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Side effects-Rituxan?

paulenarae
Posts: 3
Joined: Sep 2008

I just joined but am not new to NHL. I was Dx in 2005 with follicular NHL stage IVB. I am currently in remission after CVP+R. I am receiving maintenance Rituxan (for almost 3 years now)and my oncologist said that I will have Rituxan until the cancer relapses. I am told that this is a pretty benign treatment as far as side effects go...but I have had a difficult and painful time at best. To be honest, I have never been in so much pain in all my life. My joints and tendons and lower back pain along with fatigue are unbearable. My Oncologist says that he has never heard of such effects being so severe and that in all the patients he has ever treated...this isn't something he has ever heard of or dealt with concerning Rituxan.

I am desperate to find relief of the pain. The psychological effects of long-term pain has changed who I once was. I find myself begging to anyone who will listen to help me. Has anyone else ever been through this? I don't know what else to do.

BradPelzek's picture
BradPelzek
Posts: 2
Joined: Mar 2007

Hello,
I had rituxan treatment for NHL large b-cell lymphoma and am in remission.
My doctor continued to prescribe rituxan after remission and I decided to
get a second and third opinion about this approach. The other two doctors
both said that rituxan should not be used as a maintenance therapy if you
are in remission, and that side effects are really not known for this drug.
I had a severe reaction the first time I took rituxan and went into severe
rigors so I did not especially enjoy taking it, but it obviously helped battle
the cancer.
So after my alternative opinions I told my oncologist that I would decline
anymore rituxan since its benefits are not proven at all in long term maintenance.
I don't know the details of your cancer but mine was a very aggressive type
and my doctor was siding on the safe side with more rituxan.
But back to your aches and pains-I had some of the same feelings with severe
fatigue, joint soreness and just a lack of energy. That was one of the
reasons I quit rituxan, but I really didn't know if rituxan caused those
symptoms or if my body was just exhausted from heavy chemotherapy, radiation,
mental and physical stress, etc.
Everyones' case is different I guess in terms of what your doctors'
reasons are. My doctor said I was depressed, which I was, and that depression
is actually physically painful(joint pain, muscle ache).
I don't know if your cancer is more indolent than aggressive which might explain
the rituxan maintenance. I don't know if you have had a second opinion but it
certainly helped to give me some options and perspective on treatment.

Hopefully all goes well and I helped in some way.
Take care and God bless.

Brad Pelzek

paulenarae
Posts: 3
Joined: Sep 2008

First, Thank you for responding. It was the second opinion from the folks at Fred Hutchinson Cancer Center (after I was in remission) that made the recommendation to have it until relapse. I do have indolent Follicular Lymphoma. The biggest mistake I ever made was not getting a second opinion BEFORE starting treatment...I had no idea that I had options. Maybe I still would have chosen to go with this but I feel cheated from making choices that were mine to make. When I was first dx I asked my doctor what my treatment would be, he said "steroids"...when I went to the hospital for my first treatment the pharmacist came in to tell me about all the side effects of CVP+Rituxan before administering it. Both my husband and I were taken aback because we both had heard him say 'steroids', he never said chemotherapy.

I am going to a pain specialist tomorrow with hopes that I can be helped with something other than morphine as that is what my oncologist has me on now. I have lost much of my independence in driving and mobility around the house. We have a two story house and it is hard to get up and down the stairs and driving is now out of my reach. It's even difficult to type for longer than a few minutes but this is my vehicle to reach others. It is hard to live in the moment and enjoy remission when the pain is so present everyday. I have hope it is just fractured.

Thanks again,
Paulena

winthefight's picture
winthefight
Posts: 162
Joined: Dec 2007

Hi Paulena,

I was dx with NHL Stage 4b...large B cell, T cell enriched. I have been on Rituxin for almost a year. From Sept-Feb my treatment was R-CHOP. Since April I have been on RICE. I have had absolutely no side effects from Rituxin. I know two other NHL patients who are not experiencing any side effects from Rituxin either. You mentioned steriods earlier. Steroids were also a part of the treatment process. When I began my treatment I was pretty sick. My body stopped producing blood. My bones were impacted with Lymphoma. I was a reck. The first thing my Onc did was give me a treatment of steriods. This first treatment made me feel sooooo much better.

A part of the R-CHOP treatment is Predisone which is a steroid. Predisone is taken for determined amount of days during or after each trmt.

I can understand the joint pain and am happy you are seeking a pain specialist. When I had joint pain last year, my Oncol prescribed Celebrex which made a big difference! I have not had the need to use Celebrex in months, but when I used it...it worked!

I hope this information helps you. Be blessed.

phbav
Posts: 1
Joined: Mar 2003

Hi I have indolent follicular NHL stage 4 grade 2 and was also given CVP w/Rituxan. I now do the Rituxan as maintenance every three months. I am also in pain but just figured 59 years of abusing this body is what is to be expected. My lower back is terrible and I have had cortizone shots and may need surgery. I believe this is unrelated. About the second opinion....I did get one from Dana Farber and am comfortable with the CVP-R vs. CHOP-R. It is less toxic and has the same results. It is widely used in Europe and I am in clinical remission. I think we can be assured that this disease is going to come back and when it does they will likely use the CHOP-R. I did not loose my hair with CVP-R. I had the most difficulty with the prednisone....I was literally awake for a couple of weeks the first go round and had to get some very potent sleeping aids to finally enable me to get to sleep. Re-cap: second opinion would have made you feel better but I did get two and I think you took the right course. Prednisone is the steroids and when off that you do feel more pain. Good luck with the pain management and with the cancer...stay mentally tough!!

dixie1
Posts: 7
Joined: Oct 2006

Paulenarae: I also have NHL, had it for 8 years. I have also had severe pain due to Rituxin and experienced the same pain you have. It's horrible and I have begged God to go ahead a take me when this happens. They should be pre-medicating you with Tylenal, Benadryl and I think steroids before they give you the Rituxin to help wiht the side effects. I usually have them give me Dilaudid for this very severe pain. Also, I have to be admitted to the hospital every time I take the Rituxin so they can put it in me very slowly at a rate of "25" flow on machine, otherwise I will experience that severe pain. It takes about 2 days to get the Rituxin in me. After the Rituxin they then do the rest of the chemo. If you can get your doctor to use the slowest rate of flow of the Rituxin into your system and pre-medicate you with the drugs I mentioned, I think you would be alright. There is no reason why he can't do this. But remember, ask for the big drugs for the severe pain, then stop the drugs when you finish the Rituxin. Hope this information helps you, some doctors are just not informed enough in treating a patient using Rituxin. There is no reason you should have to suffer like this.

If your doctor has any questions about this pre-treatment and slow flow of Rituxin, ask him to check with MD Anderson in Houston, they see a lot of this. He should ask to speak with Dr. Barbara Pro, my oncologist. Phone number is: 713-791-2121, ask for the Lymphoma/Myeloma Clinic.

Donna D
Posts: 3
Joined: Sep 2008

Hi I am new today saw your concern I just wanted to say I too am having this maintenance treatment and I am called in remission now after 1 1/2 years of treatments.I had CHOP PLUS RITUXAN FOR 8 TIMES THEN NOW I HAVE ONLY THE RITUXAN AND IG IV FOR ME I HAVE DONE WELL SO FAR BUT I DID SEE A LYMPHOMIA DR. IN ST. LOUIS MISS. THE 10TH OF SEPT. 08 SHE TOLD ME IT WAS NOT HER ADVICE TO GIVE THE RITUXAN MORE THAN 2 YEARS AFTER THE CHEMO. For me that will mean one more year.Please keep in touch .Have you ask other drs. for advice?

LDD12
Posts: 4
Joined: Feb 2006

I was reading your comment, and i had the same treatment. I was diagnosed w/An autoimmune disease about 10 years ago and have been receiving IV IG antibody replacement therpy every 28 days. Then in July 2004, i was dioagnosed w/Cancer. I too have many side effects because of the on going combination of the differnt IV infusions, but I just keep on praying.
Tonight, is the first timer i have actually reached out to chat.
We can all give/receive courage and wisdom from one another.
Peace,
Lynn

Donna D
Posts: 3
Joined: Sep 2008

Thank you for your response. I am trying to write my story for others about my journey with cancer.I had no idea it would be so painful. I am having to work on it a little then back off.I want to help others get treatment sooner as I was almost dead before they found my cancer. I am struggling with depression .I have lots of family pressers can't talk about but I keep the Faith!! I have IVIG AND RITUXION NOW. Thank you Donna D

LDD12
Posts: 4
Joined: Feb 2006

Donna,
i understand, and i encourage you to honor yourself and do what feels comfortable for you. I will pray for you, and that god helps to lesson your pressures.
Peace,
Lyn

SuzieQZ
Posts: 3
Joined: Feb 2004

I have just passed 5 yrs remission Oct 22nd....I had CHOP and Rituxan, plus a stem cell transplant. It was at a well known Cancer Center.

My daughter does cancer research and at the time of my treatments she was working for the Co that developed Rituxan.

I am continuing maintenance treatments and will for the rest of my life. No side effects since my first 2 treatment. My side effects were as a result of my extremely high white count.

I am grateful to have the option of maintenance....I think that's what keeps me sane.

Good Luck in whatever you decide.

Val.CMZ
Posts: 5
Joined: Sep 2009

I have been trying to research length of time Rituxan can be used, and have only read up to 2 yrs. I have been on it since 2004, 4 weekly treatments every six months. I have never had a problem with it - no side effects at all. Last week my dr. talked of stopping treatments and just doing scans to see how I do. We'll talk about it next month. I'm really apprehensive about it. Now I feel like I'm doing something proactive and stopping scares me. You said you would be on maintenance for the rest of your life. What has your dr. said about it? I'd like some information before I go back to him. Thanks.

Val

LDD12
Posts: 4
Joined: Feb 2006

Hi,
I too have been getting rituxan for almost 3 years now. I am beginning to feeel different side effects and such. at first, i thought it was due to my "autoimune difeciancy, but we now realize it is from the Rituxan......This was my docs concern, as i already had a Autoimmune disease and was receiving IVIG antibody replacement every 28 days. I am still gettting that, and now since i was diagnosed in 2004, with NHL satge 4, i too am experiencing some of what you are!
This drug has side efffects, and they are doing studies to rack reaCTIONS AND SUCH. So, i strongly feel that one must do what is needed, to improve ones quality of life
Please know, that you are not alone, and i too suffer w/so many side effectsa and such.
Peace,
Lynn

scrummy3
Posts: 10
Joined: Oct 2008

Hi,
I was DX'd with diffuse large B-cell nHL, w/splenic involvement and T-cell rich in Aug 2004. Did 8 rounds of CHOP-R. Had strong reaction to Rituxan on first infusion - the "shake and bakes" - low fever, rigors, nausea, etc. Lasted under 5 minutes and was minoir compared to the B-cell symptoms I was having before the treatment. They backed off the infusion, treated the symptoms and finished the dosage. I felt so much better as my fevers disappeared overnight (Prednisone, no doubt) that I didn't think much of the reaction. Did not have any reaction in the remaining seven treatments. I had bone pain (minor) during teatment, but I attributed it to the Neulasta.
After last infusion I was told I had a near complete response - the spleen and all nodes except the largest two had returned to normal size. Been doing well until last June when some nodes increased and showed hot on a PET. A biopsy at the time showed a normal reactive node, but 3-4 months later, nothing has changed so they are going in for another biopsy. Feeling great (no B-cell symptoms), so don't know where I am headed.
Always wondered if I should have had more treatment but hearing some of your stories, perhaps I am lucky. Keep well.

---
JB

Val.CMZ
Posts: 5
Joined: Sep 2009

I just joined today after researching rituxan usage. I was diagnosed in 1997 with stage 4 NHL. Had CHOP therapy but only stayed in remission for 15 months. I also have RA and the drs. believe the starting of enbryl caused the relapse. I have been receiving rituxan maintenance since 2004 - 4 weekly treatments every 6 months. At my last treatment my dr. brought up going off the rituxan and after scans just watch and see what happens. I've only heard of treatment of 2 yrs. in any research I've done. But have always felt like I was doing something proactive and keeping it all under control. Now I'm a bit scared of stopping - like, why mess with what's working? Actually I have never any any symptoms at all from rituxan, not even the first treatment. So as far as worrying about more treatments, I wouldn't. I feel bad for those with the negative reactions, but my story is different. No problems at all. Only time I experienced the painful reactions I've been reading about was during iron transfusions. Had a terrible time with that.

elizabeth c
Posts: 2
Joined: Sep 2008

I was diagnosed w/ folicular lymphoma last March and had three months of chemo (CHOPS) and was put on the rutuxin as well. I had the rutuxin in March and recently I have been having a lot of the symptoms you mentionjed. Joint pain and fatigue are the biggest problem for me and eye twitching, tingles in my fingers as well as swollen fingers are some other milder but def. noticable symptoms as well. I have an appointment w/ my oncologist this month so I will def ask about this becuase I have to have the rutuxin every 6 months for 2 years. Maybe there are some meds he can prescribe, even though ZI hate taking them. Let me know how ytou feel.

Elizabeth

Evaline
Posts: 9
Joined: Aug 2008

It seems that everyone else has had Chop for NHL. I have only had the Rituxan, with steroid,
and Tylenol. I had stage 3, one in my neck and one behind my stomach. After 4 treatments, the scan showed I was in remission. Will take my last 2 year maintenance treatment in June 2009. I didn't realize that Rituxan made joints hurt. I hurt in my knees. But it is better than knowing I have the Cancer. I also have arthritis in my hands, so I attriputed the pain in my knees to the arthritis. Has anyone else just had Rituxan for NHL or has everyone had Chop also? If so how long in remission? I sometimes tingle in my left had fingers. But, since I am doing my last treatment I guess I will have to go with it. Will have another scan in July -09.

How long does remission usually last?

Kristine 9.9.99
Posts: 4
Joined: May 2009

Hello Evaline~

I was diagnosed with stage IV indolent NHL on 9-09-1999. I am 45 years old. I did CVP (only) in 2002 and the PHASE III clinical trial for MyVax with Dr. Levy @ Stanford. I was in "remission" for about 4 years and then we started noticing growth in the CT scans. Last August I did my first Rituxan treatment (severe allergic reactions) and have been doing this one-day treatment every 3 months. I ALSO have experienced continued side effects in the days following each treatment. They seem to be getting worse, though. Right now I'm feeling nauseous, achey all over, extremely bloated, fatigued, and generally NOT WELL.
After reading all of these 'posts' I am encouraged...I'm not alone and I'm not imagining all of these symptoms. I was thinking it was all in my head, since my doctor presented Rituxan as practically 'symptom free'. My doctor wants to continue doing the Rituxan treatment every 3 months for another year.
How are you doing now?

dixie1
Posts: 7
Joined: Oct 2006

I received Rituxin in 2000 when it had only been in use for about 2 years. I had a severe reaction to this drug (fast drop in blood pressure, almost passed out, severe aching pain all over body, fever, it was horrible). Since then that particular doctor has had it happened to a few of his other patients, and has since then come up with some kind of cocktail to give his patients before giving the Rituxin. (Dr. Ping Chue in Houston, Texas) I now go to MD Anderson in Houston and still have severe reactions to Rituxin even with the pre- administrative drugs. What they have to do for me now is lower the input of the drug into my body, as slow as they can get it in. It takes to days to get the Rituxin in my and I have to be hospitalized. If I haven't had the Rituxin in a long period, I get the bad side effects again no matter how slow they give it to me. So they stop the input of the Rituxin and give me an injection of Dialudid (pain killer), then they restart me and everything goes great after that. Some doctors want to give you just Tylenol; it does'nt work for the kind of pain I will experience. I now have my oncologist make sure that the Dilaudid is available before they start the Rituxin. It's a great drug, but the side effects can be hell. Ask your doctor about this information. Good luck to you Kristine and bless you.

surfsup
Posts: 1
Joined: Nov 2009

My husband also received rituxin only for low grade NHL stage 4. He had a severe painful reaction with first dose that the Dr had never seen. Had to treat with Demerol. They were stumped. Several years have passed and he still has that severe unrelenting pain only resonsive to narcotics. Says it feels like severe bone pain. Again, the Dr has never seen this. They don't know how to treat this non-malignant long term pain. This is at Mayo clinic Jacksonville. Starting to feel we are all alone here. Has anyone else experienced this? How and where was your pain managed? Would like to talk, see or be referred to someone that has experience with this.

Evaline
Posts: 9
Joined: Aug 2008

I just finished my 2 year maintenance treatment of Rituxan. I have a Pet Scan Aug. 10, 2009. I have no other side effects other than I can't stand food. Can't seem to get my weight back up. Onc, said the Rituxan for me was a 50/50 chance. He mentioned a new treatment he is using on 2 of his patients now that is new that has a 93 percent rate. Can't remember the name of it, I still tire easily and have pain but, it could be arthritis. I will always wonder when it will return and I will have to go thru all of it again. Hopefully after awhile I will have more confidence. (I also had the steroid, Tylenol and benedryl)

Louise53
Posts: 5
Joined: Aug 2009

Evaline,
I have NHL Stage IV and I am having my first round of treatment with Rituxan only. I too wondered why I was just getting the Rituxan and not the R-CVP or R-Chop. The oncologist said I didn't need anything stronger right now. Did you have your scan in July and are you in remission? Did you have a CT or PET scan?

Louise53

Evaline
Posts: 9
Joined: Aug 2008

Louise,

As far as I can tell I am still in remission. I have my next PET scan Monday Aug. 10, 2009.
Of course I am always a little nervy when it gets time for those scans. Please keep posted how you are doing.

Evaline

tjo66's picture
tjo66
Posts: 29
Joined: Jul 2009

My dad is also receiving only Rituxan. He has had no side effects so far but has only had one treatment. The first treatment went exptremely well and is up for his second this thursday.

Johnvn
Posts: 4
Joined: Aug 2010

all symptoms mentioned are caused by Rituxan

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

I have had Chop, in remissionsince Sept(I hope) and have had two Rituxin treatments. My right eye twitches every month or so for a day. I didn't know it was a side effect:) I also had foliicular lymphoma B cell 3A. Good luck Elizabeth on this journey. With so many people with this evil lymohoma, a cure has to be around the corner.

rick8484
Posts: 3
Joined: Jun 2009

Hello,

I'm sorry to hear about your pain situation.
My wife is battling bone mets and has a lot of
pain. She does get some decent relief with a
product called Soothanol X2 from Northstar
Nutritionals.

It actually works well, better than some of
the high does pain killers her oncologist
gives her.

Give it a shot, just search for it online, it
will help you I believe.

best of luck to you

judyy
Posts: 19
Joined: Jun 2009

Hi I have DLBCL lymphoma in my bone marrow of my left hip. I did 8 CHOP treatments the first three with rituxan. I then developed the most painful lung problem. The doctors called it organizing pnenmonia.. I was in the hospital for 30 days. Very painful. I still 6 months later have pain on some breaths but the PET scan shows it getting better. SO I can not take rituxan That is a shame too, because it is so benefitul I think. I also have whole body pain now that my predisone is down to 5 mg a day. but I had fibromilga before the cancer so it is still here HA
Good luck I hope you find some relief.
Judy

rehab
Posts: 1
Joined: Jul 2009

I am 30 yrs old is acase of Diffuse large B cell lymphoma stage one on R-CHOP treatment I receive it every 21 days..I have two treatment till now after first one I had no symptoms apart from simple headach and myalgia but after second treatment which was ten days ago I get severe bloating and severe back pain not respond to simple pain killer so I have to take tradmol to relief this pain .My doctor said It is not usual to have such severe pain with rituxan..I dont know if it is related or no..any idea plz?any one has such severe pain which is constant and continuous all days since I received the treatment
and what about this sooo severe bloating..?
I am happy to find this chat
sorry for my inaccurate spilling Engliash language my third language

lindaintn's picture
lindaintn
Posts: 8
Joined: Jul 2009

Hello. I am new here. i am currently in my 3rd round of rituxin. my aches and pains come and go. A few days i feel like i have the flu, then a few good days. i do that for a few months and as time goes on it gets less and less. Sorry to hear your having such trouble with it on top of everything else

Louise53
Posts: 5
Joined: Aug 2009

Linda,
Have you had any other treatment besides Rituxan? I had my 3rd treatment yesterday and today I am getting burning pains off and on in the abdominal area where my lymphoma was found. I wonder if it is the Rituxan working on the tumors.
Louise

lindaintn's picture
lindaintn
Posts: 8
Joined: Jul 2009

Louise,
i am having my 4th round this morning. Off for 6 months, then my last round in Feb. My doctor has ordered 2 years of rituxan. When first DX i had CHOP-R. 1 1/2 years remission. rituxan is my only treatment. How often do you get PET/CAT scans? Last treatment my doctor gave me a mild pain med. it helped a bunch. Mine only lasts for 2-3 days. I get in that pain "fog" and after 2-3 days it usually lifts

tjo66's picture
tjo66
Posts: 29
Joined: Jul 2009

From the description on the papers the onco. gave my dad, burning sensation in cancer site may be due to the drug working on the cancer. If this is the case than the bright side of this is YOU KNOW IT"S WORKING! Take care, tjo

aoganes
Posts: 1
Joined: Nov 2009

Hi,

I had 6RCHOP ending january 2009 for DLBCL and follicular and 2 rounds of Rituximab every 3 months, Next round of Rituxan is in a week.

After second round of Rituximab I started to feel burning sensation in my neck where the biggest tumor was. No nodes. Just really anoying sensation of tingling on and off.

It is very stressful and really feels like cancer is fighting Rituxan in my neck

IS it an early indicator of relapse? Anybody had that experience.

I also had unexplained high LDH with no nodes found on CT scan.

TurnerIII
Posts: 4
Joined: Apr 2010

"World Without Cancer" written by G. Edward Griffin

http://www.bibliotecapleyades.net/archivos_pdf/world_withoutcancer.pdf

Please read this book... God Bless and Good Luck!

leon38
Posts: 3
Joined: Oct 2011

I am on my 2nd treatment now with rituxan only my doctor said 4 treatments and then do a scan to see if it worked in 4 weeks and then do treatments every 3 months if it worked. How have you done with it since this was posted in 2009.

TurnerIII
Posts: 4
Joined: Apr 2010

"World Without Cancer" written by G. Edward Griffin

http://www.bibliotecapleyades.net/archivos_pdf/world_withoutcancer.pdf

Please read this book... God Bless and Good Luck!

jerry1342
Posts: 1
Joined: Apr 2010

I was diagnosed in Sept 2009 with grade 1, stage 3 (neck and abdomen). After a 3 month wait and see, it was suggested that I start treatment. Choices were more wait and see, Rituxan or CHOP. I chose Rituxan with Chop in reserve as plan B. 8 weeks of Rituxan, tynenol, benydrol and a steroid and a month wait, my tumors had shrunk more than 50%. I am now in a 4 week aditional treatment with the above. I have experienced no real side effects from the chemicals that I know of. I do know that I am tired alot and have sleep problems a couple of days after, but that may be just emotional effects. My Dr. is talking a mainyenance program of a Rituxan infusion every 2 or 3 months.

leon38
Posts: 3
Joined: Oct 2011

How are you doing so far. Are you in remission now.

BAREFOOTEAGLE
Posts: 3
Joined: Aug 2010

I was diagnosed with StaGe IV NHL, follicular B, in Jan 2005. My first treatment with chop and Rituxan I had an antiflactic reaction and stopped breathing. My treatment continued in the hospital then in the clinic. I received Rituxan and chop for 1-1/2 years then Rituxan as a prophylaxis for another two years. I have been cancer free for 2 years. The drugs have diminished my quality of life to the point that I am very depressed and cannot find answers to my symptoms/effects of the drugs. I have been taking supplements and vitamins, changed my ph from acidic to alkaline and read everything I can about these drugs. I ache all-over especially in my lower back and hips (where I previously had bursitis). I have extreme exhaustion all the time, even though I have no trouble sleeping and get 8-9 hours sleep nightly. I used to get along on six hours and was a type "A" with energy to spare. I also gained 50 pounds from the steroids and am too tired to do exercises although I am active in cleaning and maintaining our home and pets. If anyone knows what to do about the exhaustion or what causes it I would sure appreciate knowing about it. I am grateful to be alive but would like to lead an active, productive energetic life again...

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi, I'm half way thru this treatment, although this is my second go around with cancer, I have a question, are your blood counts normal, esp. your red counts? I know it took almost a year and a half the first time around for my counts to get back in the "normal range". Hopefully your still getting blood drawn at your Onc. office. For me it was every three months. Vinny

BAREFOOTEAGLE
Posts: 3
Joined: Aug 2010

MY RED COUNT IS NOW NORMAL, ALTHO WHEN I WAS GETTING THE CHEMO IT WAS VERY LOW AND I GOT THE SHOTS TO RESTORE THE RED CELLS. MY WHITE CELLS ARE ALMOST DESTROYED FROM THE CHEMICALS...BAREFOOTEAGLE

BAREFOOTEAGLE
Posts: 3
Joined: Aug 2010

P.S. I GET BLOODWORK DONE EVERY SIX MONTHS NOW...

Johnvn
Posts: 4
Joined: Aug 2010

As indicated elsewhere, side effects can be caused also by CHOP. I would advise to get psych-social assistance, not only for yourselves, but also for your spouse.
If you consider devorce, be aware it is a common reaction to de chemo treatment. Also, as I was informed, more and more often the HEES (Hyper emotional estetical syndrom) is seen as result of chemotreatment.

An additional problem is that family and friends might want to assist the patient whilst not showing respect for the bond between patient and spouse thus causing grave relation problems.

Quissy103
Posts: 3
Joined: Jul 2011

my first bout with Lymphoma was large B cell.....aggressive.......I almost made it to the 5 year mark when I was diagnosed with follicular and started Rituxan......the first infusion, I had reaction......so spent 8 hours at cancer center while they gave me a counteracting drug. Now I am on my 3 round (once a week for 4 weeks.....then off 2 months and start again) I am tired all the time, gained weight.......my ONC told me most people feel better....I'm shocked to hear that......when I asked the chemo nurse, she said most people feel fatigue and some do gain weight. I had energy to clean my 2500 sq. ft. house before, now I am just not able to. I'm afraid to travel and life stinks. I know how you feel....I miss my old life........but also am grateful to be alive. I don't think anyone believes me when I say I am exhausted and need to lie down. It's depressing.

Johnvn
Posts: 4
Joined: Aug 2010

Paulenarae, you indicated that you experienced pain in your joints etc. after having been treated with this medication. First of all, not everybody will respond in the same way to medication, but your complaint is familiar. My partner was diagnosed with NHL low grade, stage 4. Second treatment was CHOP+R, result was pain in a joint were she had encountered a trauma many years ago. Later on also pain in het ankle. The physicians didn't link one and another.
A number of side effects mentioned are mentioned in the information brochure. Just to mention some:
- pain in joints,
- impairment of sight as the central nerve system is damaged,
- fatigue and sleeping problems

So all I can say is ask your doctor for the extensive information brochure as provided by the producer or the FDA.

Please note that some side effects are not the result of rituxan, but of the other elements of CHOP. Chop can change one personality as the prednisone is a medication which can trigger psychosis as indicated in the British Medical Journal of 1987.

Daniel M
Posts: 1
Joined: Jan 2011

My last treatment was 5 yrs ago, I have had to go thru chemo on three seperate occasions, rituxan on the last two. I have been screaming for help for my joint pain for eight hrs now! I have also prayed for God to end my pain, don't get me wrong, I love life, I just can't function with this pain. I am now going to a pain clinic, I am gotting morphean. That is not helping much I have an appt. Tue. I believe we will have to deal this rituxan side effect for the rest of our lifes! The bad part about this is I am only 44, I look healthy, no one understands how I feel.

plymouth
Posts: 2
Joined: Feb 2011

This has been a very interesting discussion for me. I was first diagnosed with B-Cell in March, 2009 when I had a "tumor" removed from the silava gland on the left side of my neck. Because they were able to remove it all, we then took a wait-and-watch approch. In June,2009 I was again diagnosed from a tumor in my groin area. I underwent chemo that did include Rituxan. I had no bad side-effects, only fatigue and sleeplessness. I also had 4 maint. treatments of Rituxan with no serious side-effects. However, I have suffered greatly with joint pain, from my back, legs, shoulders, feet, etc. Because I also underwent 2 back surgeries in 2009, I had always assumed that my current pain is caused by the back problems I have. Now I am wondering if it is actually from the Rituxan. I wonder if there is anyway a doctor could tell me this.
I also understand how you feel about looking so healthy and yet feeling so lousy - it is hard to explain to someone how you feel so bad, yet look so healthy.

ttait
Posts: 1
Joined: Jun 2011

I have had one 4 dose treatment and 1 maintenance treatment, the original was in December 10. No side effects at all until after the maintenance dose. I am not on any other treatments, only rituxan to shrink what is diagnosed as one lymph node Castlemans disease which is not categorized as cancer. Now having hand and foot swelling, and significant pain in foot and hand joints, and it seems to be spreading to shoulders and maybe hips. Dr. put my on lasix to control swelling, which helped a little, but the pain continues to increase. It is probably only a 3 or 4 on the 10 scale, but getting to the point where I cant grip a bottle to open it for example. Got another does scheduled in about 5 weeks and starting to wonder if I should go ahead with it. The castlemans node has shrunk significantly, and the anemia associated with it has recovered to the point where my rbc is almost normal again. Mostly concerned about the joint pain at this point and whether it diminishes again after the treatments.

miss maggie
Posts: 929
Joined: Mar 2010

Hello,

I had only one treatment of Rituxan in Dec 2009. Once weekly for 4 weeks. My small
bowel perforated caused by NHL in Sept 2009. I had surgery to resect, and was told additional
surrounding areas were removed. I was given Rituxan as a precaution. I had no side effects
at all. I did have a BMB biopsy, which I believe caused
my current problems with my right hip. I realize the BMB had to be done to see if there were
any growth in my bone marrow.

I am so sorry for the problems you are having. I would absolutely talk this over with your
doctor. It is very hard for me to offer an opinion. I am not a doctor. But, in my opinion,
the Rituxan seems to be doing some good. Perhaps in 5 weeks you will feel better.

Keep us informed what your doctor tells you. Love Maggie

skuttlebug
Posts: 45
Joined: May 2011

I to have pain and sevre fatigue, lack of energy, and I am staying sick a lot. With me it sort of creeped upon me, at first the pain which I contributed to some something else, then came the fatigue,lack of energy, and now my immune system seems to have nothing in it. I seem to catch everything, recently thrush that took two months to get rid of, now sneezing and sore throat that keeps haging on, was gone for a day, came back the next. I am so missarble with the fatigue, i used to be the kind of person that never stopped and never got sick. I have nlh indolent grade2 typeb with bone marrow involement. I had treatment in late 2005-2006 withcvp-r came back 2007 had rchop for 6 months and maintence of rituxan for two years, finished everything in 2010, and the fatigue just got worse I stopped driving no energy=no fun, and now this i've searched for anwsers, now i think i have found one, despite the fact my onc keeps saying no. I will keep praying for strenth. bleesings Denise

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