Hi my name is Gina & I have just been diagnosed with stage 3 follicular B-cell lymphoma. Not sure what that all means even though I am a nurse of 27 years & am supposed to be taking care of other people with illnesses not the ill one. I am currently still getting tests done & still have to have a chest ct, pet scan & bone marrow biopsy in the near future which I am not looking forward to. Haven't see the oncologist to figure out treatment yet, but am scared about the side effects of chemo and wondering how I am gonna keep my job which I need for insurance. I have been reading a lot on the internet about the disease which scares the crap out of me, but at least it seeems that there a lot of treatments available so I'm just ready to get the show on the road so to speak & pray for the best. I have been reading other posts from people that are going through the same thing & hope this will help me cope as I start treatment. Thanks for any support.
Hi there I also have Lymphoma and am a RN. I started out working during my treatments and then chose to take a short leave to finish my treatments. If I REALLY had to work through the R-CHOP treatments I guess I could have forced myself but where I work it was very hard to do. I certainly would not worry about that now. Being a nurse gives us enough knowledge to get really scared at what we read but all in all this is a very treatable cancer and the responce to treatment and remission/cure rates are good also.
How can you know the stage when you haven't had most of your tests? Usually the PET and bone marrow will give you the stage. Side effects are variable depending on which treatment you have. Just know everyone reacts differently to treatment and not all the side effects bother you. Some people sail thru with none of them.
This site rocks and there are many of us all with different types of Lymphomas that when all i said and done someone will have your type and be there to share their experience. Our family here are all very helpfil and we are here 24/7 feel free to laugh, swear and cry as we all have done all of it on here. That's why I love this site you can say anything and we understand what you are going through cuz we have been there.
Keep us posted on your feelings and progress and we will help you through it. Check out the joke site we like to be funny and serious because that keeps us balanced and sane!! ((HUGS)) This too shall pass!
Once you are fully DX, and have a treatment plan in place, you will be able to find your way in this maze of lymphoma madness. We all have The Lymph, but few of us have the same kind. I am glad you found this site. There is comfort communicating with others that deal with the same chronic illness, for that's what it is. We live with this, just like others live with heart conditions, diabetes, and other lovely maladies. It sucks fer sure, but you also need to choose to be positive. Peace to you.
Hi Gina, welcome and glad you found us! Your nursing will also help you through this maze with all the technical and medical terms. Also as a nurse you know how vital it is to become you best advocate for your health care and treatment. You will discover that even in treating this type of cancer, different oncologists treat differently. One may want to put you in remission with chemo, while another will say regardless of stage, you have no nodes impacting body function, so Watch & Wait is a better option. Whatever you do gather all your information and don't decide treatment based on fear. Weigh your options base on sound test results. The bone biopsy, which is a pain in the ***, will give you and your Onc vital information which will help you plan your treatment strategies. We are here for you, regardless how you feel and we will be honest and help and answer what we can. Please keep us posted, God Bless! KathyB
Hi Gina,Sorry you have the need to be here.Best place to talk and get all your frustrations out.This can be a long bumpy road,with many highs and lows.I think the ladies above covered all the basis.Just remember its a partnership with the onc but I'm sure you know that being a nurse.Hang in there and keep us posted.Michele Dx95 FNHL3
Wow I am in awe with all the information & support already. Thank you all. I'm not sure how they are staging my disease either because the only tests I have had so far is the CT of abd/pelvis and a biopsy which did not look too good. The weird part about this whole thing is that i found the mass in my abd that moved around & it took my persistance for my primary Dr to believe that I was feeling something abnormal. They kept telling me that it was probably stool in my colon & that nothing bad is moveable & is probably bowel related. I had to go back 3 times frustrated & telling them I am not crazy that I feel something hard & moveable. They finally felt it & here I am with my whole life turned upside down. I haven't told a lot of my friends or coworkers yet, but it does give me relief to talk about it with my family & I am being open with my kids also which is hard. I have a daughter that lives 17 hours from me & she is so worried & just wants to come home now to be with me. This was just not my plan for the summer. Thanks for listening. Gina
Gina-
No need to tell anybody until you actually know what's going on. However, if you tell just a few people...then everyone finds out somehow. You need to look this in the face, and hold your head high, and say you feel great.
Many of us had the same frustrating dx experience. Mine took six months from first lump to final dx. And it turns out, I've had it for years. That sneaky Lymphoma is a silent monster, but we can control it. How do you feel otherwise?
How sad that we need to be so proactive in our health. I feel badly for people that are intimidated by Drs., and find it difficult to question what they say.
Take care and Peace.
Hi everyone just checking in, dont really have any more news, saw the surgeon last week with a view to having another lymph node biopsied from my neck (which is where the last one was removed,) he is reluctant even though this node is quite large he doesnt want to re open the healed wound and feels there are nerves that can be easily damaged. My oncologist is a little confused by my results he feels he is definitely dealing with follicular NHL however the histology doesnt definitely diagnose it! and he wants to be 100 per cent sure because of the W & W approach. PET scan shows hot spots in my neck,chest abdo underarm and groin albeit low grade. I have had two independent tests done on the one node and the results are the same. So I am no more the wiser and my next appt with the onc is in 2 weeks. Gosh for some one who didnt have any news, Ive sure written a lot!
Cheers!
Praying for a diagnosis soon, it is frustrating not to know what your plan is. I would recommend you send your slides else where for another opinion. They don't need new nodes just send the slides that have already been done. I sent mine to Mayo Clinic in Rochester Minnesota as Cancer is their specialty. You need to contact your MD and have him request they be sent and then they will give you a second opinion that your oncologist can work with. Good Luck!!
There ya go Trish leave it up to Rascal she's good with direction.So hard sitting around waiting.I used to say wait for what??the cancer to grow bigger and stonger.Not my bag so thank goodness each relasp mine has symptoms.Best of luck and should it turn out Follicular,not so bad as some others.Take care,MicheleDx95FNHL3