My husband has recently been diagnosed with extranodal marginal zone NHL stage 3 or 4. I have been extremely stressed and overwhelmed with all of the information out there. Does anyone have any news or updates on the prognosis? We are waiting for his bone marrow biopsy as well as the Cat scan results. The waiting is the hardest!
Hi N. I share your frustrations. I was diagnosed a couple of weeks ago, and am also waiting on CT-PET scan results. I can find all sorts of technical information, but have been completely unable to find anything about the patient experience of treatment. From what I can tell, the prognosis is good medically, but this does mean a long-term disease condition. And I can't find anything about what that's like!
I guess it's just up to us to start.
You are right; I guess it is us that needs to start finding more information. We need to stick together and get informed. It is overwhelming looking at all the different NHL sights; it gets confusing. Best wishes to you and we should here all the info. on prognosis and staging Sept. 22. I will be thinking of you as well.
Yes N Tiley-
Waiting is just the worst! You are in good company here...and I recommend you and your dear husband decide to look this in the face, and stand up to it. Attitude means a lot. It is a choice. Smile...and do whatever it takes to put yourself in a good place. It will serve you well. Many good thoughts are being sent your way...and hoping for good information on the 22nd. Let us know.
Thanks Geri. What treatments were you on and how long did they go for? Are you in remission now or still treating? I will let you know what we find out on the 22. One positive in my husbands corner is he is 39 years old, strong, and atheletic so I hope this helps when he begins chemo. We were told at our initial visit he will begin chemo very soon. No radiation; and he will receive it every three weeks for 6-9 months. Is this normal?
N Tiley
Hi N Tiley-
I am smack dab in middle of my treatment. Finally had my fifth round of eight...which was delayed due to low white cell count-not abnormal...it happens during the third week of treatment-the low white cell count that is...My treatment is also every three weeks. I am on the R-Chop routine...ANd it ain't so bad. Really. TReatment has come a LOOOONG way. I didn't lose my hair, although it is somewhat thinner. I have yet to vomit. The first treatment was an eye opener because it takes a LOOONG time! so be prepared with books, ipods, and so forth. I slept through most of it anyway. YOu are given steroids which pump ya up, and give a false sense of wellness, so take advantage of that! I don't know how your husband feels...I was anemic from the onstart, so my energy was never high. I learned to limit what I did, and then one realizes exactly what is important, and who is important. Put yerselfs in that corny positive mindset. ain't so corny. it works. I sliced off dealing with negative people. Nobody needs that....Laugh laugh laugh. dumb movies rock.
Your husbands age is great! And know that he is not going anyway quickly. Enjoy. Organize. Simplify. Eat well and healthy. ANd drink tons of water!!!!especially after treatment to get those toxins out.
I encourage you to read through some of the other and older posts here. Many wonderful suggestions and suppport to help you deal intelligently with this sucker we call Lymphoma. People ask me how I am, and I say FABULOUS. and I am.
Once you get your dx, permit hourself to do more reading. EVeryone is different, and everyone responds accordinly.
Most people have 'something' whether it be diabetes, heart stuff, self-indulgence, bad attitudes(!),and this is just what we deal with. Don't kid yourself and ask WHY ME. It happened, and things happens. It is just the way it is, so use your energy to get over it, look to the future, and waste no time on the what if...
Prayers and huggies :)
Thanks Geri that was very informational and upbeat. You are Great. Best wishes on the rest of your treatment, and I will let you know when we know more from the doc. You are right, put our eneergy on positive attitudes; and look to the future.
N Tiley
Hey guys, I'm 26 years old I have been in and out of the hospital for a month with very bad stomach pain, throwing up..while in the hospital we found out my gallbladder is only functioning 9% and my small bowl in inflamed...when doing my EGD they found extranodal marginal zone lymphoma..I go this week to get another EGD and then we go from there...I have all the symptoms weight gain, no energy, nausea, facial numbing, legs swelling. I'm scared to death. Waiting and not knowing what stage it's in and so on is so freighting. I'm like you guys on the Internet reading but not understanding everything. If you can help in any way that would be great! Thanks
until you really know what's what...you are wasting your precious energy imaging all sorts of falsehoods. NOthing you do, say, feel,, and stress is going to change what you need to know...more testing,,,no biospy? what do you mean 'they found"?
I hope you are no longer in pain...
Speculaltion without enough imformation is counterproductive..cappesh?
I say, maintain a low profile until you know for sure your condition, stage, and what happens next. You're in that twilight zone of the This Can't BE Happening To ME Zone. It's so very very scary..but not as scary as not knowing.
check back with us
When I was in the hospital the first time they did a EGD where they took biopsy of my stomach those results came back showing extranodal marginal zone lymphoma. I have not been for a pet scan or anything yet to see what stage I am...I'm looking for a good doctor, I read a lot of things where people didn't have any symptoms at all, and that scares me because I have been experiencing symptoms for a couple of years but they couldn't figure out what was wrong with me.