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New Word
Recently, I said to my husband, "You know that expression 'scatter-brained'? I know what it means". He said, "Um. . .yeah". Yesterday, I heard a new word for it--Chemonesia.
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Stem Cell - High Dose CEB (or CVB not sure)
Hi all, Need a little help here. I'm meeting with doctor tomorrow to discuss my stem cell transplant next month. Remember, I've been through 2 R-CHOP, 3 R-DHAC, 1 R-ICE (second scheduled for a couple weeks from now). They believe my DLBCL is becoming chemo resistant. The plan to start the SCT in early November. SCT starts…
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How are you Liz?
Como esta mi amiga chicita en El Paso? My spanish is very rusty so please forgive that. Hope you're doing well - haven't heard from you in awhile "ten toes smiling"
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Halloween costume
This is a picture of our beautiful 4 yr. old granddaughter, Katie. She's off to see the wonderful wizard of OZ in her Dorothy costume. She needs her basket and TOTO to complete the look though. Mom and Dad are searching for it. Next year she'll have a baby brother or sister to join her with trick or treating (older son).…
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SENATE HOLDING UP CLINICAL TRIALS
I sent the following to my senator this afternoon: Senator: I have been hearing about children whose chances for clinical trials have been halted by Congress. I am so very tired of the political games you all are playing. Senator: I have cancer and am saddened by what you are NOT DOING for sick people, people whose chances…
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Question
Has anyone heard of a very rare condition called Reactive Mesenteritis which can be a side effect of lymphoma?
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Hello, New Here !
Hey ! New here. Reading your posts helps with a lot of questions I have. Thanks ! I am Jason, 40 years old, diagnosed with stage 3B FNHL in May this year. I just did my third round of Bendamustine/Rituxan. So far little side effects. I go Tuesday for my first PET scan to see if its working, kind of worried !? If its doing…
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Cancer sucks!
I wish I recieved better news today. The doc read last week's PET scan this morning. While we've made progress there are still 3 lymph nodes showing active cancer. He believes these are R-DHAC resistant cancer cells. He is starting me on R-ICE today. I'll do two cycles 3 weeks apart and rescan. He is going to talk with the…
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Recurrance of NHL
Has anyone out there had more than two reappearances of NHL and is there anyone in there late sixtys, early seventies who has survived this and can tell me about your treatment etc. Myron
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PET SCAN
I had a Dr. appt. today. had blood work and a port flush. Everything came back fine. I asked the Dr. about another PET Scan since my last one was last November. He said no reason for a scan unless something changes with blood work or lymph nodes happen to swell. Something doesn't sound right. I know scans are not good for…
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Greetings to Shoopy
How's it going today, Karl? Are you still at Area 51? I was wondering about the RICE--any weird dreams or hallucinations? You sound perfectly stable. When will you go home? I know you will have to be extremely careful about infection. I hope it is all going well for you. I just wanted you to know I'm thinking about you…
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DLBCL and LDN ( low dose naltrexone)
Hi. My Dad was recently diagnosed with DLBCL. We don't know the stage yet because he needs to have more tests, but the Dr. says he's at least a stage 2 (with symptoms of sore abdomen, some fatigue and lost a little weight). The Dr wants to get him started next week on his treatment plan (standard therapy, including chemo)…
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Loaded with questions.
Hi everyone, I have just recently joined this forum and many of the comments I have seen here are quite helpful. I am not a patient but am the daughter of one. My father has been diagnosed with CNS Lymphoma and I being a teenager have absolutely no idea what lies ahead. I have plenty of questions to ask evry piece of…
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Early Birthday Wishes, Sue
HAPPY BIRTHDAY SUE !!! I know it's a bit early, but wanted to be the first to wish you a wonderful birthday. Your travel plans sound like so much fun. Enjoy every minute and take in all the beauty around you. When you are in Calif at your sisters, if you have time, give me a call and maybe we can meet for some coffee and…
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Hi everyone, I'm new
A year ago my husband got a cough that just wouldnt go away. He went to urgent care and they did an xray. They prescribed him a steriod because they said he had pneumonia. In December it was back again, so they treated him as they did in September, excluding the xray. He found a new primary care doctor and was referred to…
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Chemo Induced Peripheral Neuropathy with restless leg syndrome
Fellow Lymphomaniacs... Just wondering if anyone else suffered or suffers from this? Mine started out as a sore back, moved to sore hip, progressed to numbess in my toes and fingers and the entire body having that restless leg type syndrome. Now, I am at the point where I am getting foot cramps and my entire arms are going…
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R-CVP versus Bendamustine-Rituxan
Which one is the "best" I was given a choice. Now I am hesitant Care to share your experiecnce. Many blessings to you
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Is Sue Lost at Sea???
I starting to get worried. Do you think maybe a gigantic salmon got Sue. JOHN
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Just looking for some advice about my 3 year old son...
I'm new to this site and joined because I just wanted some advise from others and I want to say that my son is currently not diagnosed with cancer and is under a doctors care! My son is 3 will be 4 this December and i will give a little of his history from this year. Early January he had gotten the flu 3 times and…
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GKH and eye problems
GKH, In an earlier post you mentioned you were having eye issues. Just wondering what kind of eye problems are you having. I have developed dry eyes and was wondering if it was related to the chemo or not. John
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YAY! scan results all good !
I'm new here, I introduced myself below in "new here" I think... you people are amazing ! So I got my pet scan reults today and I AM ON CLOUD 57... ha. I am on third round of bendamustine rituxan. Its working, I have a 50 ish percent of shrinkage of all my tumors... yay... and she wants me to do three more rounds of the…
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Jims snake eradicator
Jim, I don't know about that snake eradicator thing. I was fishing last week and all of a sudden I saw a rattle snake coming at me with a frog in its mouth. I did as you said. I took out my bottle of JACK DANIELS and poured it all over its face. He dropped the frog at my feet and scurried off into the woods. 15 minutes…
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EPOCH R/neulasta misery still going on
My mom has been miserable for 2.5 days now. Nights are tough. I know neulasta causes bone pain, but she also has major abdominal discomfort. Side effects The neulasta and oxycodone 5mg cause abdominal pains too, but she has been miserable. We emailed the doc and he said take pain med every 6 hrs instead if 12. We have no…
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Nhldaughter
I'm not in synch with things lately lost my wonderful Dad last summer around this time, but I've noticed nhldaughter we havent Heard from lately... Hoping her mom nd they're all doing fine... Wishing the same for everyone else here. There were some starting sct haven't heard from them either, the lady with long wavy hair…
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DLCBL R-chop pneumonia
My husband is 74 yrs old and previous to the diagnosis of DLCBL he was in good shape. He has had 5 R-chop treatments but has ended up in hospital 3 times with temps. He received neupogen shots after the 2nd chemo. Now after #5 he developed pneumonia that was initially thought to be PCP but then after a bronchosope that was…
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Updates on everyone
First and foremost, my apologies for being M.I.A for almost a month now I thought it would be kinda cool to have a link open to any and all that can update us on where you are with your diagnosis, treatments or remission< this is partly due to laziness or lack of time to research my LYMPHOMA family on here. So any and all…
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Checking in
Hello Dearhearts It's been way too long since I said hello. I do follow all your posts, and keep you all close. Summer has kept me very busy, flying cross country multiple times. I am in the midst of planning my next flight. Ugg I have been buring my head in the sand, and trying to avoid docs and tests and everything that…
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Dropping By
hey everyone Sorry its been a while since ive been here but the last two months ive been traveling like crazy with work. Anyways its been a little over a year since I had my auto stem cell transplant or DLBCL and im doing well. Been dealing with allergies and sinus issues but hey that life right lol. Hope you are all doing…
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Rituxan only
I have searched the posts here and only find Rituxan taken with the other chemo drugs or as a maintenance after chemo, has anyone done just the Rituxan as a first line of treatment? I have been doing wait & watch and have not had treatments of any kind. I am stage 3 grade 1 Follicular NHL in all my lymph nodes and a spot…
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Does anyone know
Hi Its driving me crazy but does anyone know of anyone who has survived slow growing indolent non hodgkin's lymphoma for twenty years or more.? Nobody seems to be able to give me an answer. I know its treatable but for how long? Any help would be appreciated. Richard