Since our group seems to be growing, and the most important question that a new person has is -- who are these people? -- I thought a new thread would be appropriate. Please tell not only what kind of cancer you have and what kind of treatment (and has it been successful) but where you live, married/single, do you have children, and in general what had you been doing with your life before cancer took over.
I'll jump in here Deb hehe ..
Well before lymphoma and my myriad of depressive items popped up
in my life I was a mom and nana, truely happy working at a truckstop
as a cashier, tons of friends and laughter galore.
I'll cut out the middle section and jump straight to the lymphoma ..
Jump ahead 7 years from then , I was depressed and alone .. got rearended
by a car and decided to get checked by the ER to make sure my back
was ok, was taking my shower and felt lumps on my leg .. hmmm ..
might as well ask about those while I'm there ..
WELL ! Lecture was me, the accident got tossed aside and the doc was
all over me about the secondary lumps.
After the usual formalitys I found out I had
follicular lymphoma, stage 4, widely spread groin, leg, chest, abdoman,
and after much shock began the Lightest form of tratment available.
Was testing the water so to speak until I got my witts about me and
hopeing to buy myself some time.
well the leg got HUGE like pillsbury doughboy big, and turned nice
shade of black.
And in my bedridden state I researched online and found an angel
on here ... ROSS!
He was my first ray of hope and encouragement. that was aug. 27. 2009
my hubbys birthday :-)
I am married to a awsome man, I have 1 gr-child i can see
a son who is struggling trting to find himself ( alcoholism ) ex-army
4 gr-kids whom i dont see and a daughter passed from cervical cancer.
I take pill form cytoxin every 3 weeks with prednazone...we recently
tried a w &w to see if i could have a vacation but it was immediately
apparent that was not gonna happen as it was back within the first month.
This might seem long winded but it is my very shortest version (giggles)
It is awsome to see active converstion going on here now as it use to
be hit and miss before. I am proud of how far this site has come :)
God Bless Deb.
I agree good point Deb :-) glad to be here you all seem so nice :-)
Well Frederick, you are now officially part of our group. Tell us about yourself.
And thanks for writing, Linda, that was exactly what I wanted -- a record of who we are and what we have been through.
I will write mine tomorrow. For some reason, I am very tired tonight.
My name is Ross, I'm a Californian stuck in Texas, by profession I'm a freelance journalist and writer, I just turned 40, so far, to my knowledge, I've never had cancer of any kind, which would normally position me as the least capable moderator of the lymphoma boards here, which is what I am anyway. In fact, these may be the web's only boards dedicated to lymphoma not moderated by a lymphoma survivor.
This doesn't mean my life hasn't been atrociously impacted by a lymphoid cancer. It has. This does mean I probably lack some empathy- I can't commiserate with you about the ****** details of lymphoma treatment. But I will go to the mat for you if you ask; I've been an ad hoc health care advocate many times and have zero patience for the arrogance of doctors and nurses.
I have masses of resources at my fingertips. I'll run down answers for you, just ask. It's impossible for me to catch every post here, but I try. If you think I should know about one, PM me about it.
Beyond that I'm married, no kids, four cats, and I am a hockey freak.
Hi, I am Kathy, a nurse by trade. I am 57 and a survivor of Hogkins Lymphoma, Breast Cancer, and Lymphoma. The last 2 within the last 5 years. It's been a wild ride but as of right now the PET scans say I am cancer free!!! I am divorced but living with a very supportive boyfriend, who has been there to help me thru the last 2 bouts of cancer. I also have 1 daughter, grown, 3 cats and 1 rabbit . We all live in Wisconsin.
I have lot's of empathy and medical knowledge which I freely hand out but not to exclude that you should ALWAYS follow up any concerns with your Oncology MD. I understand the ins and outs of the medical system can be very frustrating and some MD's aren't the best at communicating what you so desperately want to know, with that I can lend a helping hand.
The breast cancer was discovered by a routine Mamogram. I had no lump or any signs of one, no family history either. DON't ever skip your routine exam! I almost cancelled this exam. I finished 2 years of chemo and preventative chemo had 6months reprieve and discovered Lymphoma via a swollen node in my neck that did not hurt. (Bad sign). I recently finished 6 rounds of R-CHOP a nasty one to have to do. And am now working on regainning my strength back so I can go back to work very shortly! I welcome any new cancer members!!
Hi All
My Name is Frederick Sperry aka Skinny Ginny,
Well I was diagnosed in March 2010 with stage 4 liver cancer and was basically told by the liver specialist , that he couldn't do anythin for me, told me had maybe a year to live tops 15 mos. well I couldn't get chemo, couldn't get radiation, and sent me out on my way with doom hanging over me, but to top that off he also said I had Hep C, HELLO... train wreck coming up .. so wentt to oncologist at the time it was a mass of 10.8 cm by 8. 4 i think, Oncologist decided to try Nexavar a cancer fighting drug, well in the last 16 mos the tumor has shrunk to 8.5 x 6.2 appx. and I am holding to a slim 184 lbs. and liver still functionin good, well anyhow that is a run down, and i love to write poetry because it does my body good and my soul
thank you
Frederick
aka Skinny Ginny
WTG ! Skinny Ginny
Give them hell and show them what your made of. Congrats hon
I feel so good on here you all are so supportive and upbeat does my souls good, thank you .. and ty nana :)
Frederick
My name is Debra and my story is a little different than most. I was diagnosed with non-hodgkins Lymphoma in 1991 (I do not know what type under this new classification system). It is easy to remember the year because it was right after my son was born, and I was "lumpy". I kept going back to the Doctor and he kept saying that everyone was lumpy after giving birth -- but I knew something was wrong. FINALLY, five months after I gave birth they diagnosed the lymphoma. I was put on oral chemotherapy. After six months, they were coming to a turning point when the chemotherapy wasn't working, and if I stayed on any longer I would develop a tolerance. They tried a stronger combination and it worked, but unfortunately it put me through pre-mature menopause (being on chemotherapy for ten months total!) and I couldn't have any more children (now-a-days they can do a lot for that, but back then they couldn't). Well, I was just glad to be alive, I guess.
I have had two relapses since then (at first I said one, but I believe it was two -- it is difficult to remember). For both, they put me on the same chlorambucil and prednisone (figuring that it worked once, it would work again). The last relapse was four years ago.
The reason why I am here is that I am sure that it has re-occurred again (one knows, one knows). The soonest Doctors appointment I could get is July 22nd, and rather than sit and worry I am here getting encouraged. I feel able to face an unfavorable diagnosis.
Oh, I am divorced with two sons -- one is 20 and the other is 26. I earn a living as a math teacher in a High School. Isn't this fun on my summer vacation -- HA!)
Deb
A Huge gentle hug to you hon. I am so happy to finally read your story and I can certainly relate to your concern over having to wait for an appt., theres no reason they couldn't fit you in really but as we are all aware in lymphoma area, your not considered a hurry. We are only chronic.
Only 6 months on the oral? ouch .. certainly you know your body better than anyone, I pray you can find a treatment ( if needed ) that is well tolerated.
Please stay in touch as we do need each other and more than we even
realize i'm sure.
Thanks for your support and the hug, Linda.
No, thanks for pointing out that my story needed clarification. Six months was the turning point, but they continued and I stayed on oral chemotherapy for a total of 10 months (the first time). Its difficult for me to believe that I did all that with a new-born (remember I diagnosed right after my son was born). I guess its only made me stronger!
No Deb
I could never in my wildest dreams imagine what you went thru...my heart aches at the very thought of it. You MUST be the strongest person I've ever met .. GOD Bless you hon
Debra
Yes. as a group-we can help you get through anything.
POWER IN THE NUMBERS
how fitting for a mathy teach!!!
and Skinny, Nana, Ross-thank you . I have a better sense of the names and piccys.
Yes I am going to post My Story.
My name is Geri, mispronounced with a hard G like Gheri. i was born in BROOKLYN!, but grew up in Western MA. I admit to getting a tad lost in the purple haze of the late sixties. :) The love of my life found me at age 34, but we did not get married until I was 40. I am now 64…. ACCCKK!
I started professionally as a teacher, but switched to the library because one did not have to be so stern. The path of least resistance has always attracted me. I took early retirement from being a public servant, I mean librarian, and then found the bestest job in my life, as a less than part time school librarian in a K-8 private school. I loved my students, and realized my talent for reading a-loud and mesmerizing children with just the sound of my voice. I also taught them how to get the most out of a library, and we had FUN.
Cancer was always part of life in as my grandmother died of colon cancer. And my astrological sign is on the cusp of Gemini and Cancer.
I have always been healthy, thank God, but I will say that when I did get colds, they would last forever.
At age 59, in 2006, I got summer laryngitis, and a lump popped out on my neck. I immediately did the research, and realized that it was unlikely I was the one in a million whose lump was nothing. Nonetheless, I patiently waited the six months until the Drs. tests and biopsy confirmed my thinking. Why I had to be right that one time… When the surgeon took my hand and told me I had lymphoma, I replied, “Yes, I know.”
Stage three, B-cell marginal zone indolent is what I have. A stinging insect(not a mosquito) set off a lymph node crisis. I had treatment in 2010, and got my lovely neck back from the lumpolicious monster it had become. I lost my dear, 18 month older brother to lung cancer. He was dx eight months after I was, and after nine months, died on my birthday. His anger overshadowed everything. The loss of my brother made me choose be happy, and silly, and do whatever I need as to do to keep life that way. He was so angry about his situation, and I did not want to be that way. My mother is turning 98 in Sept., but doing physically poorly, and does not know about my cancer. She does not need to know my brother’s loss pushed her into congestive heart failure.
I found this SG after I started treatment. I choose not to kvetch, well maybe a little, and have found a wonderful group of caring smart, clever, and wonderful people from all over the world, all standing up to the rotten, lousy, stinking or farshtunkeneh (far-shtunk-en-eh) cancer, and giving me new inspiration to document my offbeat thinking.
Geri
This was such a wonderful idea as we are finding we have so much more
in common than this stinking cancer, the parts of life that we could certainly do without for sure.
I lost my Dad and step-brother to lung cancer, its a tough one to say the very least. But moms alzheimers was by far the worst one, god forbid, I don't wish that on anyones worst enemy.
Your strong and sweet and I'm so glad your taking a path that leads to peace rather than being torn by anguish.
I too admire everyone on here and love reading and getting to know you all it makes a me humbled to hear some.
Thank you for sharing.
Im Tony and i live in missouri. i just turned 53, never been married, havent any kids and life sucks big time........... (what? how can that be?!)
i was first dx with this miserable lymphoma in august of '09. i had a bump on my head, and it hurt! so i went to my internist of 15 years and showed him. he didnt think too much about it, and gave me some bactrim.
i, at that very moment, noticed that my neck had a lymph node that was a little swollen. i figured it was from the head bump, right? well the doc checked it and said that he wanted to have it biopsied. whaaaaaa?
biopsy comes back in a couple of days. "small lymphocytic lymphoma." say who? ok, so now its on...........
i go see the onc and met my team. "oh, this is easy to fix. theres no cure, but it can be treated and dealt with. youre not gonna die" well that was good news. so lets get this chemo thing overwith and done so i can go back to whatever it was i was doing.........
started the de facto treatment, and after 4 months a scan showed no results at all. on to the next treatment which was "treanda" basically a leukemia chemo drug. eight agonizing treatments and three hospital stays later, i had what they called a "positive response" they dont use the term "remission" apparently.
after recovering from the dreadful treanda and hospital stays (one for methemoglobinemia... look it up!) for 10 months i find out that the lymphoma returned in march of '11. so im right back where i started from, with the extra added attraction of having breathing difficulties because of either the rituxan or the treanda. my moneys on the treanda, but i know someone who has breathing issues from rituxan......... so who the hell knows?
i have an appt. with my onc doc on 7/20/11 to see what we can see. he told me that he doesnt want me to have any more chemo right now. he wants to deal with the breathing issue first, which **** well better be temporary.........
my thanks to everyone whose path ive crossed and who gave me advice, comfort, support, and a laugh or two, because i am full of rage that i have cancer and nothing in this universe will ever change that, exept a cure.
special thanks to Ross, who helped me very much throughout my ordeal.
i just want to be ok again. ive never been sick in my life. i dont even know what the flu feels like.......... i want my life back.
thanks for reading!
Tony.
Tony –
some CLL info came out of the June conference on malignant lymphomas, i’m going to consolidate it for you and i think you should bring it to your 20 Jul appointment, just get your doc’s take on it, like info on radioimmunotherapy for CLL/SLL.
by the way, Christian Lopez, Yankee fan who caught Jeter’s 3k hit, right now has the quote of the year for me. When asked why he just gave derek the ball instead of cashing in on it?
“Mr. Jeter deserved it.”
My jaw hit the floor. You could write an essay on how to lead an honorable life by extracting the principles those four words espouse.
shocking maturity from a 22 year old.
ross
Tony:
Thank you so much for sharing. Now I understand your thread. It is good for me to hear the whole story, rather than the bits and pieces that I've been picking up.
Let's hope for a good report on the 20th.
youre welcome Debra. yes i am hoping that there still is a chance for me to come out of this relatively unscathed…
i will let everyone know how it turns out. i’ll prolly have a scan either that day or the next. that will tell my onc a lot, but nothing he doesnt already know.
what he does is what im watching out for…