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B-R or R-CHOP?? Help Please

nhldaughter
Posts: 69
Joined: Nov 2010

Hi all,
I joined a few days ago. My mom (65 yrs old) was diagnosed with NHL 3A for now stage 2 (the bone marrow flowcytomotry showed negative, but they will do an immunocytochemistry to make sure it is not there for sure, why didn't they do that in the first place? go figure! to torture us, I guess) They say it's a bit in the intermediate area rather than follicular/indolent since the ki67 is 90% so that 90% of the cells are dividing. Although there were no large B-cells, the local onc wants to treat it aggressively with R-CHOP (3 or 4 cycles). The UCLA onc is against that and wants to do the relatively newer drug Bendamustine-Rituxen (4-6 cycles). They don't seem to agree, both are pretty adamant and feel strongly. We've spoken to both and relayed the other's message. We are caught in the middle! It's hard to make a decision on your own and then later possibly regret it. PLEASE let me know if you have any advice/experience in this matter. What should we do? What would you do??? Thanks!
Prayers and support sent everyone's way!
Roya

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Sounds to me like another opinion is in order. Don't worry, it will work out. Aggressive lymphoma is actually not as bad as it sounds...the chance for cure is better.

Beth

my wonderful husband
Posts: 6
Joined: Dec 2010

Hello,

There is a great deal of confusion when dealing with cancer and treatments. New research is coming out all the time (thank goodness) which indicate which treatment options are the best. When my husband was diagnosed with Diffuse Large B-Cell Lymphoma, I started reasearching the scientific literature to find out what the experts thought. What I found MOST useful is the National Comprehensive Cancer Network (NCCN) Guidelines.

These guidelines are used nationwide by oncologists for the diagnosis and treatment of cancers. The guidelines are created by a panel of experts in their field from the best Cancer Treatment Hospitals in the nation. There is a NCCN Guideline for Lymphoma which you can access at: http://www.nccn.org/professionals/physician_gls/PDF/nhl.pdf

It appears that Stage 2 Follicular cancer is treated either with Bendamustine-Rituxen OR with RCHOP. Both of these are considered to be category 1 (the most preferred) treatment regimines. If I were in your place, I would kindly ask each doctor WHY they think their treatment is better. What data supports their opinion. And why they think their treatment gives your mom the best odds for a cure.

I wish you all the luck in the world! I know you will find the right path.

Catherine

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

i know of the PDQ database which is the Physician Data Query (database)

If a doctor is unaware of the latest and best treatments for an individual patient, all the research and all the work done and all the money spent is wasted as far as the patient is concerned. The quality of care can be compromised or lives lost if the DR and medical team is unaware of all the latest treatments available. A continually updated database of the latest treatments can instantly deliver state of the art information to any practicing physician in his or her office.

The types of information included in this database is a way for doctors to identify investigative studies by area and a resource for a comprehensive directory of physicians and treatment facilities that could be contacted for cancer care

PDQ (Physician Data Query) is NCI's comprehensive cancer database. It contains summaries on a wide range of cancer topics; a registry of 8000+ open and 19,000+ closed cancer clinical trials from around the world; and a directory of professionals who provide genetics services. PDQ also contains the NCI Dictionary of Cancer Terms, with definitions for 6000+ cancer and medical terms, and the NCI Drug Dictionary, which has information on 1200+ agents used in the treatment of cancer or cancer-related conditions.

The PDQ cancer information summaries are peer-reviewed, evidence-based summaries on topics including adult and pediatric cancer treatment, supportive and palliative care, screening, prevention, genetics, and complementary and alternative medicine.

DenJ
Posts: 26
Joined: Oct 2009

I agree with Catherine. DO NOT be afraid to ask your docs ANYTHING. You are the one who has more at stake. Having said that....last year I was diagnosed with Follicular NHL. My Onc wanted to treat it with R-CHOP. I did go for a 2nd opinion and found the diagnosis was the same, but the 2nd doc wanted to do the wait and see.....I opted to go after it. I don't know much about the B-R, but I did go research on the R-CHOP. I found it was one of the best ways to treat the NHL. I had the R on mondays and the Chop on tuesdays one evry 3 weeks for 6 rounds. I have been in remission for over a year and I never once second guessed my decision. There will be more you will have to make perhaps....and that can be hard....but once you make em....don't look back.

Best of luck,
Den

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you all! Catherine, we did ask both doctors of their reasoning and both have good ones (R-CHOP: standard treatment, lots of data, can prevent transformation to Large B-cell, and B-R: less toxic, a new study not published yet has shown it is significantly better than R-CHOP, try it first and see if it fixes it and then resort to others if needed). My sister also went to the NCCN guidelines and it seems that R-CHOP is the one that applies here since grade 3A is usually treated like the aggressive type. But, the UCLA doctor is adamant that something with less harsh effects could take care of the problem. My mom's case is a weird one. It is grade 3A and yet rather local, so it sort of falls in a mid-range. The Ki 67 value is high (90%), but only a couple non-bulky ones are seen in the groin/pelvis area. The decision-making is killing us! You are right though, Den, once we make the decision we won't look back!
My other sister is trying to talk to some doctors at work, she works with cancer research. We have said by Monday we'll try to finalize our decision so treatment can start! Sometimes I think having two sisters so involved with the medical field is maybe making us go crazy, we are over-thinking and over-researching.
R-CHOP scares me! One of the drugs can cause heart problems and my mom is old and sometimes has heart issues. But then B-R scares me because what if it doesn't work well and we prolong this whole thing??? Ahhh, I hope we make a decision soon! The waiting to find out results and decision-making process are always some of the hardest things here! We will keep praying for the best.

my wonderful husband
Posts: 6
Joined: Dec 2010

Hello Roya,

These are the craziest of times, right at the beginning. So many tests, so many decisions, so much insanity and not much certainty. But I am overjoyed to see that your mother has three wonderful daughters, especially you, working diligently to make sure the right choices are made. Also, it's a huge blessing that your sister is involved in cancer research and has access to knowledgable docs.

Ultimately, I have faith you will make the perfect choice for your mother. Remember if you do go with RCHOP, they will do is a MUGA test which looks at current heart function. They will not proceed with RCHOP (or they will vary the dose) if they have reason to believe it would cause significant effects.

Please let us know what your family has decided. And know that you have many people, including me, praying for you and your mom.

Catherine

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

Hi - welcome to the CSN - you'll find a lot of info here from patients. I joined 6 months ago and it's been so helpful. Sounds like you're doing just the right research and will be anxious to read which treatment you decided on.

When you say your Mom is old, how old is that? I'm 68 and that's old if you're in your 30's, but not to someone my age!

If you look at my postings about Bendamustine-R from about 2 weeks ago, you can read posts from several guys who have used it. Moffitt Cancer Center in Tampa decided it was the right choice for me and debated between it and CHOP-R. But I'm stage 4, Indolent, B cell Follicular rather than Aggressive. It's a 2 day treatment every 28 days. I had failed at 6 treatments of CVP-R this summer. Have a large tumor (8 cm. - did shrink down from 12 with CVP-R)in my abdomen. Spent two days in the chemo room in mid November - it knocked me for a loop for about a week to 10 days after - lost 13 lbs. and was so tired and sick I couldn't lift a finger. I do understand from Doctors and extensive research my husband and I both do on the Internet that it's success rate is higher than CHOP. It said the side effects were less severe, but can't imagine the other being any worse. Except that it's a given you lose all hair with CHOP and they say none with Treanda. I lost (thinned) most of mine this summer and now wear wigs and scarfs. I have 5 treatments to go and am hoping it will have the results we're looking for. Good luck - let us know what you decide - Fran

nhldaughter
Posts: 69
Joined: Nov 2010

Thank you for your prayers, Catherine! We will need them.

Fran, my mom is 65 years old. I am 32 and I don't find 60s old. (ha ha) In fact I have a couple of good friends in their 60s.
My family decided to go with the B-R regimen. She will start it on Thursday and get her second dose on Friday. I went and read your previous posts on it, I am so scared! Here I was thinking that if we don't go with R-CHOP then it will be much calmer, but based on my research and your side effects I am panicking big time! I know each individual is different, but you can't help and worry. I am afraid of what this weekend will hold for us. You may see me post some questions this weekend if things get too worrisome. I wish she had her treatment early on in the week so if something came up we could get a hold of her doctor, but we are anxious to start as we feel we have waited and researched long enough. How are you feeling now that you are two weeks into the thing? Have you gotten your strength back? I pray that your other cycles are easier than the first one.

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

Hi Roya and Jim - just reading your Dec. 7 post, Roya, and wondering how your Mom is doing this weekend? I hope she didn't have the bad reaction I did - am sure everyone's different. I actually had 2 weeks of feeling bum - very fatigued but by the second week I could get out of bed. Have a few good hours in the morning and then I crash. I then had one week of feeling almost normal - my 3rd week after chemo. It was this past week and I did fun things with hubby and friends every day, including a weekend trip to see the traveling Christmas show of the Rockettes. Great to get away and think of something else!

Dreading tomorrow and Tues when my second treatments will be. Jim - welcome to CSN posts and so encouraging to hear you had such a great remission to this chemo! Did you have an easier time of it with less side effects than I? I will hope that happens for your Mom, Roya. Keep us posted and prayers your way. Fran

nhldaughter
Posts: 69
Joined: Nov 2010

Fran,
I'm happy to hear you had a normal week! I hope more of these come your way! I think today is your 2nd day of B-R, I hope for less side effects this time.
Roya

JOesterwind's picture
JOesterwind
Posts: 3
Joined: Dec 2010

I have FNHL-G1/S4. I just finished six treatments of bendamustine combined with retuxin. The regiment worked well for me. My spleen was twice the size of normal and I had lymph-nodes that swelled to the size of oranges and grapefruits. Spleen is back to normal and nodes are too. My oncologist is very optimistic. So, it sounds like I was a little bit worse off with my diagnosis and the B-R worked for me. I will pray.

Jim

MOMMAMIA
Posts: 2
Joined: Dec 2010

THIS MAY BE TOO LATE IN ANSWERING YOUR REQUEST FOR HELP. AFTER BEING TOLD THAT CHOP WAS THE ONLY ANSWER IN TREATMENT FOR MY STAGE 4 NHL FOLLICULAR B-CELL/INDOLENT I REQUESTED A SECOND OPINION FROM MAYO CLINIC. THE MAYO CLINIC HEMOTOLOGIST WAS IN HIS SECOND MONTH OF TREATMENT FOR HIS BLADDER CANCER AND STATED HE WAS EMPATHETIC TO HIS PATIENTS AND TO THEIR CHOICES IN TREATMENT AFTER HE WAS DIAGNOISED WITH CANCER. HE RECOMMENDED THE RETUXAN. I WAS NOT INFORMED THAT CENTRAL NERVOUS SYSTEM TREMORS WAS ONE OF THE SIDE EFFECTS ALONG WITH URINARY RETENTION. MY QUALITY OF LIFE REMAIN GREAT.

CHECK OUT GAIL SHEEHY'S BOOK ON THE "PASSAGES IN CAREGIVING". THIS BOOK WILL HELP YOUR MOTHER AND FAMILY FIND A DOCTOR WHO IS A TEAM PLAYER AND WHO VALUES YOUR INPUT. I AM 65 YRS OLD. MY MOTHER AGE 85 IS HAVING DIFFICULTY WITH ONE OF HER CHILDREN DYING BEFORE HER. MY HUSBAND'S ANGER OVER MY CANCER HAS BEEN DIFFICULT FOR ME TO DEAL WITH. EACH OF US WALK A DIFFERENT PATH. DR. IRA BYOCK'S BOOK "THE FOUR THINGS THAT MATTER MOST:A BOOK ABOUT LIVING" HELPED ME DECIDE WHICH PATH I WOULD WALK.

PLEASE LET ME KNOW HOW YOUR MOTHER IS DOING AS WELL AS THE REST OF THE FAMILY.

nhldaughter
Posts: 69
Joined: Nov 2010

Hi all,

Fran, hope your treatments went well. How are you doing? I was thinking of you, I remembered and prayed. My mom is doing better today, thank God! It gives me energy to see her doing better. Thursday and Friday were tough, especially Thursday, she was in the infusion room for 7 hours! The weekend was so-so. She had bad constipation, indigestion, throat/esaphagous issues (couldn't eat/drink warm stuff) and her sleep was bad. She just felt blah! Today is a good day, she actually cooked and cleaned. So all in all I am grateful. I pray it stays like this or gets better.
As for the other post (mommamia), thanks for the words of encouragement! Are you only on rituxen or rituxen-bendamustine? My mom has been complaining about having to urinate frequently and really having to go. I did not know this side effect. What is the central nervous system tremor like? Do you know if these side effects will go away once you stop the meds?
Thanks!

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

Hi - thanks for your prayers - they mean so much! We had a huge dissapointment Monday -went in expecting to spend the 7 hours you mentioned with lunch packed, blanket, etc. but my blood counts had been so very low on Friday they were unable to do my chemo. That throws off all Christmas plans - bummer. Gave me Neupogen shots Mon. and Tues. which your Mom may need at some time to build back her bone marrow and boost blood counts. Today blood work was sky high with counts 4 times what they were Monday! They don't know why, but will do chemo tomorrow (Thurs.) and Friday. Oh well - these things are not in our control.

I'm so glad your Mom's reactions weren't any worse. I had not heard of the central nervous system tremor before - would like to know more also. I was so very thirsty after B-R that I drank constantly for 5 days, which also caused urination frequently. Will see what happens differently this time, or it may be the same. Thanks for your thoughts - Fran

truckingalong
Posts: 444
Joined: Aug 2010

Hope your situation improves.

Fran, hope your chemo treatments go easy on you. I just had mine yesterday! Gotta rest well, smile.

With positive thoughts,
Liz

nhldaughter
Posts: 69
Joined: Nov 2010

Sorry to hear that Fran! I hope Thursday and Friday went okay.
Roya

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

Hi NHl daughter,

I am so happy that your mom is doing better. The side effects you mentioned happens to many of us. Please consider consulting your Oncology team to advise on relieving these side effects and concerns, they really can help.

Yeah, those chemo days are long. I remember praying over the premed and chemo bags.
I remember those blah moments. Thank God these can be temporary. Your mom may need assistance with the cleaning. She has a new body now. It may seem like she can do it all, but helping with chores would be helpful.

I am on a maintenance plan of Rituxin. I have been using it for 1 1/2 years with no problems. I have no side effects from the Rituxin.

I pray that your mom continues to do well. And am happy she has such a caring and thoughtful daughter.

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