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Rituxan with follicular lymphoma

Kalylis
Posts: 10
Joined: Jun 2012

Hi, my name is Lisa, I am 27 and was diagnosed with stage 4 FNHL February 2011. I received 8 treatments of r-cvp and completed treatment September. I am currently in remission and am still receiving ritux every two months. Since I finished treatment in September I have been experiencing other health issues in the ovaries and colon. I have been experiencing night sweats almost every night for three months now and just had a CBC don't this week and my neutrophils are showing 0 and WBC is 2.25. My doctors first reaction was I relapsing, than later found out there has been some side effects with the rituxan. Has anyone relapsed soon after treatment or had reactions with the rituxan that can share? The thought of a relapse already terrifies me and was hoping someone can discuss either early relapses or issues with rituxan to help me stay calm at this time.

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

Welcome to this site and sorry you have to be here.
You'll find wonderful folks and support here.
I don't have the same experience as you so I can't directly
reply to your questions but I'm sure someone will very soon.

I received rituxan as part of my treatment (R-EPOCH) for Diffuse
Large Cell Lymhoma (Stage 2, primary in the small intestine and
mesentary area). Fortunately I didn't have any major side effects
other that what was expected. I'm sorry you are having these issues.

If your neutrophils and WBC are very low, you need to be very careful about
infection. Avoid crowds, raw foods, and anyone who is sick. Did they
give you neulasta to boost your blood counts?

Most people handle rituxan fairly well but there are some folks here who had
reactions or side effects outside the norm and I'm sure they will chime in soon.

I hope they get to the root of your issues and you start feeling better soon.
I just wanted you to know we're out here listening :).

Big hugs and hang in there!

Jim

Kalylis
Posts: 10
Joined: Jun 2012

Last week I was given neupogen. On Friday they tested my counts and they went up. But over the weekend I have been starting to feel sick again. Everytime my counts have ever gone down it is joined with this annoying mucusy cough. This is the first time counts have ever gone down since I have been in remission. My doctors first reaction was a relapse than heard of some issues with the ritux. Apparently only 0.06% of people on ritux have blood count issues. They want to follow up with more blood every couple of days. They said if it starts staying stable on it's own it was caused by the meds, but if it continues dropping I will be going in for another bone marrow biopsy. This is something I remember being extremely painful and don't look forward to go through it anytime soon. Thank you for replying. It really helps talking to someone, especially someone that can follow what I'm going through. My family is supportive, but they just don't understand how it feel and what we all go through.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Lisa,
Welcome to the place I know you don't want to be. None of us really do,but since we have to be here you will find a second family to help and support you. My name is John and I have the same diagnosis as you.I was diagnosed 2 years ago and recieved the R-CVP,but for 6 rounds. I went into remission and still am. The relapse stays in all our minds.I never had any night sweats,weight loss or tiredness so I was asymtomatic.I do not think anybody ever returns to 100% like before diagnosis. I do not know if it is caused by the chemo alone or the R.Anything that seems out of the norm is going to make you feel paranoid. What we have is notorious for returning someday but nobody knows when.If it returns they have so many other routes they can take for farther treatment.There is another member on here that was diagnosed with exactly what we have and she will be responding to you shortly. John (fnhl-4-1a-5/10)BTW: How did you come to be diagnosed? Did you have symtoms or just a routine exam? Mine was found by accident on a yearly visit to the Urologist.

Kalylis
Posts: 10
Joined: Jun 2012

I felt nauseous and felt like I was going through menopause. It was a bunch of weird symptoms. For a month I made excuses for everyone of them. My husband finally said enough is enough and told me to see my doctor. I mentioned my symptoms and she instantly started checking my neck. She found 4 nodes by touch in my neck, three under my arms and four in my abdomen. I was sent for blood work which came back abnormal so they followed up with a ct and than did a biopsy in a node from the abdomen. Once I found out I had follicular lymphoma, I was sent to hematologist and they completed the bone marrow biopsy. That's when they determined I was in stage 4. Soon after I started treatment and had some delays with treatment due to blood counts. I would love to hear about some other experiences with dealing with remission and relapses. I am definitely more discouraged now and want to stay as possitive as I can. I am a stay at home mom of two little ones and really don't want to go into any type of depression because I didn't deal with this properly.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Hopefully there will be more responses from other members of the group. This is definitly reason to have all checked out. Anytime something does not feel right is actually a good time to be followed up. Like I was saying I never had any symtoms. My tumors were also in the abdominal area. I had a small one in the right clavicle . A small one in the groin area as well . The ones in the stomach I could feel after I was told they were there. They were hard as rocks. They were in the upper left quad. After I had my first R-CVP treatment I went home and laid on the bed and I could still feel them,but they were now softer and felt mushy. After the 3rd treatment I could no longer feel them and the PET scan showed 50% shrinkage and the ones in my clavicle and groin were gone completely. After my 6th treatment I had a PET scan and the abdominal tumors were still more than average size,but totally dorment. I am assuming this was scar tissue as to why they were still enlarged slightly. My last 3 PET scans I had showed N.E.D. As far as the bone marrow goes I do not know if it is still there or not.I had problems with my left hip hurting when I walked any distance after the bone marrow biopsy for a few months. Its fine now. Still do not have 100% of my energy back. John

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Lisa,
My name is Liz, I'm 35 with Splenic Marginal Zone Lymphoma stage 4 with tumors in spleen, liver and bone marrow involvement. I was diagnosed in July of last year and received Rituxan treatment in Feb of this year once a week for four weeks. Did have some side effects from the medicine had lots of pain almost immediately after starting treatment with lots of chills and shaking. Had Rash/Hives a week later, and angioedema on the third week, by the fourth week I was extremely tired. I just had a visit with my Onc and had some test done this week of my back and abdomen (I've had lots of pain on my back) that's why he decided to do an MRI and on the 14th will go back and see him to see how everything is going.
Hopefully you are just having reactions and not relapse. Take care and please let us know how everything is going for you.

Sincerely,
Liz

Kalylis
Posts: 10
Joined: Jun 2012

I actually had reactions with the rituxan when I first started treatment. Everytime they increased the dose to more than 50ml/hr I had a different reaction. The first reaction, I became very itchy and broke into hives. They gave me benadryl and an hour break. They started up again and I started getting chills and broke a fever. They gave me more benadryl and gave me another break. The same day they started up again and I started having sneezing attacks. They decided to stop for the day and continue the following day. They figure I was having some type of allergic reaction. Thy next day they gave me antihistamines and benadryl before I started treatment and it was successful. I have to be on a blood pressure machine through all my treatments and it takes on average 7 hours before im done. You are having alot of the effects I had during treatment. I read on rituxan website though it can cause stomach problems and tears and blockages in the bowel. I was recently sent for a ct in the colon as I have been having pain and the next step is a colonoscopy. Do you have any more rituxan treatments coming up? Ask of they can try giving antihistamines prior and see if it makes a difference. I am schedules for another 8 treatments of just rituxan, but they are putting it on hold until they can figure out more.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Lisa,
That sounds about the same time it takes for me to do my treatment. The nurses usually prep me up with all sorts of medicines before they give me Rituxan since they know that I'm gonna get a lot of pain (I can't remember all of the names) Tylenol, benadryl and some others. I'm gonna go in again for treatment in Aug for another four weeks and then repeat every six months.
Hopefully the Onc will find out what's going on soon so you can get it taken care of. I think the guessing and waiting is what really gets all of us stressed out, as for me as soon as I know whats going on then I sort of go into a battle fight mode way of thinking lol! I rather just know then to be having crazy thoughts running through your head all day.
Take care and please let us know what the doc says. (((Hugs)))

Sincerely,
Liz

GKH
Posts: 288
Joined: Jul 2012

My infusion process begins with Demerol 1 hour in advance. After I am hooked up and on saline I get a shot of Benadryl via the tube and two acetomenophen by mouth. I find it painless and the 4+ hours zooms by quickly. Only infusion reaction was on my first dose which resulted in a dangerously low BP. I do feel tired a lot and my muscle and joints ache. But its doable.

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi Lisa,
I was diagnosed with FNHL in June of 2010. If you click on my picture(actually my granddaughters picture) you can read my "about me" page and learn more about my cancer journey thus far. I am stage 3, no bone marrow involvement. I'm also doing the 2 year Rituxan maint, one infusion every other month, as you are. My last R infusion will be on Feb 14th 2013. So far I am doing pretty good with my Rituxan treatments...no problems to speak of. My knees ache and I get tired sooner in the day than I use to, but it's a small price to pay I guess, after doing 6 rounds of nasty chemo. I still have one pesky tumor under my colar bone that hasn't shrunk as much as my doctor would like, so my condition is considered "stable" instead of being declared in remission or NED(no evidence of disease). The only thing that has bothered me since finishing my CVP-R chemo and doing the bi-monthly R, is my energy level. It's just not where I would like it to be. My blood work has always been good..during chemo and after and I never had to get any shots to boost my counts. I was very energetic before my diagnosis and truely miss my "old energetic self". I, like you and probably everyone else with cancer, worry about recurrance. Follicular NHL will definetely show up again,(so my doctor says) but not knowing when or where, keeps us in a semi state of panic when little things crop up. Every so often I will break out in a swet or get short of breath and then that anxious feeling sets in..."is it back"? I try to take each day one at a time and make it as good a day as possible. Your age will definetely be in your favor, so try to stay as positive as possible. Like John said, there are many treatments available to take for this, and I'm betting in your lifetime you will see some excellent results. Keep the faith, and keep coming back to us for support. Please let us know how things go for you. Love...Sue
(Follicular NHL-stage3-grade2-typeA-diagnosed 6/10-age 61-considered stable)

Kalylis
Posts: 10
Joined: Jun 2012

That's great they had such success with your treatment. Apparently I still have alot of infected lymphnodes but since they shrunk by 75% they consider it a successful remission. When I was first diagnosed I took it extremely well. I occasionally broke down bit picked myself back up. Now being in remission I am terrified everytime I see te doctor. I often seem to be the rare case when it comes to my health. They say it's rare for follicular lymphoma to show up in younger people, but on the plus side I have already been approved for a bone marrow transplant. If I relapse within three years I will get one, if not after my second or third relapse thy plan on doing one regardless. Its funny you mention that you have sore knees. I've been falling alot lately and actually broke my foot back in January. I felt like my knee would just give out randomly. They did bone density tests and xrays. I feel they really need to know more about these drugs. It's kinda strange that none of this was ever discussed as possibilities of being my main source of problems. I use to be very energetic and went to the gym and stayed in shape. I was diagnosed 6 months after I had my son and didn't get enough time to lose my pregnancy weight. Than I had no energy and gained a bunch during treatment. How much did others gain? Has anyone found a good way to lose after treament with little energy? It is important to me to be at a healthy and happy weight before I do need to start treatment again. I have been seeing a dietitian and I eat healthy but it is very hard to lose anything. Anything natural to boost energy?

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Kalylis,

Night sweats are usually considered a "B" symptom. If you are in remission, that is a little odd, but your doc is undoubtedly on top of your status.

I never relapsed, but rituxan for me mostly caused severe muscle pain -- I felt like I had the flu all the time. Mine was bad enough that I had to use Loritab for it.

It sounds like the doc is using rituxan for you as a "maintenance" therapy, and to reduce the chances of relapse. While many people consider medicating to be not the best way to "cope," worrying about cancer is a severe trial, and I would suggest that you ask the doc for an anti-anxiety medication. Mine perscribed one for me before I ever asked.

I know of no "magic bullet" to prevent anxiety. You are just going to have to trust in your medical staff, and understand that what you feel is COMMON and NORMAL. I am over two years out from any treatment, and have indicated only total remission during that time, yet every test is still frightening.

But also understand that lymphoma is among the most treatable cancers, and that you have a lot of new friends at this site.

max

Kalylis
Posts: 10
Joined: Jun 2012

Thank you for everyone's replies. My family doctor was concerned about me and put me on anti anxiety medication and like it seems every case I had sever reactions with it. I got sever migraine, dizzy spells and started hallucinating. She wanted to put me on a new kind but I have not started anything as of yet. She also suggested I start talking to someone. Either people that have been through this or a therapist. She feels I accepted being sick to easily and just dealt with it. She sees how I am starting to act knowing what is going on. This is the first site I have found that actually really helps talking to someone. Thank you everyone for welcoming me. I do appreciate everyone replying and giving me information on their experiences. It means alot

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1019
Joined: May 2012

Kal,

The anti-anxiety med I took was Lorazepam. My doc gave me a perscription for it the day I met him, because he knew what I was about to go through. I had no side-effects that I can recall. It has a little sedative in it (it is chemically similar to Valium).

I am not an addictive personality (I have been on morphine and Darvon in the past for over a month following severe injuries [18 fractures at once and a collapsed lung], with no withdrawal symptoms at all). If interested, ask your doc about it.

I know it is not recommended for long-term use, so do discuss the limitations.

Bottom line, ask the docs and pressure them to address your issues.

Always around,

max

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

I agree with Max on the Lorazepam (Ativan). It really took the edge
off for me regarding anxiety. I was prescribed one tab twice a day but
I only took one at night and that helped. I tapered that down
to 1/2 tablet at night and I haven't taken it now for awhile (2 weeks).

Hugs,

Jim

Kalylis
Posts: 10
Joined: Jun 2012

I was on lorazepam While in full treatment, but I found it really drained me for the mornings and I have to get up with two little ones every morning, so I wanted to be taken off it. I found I was becoming a paranoia in the evening if I wasn't on it, so I was put on different anxiety med that I ha all the problems with, so had to go off. Since I was off lorazepam for a couple weeks the paranoia went away as well. I have more blood work tomorrow and see my oncologist next week so hopefully I find out more of what is going on.

nancynurse1954
Posts: 15
Joined: Aug 2012

September; Celebrating Lymphoma Awareness
My Journey with Non-Hodgkins Lymphoma

My name is Nancy Ruiz I am a registered nurse and I have Non-Hodgkins Lymphoma. It’s been a wild ride since the beginning of April 2012. What I thought was a cyst in my right axilla, resulted in enormous multiple nodules suspicious for cancer. I had multiple sonograms and lab work-up. Sonograms always revealed the term “highly suggestive for malignancy”. I was prescribed 3 weeks of intense antibiotic therapy, hoping that these abnormal nodules were related to a severe infectious process. After 3 weeks, my doctor and the radiologist determined that finally I needed a PET scan to determine if there was a malignant process in my body. On May 4 PET CT was done. Well it turned out, that I had extensive malignant nodules throughout my body. Final radiologist impression: Lymphoma! After spending the first few days processing the bad news and shedding a river of tears, I found myself optimistic and ready for the battle.

I was referred to surgery for an excision biopsy of one of my axilla nodules, to determine the type of lymphoma in my body. After surgery I was sent home under the care of my son who came from Puerto Rico to be with me and take care of me since he is also a registered nurse. I feel blessed to have such a wonderful and caring family. A family that is giving me love, strength and above all hope. Two Daughters, a son, two grandchildren, my sister, all of my family; have gone the extra mile to be with me in person and/or across the miles. Days later, the pathology report revealed Follicular Lymphoma grade 3b stage 4.

Then it was time to see the Oncologist. A co-worker and friend Dr. Daly talked to me about the best Oncologist in NYC, Dr. Owen O’Conner who treated her cousin’s B-cell Lymphoma with a successful remission.
After numerous calls, my daughter managed to get me an appointment with Dr. O’Conner. His specialty is in lymphoid malignancies and he is affiliated to 9 hospitals in NYC. The doctors and nurses of his clinic are dedicated to treating patients and offer the most effective treatment in a caring and compassionate manner to both patient and family. The team worked together to determine, the best treatment option for me. Outstanding nursing care is provided by an experienced team of nurses. They are just a phone call away when you need them.

In June I started monoclonal treatment with rituximab in the Herbert Irving Cancer Center of Columbia Presbyterian Hospital. The nurses and the clerks of the infusion center are angels sent from heaven. They are committed to caring for you and your family. They empower you with information, listen to your concerns, administer your treatment and monitor you constantly for any adverse reactions.

My second PET CT was repeated on August 20, 2012. Unfortunately; I have not reached remission. I re-started treatment again on August 30, 2012. I’ve had my ups and downs requiring psychiatric follow-up and anti-depressive treatment. This treatment has contributed in a positive way to my mental well being, and to help me deal with the frequent oncology routines and follow-up testing.

Thirty five years of professional nursing never prepared me to personally encounter my own cancer. For 4 years I helped many patients with cancer and even administered chemotherapy. You never think it could happen to you. But health professionals are not super-people and we are vulnerable to catastrophic diseases just like everybody else.

So how do I live life with this disease? Only time will tell. I have been on a roller coaster of emotions since day one. The difficult part for me is the mental stress and physical exhaustion. However, my approach is to try and live life one day at a time, not to get too stressed about little things, retire and enjoy life as much as I can with my family.

I am definitely more thankful and enjoy the little things life has to offer. I continue always to praise and thank God for his healing process in my body, for my doctors, nurses, family and friends. Non-Hodgkins Lymphoma has taught me one thing; that life is very fragile and should be cherished.
"Life is a Journey, not a Destination."

Non-Hodgkins Lymphoma cannot bully me
I will win my battle……….

GKH
Posts: 288
Joined: Jul 2012

I was diagnosed last year with Follicular Lymphoma stage IV. Since I was non-bulky, my oncologist recommended Rituxan monotheraphy. I had Rituxan once a week for eight consecutive weeks then started maintenance with one infusion evert 8 weeks which is to continue for two years barring relapse. My hair loss is very minimal, but I have some side effects. My legs and shoulders hurt constantly. I suffer fatigue and have developed high blood pressure and glaucoma. The real news is that the disease is undetectable in my bone marrow. Last PET showed some small spots which will be on a watch list. All told I believe Rituxanworks well for me. Hope this helps.

rclaxb's picture
rclaxb
Posts: 13
Joined: Sep 2010

Lisa, I was diagnosed March 2009 stage 3 indolent FNHL and started R-CHOP Nov. 2009 after a second swollen node appeared. My last maintenance Rituxan was Feb. 2012. In two weeks I go for yearly CT scans. Last night I had a night sweat. Yes, worries started, but my primary over a year ago after several visits and questions told me I was depressed and place me on a low dose of prozac. Best move. I am able to deal with stress in a much better way. I have no problems being on the drug for it has relieved the dealy stress cancer give you. Good luck!
Rich

kidsandliz
Posts: 9
Joined: Jan 2010

I know this is an older thread but I also had the late WBC drop with rituxan (0.5 WBC and no neutrophils about 4 months after treatment was over). This late WBC count drop is a side effect of Rituxan and can happen up to 6 months after you finish treatment. It usually resolves by itself lasting anywhere from 2 weeks to several months, on average. A lot more people may have this happen to them than realize it simply because most of us are on once every 3 months blood draws at that point and it could be missed. The other group that suffers this is the arthritis patients who take rituxan (nice to know it will treat rheumatoid arthritis if we have it LOL). Anyway By now you should probably be done with the problem.

Just posting this so others know this is a late side effect of rituxan that ultimately is a no big deal one.

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