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NHL grade 3A, stage 2 or 4

nhldaughter
Posts: 69
Joined: Nov 2010

Hi, everyone. I just joined. My mom was diagnosed with NHL grade 3A (high grade) about a month ago. My family is a mess. It seems like it has taken forever since the surgery... she had two of her lymphnodes removed from the right groin area on 10/20. The pathology report came back with nhl 3a (high grade), but no large b- diffused cells, I think, the report is with my sister so I can't check. Her PETscan showed some uptake in the left groin and pelvis as well. For now they are saying it's stage 2, but we will find out the bone marrow biopsy (scary experience, even for me standing behind the curtain while they were doing it) result on Wednesday 12/1 to see if it has gone there. They say that will make it stage 4. I am dreading Wed and praying! First the local doctor said he will do R-CHOP 4 to 6 cycles. We took her to City of Hope (we live in los angeles and that is the place for cancer) for a second opinion and the onc there agreed. Then the local doc spoke with their tumor board and is now saying R-CHOP 3 cycles, followed by radiation in the local area, right groin where the enlarged lymphnode was originally. We asked the City of Hope doctor and he emailed, "yes that is fine too". It seems that no one really knows and just tries things. It is so hard! We took her to UCLA today for yet another opinion and this guy said something different! He said Bendamustine+Rit and radiation is good for stage 2 and just Bendamustine+Rit for stage 4, if it is in the bone marrow too. So we are so confused! We don't know what to go with. Now there are 3 possible ways to go. My mom's english isn't very good so she won't be able to use the support group here. I am hoping I can get some support/advice/answers here. She will probably start chemo soon, maybe early december and when I read the possible side effects I get so panicky and depressed! Please help!

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

Hi,
I'm sorry your family is faced with this, but it sounds like you are all moving in the right direction as far as getting your mothers treatment started and finding doctors to care for her. With your mother being diagnosed a month ago and reading everything you all have been doing, tells me ALOT is getting done in a short amount of time...and that is good...very good! Getting 3 opinions was very wise. My best advice is to find two of the three doctors that agree with each other on what treatment to use and then go with that. Usually in a big cancer clinic a team of doctors work together and I'm sure they will figure out the best treatment for your mother. There are so many tests to be done before treatment ever starts and the waiting for the test results is absolutely the hardest part! Don't panic if the cancer is in the bone marrow, as no matter what stage it is in, the treatment will be the same. I will keep your mother and family in my prayers . Keep coming here for support or answers for questions you might have. Someone is always around to respond. Take care and try not to stress out to the point where you can't think straight...all will be ok...it just takes a little time.
Best wishes...Sue>(FNHL-2-3A-6/10)> Follicular Non-Hodgkins Lymphoma-Grade2-Stage3-TypeA(indolent/slow growth)-Diagnosed June 2010
Chemo>CVP-R 6 rounds Finished 5th round last week... Dec.14th last treatment.

nhldaughter
Posts: 69
Joined: Nov 2010

thanks so much for your kind words, sue! i really appreciate it. we had the bone marrow results yesterday, the local doctor said it's negative, we got all excited! then we called the ucla doctor to tell him the results and he informed us that instead of the cytomotery flow a immunocytochemistry test should have been done since it is more accurate. our hopes got crushed again! :( we emailed the local doc telling him that and he said he'd do the other test on the speciman too. so it was very frustrating! the two doctors don't agree on the treatment and it is SOOO difficult to decide which to go with... i wish the doctors would know better.
the ucla guy said Bendamustine+Rituxen 4-6 cycles. the local oncologist is saying r-chop 4 cycles. we are waiting to see what the city of hope onc will email us back with, we consult him here and there too.
it looks like your is the same as my mom's? as of right now (hoping the bone marrow is really negative all around) they are staging it as 2 with grade 3A. they say it's a strange case because the ki-67 value is 90% (so a lot of the cells are dividing quickly), and yet there is no bulk, she only has some 2 cm ones in her pelvis area and right groin (the left side was taken out with surgery). so the local doc wants to treat it aggressively like a 3B, the ucla doc wants to treat it less aggressively. my mom is 65 yrs old.
How is CVP-R working on you? is that the one without adriamycin (i think) the one in R-CHOP that causes heart issues? i think CVP-R is very similar to R-CHOP. How did they go about decided CVP-R for you?
thanks for all your support! i will go post another discussion board item trying to get others to reply to B-R versus R-CHOP to see which one is popular here.
sending prayers your way!!! hopefully the 6 cycles for you will be over and you will be done with this thing for good.
roya

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

Hi Roya,
My cancer is a bit different than your mothers, and I'm a few years younger(60). The tumor that was removed from my groin and sent to pathology was 3.5 X 3 X 2.5 cm. I had a total of 6 tumors in that area, but the biggest one was the one they removed. Diagnosis of my cancer was determined by 3 tests...Touch preparation(?), Flow Cytometry, and Immunocytochemical stains. My Ki67 stain showed Positive cells of 40%. The Micro DX reads..Follicular Non-Hodgkins Lymphoma, grade2 (of 3) Predominately Follicular. Centroblasts per HPF is between 10 and 15. A number lower than 10 is considered low cell activity...anything above 10 is considered high cell activity. Neither a diffuse or large cell component was identified. The cells in the groin tumor exhibit a size spectrum from small to imtermediate to large with the intermediate sized cells predominating. My Oncologist said I was border-line grade 3 but not in the aggressive range... more of a slow growth indolent grade, which is grade 1 or 2. I also had tumors in my neck and abdomen which have shrunk 50% or greater after results of a CT scan done midway (after round 3)of chemo. I'll have another CT scan done the week after round 6 is completed. Hopefully before Christmas I will know if I am in remission. CVP-R is Cyclophosphimide-Vincristine-Prednisone-Rituxan. Once this cocktail is finished and I'm in remission, I will go in once every 3 months for Rituxan Maintenence for a total of two years. I do not know why I was given CVP-R instead of a different form of chemo..it's the chemo cocktail my oncologist chose for me and I didn't question the reasoning. I'm not sure, but I have heard from others that CVP-R is less harsh than R-CHOP. I only have one oncologist to deal with, not 3 like you are communicating with. Hopefully you will be able to get all of this information for your mom directed to one Oncologist and one clinic. Seems a bit crazy to have so many opinions floating around...I feel this keeps your frustration level high. Please keep us informed and I'll keep you all in my prayers.
Best wishes...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
You sound like a doctor talking there,which is good. Shows you know exactly what is going on. After reading everything about the tumors it sounds just like where I was at the midway scan. My tumors were in my abdomin,5 and 7 cms.(don't know the size of the ones in your abdomin before chemo?) I had one the size of a pea in my shoulder area. One in my groin also the size of a pea. After the midway scan the shoulder and groin area were totally gone and inactive. The tumors in my abdomin were just about 2/3 gone or inactive. The Dr. was so pleased with the results. You WILL be in remission on your next scan. We have been so identical all thru this mess,no reason to think it will change any now.Hang in there and drag yourself across that finish line. Its well worth it as you know. John(FNHL-1-4A-5/10)

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

Hi John,
I joke about me being the resident "night owl", but in all honesty, the first 3 months after I was diagnosed with cancer, I spent endless hours into the the wee hours of the morning reading everything I could about this crappy cancer stuff. I sat with my pathology report and typed in flow cytometry numbers and read what each number ment, and many times thought my head was going to blow up reading so much information. Some people prefer not to know all the details of their cancer, I'm just not that type. There's alot of outdated material on the net, but there is also alot of wonderful information if you take the time to review it carefully and differenciate what does and does not pertain to you. I don't spend so much time doing cancer research now...more fun stuff. Oh..to answer your question...No...I wasn't ever given a size range for the tumors in my tummy. CT scan didn't show any numbers either. I wasn't given a size range for the ones in my neck either. All I know is that I can't feel any of them now..."YES"! I feel a little better today..fatigue wise, but still have a nagging pounding in my head when I exert too much energy. I'll make it to the finish line...one way or the other...ha! Hair cut tomorrow...UGH!
Take care John...Love...Sue (FNHL-2-3A-6/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,
I know what you mean about surfing the net when we got our diagnosis. Believe me I was doing the exact same thing. It got so bad with me I started getting confused and frustrated with all the different stuff each would say. I would ask the onc. nurse about some of the stuff and she would say where did you hear that. Then I started noticing a lot of the stuff had no dates on the reports. Then I read some other stuff talking about it takes anywhere from one year to ten years to gather all the info and make a report of the findings. A lot of things I never saw on the web sites,but saw it here and looked it up. Thats why I feel the info here is much more informative than the web sites. There is some useful info on them but you have to know what is important and pertains to us. I never go to the webs anymore. I do not know what the stats are today. I am sure they have gotten better results than when I was scanning everything 6 months ago. I hope so anyway. I see you mentioned they went with the r-cvp instead of the r-chop. I remember talking tp you about that before. I am guessing it was because of our age. They like to use the 60 years as the cut off date. You would have been 60 when you finished. That is only my thoughts though. They were all ready to give me the r-chop at first. I had the muga scan which showed a low normal heart function. The Dr. said it was normal range for a person 60 years of age and my heart was fine,but the r-chop could cause heart problems later and cause the function to go even lower. Even with a high normal it can do the same thing years later. I am glad they went that way with both of us.I have read r-chop is rather harsh,when r-cvp does the same thing with a little less after effects. John(FNHL-1-4A-5/10)

nhldaughter
Posts: 69
Joined: Nov 2010

Thanks, Sue and John. Yes, we have done that! My sister (she is a pediatrics PA) has pretty much read EVERYTHING there is to read about my mom's case. I try to do my best too, but she is in the medical field. Like you are saying we are exhausted with all the reading and research we have done. We just want the best and the sad thing with cancer is, you don't know what the "best" is, even the doctors don't really know. You just gotta pick one and have faith, I guess. We said, as a family, we'll make a decision this weekend wether to choose the B-R treatment that the UCLA doc is adamant about, or go with the local doc who suggests R-CHOP(who by the way is open to B-R too and is just waiting to hear back from us). I wonder if we should insist on R-CVP instead??? Pick the less harsher one. I hope we are lead in the right direction and this crazy period passes soon.
John, yours is stage 1 grade 4A? I thought 3A and 3B were the last ones...?
Sue, December 14th is stuck in my mind for your last treatment. I will be saying prayers that day for you!
Roya (FNHL-2-3A-10/10)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Roya,
Stage 4 means it has gotten to the bone marrow. Treatment is the same as stage 3.To be honest with you I think sometimes they wait for that. Why??? John(FNHL-1-4A-5/10)

nhldaughter
Posts: 69
Joined: Nov 2010

Hi John,
I guess when I read your 1-4A I thought it was stage one and grade 4A. Am I reading that incorrectly? I am new here and realized people sign that way, so I've been doing it too. I was so confused at first when we found out my mom had it...actually it was when I saw the pathology report and read: "3A (high grade)" I panicked and figured the 3 meant the stage. My uncle had stomach cancer 5 years ago with stage 3 and we lost him. So I was a mess as I didn't know much about Lymphoma. I did a lot of online reading and found out grade is different than stage. As for waiting...I don't know WHY they would do that?! Roya(FNHL-2-3A-10/10)

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

Hi Roya,
When you see A or B, that means the Type of cancer. I think there is only 3 grades of cancer..1 is low grade, 2 is low to medium grade and 3 is high grade aggressive. Type A means non-symptomatic.... no outward signs before diagnosis, such as night swets, rapid weight loss, fever, chills,etc. Type A is usually slow growth/indolent. Type A individuals usually find a tumor/lump that raises a red flag that something isn't right. Type B is usually considered aggressive fast growing, and individuals show warning signs such as night swets, weight loss, or an over-all feeling of fatigue or not feeling good.I think thats how it goes, Anyways...the way you signed out tells me your mother has Follicular NHL... grade 2...stage 3... type A...and her diagnosis date was on 10/10. If indeed this info is correct, then she has the exact same diagnosis as me...FNHL-2-3A-6/10. Please share with us what treatment your mothers doctors decide on. John and I can tell you how things have gone for us which may be helpful for you when your mom starts treatment. Hope things get started soon. Love..Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue hit it exactly as I understand it as well. We are here to help. John(FNHL-1-4A-5/10)

nhldaughter
Posts: 69
Joined: Nov 2010

Thanks Sue and John! Yes, the way I signed was correct, that is what I meant. She will have her lab work done tomorrow and start the B-R regimen on Thursday. She will get it twice, on Thursday and Friday. She will have 4-6 cycles every 28 days. I am having some down/panicked/scared moments today. Although I am relieved that a plan of action is finally set, I am still dreading this weekend for her. May God keep her body (and everyone's here) strong!

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Roya,
Your mother is in for a very up and down ride. She will probably do fine the first couple of treatments then the road starts to get a bit bumpy. By round 4 or 5 she will have days where as we say on here it feels like a bus came thru and dragged her down the street. Sometimes she'll swear it came back to make sure it ran over her good. Its all normal. I won't pull any punches because I don't want you to have any surprises along the way. Don't mean to be so blunt,but thats what it will be like. Like I said, it is all normal and in the end it will all be worth it. I don't want to see anybody go thru this,but when we get this diagnosis we have no choice if we want to get better. There are people on here that will back what I am saying. Sue,Liz,Vinny,Mary,Tom,Lisha,Chris, etc.etc. have all been thru it and some still are on that rocky road. Your mother will be just fine after all of this up and down ride. hang tight and do not worry too much,it will be fine. I am 2 months out and still not 100%,but getting there. John(FNHL-1-4A-5/10) REMISSION)

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