George - are you there? Treanda kicked me good last week - question.

cookingirl
cookingirl Member Posts: 183
OMG - my two days in chemo lab for my first doese of Treanda (Bendamustine)-R just about put me under the past 4 days. I could not get out of bed for 3 days - extreme fatigue 10 times worse than my CVP-R of last summer. I couldn't even speak for 2 days, had dreadful diahrrea, extreme thirst and nauseau. They were very concerned at my Oncologist's yesterday since I'd lost 13 lbs. since Friday (4 days) - too fast and not good. Have Neupogen shots which are very painful in the bone and stomach area 3 times this week, 3 next. I know I'll make it through but not sure about 5 more tretments! You said your after effects were mild - guess we're all different. Any advice at all, George, since you're the only one who wrote you've been through this chemo for NHL?
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Comments

  • Sparkyz
    Sparkyz Member Posts: 17
    So sorry . . .
    So sorry to hear about your bad few days on Treanda+R. I finished my original 6 cycles of treanda this past June. I have stage 4 Grade 1-2 NHL Indolent B Cell. the Treanda plus Rituxan really kicked my butt as well everytime I got it. I am 39 and I was in pretty good shape. I was on a once a month regimen of two days. Everytime I got it I was nautious and therefore my doc put me on amend which worked pretty good. I got the chemo on Thrusday and Friday every session and by Saturday afternoon all energy was gone and by Sunday afternoon I was a mess. I didnt want to do anything but lay in bed. By Tuesday I started to get some energy back. On the third session I was hospitalized for going into Afib. We are thinking it was the Rituxan that brought me to that point because even on maintenance I still have heart palps and flutters.Although I am on Maintenance now with Rituxan and I have always had a problem with Rituxan as well from the very start. But so far so good for me after finishing the past sessions with Treanda. 0% in bone marrow and most of the cancer has shrunk so although I was a bit miserable and still am currently on rituxan I will take the results.

    I think you put it well when you mentioned that everyone is different. Hopefully it will get easier for you with each session if anything at least you will know what to expect during and after chemo. Hang in there and dont give up!!! You have a whole army of friends on this site that are going through the same thing and remember that you are an inspiration! :) I dont know how much this helps but I hope I can make you smile! :-)

    Sparkyz
  • forme
    forme Member Posts: 1,161 Member
    So sorry
    Hi Fran,
    I am so sorry to hear that your effects from the Bendamustine were so extreme. I wish you a easier time for the next go round. Lets hope that this was the worst of it and that your body will get used to the new chemo. I am sending you positive healing energy and will keep you in my prayers.
    peaceful healing
    Lisha
  • dixiegirl
    dixiegirl Member Posts: 1,043
    forme said:

    So sorry
    Hi Fran,
    I am so sorry to hear that your effects from the Bendamustine were so extreme. I wish you a easier time for the next go round. Lets hope that this was the worst of it and that your body will get used to the new chemo. I am sending you positive healing energy and will keep you in my prayers.
    peaceful healing
    Lisha

    What a bummer
    Oh Fran, I am sorry for how bad you've felt. I too hope sincerely that your next go around will be better.

    I hope you have a wonderful Thanksgiving with friends and family.

    Take care,
    Beth
  • cookingirl
    cookingirl Member Posts: 183
    Sparkyz said:

    So sorry . . .
    So sorry to hear about your bad few days on Treanda+R. I finished my original 6 cycles of treanda this past June. I have stage 4 Grade 1-2 NHL Indolent B Cell. the Treanda plus Rituxan really kicked my butt as well everytime I got it. I am 39 and I was in pretty good shape. I was on a once a month regimen of two days. Everytime I got it I was nautious and therefore my doc put me on amend which worked pretty good. I got the chemo on Thrusday and Friday every session and by Saturday afternoon all energy was gone and by Sunday afternoon I was a mess. I didnt want to do anything but lay in bed. By Tuesday I started to get some energy back. On the third session I was hospitalized for going into Afib. We are thinking it was the Rituxan that brought me to that point because even on maintenance I still have heart palps and flutters.Although I am on Maintenance now with Rituxan and I have always had a problem with Rituxan as well from the very start. But so far so good for me after finishing the past sessions with Treanda. 0% in bone marrow and most of the cancer has shrunk so although I was a bit miserable and still am currently on rituxan I will take the results.

    I think you put it well when you mentioned that everyone is different. Hopefully it will get easier for you with each session if anything at least you will know what to expect during and after chemo. Hang in there and dont give up!!! You have a whole army of friends on this site that are going through the same thing and remember that you are an inspiration! :) I dont know how much this helps but I hope I can make you smile! :-)

    Sparkyz

    George - are you there? Trenda kicked me good last week....
    Thanks so much Beth, Lisha and Sparkyz for your encouragement. AND for sharing your symptoms, Sparkyz, on the same plan I'm on. I'm 68, stage 4, grade 2, Indolent B cell Follicular NHL. I'm on the same 2 day regimen every four weeks. Monday was 7 hours, Tues. 4 in the Lab. I will ask about Amend. I've had two Heart Ablations for A-Fib and A-Flutter in the past 6 years, so this may also put me in the hospital with that returning as it did you.
    Great to hear your cancer has shrunk and 0% in bone marrow - will keep those thoughts in mind when it gets rough in another few weeks! Do you mind my asking if you had a large tumor or many smaller ones? My abdominal one is 8.5 cm under my intestines and too deeply buried to ever be operable. So chemo has to work. I do have a huge support system of family and friends not on this site, but it sure helps to talk with those of you who have been there, done that. Have a Happy Thanksgiving and I'm so thankful for the Doctors and Research scientists who are working on new treatments for us each day - Fran
  • truckingalong
    truckingalong Member Posts: 444
    dixiegirl said:

    What a bummer
    Oh Fran, I am sorry for how bad you've felt. I too hope sincerely that your next go around will be better.

    I hope you have a wonderful Thanksgiving with friends and family.

    Take care,
    Beth

    You are in my thoughts
    Fran, I hope the next treatment gets easier. I had it rough with the earlier treatments. For some reason, the bodies seem to learn to get used to what is going on with time and hopefully, that would be in your case. Have a pleasant Thanksgiving.

    Liz
    (HL-4B-8/2010)
  • allmost60
    allmost60 Member Posts: 3,178

    You are in my thoughts
    Fran, I hope the next treatment gets easier. I had it rough with the earlier treatments. For some reason, the bodies seem to learn to get used to what is going on with time and hopefully, that would be in your case. Have a pleasant Thanksgiving.

    Liz
    (HL-4B-8/2010)

    Me too Fran...
    Hi Fran,
    You are in my thoughts and prayers also that the treatments will get easier. Maybe you can put on some weight with all of the holiday food we will be surrounded with. I plan to bake and make fudge and if I get to looking like a little butterball...well too bad! I'm going for the gold! Take care and keep us posted with your treatments. Maybe They will get easier when your body adjusts..(is that possible?)...hope so! Oh BTW..my onc gave me Ambien 10mg for the 5days on the "pred". I know you said it didn't work for you, but maybe it will for me...I'll let you know. Love...Sue..(FNHL-2-3A-6/10)
    "Happy Thanksgiving"
  • tcvine
    tcvine Member Posts: 174
    allmost60 said:

    Me too Fran...
    Hi Fran,
    You are in my thoughts and prayers also that the treatments will get easier. Maybe you can put on some weight with all of the holiday food we will be surrounded with. I plan to bake and make fudge and if I get to looking like a little butterball...well too bad! I'm going for the gold! Take care and keep us posted with your treatments. Maybe They will get easier when your body adjusts..(is that possible?)...hope so! Oh BTW..my onc gave me Ambien 10mg for the 5days on the "pred". I know you said it didn't work for you, but maybe it will for me...I'll let you know. Love...Sue..(FNHL-2-3A-6/10)
    "Happy Thanksgiving"

    All good wishes
    Hello Fran,

    So sorry to hear of your latest treatment reaction. I have not googled the stuff you are getting, but it really sounds tough. I hope that you have a restful, recuperative holiday.

    You have my prayers,
    Tom (DLBCL-4-7/10/0
  • cookingirl
    cookingirl Member Posts: 183
    allmost60 said:

    Me too Fran...
    Hi Fran,
    You are in my thoughts and prayers also that the treatments will get easier. Maybe you can put on some weight with all of the holiday food we will be surrounded with. I plan to bake and make fudge and if I get to looking like a little butterball...well too bad! I'm going for the gold! Take care and keep us posted with your treatments. Maybe They will get easier when your body adjusts..(is that possible?)...hope so! Oh BTW..my onc gave me Ambien 10mg for the 5days on the "pred". I know you said it didn't work for you, but maybe it will for me...I'll let you know. Love...Sue..(FNHL-2-3A-6/10)
    "Happy Thanksgiving"

    George - are you there? Treanda
    Hi Sue - thanks for your post - your fudge will be wonderful! We're going to a son and families for turkey dinner tomorrow in Melbourne, FL. First time in many years we won't be hosting, but not the year for that. I'm making the stuffing and Pumpkin Cheesecake to take if I can muster up the energy today.
    I'm glad Ambien worked for you - I've taken 10mg. Ambien for 3 or 4 years which is probably why it didn't for me. My onc gave me 30 mg. Restoril during Prednisone which let me get about 6 hours sleep - makes your mind shut down for a few hours! Wish I could feel your probably 40 degree temperatures today instead of our mid 80's - we're going into our nice 4 months of great temps so shouldn't complain! How many more CVP-R chemos do you have? Happy Thanksgiving to all! Fran
  • Sparkyz
    Sparkyz Member Posts: 17

    George - are you there? Trenda kicked me good last week....
    Thanks so much Beth, Lisha and Sparkyz for your encouragement. AND for sharing your symptoms, Sparkyz, on the same plan I'm on. I'm 68, stage 4, grade 2, Indolent B cell Follicular NHL. I'm on the same 2 day regimen every four weeks. Monday was 7 hours, Tues. 4 in the Lab. I will ask about Amend. I've had two Heart Ablations for A-Fib and A-Flutter in the past 6 years, so this may also put me in the hospital with that returning as it did you.
    Great to hear your cancer has shrunk and 0% in bone marrow - will keep those thoughts in mind when it gets rough in another few weeks! Do you mind my asking if you had a large tumor or many smaller ones? My abdominal one is 8.5 cm under my intestines and too deeply buried to ever be operable. So chemo has to work. I do have a huge support system of family and friends not on this site, but it sure helps to talk with those of you who have been there, done that. Have a Happy Thanksgiving and I'm so thankful for the Doctors and Research scientists who are working on new treatments for us each day - Fran

    Hi Fran,
    If I remember

    Hi Fran,

    If I remember correctly my lymphnodes were double the size they were supposed to be. I basically had it all in my intestinal area both sides, groin area and under my clavical. On the PET-Scan i lit up like a christmas tree almost every node was effected. Also it was in my spleen and bone marrow at the time. I still have some left in the center of my stomach area. They were big enough and lots of them effected that i actually would lay down at night and feel allot of pressure and I was unable to lay on my stomach at all. This is what caused me to go to the doctors to get checked.

    Hopefully you wont have any A-fib heart problems again. My main problem is with the Rituxan. 99% of all patients do fine on Rituxan and most who dont get used to it by second or thrid infusion and its fine in time. Me unfortunately am the 1% i guess that doesnt, but as I mentioned I know its working so I will make do and am ready each time with heart meds etc. As far as the Amend medication it works wonders for me. My first chemo weekend was very brutal for me. I was throwing up and had terrible stomach pains and lots of diarrhea to the point I lost 18 pounds that weekend. (not the weight loss program I was hoping for at the time).A family friend had breast cancer and also took amend and told me about it after my first weekend of chemo / treanda + R and ever since then a little nautious but never as bad. Its basically 3 pills and you take one the morning of chemo an hour beforehand and the same the second day and then around the same time on the third day.

    I will say that my Dr. told me that my nodes would start shrinking by the second chemo month and he was absolutely correct. I was amazed at how much better I felt right away. He thinks the Rituxan may help continue to shrink whats left in my stomach right now. So I would say hang in there and don't give up. I am sure you will see some good results soon! It sounds like you have a great support system too and thats half the battle. When is your next session going to be?

    Mark Z
  • 711tom
    711tom Member Posts: 44

    George - are you there? Trenda kicked me good last week....
    Thanks so much Beth, Lisha and Sparkyz for your encouragement. AND for sharing your symptoms, Sparkyz, on the same plan I'm on. I'm 68, stage 4, grade 2, Indolent B cell Follicular NHL. I'm on the same 2 day regimen every four weeks. Monday was 7 hours, Tues. 4 in the Lab. I will ask about Amend. I've had two Heart Ablations for A-Fib and A-Flutter in the past 6 years, so this may also put me in the hospital with that returning as it did you.
    Great to hear your cancer has shrunk and 0% in bone marrow - will keep those thoughts in mind when it gets rough in another few weeks! Do you mind my asking if you had a large tumor or many smaller ones? My abdominal one is 8.5 cm under my intestines and too deeply buried to ever be operable. So chemo has to work. I do have a huge support system of family and friends not on this site, but it sure helps to talk with those of you who have been there, done that. Have a Happy Thanksgiving and I'm so thankful for the Doctors and Research scientists who are working on new treatments for us each day - Fran

    I am so sorry
    Fran, I am sorry I have not been on the board to give you an earlier response. I am so sorry to hear about the side effects you are experiencing. I was 47 when I did a clinical trial of Bendamustine-R in 2005. I guess I was just lucky in that I had very few side effects other than weight loss. I certainly had some fatigue but nothing like you are describing. I never had diarea, just some loss of appetite. Perhaps in the clinical trial I did a limited dose? I don't recall the side effects being so bad and compared to CHOP they were way easier. I wish you well and I am so sorry I portrayed this as "easy" as we are all different and none of them are easy. I hope it gets better and I pray that you will stay strong and I pray for you and all on this board for courage, hope and a cure.
  • allmost60
    allmost60 Member Posts: 3,178

    George - are you there? Treanda
    Hi Sue - thanks for your post - your fudge will be wonderful! We're going to a son and families for turkey dinner tomorrow in Melbourne, FL. First time in many years we won't be hosting, but not the year for that. I'm making the stuffing and Pumpkin Cheesecake to take if I can muster up the energy today.
    I'm glad Ambien worked for you - I've taken 10mg. Ambien for 3 or 4 years which is probably why it didn't for me. My onc gave me 30 mg. Restoril during Prednisone which let me get about 6 hours sleep - makes your mind shut down for a few hours! Wish I could feel your probably 40 degree temperatures today instead of our mid 80's - we're going into our nice 4 months of great temps so shouldn't complain! How many more CVP-R chemos do you have? Happy Thanksgiving to all! Fran

    One more
    Hi Fran,
    I have one more round on Dec.14th. I took the Ambien last night for the first time and I gotta say...I wasn't impressed. I took it at mid-nite and fell asleep with-in half an hour, but woke up 3 hours later and couldn't begin to get back to sleep. I was hoping for a 6 hour sleep time, but I guess 3 will have to do...ha! Our temps are in the low teens today...quit snowing, but BRRRRRR cold! Enjoy your diner tomorrow!
    Love...Sue (FNHL-2-3A-6/10)
  • cookingirl
    cookingirl Member Posts: 183
    Sparkyz said:

    Hi Fran,
    If I remember

    Hi Fran,

    If I remember correctly my lymphnodes were double the size they were supposed to be. I basically had it all in my intestinal area both sides, groin area and under my clavical. On the PET-Scan i lit up like a christmas tree almost every node was effected. Also it was in my spleen and bone marrow at the time. I still have some left in the center of my stomach area. They were big enough and lots of them effected that i actually would lay down at night and feel allot of pressure and I was unable to lay on my stomach at all. This is what caused me to go to the doctors to get checked.

    Hopefully you wont have any A-fib heart problems again. My main problem is with the Rituxan. 99% of all patients do fine on Rituxan and most who dont get used to it by second or thrid infusion and its fine in time. Me unfortunately am the 1% i guess that doesnt, but as I mentioned I know its working so I will make do and am ready each time with heart meds etc. As far as the Amend medication it works wonders for me. My first chemo weekend was very brutal for me. I was throwing up and had terrible stomach pains and lots of diarrhea to the point I lost 18 pounds that weekend. (not the weight loss program I was hoping for at the time).A family friend had breast cancer and also took amend and told me about it after my first weekend of chemo / treanda + R and ever since then a little nautious but never as bad. Its basically 3 pills and you take one the morning of chemo an hour beforehand and the same the second day and then around the same time on the third day.

    I will say that my Dr. told me that my nodes would start shrinking by the second chemo month and he was absolutely correct. I was amazed at how much better I felt right away. He thinks the Rituxan may help continue to shrink whats left in my stomach right now. So I would say hang in there and don't give up. I am sure you will see some good results soon! It sounds like you have a great support system too and thats half the battle. When is your next session going to be?

    Mark Z

    Wow - 18 lbs. in one weekend
    Wow - 18 lbs. in one weekend - and I thought my 13 was bad! Thanks for your additional message. I'm definately going to ask about Amend before my next chemo 12/13 - 14. My onco. doesn't give this Treanda often - I may his 4th or 5th patient. Since it was recommended by Moffitt Cancer Center in Tampa and I didn't receive informational material from them, no one has mentioned when the nodes would start shrinking. I will ask and see if they have an answer. I'ts amazing and wonderful yours did after the second chemo - gives me great encouragement.

    Will you be on Rituxan maintenance for 2 years (which was my original plan before CVP-R didn't work for me)? Don't know where you live, but wondering if your local oncologist prescribed B-R or a cancer center?? Hope your Thanksgiving was happy - I was able to eat a full turkey dinner so I'm improving each day. Also had 3 Neupogen shots this week and 3 next - do you remember if your white cell counts drop drastically with this chemo?

    Thanks - Fran
  • JoanieP
    JoanieP Member Posts: 573

    George - are you there? Treanda
    Hi Sue - thanks for your post - your fudge will be wonderful! We're going to a son and families for turkey dinner tomorrow in Melbourne, FL. First time in many years we won't be hosting, but not the year for that. I'm making the stuffing and Pumpkin Cheesecake to take if I can muster up the energy today.
    I'm glad Ambien worked for you - I've taken 10mg. Ambien for 3 or 4 years which is probably why it didn't for me. My onc gave me 30 mg. Restoril during Prednisone which let me get about 6 hours sleep - makes your mind shut down for a few hours! Wish I could feel your probably 40 degree temperatures today instead of our mid 80's - we're going into our nice 4 months of great temps so shouldn't complain! How many more CVP-R chemos do you have? Happy Thanksgiving to all! Fran

    So sorry
    So sorry Fran that you have been going through such terrible times. Please know I think and pray for you daily Joanie
  • Sparkyz
    Sparkyz Member Posts: 17

    Wow - 18 lbs. in one weekend
    Wow - 18 lbs. in one weekend - and I thought my 13 was bad! Thanks for your additional message. I'm definately going to ask about Amend before my next chemo 12/13 - 14. My onco. doesn't give this Treanda often - I may his 4th or 5th patient. Since it was recommended by Moffitt Cancer Center in Tampa and I didn't receive informational material from them, no one has mentioned when the nodes would start shrinking. I will ask and see if they have an answer. I'ts amazing and wonderful yours did after the second chemo - gives me great encouragement.

    Will you be on Rituxan maintenance for 2 years (which was my original plan before CVP-R didn't work for me)? Don't know where you live, but wondering if your local oncologist prescribed B-R or a cancer center?? Hope your Thanksgiving was happy - I was able to eat a full turkey dinner so I'm improving each day. Also had 3 Neupogen shots this week and 3 next - do you remember if your white cell counts drop drastically with this chemo?

    Thanks - Fran

    On Rit maintenance now
    Hi Fran,

    Im now on Rituxan maintenane now. I had my first Rituxan only treatment in September. on 10/9 and 10/10 I iwll have my second. I will have so far the usual routine of every three months. I may hve to come off of it because of the bad side effects I personally get. As I mentioned I that one in a million that gets really bad side effects from rituxan. It should usually take a couple of hours and that it but wh I gt it my wife and I asre in the office for two full days on a really relaly slow drip.

    We are located in CT and my Dr. is in the fairfield area. Very intelligent and warm man. only a few years older than me but hes top notch! He is the one that chose Treanda. We were about two weeks away from going on R-Chop when he decided to put me on Treanda. Tho it was tough and what chemo isnt from what I understand the R-Chop would have been tougher.

    My white counts usually went down but by week 3 they were back to normal. I never had to get any shots, thank goodness because I understand they are not too pleaant. He said the one thing I have on my side is I'm a pretty big guy 250 and in pretty good shape at only 38 years old when I started the treatment. I am finally back to working out now and getting back in shape. I lost 20 of the 45 pounds I gained from being sedintary during the initial chemo.

    Fran I know you can get through this and you will be amazed at the results when your chemo is done. How long does it usually take you to go through your infusion over the two days?

    Mark Z
  • cookingirl
    cookingirl Member Posts: 183
    Sparkyz said:

    On Rit maintenance now
    Hi Fran,

    Im now on Rituxan maintenane now. I had my first Rituxan only treatment in September. on 10/9 and 10/10 I iwll have my second. I will have so far the usual routine of every three months. I may hve to come off of it because of the bad side effects I personally get. As I mentioned I that one in a million that gets really bad side effects from rituxan. It should usually take a couple of hours and that it but wh I gt it my wife and I asre in the office for two full days on a really relaly slow drip.

    We are located in CT and my Dr. is in the fairfield area. Very intelligent and warm man. only a few years older than me but hes top notch! He is the one that chose Treanda. We were about two weeks away from going on R-Chop when he decided to put me on Treanda. Tho it was tough and what chemo isnt from what I understand the R-Chop would have been tougher.

    My white counts usually went down but by week 3 they were back to normal. I never had to get any shots, thank goodness because I understand they are not too pleaant. He said the one thing I have on my side is I'm a pretty big guy 250 and in pretty good shape at only 38 years old when I started the treatment. I am finally back to working out now and getting back in shape. I lost 20 of the 45 pounds I gained from being sedintary during the initial chemo.

    Fran I know you can get through this and you will be amazed at the results when your chemo is done. How long does it usually take you to go through your infusion over the two days?

    Mark Z

    How long does it take for Infusion over 2 days?
    Hi Mark and so many others who have replied - I appreciate each of your comments - thank you very much. My computer's been in the shop for a week so I haven't been on this site for awhile - sorry.

    You asked about how long it takes, Mark, for the Treanda and R drips. The first day we were there 7 hours - second day 4 1/2. My second chemo is Dec. 13 - 14 so I'm trying to get cookies baked, presents wrapped, etc. because if the second time is as bad as the first, I will be wiped out until about Christmas Eve.

    At this time, I can get a few things done in the mornings until about 1:00 p.m. and then I crash for the day. That didn't happen with CVP - R - hardly lost any energy. Before cancer I was the energizer bunny, easily going 18 hours a day without ever getting tired. Those days are over! But I'm remaining positive and in our research have found the success rate for Treanda - R is higher than CHOP. So I'm praying a miracle occurs that didn't happen with the other chemo.

    Hate the Neupogen shots - had 3 last week, 3 this. You sure have your young age going for you Mark, and I'm thrilled at your success on this treatment. Hope the Rituxon symptoms improve for you soon - so far I haven't had any bad reactions from that.

    Prayers going out daily for everyone on this site - Fondly, Fran
  • Sparkyz
    Sparkyz Member Posts: 17

    How long does it take for Infusion over 2 days?
    Hi Mark and so many others who have replied - I appreciate each of your comments - thank you very much. My computer's been in the shop for a week so I haven't been on this site for awhile - sorry.

    You asked about how long it takes, Mark, for the Treanda and R drips. The first day we were there 7 hours - second day 4 1/2. My second chemo is Dec. 13 - 14 so I'm trying to get cookies baked, presents wrapped, etc. because if the second time is as bad as the first, I will be wiped out until about Christmas Eve.

    At this time, I can get a few things done in the mornings until about 1:00 p.m. and then I crash for the day. That didn't happen with CVP - R - hardly lost any energy. Before cancer I was the energizer bunny, easily going 18 hours a day without ever getting tired. Those days are over! But I'm remaining positive and in our research have found the success rate for Treanda - R is higher than CHOP. So I'm praying a miracle occurs that didn't happen with the other chemo.

    Hate the Neupogen shots - had 3 last week, 3 this. You sure have your young age going for you Mark, and I'm thrilled at your success on this treatment. Hope the Rituxon symptoms improve for you soon - so far I haven't had any bad reactions from that.

    Prayers going out daily for everyone on this site - Fondly, Fran

    CT-Scan next week
    Hi Fran and everyone else,

    I have my CT scan next week Monday the 6th. Had blood work yesterday. first time I have had a needle in my arm in 2 months. I never thought that would be such a long time. Its amazing the things we take for granted. :)

    I know I still have some NHL in the middle of my stomach area and i can feel it but nothing like what it once was. My next maintenance is 12/9 and 10. Of course not as bad as with chemo but two long days 8-10 each. thats a long time to sit in a chair and watch deal or no deal in the Onc office but the nurses that take care of me are awesome. Plus my wife never leaves my side. We take the rituxan and water it down to half for each day and go very very slow but as I have mentioned Fran it's worth it.

    Your are correct so far my age is helping but on the same note treanda +R seems to be so much better from what I have read and heard compared to R-Chop. I hope that is the same for you. And dont fool yourself Fran you are still young too!

    I guess we will have to make sure we contact each other when we are both up to it after the 14th and compare notes. My prayers are for you too Fran and everyone else here.

    Mark Z
  • COBRA666
    COBRA666 Member Posts: 2,401
    Sparkyz said:

    CT-Scan next week
    Hi Fran and everyone else,

    I have my CT scan next week Monday the 6th. Had blood work yesterday. first time I have had a needle in my arm in 2 months. I never thought that would be such a long time. Its amazing the things we take for granted. :)

    I know I still have some NHL in the middle of my stomach area and i can feel it but nothing like what it once was. My next maintenance is 12/9 and 10. Of course not as bad as with chemo but two long days 8-10 each. thats a long time to sit in a chair and watch deal or no deal in the Onc office but the nurses that take care of me are awesome. Plus my wife never leaves my side. We take the rituxan and water it down to half for each day and go very very slow but as I have mentioned Fran it's worth it.

    Your are correct so far my age is helping but on the same note treanda +R seems to be so much better from what I have read and heard compared to R-Chop. I hope that is the same for you. And dont fool yourself Fran you are still young too!

    I guess we will have to make sure we contact each other when we are both up to it after the 14th and compare notes. My prayers are for you too Fran and everyone else here.

    Mark Z

    Diagnosis,
    Mark,
    Just wondering what your initial diagnosis was. I checked your expressions but nothing there. Thanks, John (FNHL-1-4A-5/10)
  • allmost60
    allmost60 Member Posts: 3,178

    How long does it take for Infusion over 2 days?
    Hi Mark and so many others who have replied - I appreciate each of your comments - thank you very much. My computer's been in the shop for a week so I haven't been on this site for awhile - sorry.

    You asked about how long it takes, Mark, for the Treanda and R drips. The first day we were there 7 hours - second day 4 1/2. My second chemo is Dec. 13 - 14 so I'm trying to get cookies baked, presents wrapped, etc. because if the second time is as bad as the first, I will be wiped out until about Christmas Eve.

    At this time, I can get a few things done in the mornings until about 1:00 p.m. and then I crash for the day. That didn't happen with CVP - R - hardly lost any energy. Before cancer I was the energizer bunny, easily going 18 hours a day without ever getting tired. Those days are over! But I'm remaining positive and in our research have found the success rate for Treanda - R is higher than CHOP. So I'm praying a miracle occurs that didn't happen with the other chemo.

    Hate the Neupogen shots - had 3 last week, 3 this. You sure have your young age going for you Mark, and I'm thrilled at your success on this treatment. Hope the Rituxon symptoms improve for you soon - so far I haven't had any bad reactions from that.

    Prayers going out daily for everyone on this site - Fondly, Fran

    Miracle...
    Hi Fran,
    I will be praying for a miracle also for you. I have my last CVP-R treatment on the 14th, same day as you, so I will keep you in my thoughts all day long as I sit at the clinic. So far I have not gotten out of the clinic in less than 5 to 6 hours, so I always have plenty of time to think in between dozing off...ha! I pray my chemo has worked on my tumors as with reading about having to do a different kind of treatment puts great fear in me. My CT-scan will be scheduled for the week after the 14th, so I guess we will know then if my chemo worked or not. Sure hope I get "good" news! Hang in there Fran, and as always, keep us up-dated. Love...Sue (FNHL-2-3A-6/10)
  • 711tom
    711tom Member Posts: 44

    George - are you there? Treanda
    Hi Sue - thanks for your post - your fudge will be wonderful! We're going to a son and families for turkey dinner tomorrow in Melbourne, FL. First time in many years we won't be hosting, but not the year for that. I'm making the stuffing and Pumpkin Cheesecake to take if I can muster up the energy today.
    I'm glad Ambien worked for you - I've taken 10mg. Ambien for 3 or 4 years which is probably why it didn't for me. My onc gave me 30 mg. Restoril during Prednisone which let me get about 6 hours sleep - makes your mind shut down for a few hours! Wish I could feel your probably 40 degree temperatures today instead of our mid 80's - we're going into our nice 4 months of great temps so shouldn't complain! How many more CVP-R chemos do you have? Happy Thanksgiving to all! Fran

    Fran, just wondering how you
    Fran, just wondering how you are doing. I have been thinking of you a lot and praying things are getting better. I apologize as I only get on the board intermittently so i may have missed some correspondence. Hope you are well and I hope that tumor is melting away!!

    George
  • Sparkyz
    Sparkyz Member Posts: 17
    COBRA666 said:

    Diagnosis,
    Mark,
    Just wondering what your initial diagnosis was. I checked your expressions but nothing there. Thanks, John (FNHL-1-4A-5/10)

    Hi John ,
    I was initialliy

    Hi John ,

    I was initialliy daig with FNHL stage 4 grade1-2. both hemispheres of the abdomen and in spleen and 9% in bone marrow as well as some in clavical nodes and groin area.

    Had latest Ct-scan today waiting for results as I type from onc.

    cheers,

    Mark z