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Follicular Lymphoma - Rituxan and Bendamustine

swell
Posts: 5
Joined: Apr 2004

Howdy - Anyone try this combination with anything close to Stage IV, Grade 2 follicular lymphoma?

Faith_
Posts: 56
Joined: Mar 2011

Yes, my husband is currently being treatment with Rituxan/Bendamustine. He just completed his second Chemo cycle of R/B Monday and Tuesday of last week. Was diagnosed with Non-Hodgkin’s Follicular Lymphoma, Low Grade, and Stage IV.

The day after his first infusion which was on March 18th(Rituxan), he could not get out of bed, this lasted for 2 days. And then because they broke up the infusions in a two week span they gave him part 2 of his first cycle on the Thursday/Friday of the following week (R/B on both days). He was ok for about 2 days and then he started feeling fatigued , headaches, flushed feeling in his head, felt his inside were moving. This lasted for 4-5 days. Then he felt pretty good for 2 weeks. Still felt tired but that was about it.

The second cycle was given to him on April 25nd(R/B)and April 26th(Bendamustine only). Started off feeling good but again after the 3rd day it hit him, this time much more intense. He felt nauseated, head felt hot but never ran a fever, severe muscle pains at night, upset stomach and fatigued couldn’t get out of bed. Also, started to notice that his sense of taste and smell is more intense. Today, he is starting to feel a little better. Managed to stay up and watch TV but not for long. Still very tired. Oh and no hair loss.

We have a CT Scan scheduled on Monday May 2nd and he has one more treatment scheduled for late in May.

These are side effects that my husband has had with this Chemo treatment, this is not to say that you will have the same since everyone is different.

Hope this help. I wish you all the best. God Bless.

Michele23
Posts: 168
Joined: Mar 2011

Hello,I'm coming up on round #5.I have NHL Follicular mixed cell stage 3 Dx1995.Have done good bit of treatment over the years and this one has caused me more side effects then any before.Thus far the drugs are working well so if I can finish out these last 2 rounds I'm home free.My side effects started on the first treatment:Headache, bone pain,eye pain {one eye},fatigued & weak,severe itching and rash.For some reason it affected my knees with pain then one knee swelled with fluid an I had to get it tapped twice and have a cordisone shot.Finally after about 10 days not being able to walk it went away.The itching and rash progressed and am still dealing with this.My dr said in order to finish out these treatments they may need to lower the dose due to the adverse side effects my body is having to Treanda.They had to put me on a pill form 6 day pk of steriods to curve the itch and rash.So well see...As Faith said everyone reacts differently to these drugs.Seems many people have side effects from Rituxan,I on the other hand sailed through 10 yrs of treatments easily so there you have it.Please come back and chat.Good luck,take care.Michele

CountryGal7557
Posts: 165
Joined: Feb 2011

my journey is posted @ http://lifeisgood2010.wordpress.com/
if you'd like to hear how one person's life changed by the same cancer & treatment you are asking about. we are all different, but it's good to know where others have been. Good Luck Janelle

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

Hi - read your journey, Country Gal, and it was great! I've kept one on my computer for our own use, but didn't think to blog online - good for you!

As several of you wrote, I too had severe symptoms from my 2 day treatments. It was far worse than the CVP-R I did last June - Nov. My Oncy. reduced my dosage from 100% to 70% because of so many symptoms and having to stay in bed 3 weeks of each month. The last 3 months with the reduction were easier, but certainly not home free. I've read other posts where people had 100% remission from this chemo - it didn't happen after my third month, but hoping for better results next week with my PET scan May 13 after 6 months and 12 days (since it was two days each treatment). I wish those of you just starting good luck - it may be rough, but hopefully worth it if it brings remission. Prayers to all of you - Fran, NHL, Follicular, stage 4, B cell, Indolent

Michele23
Posts: 168
Joined: Mar 2011

Hi Fran,Congrads,I'm glad to see you were able to finish this.My last scan is showing no disease although my dr had mentioned doing 6 rounds.I'm at round #5 coming up.Not holding my breath they will complete these treatments as my skin rash and itching are progressing wildly.Just finished a steroid pk.Really don't think this reaction is from Rituxan but maybe this was the one too many for my body and it's letting me know.Keep a good watch on your lungs.Know of one fellow having breathing problems a yr after.Have read where Treanda can affect the lung lining.So Scary!!.Hope you get all your strength back and those scans are clear.Blessings,Michele Dx95 FNHL3

CountryGal7557
Posts: 165
Joined: Feb 2011

Hi Michele, my scan showed "no activity" after 4 treatments - same as you. my doctor did not finish 5 & 6, but moved onto 4 weekly Rituxan for "good measure". Hopefully you will get relief soon from the rash and your next scan is "no activity" or however they read it so that it's Remission Baby!!!
Love
janelle
p.s. where did you read about the lung lining link to Treanda? I spent a couple hours gardening last week and noticed a cough from my lungs like I had congestion, but I didn't have a cold. I'm seeing my reg. doctor tomorrow and will be asking her about my achy joints which the Onc. believes is due to estrogen - hormone issues, not Treanda. but it was Treanda/chemo that threw me into menapouse, thus estrogen drop, etc.

Michele23
Posts: 168
Joined: Mar 2011

Hi Janelle,My dr "did not" want to stop my Treanda at 4 rounds.He told me mine would most likely just return if I didn't complete {6}rounds.This why I"m really bummed out.My scans were clear Apr.16th Spent 2 hrs here last night trying to find that lung report.I will keep looking.I also have a cough.Was just waiting to report that to dr.Already have COPD but didn't start this cough till Treanda.Oh dear what did we get ourselves into???????Didn't need more problems...who knew?Hugs,Michele

CountryGal7557
Posts: 165
Joined: Feb 2011

I was laying awake thinking how my Onc was too quick to suggest Treanda as the treatment plan for my situation, when maybe Rituxan alone should have been used. 20/20 hindsight, but then who knows. it's all a crap shoot isn't it.

I saw my 85 year old dad today and he is healthier than his 53 year old daughter! he kept complaining about his knee. I thought how lucky to have only one ache! ha! ;)

Stay strong everyone!
love
janelle

Michele23
Posts: 168
Joined: Mar 2011

If we only we knew before the fact the things we learn after.Keep faith all,Michele

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

Hi - Michele, hadn't heard before about Treanda affecting the lung lining - so far, no cough for me. But since several of you report it as a symptom, I'll be on the lookout. I'm so happy for you both to have reached remission - hope I can be as fortunate. I keep thinking I haven't because my tumor started at 15 cm and it's harder to penetrate that size but seems yours was large too, Michele. Did Treanda remove it completely?

Janelle - we do have the exact same type of NHL, you, Michele and I. WISH I were your ages of 50 - 58, but you must add 10 years to that for me - I'm 68 and counting! Been blessed with good skin genes in my family, but a year of chemo has certainly dried out my skin. Hope going off chemo will return some moisture to it - don't want to wrinkle yet! Let's keep in touch.

Joanie - thanks for your prayers and wishes - yes, my Mother's Day was lovely and glad yours was too. I know you're counting down the days til summer vacation! I remember that time as a teacher and know how important those summer days were! Fondly, Fran

CountryGal7557
Posts: 165
Joined: Feb 2011

Fran, It was hard at first to put my personal journey on the internet, but I was getting too many questions and just got physically tired answering over and over again that I will be ok and what NHL is. Family and friends felt the blog was so helpful to keep updated on my health, but to also learn about NHL. We are "living with lymphoma" now, not dying from it like the message was only a few years ago. Treanda+Rituxan is that reason, but like we're learning, there are late effects to now deal with to have a quality life. You, Michele and I have the same NHL, Follicular, stage 4, B cell, Indolent and I believe we are all close in age. 50-59. so maybe our diet and up-bringing were the same vs someone much older than us.

I hope you have reached remission! I reached it after 4 treatments and it sounds like Michele may have reached it after 5 and not need the last one.
Love
janelle

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

I am so glad to see you posting. I am praying for your new scan showing you in remission. I am glad that the change in dose makes you feel somewhat better. Happy Mother's Daty this weekend. I hope you are surrounded by your loved ones. Jennifer is going to church with us. Todd and family like to go to their own church and then we will all get together. Let us know your results. I will be vigilent in praying. Love Joanie

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