for you and lymph node activity- hopefully they will shrink to nothing by the time you are done with rituxan.

xxxooo

Carie

 

NANCYL1
Posts: 263
Joined: Jun 2012

Hello:

I had a reaction to my first infusion of Rituxan last year in May.  The doc then gave me a steriod (don't know the name), Benydryl, and two Tylenol along with the Rituxan to prevent a reaction, and it did.  I have the same cocktail every time I have a Rituxan infusion.  The steriod does "jazz" me up.  Taking sedatives helps.  Got a big appetite the first day.  They kept me awake at night.  BUT no side effects!  Lasted several days, getting a little better each day.  I don't know what cvrp r is.

 

I hope you are soon feeling OK.

Nancy

P.S.  I finished my third set of Rituxan infusions last Wednesday.  Have another set in six months.  Then we will see.  Thus far they have been helping:  red, white cells are now normal, as are platelets.

Think I will search for a pair of Pink gloves like yours!

 

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Nancy,

The CVP-R is Cytoxan, Vincristine (a push or injection, no bag on the pole), Prednisone(the steroid pill for 5 days) and the Rituxan. So it sounds like if you had the prednisone, you have had almost the same treatments as me, minus 2 drugs. I also get the benadryl and tylenol and some amend for nausea before every treatment.

How often are your treatments? mine are once every 21 days.

Those pink gloves can be found at almost any sporting goods or sports equipment store that carries fitness stuff. It just so happens that I work at a sports store and actually box, so I grabbed em for my first treatment. I usually box with some black ones, but the pink are much cuter. I think the pink ones have magic in them, it also helps to use a sharpie and put a moustache on your mask if you have a med-port before they access it...lol

XXXOOO

Carie

NANCYL1
Posts: 263
Joined: Jun 2012

I only have steroids with my Rituxan infusion.  Not Prednisone;  some other "poison."  You had Prednisone for five daze in a row?  Mygod.   My Rituxan infusions started last year in May.   They are once a week for 4 weeks on a row, and then same thing after 6 months, i.e., 4 sets in two years.

A boxer?  I am impressed.  I take walks and when I am not tired from the freakin' infusions, I go to the gym and use the treadmill.  Not an athlete.

Confusing sometimes on the board.  Different treatments, etc.   My stomach is frequently somewhat off from the Rituxan.  I feel like a puffed up balloon at times.

 

NancyTongue Out

 

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Nancy,

I know exactly what you are talking about when you say puffed up balloon...Crap, I was hoping that was from one of the other drugs I was almost done with! I too get very tired, I haven't worked out much at all since April or so. I wish we could just nap and excercise at the same timeWink, I woud be the fittest.

XXXOOO

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1216
Joined: May 2012

One way to look at it:  As a boxer, you are lucky to get the steroids legally !

max

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Max,

LOL.....You always see it in the best perspectiveLaughing If only it were the same type of steroids

Carie

GKH
Posts: 326
Joined: Jul 2012

Yes I get the benadryl (anti-allergy medicine) and the acetomenophin with every infusion too. You can actually buy benadryl over the counter as pills but mine is put in the IV. Our schedules are much different. I received one 800 mg infusion a week for 8 weeks then another one every 8 weeks for 2+ years. Sounds like each of yours is a series Of 4 every 6 months?

 

My salivary glands have shrunk considerably but still swollen.

Rocquie's picture
Rocquie
Posts: 523
Joined: Mar 2013

Hi Carie, it's good to see all your recent posts. And I am so happy that you are doing well with your treatments! Yes, the prednisone is, literally, a bitter pill to swallow. I never figured out a way to get those things down quick enough to avoid that taste. Otherwise, they didn't bother me all that much. In fact, I missed the energy after the 5 days. Twenty pounds, eh? I was one of the ones that lost weight--not good. I didn't mind losing weight, per se, but that was not a good way to do it.  I used to joke with my husband about marketing, "Quick weight loss through lymphoma". You will shed the weight later. Best to get healthy first, but you know that. How is your hair? I know you were concerned about that. I hope you are one of the lucky ones in that department.

Prayers and hugs,

Rocquie

 

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Rocquie,

You are right about that bitter pill to swallow...YUCK...Luckily I am off them until the next treatmentSmile. Sorry to hear that you lost all that weight, I am one of the few that gained a ton....I don''t think they knew who they were talking to when they said to pig out while I felt up to it...lol..I do wish I got the energy that you speak of though, I just seem to lay around and not be able to sleep but no real energy. I guess we can't pick our side effects, just have to be thankful for what we have and at the same time what we don't have. I have learned that nothing is quite as bad as it could be, so many have it much worse than I could ever imagine. The hair ironically is all still intact, just as it is in my profile picture, hindsight my hair should've been the last thing that I worried about. I think I was too concerned with looking "sick" rather than actually worrying about being "sick". I have learned many lessons on this journey. My mom tells people that she doesn't believe that I have cancer even though she lives with me, she has never seen me look or act any different than prior to my diagnosis. I feel guilty to admit it , but I really haven't had much for side effects so far. <------BLESSED!!

Hope this finds you well and enjoying your summer

XXXOOO

Carie

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011


I hope the weather is good and you and your son get to see the super moon camping under the stars tonight!  

Save some s'mores for us ;).

Hugs and positive thoughts!

Jim

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Jim,

Thanks for thinking of us...We definitely saw the Super Moon and took lots of pictures, some blurrier than others at the hand of my 8 year oldWink...It was too windy for us to have our campfire, which happens quite often. I live smack dab in the middle of one of those huge windfarms...lol...I am still trying to find an extension cord long enough to get to the windmill in the field behind my house and pirate some energy.

XXXOOO

Carie

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