Hi Everyone....my name is Mike....I am 52 years old and was just diagnosed with Stage 4 Defuse Large B Cell Lymphoma....I have been healthy all my life and was shocked when a back pain turned out to be cancer on my spine and other places. i have not taken this well...i am terrified...not to mention my family...I started my first chemo treatment last Wed...i am doing my best to cope....any positive tips would be appreciated. Also one symptom of the disease I'm really having a tough time dealing with is the night sweats ......does anyone have any ideas on how to get through those.....I will post a picture soon....and hope to be an active and contributing member
Welcome Mike
You have found an excellent site for information, humor and support. This is a scary time and you will find out things you didn't know you didn't know.
We are a colorful bunch. The Lymphomic Symphony is a thread you will want to check out and maybe join in. Just read some of the previous posts and you will see.
What part of the country are you from? And what is your treatment plan? This is a safe place to vent your anger or share your latest success.
Welcome Mike, I too have NHL DBCL. Mine is a stage 2. My night sweats went away after about 2 weeks. They are very frustrating and it makes it hard to cope with everything else. It gets better. Are you going through RCHOP chemo treatment. I just finished my 5th treatment out of 6 and I'm feeling great. I had a CT scan on Monday which shows the tumor in my spleen has shrunk from the size of a softbal to the size of the golfball. They also told me that the center of the tumor is dead. My biggest piece of advice is to stay as positive as possible, it is hard at times. Surround yourself with those that you love. Laugh when you can. I like to make fun of my cancer. I bought a shirt that says, "I pay my Oncologist big bucks for this hairstyle.' I allowed myself 2 days to get mad/sad and then i had to move on. One day at a time. Do as much as you are able to do in order to pass the time. I work from home for the first week after chemo and spend the next two weeks in the office. It helps me to pass the time and focus on something other than the big "C". I don't like to call it cancer, it is my challenge. I hope that info helps. Hang in there my friend. It does get better!
Welcome Mike and sorry we have to meet for this reason, but glad you found us. Also glad you posted JC and you shared great advice. It takes quite a while to come to grips with the DX, and for many of us it took a lot of perseverance just to get the correct DX. From what I have read Difuse large B responds quite well to Chemo. When you get time their are a lot of back posts by people with your type, so there may be even more answers you can gleen from these personal entries. We are here when you want to vent, cry or release stress. As Stitches mentioned, we have a couple of threads going that uses humor as one method to release a little stress. We all take our DX quite seriously, but as your treatment go on you may find yourself surrounded by some pretty strange circumstances, and some of them may be oddly funny. I think everyone goes through the stages of grief once they get their DX. And like most grieving people we go through these stages at different rates, and often we think we are finally past one stage, like fear and anger, only to have it resurface again before tests scans. I am doing Watch and Wait for my type, which is a very slow growing type that doesn't respond well to the current drugs. So I become quite anxious right before my 3 mo scans. There is a wealth of knowledge among our group and if we don't know something, we can steer you in the right direction. God Bless and keep in touch! KBeale
Hi Mike,
You are receiving good advice. I know that cancer is scary, but you need to be positive and know that you will have great support from this wonderful group. Chemo is no fun. From what I have heard from my doctors, the faster growing kind of NHL is easier to wipe out than the slow growing (I have some of each, mostly the slowing growing B cell). We have a young friend (35) who had the large B cell and after chemo for 6 months was cancer free.
My thoughts and prayers are with you.
Ann
Hi guys- jc1969- Where did you find that T-Shirt? I have to have one. I will wear it to my next appointment! Please try to remember where you bought or ordered it from.
Ok Mike WELCOME! You are in good company all of us are working hard to deal with what we have been blessed to recieve. The initial news is very hard to take, especially if family isn't taking it too well. Along the way things stink on and off but they do get better too. Remember everyone responds differently. Meaning some get sick and some don't, age has much to do with how much you are going to do physically during your treatments and you do need to slow down and take care of yourself and rest so your body can heal. A concept I had problems with.
I have the same cancer and was told it is very treatable and the remission/cure rate is good also. Laughter IS the best medicine and we try to do that also...THIS IS A MUST! It will help lighten the load to say anything here you want because we all understand where others may not. So feel free to vent! And whine, I do! PS I am 57 and other than being more tired (A lot actually) things are looking up and they will for you too. Just keep on keeping on!
Keep us posted...we start to worry about you when you don't post!
Hey Mike
welcome. Being DX with the loverly lymphoma really kicks one in the gut. All of us know and understand what's going on with you. That's what makes this site work well.
First of all-stop being afraid. Arm yourself with information on your particular blend of naughty cancer cells. take a deep breath, lift your head straighten as best you can your body, grit your teeth and repeat after me. I AM GOING TO OWN THIS CANCER, and smile for 20 seconds. If you aren't a "everyday is bee-uu-tee-full" type of person...then think about changing that MO.
NIght sweats suck. Learn to sleep with a towel under you, and on your pillow so when you change yer top, as it will be all soggy. the sheets feel dry. At least you will have good empathy for menopausal women.
None of us wanted this to happen to us, All of us are in the middle our lives, doing our thing, and puttering along when this lousy Lymphoma snuck in. learn to pace yourself with the treatment. take care and write more.
Wow.....I wasn't ready such positive feedback...so quickly....all your comments have helped me feel better....may God bless you all. Day by Day I'm getting better at accepting my situation....I hope to be a regular visitor with positive feedback...hopefully I can lighten things up with a corny joke or two. I live in Salisbury,Md a small town on the Eastern Shore not too far from the Ocean. Thanks to all of you who I now consider friends.
BTW...Two antennas got married. The wedding was pretty boring but the reception was great!!!
Hey Mike,Welcome aboard.If nothing else we can give you a laugh now and again and take your mind off all this crap we all deal with.Nobody ever said life would be easy,lots of bumpy roads but good caring company along the way.Treatment stinks no matter how you look at it.We'll get through that too together.This is a place you can laugh,cry or scream,whatever makes you feel better.We try and pick up all the pieces.Hang in there and get lots of rest&fluids. Michele age56 Dx1995 FNHL3
rascal - I found the shirt on a website
http://www.cafepress.com/+cancer+t-shirts
They have a lot of funny t-shirts and hats.
As a side note, my Oncologist loved the shirt too. They had to take a picture to post on the wall of their office (with my permission of course).
Hang in there everybody. Thoughts and prayers to all of you!
jc1969
Hey jc1969...welcome.
That tee shirt is a riot!
Mike-I loved that antenna joke!
I was 63 when I first had treatment, and had virtually no problems save for the cursed fatigue which gave me an excuse to hang around, get a housekeepr, watch lifetime movies, and be very selective how and with whom I spent my time.
>listen, you are now part of an elite group of incredible warriors. and don't you forget that.
peace
Jc thanks I plan to get one I LOVE that saying. Thanks so much for getting back so quick.
Mike loved the joke...we have a sight called A Sile A Day..Feel free to add to the jokes!
So how often are your treatments? Is it R-CHOP? That is what I am on. Hope the sweats go away soon, if you have to take prednisone you might experience them again with that, I did.
Keep us posted!!
Yeah, more funny people! when I was suppose to have chemo my daughter ordered a bunch of those shirts, including the haircut one. I love them and def will wear them if I have too. Geri, you need to update our symphony, sounds like the bass section is filling out and I will now have company! Speaking of people's ages, one of my trips to Fort Worth to take my brother for his clinic visit, (he is a year older than me) I was chatting with this middle age man when they called my brother to go back. The man looked at me and said, "How long has your son been coming here?" (and this was before I quit coloring my hair) Anyway, I am 55, plus one in two months. We must of all drank the same Kool aid in the 60's! JC love the joke on S.A.D. (how funny is that? Isn't that an oxey-moron?) Well, back to work. (Hey, what are the newbies serving for food when we visit for rehearsal?)
Mike, Rest assured you are not alone. Although I was not diagnosed with stage 4, 2 and half years ago I was diagnosed with Bcell stage 3 NHL. I was terrified too before I knew all the good treatments, knowledge, etc. One thing that helped me thru treatments was I carried a little piece of paper along with me to treatment sessions that said "fight and endure" that and a lot of prayers got me thru the worst. I was fortunate and didn't have a lot of side effects but even if you do, know that there is an end in sight, you will get thru it. Now I'm finished with 2 years plus of all chemo and maintenance treatments, Rituxan being the drug of choice, outcome was desirable, still in remission. Hope your outcome is the same!
Hi Mike, JC and Hollyanna, How are you all doing? Post when u can....take care, KBeale
Hi Mike and fellow fighters, I am also new and starting to dip my toe into a support network. Your email Mike, promted me to try, so thank you. I was diagnosed March of last year with stage 4 follicular grade 2 NHL. It was discovered after a very serious equestrian accident while I was riding a horse in consideration for purchase. Here I am at the top of my career, enjoying my life long passion and the next minute I am riddled with injuries including a traumatic brain injury and oh... by the way in the emergency room they discovered my cancer. Previously, I was the type that was very athletic and seemingly the picture of health, enjoying all aspects of life.
Over the last 6 + monthsI have been undergoing despite trying to heal from the other ailments, a rigorous bundamestine/ritoxan chemo regime which ended recently. May I say... 2010-and 2011 have sucked!! But Mike, I am getting through it and you will too. Anytime you want to chat with someone " live" I am here for you as a "comrade in arms", who also had a very difficult journey adjusting. I am sure your questions are endless on many related topics, just feel free to send me your phone number via email [email protected] ( forgive me in advance if I am breaking any protocol here, again I am new to all this) I was blessed to find many coping strategies and practical tips that may come in handy during your regime, it has gotten me through intact and according to my oncologist very well. I look forward to also finding a wealth of knowledge here with this resource, as I maybe doing maintenance chemo in June for another 2 years to see how long we can hold off recurrence as my cancer had gotten so far before discovered.
To answer your question specifically Mike, a highly credentialed Japanese accupuncturist helped me in so many ways during the treatment and saved me physically and mentally through it. The night sweats I have found relief with a chinese herbal medicine usually for menopuase, that has helped with persistent terrible sweats, fatigue, mood elevation and helping with post chemo brain, called Blue Poppy Originals - "Ultimate Immortals" AND no side effects for me at all. Your oncologist may not agree with this as they tend to push back on taking any herbs during chemo, but at least keep it in mind for after if you cannot get agreement. My oncologist is coming around as he sees how well I did despite my circumstances and now is referring other patients to my accupuncturist during chemo, which I think is a bit funny based on the first response to my idea of working through this process integrating traditional and non traditional medicine. I look forward to being part of this group and also finding some friends that " get it" to also really have a chat with... this sure is tough!!!!!!
Hannah
Hello Mike, It was a big comfort to me when I found this website when I was diagnosed with Stage 2 DLBCL back in November. Reading thru the posts helped me cope and then I knew I wasn't alone! Everyone here has been so encouraging. Marge
Welcome Hannah-Your input about herbs is quite interesting. I found that cooled peppermint tea helped my quasiness.
One thing fer sure, cancer is not, in anyway, partial to a special group of people. It is non-discrimatory. All of us here do get, and altho the circumstances of entering our group is not what one would want...you did find us, and we're glad you did, and you wrote, and here we are.
Sounds like your plate is quite full.
Take care-keep posting, join in the silly forums, and
Peace to you.
Welcome Hannah, you have a wealth of knowledge to share, and God knows we need it! We also love discussions about different treatments, seeing everyone reacts differently. As a fellow horse rider who was bucked off resulting in a broken leg, I feel for you! It is always strange when accidents reveal other things that are potentially worse than the accident. During my follow-up visit for my leg, I happen to mention that my elbows had been hurting and hands falling asleep since a fall I took down some stairs months earlier, well the ortho ordered tests and turned out I had damaged my ulnar nerve and had very bad capral tunnel issues . As a artist, this was really impacting my work. So now I look at being buck off differently. I have had successful elbow surgery and wrist on one arm so far. I'll do the other at later date. Hardest thing for me was to get back on any horse, which I am doing now and most fear issues are resolving. My new horse has been the best therapy for me dealing with the Watch and Waiting I am doing for my SLL stage IV lymphoma. She has been a blessing and when I get stressed I find just talking to her and grooming her I feel so much better. Horses are expensive, but more cost effective for therapy than a bartender! LOL Take care, KBeale
Leave it to you K. Beal to choose a horse over a bar. Good for you, pets are great therapy for children and adults alike. They listen and keep real good secrets.
Welcome Hanah, any input you have will be appreciated, any questions will be answered by a fellow chemo/Radiation survivor/participant. We are a wonderful family and love to be serious and have lot's of fun. This site is great to vent , whine, and cry with so feel free to do all of the above. Anything goes!
Geri do you have anymore pets at home?