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

Hey guy's recieved my 6th treatment today, tomorrow it's back in for my shot's, it's getting a little harder then better right now, but it's ok, I have a positive mind set! The rubber hit's the road as I get my 2nd P.E.T. scan on Friday. My Onc told me that this will tell her obviously it the treatment worked or not, she did not go into detail about if it did not work.......the cancer after my first scan showed the cancer was still present in 4 different locations in the bone. As I said before I have no control over this, it is what it is! Sorry for the long post....... Vinny

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

Vinny,
Been thinking about you lately. Just can't understand those blood counts. They have got to come up soon. You mentioned that there was still activity in 4 areas of the bone. I got my pet scan a couple of weeks ago and it never ocurred to me but there was no mention of the bone involvement. Makes me wonder why. I had a bmb back in June and it was said to be in the marrow a little,but little or not it was still there. I got the report out again and reread it just to be sure. Do you know if all pet scans show activity in the bone marrow? Anybody else have any input it would be greatly appreciated. I know you are having a rough time right now, but believe it when I say we are with you all the way. John

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

I don't believe a PET can definitively show bone marrow activity. The bone marrow is normally active and constantly producing so activity shows up weather normal or not. Same deal with the brain. It's always going to show stepped up activity at least in most people. Lol...But anyway that's why the need for a Bone Marrow Biopsy. Somehow, with knowledge far exceeding mine, they are able to sort it all out. I also believe that activity in the bone and in the bone marrow are not the same thing, you can have one without the other or both. It is difficult to understand and even hardier to type. Hope that helps and as always it is my understanding. Mary

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Vinny,
I could sit and read posts from you,John and all of the others "ALL" day long!!!! If not for you guys I'd be a complete total wreck by now. I feel awful that it's getting harder instead of better for you. I'll pray extra hard for good results on your P.E.T. scan on Friday. Your such a great guy Vinny...hang in there! Sue

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

Vinny - have been reading your posts for months - I thougth all chemos were 6 - are you having 8 treatments all together? I go for my 5th CVP-R tomorrow for stage 4, B cell follicular NHL and then one to go in mid Sept. My CT scan after the 3rd chemo showed a 40% reduction - I'll do another in late Sept. Oncologist says my largest abdominal tumor is so large he doesn't expect it to be gone completely, but hopes for at least 80%. He wants to do another bone marrow biopsy then too in order to see the bone marrow involement. I hope and pray it's better but didn't know I'd be doing that again! My white cell and Neutrophils have been really low after every chemo - are you referring to the Neupogen shot? I've had 6 of those and they make me SO sick - 102 fever, dizziness, fast pulse rate. I do not think I can take another if they're bad these last two times. Good luck to you and I hope your results are excellent - will be looking to see!

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

Cookingirl,
How big were the tumors in your abdomen. Mine were 5 and 6 with some smaller ones in the same area. John

yesyes2
Posts: 462
Joined: Jul 2009

Hey Vinny, Congrats on #6, I totally understand about it getting more difficult. Been there and done that. The last 2 chemos are always the most difficult as your body is totally exhausted by now. My Onc warned me about the fatigue and chemo is cumulative. And the blood counts show the fight your body is going through even though your getting help with the Neulasta. Is your onc also giving you something like procrit,for RBC? And the protocol your on, RCHOP every 14 days, is much harsher on you than every 21 days as you done have that extra 7 days to rebuild. Be kind to your self. I will have all fingers, toes and eyes crossed wishing you great results on your PET.
Blessings, Leslie

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

Thanks so much for all the replies! I really would not want Procrit considering the harsh side effects if you had cancer before. As far as the shots, it is Neulasta I get one after Chemo and a two shots, a week after that. I know I have bone involvement from the bone scan they did, and the original bone biopsy. I'm so nervous about the P.E.T. Scan not being good, I've been researching what happens next if the R-Chop is not successful, not good reading to say the least!!! hahahahaha Talk to everyone soon...........Vinny

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

You are such a trooper. Your Chemo schedule has been rigorous to say the least. I was warned halfway through that 5 and 6 would be rough as far as the fatigue. I can only imagine 7 and 8! But I know you will do it. As far as the worry over the final results I know how hard that is but try not to project too much and stay in the moment. Tis hard I know but you may be pleasantly surprised and if not the powers that be have many tricks up their sleeves a lot of which are new. The research we have access to is usually so outdated. I wish you the best and send prayers to you and your family. And remember you are affected and feel lousy right now because of the treatment not the Lymphoma. Just something I needed to keep reminding myself of. Mary

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

Merry,
You are so right about the research websites. I am not putting them down and I am sure you are not either. They are good for stats but not for individual cases. You are so right about some being so out of date. I drove myself batty when I was first diagnosed going from website to website. Seemed they were all different in one way or the other. Some had no dates on them and some did. I was reading one that was really getting me upset. After searching thru the footnotes I found it was printed in 1987. I tell new members that are in a whirlwind as it is, NOT to be getting on those websites for just that reason. Like I said I am not putting the websites down, but its the last thing a new member needs is to be reading outdated material. Again you are right about the treatments wearing you out around 5 or 6. I just completed round 4 and already starting to feel the accumative effects. I feel a little more tired this time after feeling pretty good after rounds 2 and 3. I am waiting for round 5 Sept. 7th and I am sure it will be a little worse. My SUV was down 2/3 from a 9 to a 3 so it is working. Keep your post coming. I as many others rely on you for your informative input. Take care!!! John

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

Good to hear from you and glad you are doing so well. The fatigue is to be expected so I guess we all have to accept it. I agree and don't mean to complain about the websites but they can scare the pants off of you only to find out that the info isn't even relevant anymore. Especially on study results. In the US it takes a long time to cut through all the red tape and jump through all the hoops to even be able to publish any results. According to my MD the studies are usually about 2 years old by the time the general public sees them. I never did know what my SUV numbers were. My MD talks in grades and knew from a PET that I was moving to a grade 2 in one area so same thing I guess. Right now I have been concentrating(aka worrying) about my follow up PET scan tomorrow and with so many here awaiting treatment and struggling through it I don't want to whine about being anxious about my remission. But so much is riding on it. Oh well....we shall see. I will be sure to share the results with all of you. Have a good day. Mary

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

Merry,
Good luck on the pet scan tomorrow. We will all be thinking of you. I am sure you won't know anything till next week as far as results. I got a GOOD feeling about it though. It seems that so many of us are now in the midst of waiting for treatment or waiting for results right now. Wishing you the best tomorrow and be sure you keep us posted. John

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

At The Mayo Clinic where I go you spend a long day there but it is worth it. I have blood work in the early morning followed by a CT. Then a few hours to relax, have lunch and then see my MD at 2PM and he will have all the results by then. I just love that part!! It does make for a long day but it's over by the end of it. Thanks for the good wishes. Mary
PS: That's why I'm anxious. I will know tomorrow!!UGH

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Prayers to you Mary for good results on the P.E.T. scan! You are so fortunate to be able to get your results on the same day. Even though it makes for a "long" day, not having to wait and wonder makes it worth it! Please share your results. It will be good...it will be good...it will be good!..positive thinking only!.
Love...Sue

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

Mary,

I hope your pet scan is good tomorrow, and it is wonderful getting results the same day. I've only had that happen one time, but I always get my results the next day and even waiting that long is hard.

Good thoughts are heading to you, and lots of prayers too.
Take care and good luck!

Beth

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hi Y'All,

Vinny, you are way ahead of me. I'm only on my first and have been very lucky so far.
My thoughts and prayers are with you.

John, I don't know about the bone marrow activity on PET. I had 2 bmb's during initial testing that were negative for involvement, so I definitely have dodged that bullet so far. I'll be watching also to see who has more experience with it.

One day at a time.
Tom

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