hello i just got my biopsy back and my bone marrow is clear. i'm a stage 2 grade 3. diffuse B-Cell follicular lymphoma. i'm really tired out so shes thinking my cancer may be more aggressive then what my biopsy showed of my lymph node. i have swollen nodes in my back, abdomen, chest, and groin. but they all aren't swollen and they vary in size.my largest node is 3x2. she said my low back and abdomen pain is from cancer.my husband is medically trained so i let him ask most of the questions. but sometimes it was like pulling teeth to get a prognosis. but she is quite optimistic i will go into remission. after remission she will give me ritauxn for 6 months. well, i'm more at peace with myself now and the cancer. i visualize it slowly shrinking from my body and i feel better each time. well, i'm open to all support and info.
mbh456
Glad to hear you're more at peace, that's great. The aggressiveness of your cancer is reflected in the grade-- although giving a grade to lymphomas is kind of old-school, it's still often done with follicular lymphoma, and they range from 1 to 3, 3 being the most aggressive. Despite sounding bad, in fact this aspect should make your cancer more vulnerable to both chemotherapy and radiotherapy, which is good.
As for getting a prognosis, pulling teeth is no surprise. Oncologists can give you some percentages, maybe a loose time estimate, but in truth they have no real idea because everyone is different. It's the question everyone asks and wants an answer to, and it's the one oncologists are least equipped to answer.
Ross
MBH, I too am glad to hear that you are coming to terms with things, it is an important achievement in managing the process you have to go through to get well again.
One observation (that doesn't impact your treatment planning, at all) - if you have swollen nodes on both sides of your diaphragm that were reactive to the fdg during the PET then you are actually Stage 3 instead of 2. Stage 2 is used when reactive nodes are all on the same side of the diaphragm. It really is a nit but, since I have a need to control of my treatment plan, it is the kind of thing I would ask about on my next visit. Here is a link to the facts, if you are interested - http://www.nhlcyberfamily.org/stages.htm. I know there are folks who don't want to get to this level of detail but my view is that knowledge is the only tool I have to help me make the decisions I need to make from time to time about my health (and my life). I like to trust my doctor but I like trust but verify better.
Your doctor was right about achieving remission, you should expect that outcome as it is what happens for most people. Regarding prognosis, Ross is right on - whatever they tell you is a best guess anyway and the prognosis is different for every single person who has lymphoma. For me, I accept the statistics and strive to do my best to be on the long side of the curve. Good luck with your treatments, do you know when things start?
Good health,
kermica
Kermica, if you ever launch a cancer blog, there's your title and theme: "On the Long Side of the Curve."
yes next Tuesday is my porta cath is put in, then Thursday i have chemo education. my chemo starts on the 11th. then i get a white blood cell booster the next day. followed by blood work. the next chemo is november 1st. oh by the way i got a flu shot yesterday.everything is lined up now and moving fast. i'm ready to battle it head on.
MBH, I applaud your attitude, taking this head-on. You're but a few steps behind me. I've only been diagnosed about 2 months, yet have 2 treatments behind me ... 4 more expected. I find the grade/stage details important to know, but then file to the back end of the process. As the more experienced have already stated here, you go forward w/that knowledge.
Ross' comment, "... range from 1 to 3, 3 being the most aggressive. Despite sounding bad, in fact this aspect should make your cancer more vulnerable to both chemotherapy and radiotherapy, which is good," seems the most eloquent way I've heard it put yet. My oncologist said much the same thing. He told me I'd feel better almost immediately. Since I thought my back pain was lupus & sweats were menopause, I was accepting that as-is. I responded, "I don't feel bad now."
He was right, though. After my 1st chemo treatment was a few weeks behind me, I was feeling REAL good. Now, w/#2 in the rearview, day-by-day I see the wisdom of my doctor's words. The chemo's difficult but it seems to quickly hits its target spot-on.
linda, i’m glad to meet you. yes this is all new to me and i think i got the grade and stage backwards when i posted as this is very new to me. like you i thought the sweats were menopause coming back on me and my pain doctor was giving me cortisone shots into my back to help with my back pain but they never helped. i had previous back surgeries but this time the mri showed my back was stable. i’m trying to find hats and scarfs as i have a 3/4 chance of losing my hair. have you experienced any yet? losing my hair dosent bother me too much.i did get a flu shot but now i’ve caught a virus my daughter is sick with. i was told if i run a fever i will be put in hospital during chemo. that scares me. i was wondering if they will still start chemo if i’m still sick with this cold virus? take care and write again.
mbh456
mbh456, how are you today? I hope the cold is getting better (mine is, finally, much better today than yesterday, etc...).
I am very glad to hear that you are Stage 3, grade 2 instead of the opposite. Grade 3 FL is a tough deal that gets treated like an aggressive lymphoma but has the hang around qualities of follicular. The grade is a more important predicator of things than the stage for our disease so I am glad to see that get knocked down a notch. Good luck with your treatments and stay in touch when you can, we will be here for you whenever you need to reach us.
Good health,
kermica
p.s. Ross, regarding "if you ever launch a cancer blog, there's your title and theme: "On the Long Side of the Curve", I would do it in a heartbeat if 1. I knew how/where (solvable issue) and 2. I could stop working (I can't unless I get too sick to work, I have a daughter who wants to go Ivy League with good reasons and qualifications). Thanks, though, I will remember it. Be well...K
hi kermica,
I'm still here, just feeling unwell. I'm hanging in there though. thanks for being there for me. my nerves are on edge because of chemo starting up on the 11th. mostly, the fact i most likely will lose my hair. i guess it is silly to feel that way but it is true. my cold is better. I'm glad yours is better too. I've stocked up on jello and broth. i may invest in ginger ale too. although water tastes good to me right now. I've lost 25 lbs so far. i eat a lot but smaller amounts then i used too. i find if i eat till full i get sick to my stomach. is chemo going to make me worse this way. i use phenegren to help with my sick to my stomach feeling. my port a cath is being put in on Tuesday this week. did you have your bone marrow biopsy done yet? when you do let me know the results ok? well, i never thought i would get cancer though i knew it was possible. I'll keep in closer contact with group from now on. i may have gotten stage and grade switched around. i have it above and below the diaghram but the stage is 2 i remember, so grade is 3. i think. i always get them backwards. above and below waist. chest, neck, abdomen, back, and groin. i get overwhelmed thinking about it but i must face it head on to fight it and win. take care. mbh456
mbh, good luck with your port insertion this week. I have tto leave comments regarding chemo and side effects to others as I have not had any chemo to date.
My marrow extraction is scheduled for Friday. I don't want to seem argumentative but if you are above and below the diaphragm you are Stage 3. That means the grade assigned to you is Grade 2. This is a good thing as Grade 3 is treated aggressively but still has the repeater characteristics of Grade 1 or 2 FL. You are better off being S3 G2 than the other way around, as far as I understand things.
Good luck today and with your treatments...good health
kermica
i think i got the stage and grade switched around. mine is being treated aggressively right now. my port is in and i'm one sore camper. my collar bone hurts like crazy. but all in all i'm ready to face this thing head on. my education is this thursday then my first chemo is the 11th. thank you. well let me know how your biopsy goes on friday. ok?
marybeth
mbh456