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crash and burn

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

hey guy's, thing's really went south for me fast! had my blood counts done they were all low, ran a fever last night, have to go back to my Ono this morning, she may want to put me in the hospt. They gave me a belly shot yesterday, along with 500 mg of Levaquin. My WBC were 1.0 GRAN count was 0.3, my PLT were 92.I will try to post later....... Vinny

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

OK maybe a crash but no burn. I did have my counts take a hit during the first cycle but they rebounded just in time for my next treatment but they were watching really closely. I didn't get a fever but did get a bad chest and head cold and was put on antibiotics right away to help my poor immune system. I had no further serious episodes during the remaining cycles. It sounds like they are all on top of it and will know what to do. I really believe the rest and sleep really helps your body cope much better with all of this. It's already working so hard. Just a thought...think back to how you've been feeling the past several days and see if there is a tip off. For me I had the extreme fatigue and my legs from the top of the thigh to the ankle were very, very sore.This always occurred when my blood counts were low. I then knew it was time to take to the couch or bed and slow way down to aid the recovery. I also stayed out of public places, lots of hand sanitizer, no sharing food etc. My poor teenagers had to put up with the screening of friends coming over watching for anyone who might be ill. I felt like a freak but knew it was in my best interest. It was the only thing I had control over and probably helped. I think I mentioned that they were able to pattern out my "window" of blood count hits as being days 10 - 14 of each cycle so I was able to know when to take the extra precautions. I do remember feeling really scared and vulnerable.and being scared to take my temperature because I had to report anything over 99. I guess as a bottom line I have been there and I have come back without any changes...oh accept the complete remission!! Take extra good care and all the best. Mary

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

thanks Mary you know I will stay tough! good advise about the legs and ankles I feel it too,my Oco was really reluctent to make me take the antibiotics, got to ask her why? maybe it effects treatment. I really don't want to go into the hospital, hated it when I had my head and neck cancer. Hey it is what it is! lol

JoanieP's picture
JoanieP
Posts: 573
Joined: Mar 2010

I know how scary this journey is. You sound like you have a good attitude and that is more than half of the recovery. You WILL be on the other side of this. Take care of yourself and rest, rest, rest. My blood cound went to .o8 and I was given the neulasta shot after every chemo. It took a week for it to work for me. God bless you on this journey

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

thanks Joanie, I appreciate the kind words.... Vinny

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

You sound positive and good, way to go!! I too don't care for any hospital games but what can ya do?? Are you getting Neulasta shots? That may be the tie to antibiotic reluctance. On some levels the action is similar. Just a semi-educated guess. Hope you get to stay out of those open ended gowns. Lol

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny, I guess your body was trying to tell you to slow down by you being so tired the past few days. Take it easy and hopefully the blood counts will rebound soon. We started our treatments about the same time and I was down from day one. I gradually felt better as time went on, but I did have a couple of bad days in there. Never did get a temp. above 100 degrees and that was the 1st night after first round. I have learned that how I feel when I get up is how I am gonna feel the rest of the day. Today I feel pretty good. Just get all the rest you can. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Try eating lots of red meat. I ate it constantly (my hubby made me) and I think that's what helped my counts.

Sorry you've had such a rough time. Take care and like the others have said take it easy.

Beth

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

hey guy's thanks for the kind words, no hospital yet!!!! YES hahahaha counts made a small rebound which was great, still going to take the antibiotics....... thanks again!

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

so true John, I kind of got cocky because I was feeling pretty good, will not make that mistake again!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny, believe me I know how you feel. I moved to NC almost 9 years ago and got a few acres of land after early retirement. I got a John Deere tractor and have moved dirt from one place to another to make it look good around here. It has come a long way since then. I have a couple of vw's and kit cars that I work on from time to time too. After going thru chemo that has all stopped. If I go out to start anything I get to tired to really get started on anything. Like you say it is what it is. Feeling like this is no fun at all. Never thought I would feel like a 120 year old. Even before I was diagnosed with this I had plenty of get up and go. The chemo is rough and we don't know know what to expect from day to day. I have been working on an old riding lawnmower, making a sort of go cart thing out of it. Stripped it down, rewired it, added lights, new belts and even a new 14 1/2 hp motor. On days I feel good I go out to work on it and by the time I get started I start to get worn out. It is discouraging. I used to buy and sell motorcycle shocks on E-bay, even though they are piggy on their profits. Too tired for that anymore. Looking forward when I can do those things again. I know you are too. Just think, we got something nobody else has. We got a porta cath, Yes Sir. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Lmao!!!! yes we do have a porta cath, I feel like a have a alien living under my skin. Great to hear that you have hobbies and interests, I really thinks it motovates you to get back to were you where.For me it's my guitar and my veggie garden I have. My wife and I did all the landscaping and yard work by ourselfs. It kills me that I have to pay someone do cut the grass now! I started playing guitar a little over a year ago, believe it or not it was one of those things I said I always wanted to do, made the desision to play after I got through my first bout of cancer...... stay strong Vinny

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny, how are you doing tonight? I find when I wear down after a good day it is
later in the evening. Just don't want to see you in the hospital. I hear from my onc nurse that when your blood starts to build back up it goes up pretty quick. I would think that neulastra shot would help speed it up as well. Be careful when shaving and do not nick yourself. I am sure you already know about the bleeding thing with the low platelets. I use my sideburn trimmer and have the Don Johnson, Miami Vice look. I have noticed some discomfort in my lower abdomen lately. Thats where the tumors are located, so I assume its the chemo doing its work. I understand it continues to work almost until the next round of treatment. Just take it easy. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

had a good night from the last night I had, looks like that shot is doing it's job along with the antibiotic I'm taking. Thanks for asking, do you know when your next scan is????

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny, Right now it is scheduled for early August if all goes as planned, but depending on the blood work analysis before each round could postpone it to a later date. Just wondering what state you live in. I am in NC. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

OK, I live in South Jersey, home of unbelievable high taxes hahahahahaha

Long Dawg's picture
Long Dawg
Posts: 9
Joined: Jun 2010

Vinny,
Hi, I'm new to this. I had my first treatment 2 weeks ago and lived through a week of hell and fevers. The fevers were daily for me and would come at different times of the day. Enough about me, I found a good movie is distracting during a fever. Join Netflix and you can stream movies off the web.
I'm glad to see you play guitar as well there is nothing more relaxing than to just sit and slowly pluck the strings of the instrument feeling the different vibrations as the notes mix.
Hang in there
Steve

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hey Steve, good luck with your treatments... watch those dam fevers, I promised my self that I would learn Two new chords a day! that's a lot of chords hahahahaha

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

STEVE, it is a scary time being new to this stuff. I had my first treatment almost 2 weeks ago of r-cvp for follicular nhl. Never had the fevers or night sweats, but did have some rough knock down dragged out days. Lost my taste for a few days, but that is gradually coming back. How were you diagnosed? Mine was completely by accident on a routine exam for something else. What type of lymphoma do you have? Did you have R-chop or R-cvp? Any radiation involved? We all react differently to the same treatments. John

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Vinny, Hope you are feeling much better today. Talking about high taxes, don't move to Md.Thats where I came from and they will tax you every which way but loose. Thats just our government taking care of us, right? Anyway I was having a lot of pain in my lower back for the past few days. Started thinking it may be the kidneys. I went to the cancer center and they did a complete blood count and urine test checking for certain proteins that indicate any kind of kidney malfunctions. All came back negative. Glad for that. As a matter of fact the cbc came back in the higher than what they expected range for being in the 10th day post chemo round. The white blood count was way above the normal range due to the Neulasta shot. They said that is what they wanted. They concluded the pain in the lower back was part hip due to the high baby wbc count, but mostly muscle strain. Feeling pretty good so far today. I did have some rough days for a while. That is certainly no fun as you know. Theres nothing that can can compare to waking up in the morning and feeling like you have been beat up and not slept in a week.
I asked them why if my blood is good why was I feeling so bad. They said that is the way chemo does your body for about a week to 10 days. If the blood count would have dropped too much it would drag out for a lot longer. Still don't feel 100%, but a lot better than a few days ago. If you have any questions at all please call the onc. center and let them explain whats going on. I know as soon as I called them about the back pain they said come in right away because lower back pain is nothing to play with when you are on chemo. They said kidney infections usually mean a hospital stay because they progress very rapidly and can be irreverseable. They gave me a prescription for pain for the muscle strain and seems to help. John

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

glad to hear it's not the kidneys, I'm learning you can't take nothing for granted with this crap, how's the taste buds been, knock on wood I still have them, you? I had a bounce back, feeling a hell of alot better then I did two day's ago! talk to you soon Vinny

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Taste buds are coming back,maybe 80% now. You got that right, can't take nothing for granted with this stuff. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Glad to hear you're feeling better. Should be coming up on your good week here pretty soon I'd imagine. Almost back to normal.

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