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  • allmost60
    allmost60 Member Posts: 3,178 Member
    #22
    girliefighter said:

    B cell

    Nancy,

    I believe mine is the Follicular B-cell Lymphoma as well. Not really sure that it all makes sense to me yet...lol...The more research I do, the more depressed I get.. I have also read that it isn't cureable, my oncologist actually told me that @ time of diagnosis. How was the bone marrow biopsy? That is my next test and I am NOT looking forward to it.

    I was wondering if you suffer fromany symptoms? I look and feel very healthy, excluding the fatigue makes me feel like I have narcolepsy at timesWink

    It seems very common on this board for people to be placed on "Watch and Wait", I however will be starting CVP+R treatments very soon. They are one every 3 weeks for atleast 6 cycles. Getting my med port put in on monday and am very apprehensive about it, I am so tired of being poked and prodded already and I am only one month into this so far. everything is moving so fast for me.

    Keep in touch,

    Carie

    Welcome Carie...

    Hi Carie, and "Welcome"....

     I am 62 with FNHL-stg3-grd2-typA-Dx 6/10. Your right...things move really fast once you get started and it can be very overwhelming. I had a bad experience with my BMB, but also my Onc had to try 3 times for a sample, which rarely happens. Just make sure you take your sleepy pill/anti anxiety at a time which will cover the whole procedure. I had 6 rounds of CVP-R in 2010 and then did 2 years of Rituxan maint infusions every other month. Finished that in Feb 2013. Now I'm waiting to get my CT scan on Tues and see if I'm FINALLY considered in remission.(knock on wood)Smile! You will find so much help here with this wonderful group of people, so keep coming back! Let us know how your BMB goes tomorrow. Prayers coming your way....Much love...Sue

    (sorry for the late welcome...been a hell of a month for me, but it's getting better now) Been sick twice with sinus infection and ear infection and then had a bout with shingles in between...UGH!

  • girliefighter
    girliefighter Member Posts: 232
    #23
    allmost60 said:

    Welcome Carie...

    Hi Carie, and "Welcome"....

     I am 62 with FNHL-stg3-grd2-typA-Dx 6/10. Your right...things move really fast once you get started and it can be very overwhelming. I had a bad experience with my BMB, but also my Onc had to try 3 times for a sample, which rarely happens. Just make sure you take your sleepy pill/anti anxiety at a time which will cover the whole procedure. I had 6 rounds of CVP-R in 2010 and then did 2 years of Rituxan maint infusions every other month. Finished that in Feb 2013. Now I'm waiting to get my CT scan on Tues and see if I'm FINALLY considered in remission.(knock on wood)Smile! You will find so much help here with this wonderful group of people, so keep coming back! Let us know how your BMB goes tomorrow. Prayers coming your way....Much love...Sue

    (sorry for the late welcome...been a hell of a month for me, but it's getting better now) Been sick twice with sinus infection and ear infection and then had a bout with shingles in between...UGH!

    Hi Sue

    Sue,

    It's  to hear from you, I am sending you healing strength...So sorry you had those stupid shingles and sinus infections ( they seem like childsplay) compared to everything else you have been throgh.

    Had my bone marrow biopsy today, with Ativan 1mg and some shots of numbing magical stuff, it was ok. Lots of problems not being able to get through my thick hard bones and then something got stuck inside me...lol..I am always causing trouble.

    Looks like I a dealing with NHFollicular Lymphoma Stage 4, grade 2, A...

    First treatment CVP+R will be in a week.

    I had an MRI today, due to the fact that I have been having migranes and blurry vision.

    Got my PET Scan results today, still a bit confused on all of that.

    Praying for you....and knockin that wood

    Carie

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #24
    girliefighter said:

    Hi Sue

    Sue,

    It's  to hear from you, I am sending you healing strength...So sorry you had those stupid shingles and sinus infections ( they seem like childsplay) compared to everything else you have been throgh.

    Had my bone marrow biopsy today, with Ativan 1mg and some shots of numbing magical stuff, it was ok. Lots of problems not being able to get through my thick hard bones and then something got stuck inside me...lol..I am always causing trouble.

    Looks like I a dealing with NHFollicular Lymphoma Stage 4, grade 2, A...

    First treatment CVP+R will be in a week.

    I had an MRI today, due to the fact that I have been having migranes and blurry vision.

    Got my PET Scan results today, still a bit confused on all of that.

    Praying for you....and knockin that wood

    Carie

    Same as me...

    Hi Carie,

      Be sure to ask any questions you have about the CVP-R treatment...as John and I both did that regimen. Our cancer is the same except I'm stage 3...no bone marrow involvement. We will be here for you, all the way! Love...Sue

     

  • girliefighter
    girliefighter Member Posts: 232
    #25
    allmost60 said:

    Same as me...

    Hi Carie,

      Be sure to ask any questions you have about the CVP-R treatment...as John and I both did that regimen. Our cancer is the same except I'm stage 3...no bone marrow involvement. We will be here for you, all the way! Love...Sue

     

    same as me

    Sue,

    Thank you so much...My first treatment will be in about a week or so, I have so much anxiety. My Onc said it would be an all day experience. I don't really know what to expect, I am told the predinsone is awful and will make me gain tons of weigh. Onc said I woldnt lose my hair. I am wondering if I will be able to work while going through treatments?? I am a manager at a retail store and am required to work an 10 hour shift, at the same time I do lots of physical work (carrying kayaks, climbing ladders, lifting and moving heavy boxes). Any tips that you would be willing to provide to make this any easier/normal for me would be greatly appreciated. I have an 8 year old boy that takes alot out of me already.

    I am in the process of trying to summon my "Warrior Spirit"Thanks Sue

    Carie

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #26
    girliefighter said:

    same as me

    Sue,

    Thank you so much...My first treatment will be in about a week or so, I have so much anxiety. My Onc said it would be an all day experience. I don't really know what to expect, I am told the predinsone is awful and will make me gain tons of weigh. Onc said I woldnt lose my hair. I am wondering if I will be able to work while going through treatments?? I am a manager at a retail store and am required to work an 10 hour shift, at the same time I do lots of physical work (carrying kayaks, climbing ladders, lifting and moving heavy boxes). Any tips that you would be willing to provide to make this any easier/normal for me would be greatly appreciated. I have an 8 year old boy that takes alot out of me already.

    I am in the process of trying to summon my "Warrior Spirit"Thanks Sue

    Carie

    What to expect...

    Hi Carie,

     I pulled my paper work from my first day of treatment and I can tell you how my clinic did me, but remember...it may not be EXACTLY the same for you....it will give you a general idea. My Onc had me take my prednisone(60mg) at home 1 hr before coming in to the clinic. I had chemo on Tuesdays, every 21 days. My usual schedule was 8:00 a.m blood draw...8:15 Onc visit...8:30 chemo. I NEVER "started" chemo right at 8:30...usually took at least 45 minutes of prep and pre-meds before the chemo drip actually got under way. My pre-meds were: 2 tabs tylenol-1 mg lorazepam-50mg benedryl. About 15 minutes after pre-meds were given they would start the Cyclophosphomide 1200 mg IV infused over 60 minutes. Then they would slow IV push the 2 mg Vincristine over 1-2 minutes. Then comes the Rituxan which they start "very" slowly and gradually increase each hour as long as there is no re-action. I only had a slight re-action immediately after starting the R...my throat started getting tight...so they stopped the drip added more benedryl and 15 minutes later restarted and I was fine. Never had a problem with the Rituxan from that day on. My first round took 8 hours. The second round took 6 1/2 to 7 hours and thats pretty much where it stayed for each infusion. As far as the prednisone goes...well...me and pred are enemies. It really messed with my head and breathing...couldn't sleep...jittery...moody...you name it I felt it. Now I didn't gain weight from it, nor did I lose my taste buds during treatment. Certain foods tasted weird, but thats about it. I did experience neuropathy in a few toes and fingers around the 4th treatment, but with in a month or two after finishing chemo all feeling came back. You WILL be tired Carie,and with each round more tired! I don't think I could have worked during chemo. Others did and do, but personally..I could not have. Remember...I'm retired and was 59 when I had my first round of chemo, so with you being younger, it may go a whole lot easier. What you need to do is continue coming to the group during chemo days and as questions come up, we will be right here to walk you through. That's what, John, Beth, Lisha, Maggie,Donna Vinnie and many, many others did for me. I'd get all freaky and they would calm me down and get me through it. Feel free to e-mail me also. I can't think of much more right now, but you just reach out and we will be here. Hope this helps....Love...Sue

    (I'm still on prednisone for this nasty sinus infection, so I hope all of this makes sense)...ha! Next weekend I'll be more level headed!  Smile

     

  • girliefighter
    girliefighter Member Posts: 232
    #27
    allmost60 said:

    What to expect...

    Hi Carie,

     I pulled my paper work from my first day of treatment and I can tell you how my clinic did me, but remember...it may not be EXACTLY the same for you....it will give you a general idea. My Onc had me take my prednisone(60mg) at home 1 hr before coming in to the clinic. I had chemo on Tuesdays, every 21 days. My usual schedule was 8:00 a.m blood draw...8:15 Onc visit...8:30 chemo. I NEVER "started" chemo right at 8:30...usually took at least 45 minutes of prep and pre-meds before the chemo drip actually got under way. My pre-meds were: 2 tabs tylenol-1 mg lorazepam-50mg benedryl. About 15 minutes after pre-meds were given they would start the Cyclophosphomide 1200 mg IV infused over 60 minutes. Then they would slow IV push the 2 mg Vincristine over 1-2 minutes. Then comes the Rituxan which they start "very" slowly and gradually increase each hour as long as there is no re-action. I only had a slight re-action immediately after starting the R...my throat started getting tight...so they stopped the drip added more benedryl and 15 minutes later restarted and I was fine. Never had a problem with the Rituxan from that day on. My first round took 8 hours. The second round took 6 1/2 to 7 hours and thats pretty much where it stayed for each infusion. As far as the prednisone goes...well...me and pred are enemies. It really messed with my head and breathing...couldn't sleep...jittery...moody...you name it I felt it. Now I didn't gain weight from it, nor did I lose my taste buds during treatment. Certain foods tasted weird, but thats about it. I did experience neuropathy in a few toes and fingers around the 4th treatment, but with in a month or two after finishing chemo all feeling came back. You WILL be tired Carie,and with each round more tired! I don't think I could have worked during chemo. Others did and do, but personally..I could not have. Remember...I'm retired and was 59 when I had my first round of chemo, so with you being younger, it may go a whole lot easier. What you need to do is continue coming to the group during chemo days and as questions come up, we will be right here to walk you through. That's what, John, Beth, Lisha, Maggie,Donna Vinnie and many, many others did for me. I'd get all freaky and they would calm me down and get me through it. Feel free to e-mail me also. I can't think of much more right now, but you just reach out and we will be here. Hope this helps....Love...Sue

    (I'm still on prednisone for this nasty sinus infection, so I hope all of this makes sense)...ha! Next weekend I'll be more level headed!  Smile

     

    Bless you

    Sue,

    Bless your heart for going through all that trouble for me. I appreciate it more than words can say. Its funny how alone one feels while going through this, even being surrounded by family and friends. I find solace when I come here, to this board. It makes things so much easier to know other people's struggles and how they got through, plus it gives me a sense of hope. I have had so much anxiety about every step of the way. I survived the bone marrow biopsy, with the help of some LorazepamWink.

      I am hoping that your sinus stuff clears quickly for you, so that you can say goodbye to your nemesis prednisone. I feel so bad for anyone who even gets a headache nowSmile

    xxxooo

    Carie

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