Newly Diagnosed with NHL

Hi Everyone, I have just recently been diagnosed with low-grade Marginal Zone B cell lymphoma. I have had a CT Scan, Bone Marrow biospy and blood work. I have one small node in my neck and my bone marrow is affected, 5% at this point. I am on the 'watch and wait' program at this time. I go to Mayo Clinic in Phoenix. My doctor does not believe I need any treatment at this time as it could do more harm than good. It is scary to know you have something wrong and not do anything about it. Lately I have been having pain in my wrist and ankles, sometimes toes too...I wonder if this is related to my lymphoma. I don't have any fever, or night sweats. Has anyone had such symptoms? I do get tired somedays easier than I use to. I am just so confused.
I go for my next set of bloodwork in 3 months. I was diasgnosed in May and it was a total surprise. Thank you for any help and support.

Welcome- Watch and wait has to be one of the worst things to do. I feel like you I want it out and over with. As far as the symptoms you are feeling I would call the triage RN in the cancer center and discuss this with her. She will advise you what to do. If you need an appointment one of the things I would talk to the MD about is what to watch for, what to worry about, when to call in with things. That way you will have better guidance as to what is going on, and whether to worry. It is hard with your diagnosis as your bone marrow is involved so the discomfort you have very well could be your cancer speaking up.

Good luck...Call and keep us posted, we worry about our friends!

Thank you rascal1 ... I did call my oncologist office and I am waiting for a reply....I hate waiting and waiting, it just never ends. So hard to gauge what to worry over and what not to...this is all so new. I'm with you just get rid of it and let me be done with it, but that won't happen with this type of NHL. Good luck to you too.

Welcome to our small but quite supportive group!

You will find much support and fun here.

So that I know who I am talking to, what is your name? Are you male or female?

I am Debra, originally from N.Y., living in Virginia, in my 50's, diagnosed with lymphoma 20 years ago with a relapse in between and now waiting to go to the Doctor as I think the "monster" is back (won't know until I see the Doc).

Pleased to meet you.

Hello and welcome.Sorry you have the need to be here.Very surprised your dr is waiting but then all do things different in all parts of the country.Very hard waiting.Thank goodness I always get itching when mine returns and we do treatment depending on the nodes involved.Just get to know your body well but don't over react at every little thing or you'll drive yourself crazy.Keep us posted and join us for some fun to pass the hrs.Michele Dx95 FNHL3

oh that watchin' and waiting' and waitin' and waitin'...
It's hard to get your mind over the do nothing part, but, on the other hand, it gives you time to learn about what you have, and hey! we have the same thing! which is unusual as we are a priviledged small group with this indolent marginal zone crap. You may find that your aches are totally unrelated, and it is just that you now have this heightened sense of awareness of everything that is going on in your body. Attitude is important here. I encourage you to read back through the older posts-there are some on that dang watch and wait business...and keep posting.

Thanks everyone. I do have the itching symptom. Dr. says I am at such an early stage they WILL watch and wait. Hate it, but what can ya do. Hopefully I will hear from my oncologist in the morning with what I need to do with the aches. You are so right about attitude, sometimes I get down and then realize it is not going to help one bit, so I pick myself up and say 'be positive and stay active. Dr. said I could go 7 months with nothing more happening or 7 years, just depends on what it wants to do in my system. Yikes. The indolent types sounded good as it was a slow growing type, but then you are never over it, it is always going to be with you, waiting to strike. Lots to learn and deal with.

Oh Debra425, I'm 61 and female and was always healthy before this hit. No idea where it came from.

Jebmeb-
Hey I was close to sixty when I was DXed. I learned to relax with the watch and wait stuff. After all-nothing really was different, except I had these lumps on my neck. Over time, I became more and more anemic, so being tired was just something I dealt with, and bedtime became earlier and earlier. I admit, that I also used the time to get my affairs in order, clean my closet. and also, albeit sheepishly, a WAY OUT of doing things and being with people and talking to people that stressed me. hey. I even pulled the cancer card to get out of a traffic ticket. I know I know. I am not proud of that one. However, prioritizing stuff in my life was a good thing. I would probably still be on the fence about treatment, draggin' my sorry arse around, wearing scarfs to hide the lumps, and no longer wearing neck jewelry, when I got stung by something wicked, and went into a lymph node crisis. Treatment was not at all like my nightmares, In fact-it really didn't change too too much, except that my husband got me a housekeeper (yea), he did more food shopping and stuff (hee heee), and I watched a lot of LifeTime movies, spent lots of time on the computer doing research, and finding this site where I have been addicted, I mean, participating ever since.
Keep in mind. Every single person on earth is terminal. We just now have something special-a Chronic Disease, that helps us enjoy more life. You will learn to smile, and shock people when you tell them that you, are the new face of cancer. Stop saving the good stuff for a special occasion, and glam yerself up. Every single day is a special occasion. Clear out the stuff that doesn't make you feel terrific. You will be just fine. You already have the foundation for the Right Stuff, and feeding the soul is just as important as feeding the body with healthy, delish anti-oxidants.
So wipe those tears away, They'll ruined your eye make-up.

Jebmeb: I always say that I am in perfect health except for cancer (HA!) Really, I never miss a day of school and I can't remember the last time I got the flu. So, look on the bright side.

Geri: Those words were great and for me also. I must share with you something my friend said this morning (and it is in line with what you are saying now). He is several years older than me (and I am in my late 50's). He said that I act much older than my age and definitely act much older than him -- to put it another way, he said that although I look younger than my age, I act older than my age. Not exactly a compliment. And then I read your thought (and they weren't even intended for me) and realize that your words are true.

When I am asked about my medical history, I am blessed that i say no to everything. Then I come out with...I'm very healthy except for a touch of Lymphoma.

I should feel blessed at this point as I am only dealing with a 1.3 centimeter node, very small...except for the fact it is in my bone marrow. You are so right about being sensitive to everything about your body, every ache or soreness...Everyday is different from the previous one, that is for sure. I am learning to deal with it. I stay very busy too, doing volunteer work with elementary kids in a Wildlife Habitat Program. Just love it. A good husband and lots of friends that give wonderful support.

It sounds like you have a good support system and plan. Positive attitudes and busy lives whether it is on here helping others or where you are working with children. It is all positive and constructive. BUT when life gets you down and you need to vent or ask a question come on back and join us, we have all been there and felt that so we can render the knowing support you may need. Meanwhile please continue to share and keep us posted as we worry about our friends!

Jebmeb:

Please join the Lympho Group at the Lymphomic Symphony thread. We are all there, sometimes enjoying the pool, having a good laugh.

Oh I meant to tell you that when I lay medown to sleep, I get tingling and some sort of weird feeling in my toes and feetsies. I flex my feetsies, and make it go away. Almost like a numbness of sorts....is that what you feel?

U two crack me up! Luv to rea your conversations. Luv the extra care u get!! Ha! I'm 47 & haven't had a period since I was 40 ( I followed in my mothers footsteps w early menopause) my husband usta tell me to go to bed when I bled. Said u must b tired?! Ha. I was much to busy then but now I guess his patience is thinner cause I no longer hear him say that. He watches me carry groceries in most times because he took on a full time job to cover us w health insurance. Keep on keeping on!! I used someones expression at my Hershey appt I learned on here "watch & worry" instead of watch & wait;p take care y'all!!

We are having another Parteeeee come join the fun. We like to play and it really relieves the stress.

Watch and worry how appropriate!! Would be nice if it wasn't true!!

Come join us!

Welcome jebmeb. This group is fun to follow! How did u find out u had cancer? I was told it could b in ur bone marrow but depending on where they extract it from it could b beside it. So it could b in my marrow even though the results there were negative? Any feed back anyone?

Hello Jebmeb, welcome, have been on the W & W for over a year now. I have SLL/CLL IV and none of the usual symptoms, but tons of imaginary ones. I say that because whenever I tell them my issues they are written down, discussed then we move on. None are bad enough to warrant chemo with it's side effects. I also have less than 5% in my bone, and on my last visit I asked how much do you need in your bone before treatment. My Onc said the luekemia docs don't even talk about treating till 45% so as slow as this grows I am safe for decades. Which brings up the point of dealing with the waiting issue. I did three, 3month visits, with scans, a 4 mo and my next one is been moved to 6months, meaning less scans. The first 3 mo I was a nut case, and things have improved since then. (though I am now permanently a nut, it is quite enjoyable) Now my goal is to never need treatment! Before I was always waiting for the other shoe to drop, now I just stay barefoot, enjoy life and plan on being one of those lucky people who never need chemo. I avoid crowds, but if I have to fly etc. I do lots of hand washing, and move away from cougher's. And when I go to Walmart or grocery stores I use the wipes, in fact keep them under my hands. hope this helps, and as Geri said lots of good info on old posts, especially on how we handled the W&W. Take care! KBeale

Curious...?...5% in ur bone marrow. How were ur ct's & bloodwork results? Mine wasn't found in my bone marrow?...wonders me if it is if it's in all of it or just spots & they might not remove that particular area??

I think that is always an consideration. My Onccy. was clear about telling me that very same thing, Kellie...My bone marrow was clean for my two jabs. One at DX, and one after my crisis which put me into treatment.
I think you just need to go with the no evidence of c-cells conclusion.