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Treanda side effects

Michele23
Posts: 167
Joined: Mar 2011

Has anyone here done Treanda/Rituxan and had alot of side effects?Need some input.Just finished my 4th round of 6.Thinking most of the side effects are from the Treanda as I,ve done years of Rituxan with mild side effects.Side effects so far- 8 day headache in temple left side behind eye,severe itching of ears, back,leg & left knee pain swelling ,hair thinning,rash most back,pain at spleen area.Not at all a whiny wimpy person pretty tough all around as I'm an old pro at treatments but these are pushing me to my limits.My knees started acting up on the first treatment and they stopped gave me something and pain subsided,thus they called this a side effect??Second was mostly itching ears and back as they added Dexamethasone.Third round left knee swelled first day but was gone by second day of treatment.After returning home knee got worse over time filling with fluid so called onc set me up for and MRI but ended up in such pain had to go to ER and get Knee tapped.This was Fri by Monday onc had report of Mri and said I needed to see an orthopedic dr which I did ,1 week later.He tapped the knee again gave me a cordisone shot and said I needed to see my onc.this was 10 days!Interesting huh?O.k. so I just had Pet/Ct ,Brain MRI and knee scan done last week.Had my dr visit .Treatments are working well, spleen had mild uptake which was new.,knee scan was "not present",and brain scan showed minimal T2 white matter which was new but, not discussed.Did not receive these reports until I was at treatment.Onc stated if side effects persist by 5th round he will stop treatments.Now he already said he felt this would return if 6 treatments were not completed so any help here would be appreciated.Do the side effects get easier?Will they go away after treatment stops?Anyone have any of this happen?Thank for for any help.Blessings,Michele DX95FNHL3

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

Dang Michele,
Sounds like you have been put through the ringer! I can't help you with any answers on the Treanda, but hopefully Fran will see this and help you out. If memory serves me right, she has taken it. My thoughts and prayers are with you friend and I hope things will get better soon...your dealing with so much! My few aches and pains pale in comparison! Take care and please keep us posted. Much love...Sue (FNHL-2-3A-6/10)

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

Hi Michele, I thought of Fran also when I read your post. I have just finished my 7th rituxin . Fran ssems to talk about being very tired and having excessive diarrea. You have been through a horrible ordeal. My prayers are with you and your family. Take care Joanie

CountryGal7557
Posts: 165
Joined: Feb 2011

Hi Michelle,
From my research Treanda is the latest Chemo Discovery that is to 'kick butt' when given along with Rituxan, and there is not much known about late effects from Treanda. At my 4-month checkup, Onc. said "I've never heard of that" then at my 8 month checkup two weeks ago, he took me more seriously and had blood work done for Lupus and Rhuematoid Arthritis. The results are negative for arthritis, but I haven't heard the results for lupus yet. After listening to my complaints (and there were many!!) he stated, the achy joints could also be from hormone's out of wack as the chemo thru me into menapous hard and fast; he said my symptoms sound like his breast cancer patients after being on hormone inhibitor drugs, so I also have an apt with my reg. physician, not sure she'll be able to help though.

You have a bad case of side affects though. It sounds like the treatments are working, so if you want to try and reach remission, you'll have to finish all 6 rounds I suppose. Since you already have the achy joints, itching; you might as well finish the treatments because these side affects don't appear to be going away for me anyway and I had 4 rounds of Treanda/Rituxan - was in remission after the 4th. 3 months later I had the achy joints. they didn't appear during like you, but I still believe it's from Treanda. I take 2 Aleve daily & on bad days the Onc. stated I could take up to 2 more - but drink plenty of water to keep the kidneys in good shape! ha!

Just curious, why did the Onc. start Treanda for you? Was Rituxan alone not working?
Keep us posted!
Janelle
DX Mar10 FNHL4A

CountryGal7557
Posts: 165
Joined: Feb 2011

Michele,

The company that distributes Treanda, Cephalon, has some information out there. It was approved March 2008 for CLL. TREANDA received its second approval in October 2008 for the treatment of indolent B-cell non-Hodgkin’s lymphoma (NHL)that has progressed during or within six months of treatment.
Read more here for the listed side-affects (including headache and rash)
http://www.cephalon.com/Documents/pdfs/TREANDA_Fact_Sheet.pdf

Hope this helps.
Janelle

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

Hi Janelle,
Thanks for sharing this...I am not taking Treanda, but this will be good info to save in my favorites in case I ever do end up on it. I'm hoping as each day passes we will see more new and improved drugs to help us fight this cancer battle. Hope you have a good week.
Love...Sue (FNHL-2-3A-6/10)

Michele23
Posts: 167
Joined: Mar 2011

Thanks Janelle.Just trying to cover all the basis as this drug is so new.Rituxan alone stopped working for me.It in itself was an easy drug for me thats why I know all this is Treanda.Had hoped others had the same effects so I had somewhere to go with all this.Am concerned about the rash/itching most of the rest I think I can deal with.Take care,Michele DX95 FNHL3

CountryGal7557
Posts: 165
Joined: Feb 2011

Michele, have you submitted a post in the Discussion Boards category for Long-Term Effects of Treatment (towards bottom of list)? I've seen a number of posts there for the achy joints, so maybe someone else is posting in that category could help answer the itch/rash.
I'll keep researching and if find something I'll send you an email or post a new thread here.
Keep in touch
Janelle

Michele23
Posts: 167
Joined: Mar 2011

I'll see if I can find that.Your the best.Michele DX95FNHL3

Booshi
Posts: 4
Joined: Aug 2014

It has been several years for Michelle who posted and I am wondering how you are feeling now several years later.  Is it effecttve just to take Rituxan? Is it imperative to add the Treanda? I am supposed to start the combo soon and would like some input as the doctors are saying either is fine. So if either is fine then why add the Treanda?

illead's picture
illead
Posts: 596
Joined: Aug 2012

My husband was on Rit/ Bendamustine (treanda) for Mantle Cell Lymphoma.  He had 8 infusions.  Just in my own layman's terms, this is how I explain it, which I know is not exactly right.  The cancer cells, at least in MCL have a sign on them that says "don't eat me"  The rituxan is given first to cover the sign so that when the actual poison, in your case Treanda, goes in, it kills the cancer cell.  The reason most are on maintenance after the actual chemo is so that if any new cancer cells pop up it will cover the sign and your immune system will hopefully take over whatever the poison did.  My husband had very little side effects with either.  Sometimes a dull headache and just a little more tired on around day 4 after the infusion.  I am not buying that either is fine..  They work together  The front soldier situates the enemy and the back soldier fights the battle.   Think your docs need to do some homework.  Of course you didn't say what you are fighting.

My best,

Becky

BB_guy_2014's picture
BB_guy_2014
Posts: 4
Joined: Oct 2014

Hi Michele23,

I can't speak for Treana, but am about to embark on treatments with Rituxan with Treanda because the RCHOP does not appear to be working effectively after 3 treatments (I have NHL mantle cell lymphona with an enlarged spleen). Spleen has reduced somewhat, but not to it's original size.

I have strong allergic reactions to the Rituxan (which I'm told is very unusual), so the introduction of Treanda with reduced Rituxan over two days is hoped to help. My allergic reaction has been one or more sessions of intense chills for 30 minutes while the drug is being IVed.

I'll let you know how it goes, since this is to start next Tuesday.

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1319
Joined: May 2012

BB,

You need to speak directly with Becky (illead) regarding this . She is the most knowledgable person here regarding the latest developments pertaining to MCL.  The earlier sections of this thread are now significantly out of date (over three years old, which is a century in cancer drug development). 

I suppose you were getting Benadryl prior to the Rituxan ?  Significant chills are fairly common when receiving it, even for persons who are NOT allergic to it.  I took it for six months, at a fairly fast flow rate, and I always had serious chills (I had to be under several blankets, and my teeth where chattering), but no one ever classified me as "allergic."  I know my chills lasted at least 30 minutes out of my eight hour infusion sessions for r-abvd. Bona fide allergic reaction to rituxan usually involves respritory difficulties.

Great luck to you regarding Tuesday and the new therapy you are beginning,

max

http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx#.VEPOLu8tDIU

illead's picture
illead
Posts: 596
Joined: Aug 2012

As Max said, I do know a lot about MCL  My husband was diagnosed in '11 at Stage 4.  His spleen was also extremely enlarged and his blood counts very low.  His bone marrow was 90% cancer.  He was treated with Rituxan/Treanda.  I don't understand why they only started you on rituxan to begin with.  Rituxan works as a marker of the cancer cells, then Treanda (the actual chemo is given to kill the marked cancer cells)  That is all laymen's terms of course and it is much more involved than that.  My husband also had extreme chills during his first chemo.  At first they thought it was the Rituxan, but correctly decided it was a symptom of the disease, which he had already been suffering with for awhile.  After that first ordeal, he continued with the regimen of Rit/ Treanda and had no more issues.  He steadily improved and 6 months later was in remission.  He also had no side effects.  Mantle Cell is a very difficult lymphoma and one that needs to be treated aggressively.  It is rare and many doctors have not even heard of it or maybe confused about exactly how to treat it.  I am sure your oncologist knows what he is doing but if it were me and my husband, we would make sure our doctor has consulted with other doctors who have treated MCL.  Maybe a university hospital or large cancer center.  Do some research  yourself.  Google  MantleCell Rituxan/Bendamustine (which is Treanda).  It just doesn't sound right to me that they would give you only Rituxan.  I don't mean to sound negative about your doctor, there must be a reason, but I am concerned.  Please feel free to ask me any questions, I monitor this forum through the day.  You can also personal message me by clicking on our picture and following the link.  No emails are exchanged.  There is going to be a webinar on the latest about MCL through the Lymphoma Society on Nov. 6  Dr Brad Kahl is the guest speaker.  He is a front runner in research and knowledge of MCL.  You can find out more by going to the Lymphoma Research Foundation or I can give you more info if you are interested.    I sure hope my information is a help to you and not confusing.  I just read my post before yours which I wrote a few weeks ago, which may also be helpful.

My very best to you, Becky

BB_guy_2014's picture
BB_guy_2014
Posts: 4
Joined: Oct 2014

Hi Becky,

Thanks also for your rapid response. I was started in the RCHOP regimen, so got the other 4 drugs (Cyclophosphamide / Hydoxydaunorubicin (doxorubicin) / Oncovin (vincristine) / Prednisone) after the Rituxan. I had no problems with Cyclophosphamide / Hydoxydaunorubicin / Oncovin, but 4 days of Prednisone (oral) is a challenge. It chases away sleep at night for me, and leaves me feeling antsy (like 10 cups of coffee) for the four days while taking it.

Thanks for the notice about Dr. Kahl's presentation - I'll be sure & check out the site.

I look forward (well, somewhat) to the Treanda/Rituxan regimen, as I have frequent skin flashes - only once did I have the "night sweats," and that wasn't at night. But sporadically various parts of my body (arms, legs, head & neck) turn pink like a sunburn and get hot & prickly. This lasts 15-20 minutes. During this time my blood temp does not go feverish (my oncologist would have me report to the ER with a fever of 100.5 or above).

Also, I've added 2-3 extra meals per day, but don't seem to be able to regain the weight I lost initially. Since even when not experiencing the skin flashes my skin often feels warmer than normal, I'm sure that I'm burning off all the extra calories that I'm consuming. The enlarged spleen llimits how much I can eat. So I'm constantly feeling weak.

Note that in March-April before all this, I was running and doing many physical activities. I considered myself a lifelong athelete.

 

Another thing - when first diagnosed with MCL, my wife & I checked into the Gerson Clinic for 2 weeks, focusing on nutrition: alternative medicine. After a few days of blood work the Drs. there asked for my approval to bring in a consultant who had experience with several past MCL patients. After a week with some natural treatments he recommended my returning home for chemo. But we did gain a leg up on nutrition. We're still juicing.

However, I beefed up my supplements with daily megadoses of anti-oxidants (C, D3, etc). This might represent a problem as I recently received a forwarded email originally from a homeopathic Dr. who suggested thatt such might interfere with the chemo. So I've temporarily stopped the high doses of anti-oxidants in anticipation of the chemo starting tomorrow. The thought is that I need to let the chemo do it's deadly work without a buffer.

 

I hope I wasn't rambling on too much, and that this was useful. Perhaps it will be for the next person joining this forum. I'll add more as available.

Regards,

Alan

GKH
Posts: 356
Joined: Jul 2012

please be very cautious with vitamins, especially megadoses. There is strong evidence that in some cases supplements, especially pill or liquid synthetic ones, may actually aggravate or even cause some forms of cancer. Max - green tea is not an antioxidant. It is a beverage that contains antioxidant, primarily vitamin K, which can cause blood to clot. The synthetic form is called Beta Carotene. Green tea is very high in caffeine too. Antioxidants are in most fresh foods And that is the best source for them. It appears to be the concentrated and purified forms in supplements that cause problems. One antioxidant pill may contain several hundred times as much of a given antioxidant compound and probably from a synthetic source, as say an orange or a cup of tea. More is not necessarily better. Plus food supplements are unregulated and not inspected. Who knows what is really in them?

 

"these claims have not been investigated by the FDA. This product is not meant to diagnose, treat or cure any disease or other medical condition". This statement, or something like it, always comes right after the outrageous product claims. Hmmmm. Wonder why?

BB_guy_2014's picture
BB_guy_2014
Posts: 4
Joined: Oct 2014

Hi Max,

(Duh - I didn't check the date on the original post) Thanks for your quick response. I'll reply to Becky after this.

Yes, I was given Benadryl just before the Rituxan, and my oncologist gave me progressively more for the 2nd & 3rd treatments (because of my reactions). The first time I thought I was going to break my teeth the chills were so intense. I actually had two reactions that time - the first was shakes w/o chills for 30 minutes accompanied by darkening of my vision (until they stopped the IV), followed an hour later after restarting the IV by the chills (w/shakes) for 30 minutes.

Interesting that my oncologist thought the chills were rare, and that my reaction was unusual.

You mentioned r-abvd - is that a rituxan regimen?

Thanks, Alan

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1319
Joined: May 2012

Alan,

I'm glad you and your doc seem to be sorting out your drug issues/side-effects.

"ABVD" is the standard first line treatment for almost all HODGKINS type lymphomas. It contains two of the same (or chemically identical) drugs used in CHOP and EPOCH, which are mainstay Non-Hodgkins drugs.  ABVD contains no Prednisone, and no steroids at all. Prednisone is usually described as miserable, and many patients get their doses reduced if the doc approves.

 The "R" stands for Rituxan.  Some ABVD patients get Rituxan, and some do not; I believe it depends on the strain of the disease, and the presence or absence of the CD-20 cancer cell (Rituxan primarily kills the CD-20 cells).  I DID receive Rituxan at each infusion.

I would ask your doc about the megadosing of antioxidants. Some doctors recommend against that, while some don't seem to care. I myself drank gallons of green tea throughout treatment, and my meds worked great.  However, there is a mixed literature regarding whether or not green tea and other antioxidants are wise on chemo.  My feeling is that it is healthy and OK, but I have no medical training.

Keep in touch with Becky and all of ius here -- everyone is pulling for you !

max

illead's picture
illead
Posts: 596
Joined: Aug 2012

     I sure misspoke in my last answer, maybe temporary alzheimers Wink.  Why I thought you were only getting rituxan, I have no clue.  At least your doc has not given up on rituxan.  I know night sweats are a symptom of most lymphomas.  I am not sure about chills but I think along with fever, those are symptoms also.  That is what Bill had when he got really bad before the chemo, so we knew that his was not a reaction to treanda or rituxan.  Sure hope you do well tomorrow and will be able to continue with the treanda/rit and that you won't have further problems.  Sounds like your doctor is up to speed and you also have done research.  Sorry for my shooting from the hip answer.  One thing that I did not tell you is that Bill had a relapse in Feb. after 2 years in remission.  It was a complete shock as he was feeling great but it was caught early.  You can read about it on Our Page by clicking on our picture.  Long story short, he was sent to Stanford and his doctor there was one of the researchers, along with Dr. Kahl and others, of a new target drug Ibrutinib that had just been taken off of clinical trials for relapsed MCL only.  He is now on the drug and will be for the rest of his life.  His CT scan 3 months after starting the drug showed the cluster of lymph nodes almost gone.  He just had his second scan this morning so we find out next week  what those results are.  So my point is, there is good news for MCL and they are continually researching it.  I think you will enjoy Dr. Kahl's webinar. 

     We get going on the subject of prednizone on this forum.  We all have stories Laughing.  When Bill was still pretty weak, a couple friends came over to do some things to help and Bill asked them to move his wood pile.  It was a hot summer day and when they finally finished, he asked them if they could move it over a foot and they did!  I was so shocked, I just let it happen.  Now that I know it was the prednizone, I'm still apologizing 3 years later, and Bill doesn't even remember itEmbarassed.

     Bill was also taking all kinds of supplements and we never listed them, thinking it wasn't important but we found out that some can interfere with the effectiveness of the chemo.  It's not that the doctors are pooh poohing them, there is a legitimate reason.  With the Ibrutinib the Stanford doctor took him off of fish oil and Inositol an immune builder, so he just quit most everything.  He always says "you can't take a knife to a gunfight."  We'll be thinking about you tomorrow and we are happy to have you join us on the forum.  Hang in there.

Our best to you and your family, Becky

BB_guy_2014's picture
BB_guy_2014
Posts: 4
Joined: Oct 2014

Hi All,

I hope you're all doing well.

I was started on the new chemo regimen last Tuesday – Treanda with Rituxan. I got through the first all-day session ok, but a little while after completion, I had an adverse reaction - the chills. This was unusual in that it started afterwards, and lasted a whole hour.

My oncologist was alarmed, and concluded that my chemical port must have harbored a lingering infection. He contacted my surgeon, and I was wheeled to the nearby surgeon's office (that was very convenient) who removed the port & catheter in his office within the hour. Then on their direction I was driven by my wife to the local hospital and admitted to ER. I was given antibiotics, 2 chest x-rays, and blood & platelet tranfusions. I was released on Friday afternoon.

It's anticipated that I will resume the treatments next week.

The Treanda was administered first, so it might point to my chills resulting from the Rituxan - which is what you've been telling me.

Alan

illead's picture
illead
Posts: 596
Joined: Aug 2012

So glad to hear from you.  I hope the chills are just a symptom of lymphoma, which I think they are but I am no expert.  I hope the change to Treanda first will work, I just thought Rituxan was always given first, so the chemo can work in the most effective way.  Thinking of you and hoping for success, please let us know how things are going,  I for one am very interested.

Keeping you in our thoughts and prayers,  Becky & Bill

Rocquie's picture
Rocquie
Posts: 565
Joined: Mar 2013

Alan,

As I understand it, chills are a common side effect of Rituxan--during the infusion. Usually, the infusion will be stopped and the chills resolve. Medicines may be given and the infusion restarted at a slower rate. Chills which occur later are more indicative of bacterial infection, as you have learned. It sounds like you have a very good doctor who correctly diagnosed the problem.

I also had an infection in my port and had to have it removed. Two weeks later, I got another one and haven't had any problems with it. And that was two years ago. 

I feel very cold during my Rituxan infusions, but not the shaking chills I've seen some people get. I just dress very warmly and I even take my fleece-lined house shoes for my feet. Also I get at least 2 of the warm blankets provided. 

I hope your next infusion goes smoothly. Let us know?

Hugs,

Rocquie

 

onlytoday's picture
onlytoday
Posts: 601
Joined: Jun 2010

Hi,

I had Rituxan (4 rounds) in 2010.  Relapsed in 2012 and had 6 rounds of Treanda with Ofatumumab.  My Onc didn't want me to have Rituxan as I had an allergic reaction after my last infusion of it. (ER/throat involvement, rash, awful... and hospital stay).  The Treanda was hard.  I had lots of benedryl/steroids before and during infusions.  Even with anti nausea drugs I felt sick, lots of bad body ache for about a week. I remember not wanting to get out of bed, it hurt. That and the fatigue gradually left.  After the fact I still had some aching but I do have arthritis and post hepatic neuralgia already so I couldn't be sure what was what.  I did not experience any noticible rashes.  FYI: Ofatumumab acts very similarly to Rituxan.

Finished my tx in October 2012.  Still in Remission!!  So I like it!  Best of luck, I hope you get the same great end results!

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