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

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

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?

Sparkyz
Posts: 17
Joined: Sep 2010

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

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

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

Sparkyz
Posts: 17
Joined: Sep 2010

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

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

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

Sparkyz
Posts: 17
Joined: Sep 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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
Posts: 17
Joined: Sep 2010

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's picture
COBRA666
Posts: 2413
Joined: May 2010

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

Sparkyz
Posts: 17
Joined: Sep 2010

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

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Mark,
Be sure to share that CT report with us. Good Luck. John (FNHL-1-4A-5/10)

Sparkyz
Posts: 17
Joined: Sep 2010

Hello everyone, The results are still great. I still have a little pressure mid abdomen but doc said CT-Scan looked great and nodes are still shrinking from Rituxan. I had my maintenance infusion of Rituxan today and I did pretty well considering. minimal back pain so i got morphine and most drugs i got pre before we started. I got serious hot flashes but again all worth it if it keeps going down. I have a full day of it tomorrow and I know Fran you will get your next round soon. I hope you do well and please keep us posted. I have to say I wish I found this website a long time ago. this website is such a blessing to keep us all positive!

cheers,

Mark Z

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Thats great news Mark! It appears quite a few of us are coming up on scans, so good results as yours is always happy news. Thanks so much for sharing and I'll keep positive thoughts for only good news to come in your future. Take care...Sue (FNHL-2-3A-6/10)

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

Hi - so very, very happy to hear your CT scan results were good! Such anxious days preceed those test results and what a relief that must be.

The premed drugs are lifesavers, aren't they?

I had 3 very rough weeks but celebrated my one good one this weekend by doing a 3 hour girl's trip (planned in Aug. when I thought chemo was over)with 5 friends to Jacksonville, Fl. An over night at a lovely hotel, 2 days of great meals and to see the Broadway touring Christmas show of the Rockettes. It was so very beautiful and finally got me in the Christmas spirit!

Back to chemo tomorrow and Tuesday all day so this week will be a wipeout in case you don't hear from me. Good to hear from you, George and Mark, and I agree this website keeps our spirits lifted since we're the only ones who really understand what we're going through. Prayers to each of you each day - Fran

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

Hi - so very, very happy to hear your CT scan results were good! Such anxious days preceed those test results and what a relief that must be.

The premed drugs are lifesavers, aren't they?

I had 3 very rough weeks but celebrated my one good one this weekend by doing a 3 hour girl's trip (planned in Aug. when I thought chemo was over)with 5 friends to Jacksonville, Fl. An over night at a lovely hotel, 2 days of great meals and to see the Broadway touring Christmas show of the Rockettes. It was so very beautiful and finally got me in the Christmas spirit!

Back to chemo tomorrow and Tuesday all day so this week will be a wipeout in case you don't hear from me. Good to hear from you, George and Mark, and I agree this website keeps our spirits lifted since we're the only ones who really understand what we're going through. Prayers to each of you each day - Fran

Sparkyz
Posts: 17
Joined: Sep 2010

Hi Fran and everyone else. Thanks for the kind words. My wife and I are very happy about the results so far. I espescially wanted to make sure I posted today because I know its your day back in the chair today and tomorrow Fran. I wanted to give you some positive encouragement to hang in there this week. I know it's tough and sometimes it can leave a perosn feeling lonely and scared but I can tell by the way you talk that you are strong and you will get through this session. Please when you feel better in a few days let us know how it went.

I am glad you were able to celebrate your good week with friends. Hang in there this week and before you know it you will be yourself again soon! I would imagine that you are doing 6 cycles of treanda+R and if thats the case after this week you will already be a third of the way complete. Just keep focused on the getting through this week and rest up and before you know it you will be ready for another weekend out with the girls!!!

talk to you soon!

prayers and thoughts with you - Mark Z

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

HI Mark - thanks for your very nice comments. In case you didn't read my post on another topic just now, I wasn't able to have chemo M & T this week. Showed up with our lunch, blanket, etc. ready for 7 hours in the chair, but my blood counts and Neutrophils from Friday's blood work were way too low. Disappointing to be sent instead for a Neupogen shot that day and Tuesday. But they worked - sky high counts today - they couldn't figure out how that happened in just 2 days. Doesn't matter - I'm on for tomorrow (Thurs.) and Friday. Throws Christmas plans off a bit, but can't be helped. A bigger power than us is in control and not much we can do about it.

Merry Christmas! Fran

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

Hi Everyone - thanks for your nice comments. I've been off celebrating my 68th birthday for 3 days and haven't checked the site until just now. It's fun to take a few days off from thinking about cancer, and good for the spirits!

I'm anxious to hear what your CT scan showed yesterday, Mark. I'll be looking here each day so let us know ASAP. And I'll be thinking of you also on Monday the 14th Sue - know you'll be so glad to have that chemo and Prednisone behind you. I'm praying for good results with your scan too - you probably won't know before Christmas, will you?

I finished 6 Neupogen shots last Friday - hate those things. My white cell count was still too low so hoping today's labs will be better. This is my one week out of four to feel good and I have fun things with friends to do each day. Knowing next week I will be out of it for several weeks.

Hope everyone's having some happy holiday times this month. Must get busy getting candy and cookies made for my nurses and office staff. Like so many of you have said, mine are just awesome and brighten the darkest of days. Takes special people to work in an Oncologist's office! Fondly, Fran

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allmost60
Posts: 3184
Joined: Jul 2010

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
Posts: 44
Joined: Mar 2010

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.

forme's picture
forme
Posts: 1162
Joined: Aug 2010

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's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

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

truckingalong
Posts: 444
Joined: Aug 2010

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's picture
allmost60
Posts: 3184
Joined: Jul 2010

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's picture
tcvine
Posts: 174
Joined: Aug 2010

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's picture
cookingirl
Posts: 183
Joined: May 2010

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

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

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)

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

So sorry Fran that you have been going through such terrible times. Please know I think and pray for you daily Joanie

711tom
Posts: 44
Joined: Mar 2010

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

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