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

Well guys, I just got back from my Onc. office with lousy news, I have no WBC's, do you believe it,the girl at first thought it was the machine, she ran it three time's, and they came back goose eggs, now my Doc is concerned that my bone marrow shut down, I have to go back and get another two shot's tomorrow and hope for the best. Kind of confused what's next if they don't come back up. At least she didn't put me in the hospital yet! Vinny

yesyes2
Posts: 461
Joined: Jul 2009

Oh Vinny,

Enough already, you need to catch a break. I'm really very surprised that your not in the hospital already. Are you confined to house arrest and masked anywhere outside of that? Has your onc put fear in you about being extra careful to avoid any infections? Don't want to further scare you but it is scary. I certainly will be praying that your bone marrow hasn't shut down, maybe it's just a little bit tired right now. It certainly has every reason to be tired as you have gone through a very brutal chemo, much harsher than the 21 day cycle of RChop I had. Don't think I've been much help, just want you to know we are all here for you whenever you need us.

Hang in there,
Leslie

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

Hey Leslie, I'm hoping that it's taking a little rest too!!! I keep on telling myself that the shot's I got will bring them back up again...... 4 in a week I thought my bones ached before! LMAO Vinny

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Vinny,
That might explain some of why you continue to feel so lousy all the time. You need to be VERY careful. I think if you can stay home and stay away from any potential germs, then you are better off. Hospitals are germ pools, as we know.. I am very worried about you. I hope that the shots will kick your cells into action. They need to wake up and get busy !!!
Try to stay positive, things will get better.
prayers and energy coming your way..
Lisha

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

Hey Buddy,
We are here for you and concerned as well. I been waiting for you to post since I knew you were scheduled for a visit today. I just hope those wbc's get moving pretty soon. Don't need any germs getting into your system. I am having positive thoughts that they will start after all those shots. Its a wonder the Dr. did not put you in the hospital (some sort of isolation). Hospitals on the whole are germ infested: thats usually why people go there. Take care. John

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi John,
What day this week do you go for your next round?(7?) The week before chemo seems to be my best week...how about you? I felt sore, achey and tired on Monday and Tuesday, but today has been a much better day. I think the first few days after coming off of the pred are such a shock to my system, that my body goes.. "whew" glad thats over...time to rest!...ha! Hope all is going good for you. I'm so worried about Vinny!...Sue

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

Sue,
I finished yesterday and it only took 4 1/2 hours. Went back today for the neulasta shot. Felt great most of the week before and still feel great. Started pred. this morning. No effects yet. Probably be hungry as a horse by tonight. I am sure if all goes like the last couple of treatments I will be dragging by Friday morning. I go back Oct.13th Wednesday for a pet scan. 2 days later I see the Dr. for results. John

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi John,
You had your treatment yesterday but don't start your pred until today? I have to take my 60 mg of pred before I go in on chemo day, and then continue it for a total of 5 days. Maybe it's different for us because you have bone marrow involvement and I don't and thats why you get the shot and I don't. I need to remember that each one of us is different and so might our treatments be, even though we have the same kind of cancer. Theres so much to learn that sometimes it just boggles my mind. I'll be thinking only positive thoughts for a clean CT scan. That will mean remission...right? ...Sue

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

Sue,
I really don't know why the pred thing is different. It may be the bone marrow thing or just a different procedure for different hospitals. They did say if all is clear I would be coming in every 6 months for rituxan maintenance. At least that is not chemo. Only thing is I have to go in every 2 months for the port flush. They have to change out the heprin. I assume that is for everybody. I was reading on here, I think it was YESYES saying they are making a lot of strides in follicular nhl and a lot of test trials are looking promising. She didn't really go into detail with it. I wish I could attend one of those conferences, but they never have one around here. They may have them at Duke, but I never hear of it.

yesyes2
Posts: 461
Joined: Jul 2009

Hey John,

Are you sure it's every 2 months for your port flush. Every one I know has to have their's flushed every 3 to 4 weeks. My power port instructions say to have a heprin flush every 4 weeks. Just wondering. Congrats on finishing chemo. Seems like just yesterday you were starting and now your done. Will keep all fingers and toes crossed for a clean scan.

Leslie

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi John,
I was told I would have to go in once a month after treatment is finished to get my port flushed out. Do you have the power port..little purple bug? I'd ask again the next time you go in to your doctor, just to be on the safe side. I've got a whole list of questions to ask my new doctor, just in case the one I "had" wasn't totally on track with me. I'm thinkin it will be like getting a 3rd opinion, since I had a second opinion done already. Me too on the conference...would love to take part and hear whats going on. ...Sue

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

Great to hear man! Best of news with that PET scan! Talk to you Vinny

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

Vinny,
Yea, I am hoping for good results. It stays in the back of my mind. The Dr. seemed very pleased when It was down 2/3's after the 3 treatment. I saw a post on here a while back and somebody said they were clear after the 2nd treatment. I do not remember what type they had though. It was when I first joined up and my mind was so twisted I didn't know what was going on. Just have to wait and see. Still thinking about you and those wbc's. I hope they come up soon. When do you go back for the blood test or do they do that every time you get a shot? I am waiting for the last treatment to kick my A$$ now. John

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

I go this morning, and yes they take blood then I get my shot's, I've been getting three shots, in the two week span, now it's five!!!!! Talk about being ran over by the bus! hahaha I really feel like I'm fading fast!.... Never felt anything like this before. The funny thing is I still have my PET scan looming in a month....... Get your rest and ride out that last treatment! You are almost there!!!!! Vinny

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

Congrats on getting through this far and will be praying for those scan results to be clean. There are probably others but my Pet showed remission after treatment #2 and right before #3. They called me a "responder". I still had to have all 6 treatments though. I've never been called a responder before but I want to stay one. It always made me a little nervous because even tough I was indolent FNHL grade 1-2 stage 4A did the good response mean things were more active? Always have to do that darn thinking ya know. lol. All the best..Mary

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi Vinny,
I don't know alot about the blood counts..(yet), but don't have too, to realize how serious this is for you. I was wondering...do you have someone at home that can post to us what is going on if you end up going to the hospital? I would be sick with worry if not for you posting how you are doing. Please stay away from people and take every precaution possible to keep yourself from catching anything. You are on my mind daily Vinny and now with this news, well....I'm just scared and feel so helpless. You will be in my prayers constantly. You are an awesome guy Vinny, and I have to believe you will get through this. Keep us posted and take it very, very easy. Give your wife and family a big hug..this must be so difficult for all of them...God bless...Sue

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

You guys are all great, we are getting through this, it's rough but we just say it's another bump in the road. I'm just taking it slow,staying away from people, I didn't even get gas for my truck today, in fear of catching something for the attendant. LOL I think like all of you guy's, more germs in the hospital. Thanks again for all the support..... Vinny

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

Vinny,

You are in my thoughts honey and I hope the counts come back soon! Be careful, don't cut yourself cooking.

Take care of yourself!
John,
good luck with the scan! Will be sending good vibes your way!

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

Yikes. OK well first you take a deep breath preferably with a mask on. Hopefully the shots will give you the boost you need. In the meantime do all the things you already know..rest,rest and more rest, drink lots of water and eat well. Stay out of the public whenever possible. Check your temp throughout the day too. You may end up with that transfusion after all but in the meantime lets keep our fingers crossed for the shots. Keep hanging in there. I'll keep you in my prayers and please keep us posted. Mary

truckingalong
Posts: 444
Joined: Aug 2010

I do believe that people who pray for you will bring you luck. So here is my luck for you. You are an incredible optimist and realist and I learned a lot from you! Yes, you are right - life is an adventure - never a dull moment. Looking forward to hear more then.

Liz

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

Thank's Liz!!!!!! Vinny

Sparkyz
Posts: 17
Joined: Sep 2010

Hi Vinny,

I hope you are doing better today and I hope your WBC's are climbing up and Marrow is good. Keep strong! You we the first to ever reply to me on this sight. I even told my wife about you so you have no choice but to hang tough and feel better your a celebrity in my house now. :)

Your new friend,

Mark (sparkyz)

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

Thank's so much Mark! We will get thru it! Vinny

Sparkyz
Posts: 17
Joined: Sep 2010

Vinny,

Hows the WBC's? Up I hope. How are you feeling today?

Mark

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

Hey Mark I wish I can say better, but it's really been rough, I feel like I ran a 10k marathon, and got hit by a train at the finish line. It's going to take at least a week for my count's to start rising. I keep telling my wife it can be so much worse..... The WBC's can in at 0.05 not one yet.... LOL Thanks for asking Vinny

LCN's picture
LCN
Posts: 8
Joined: Sep 2010

Looking forward to a great update from you - take it easy.

Lisa

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