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New to the site
My navigator suggested that I check out this site and possibly sign up. I have Stage III Hodgkins mutiple sclerosis and have had one ABVD treatment so far with the next one in a week. I am still having ups and downs dealing with the knowledge that I have cancer, but most days, other than not being able to do anything,…
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Last treatment
Well my fellow lymphomaniacs...I am sitting here in an unusually unsettling state, I know I should be happy, jovial etc right now; tomorrow is my last chemo treatment. But I have to be honest with you, I am more nervous than a prostitute in church. It feels like it is my first treatment all over again. I keep thinking…
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And another family member is diagnosed....
I have been on the lung cancer board for the past couple of years as my husband was diagnosed with non small cell lung caner. He continues his fight. His sister was then diagnosed with leukemia and passed nine months later, my brother's wife was diagnosed with small cell lung cancer and passed nine months later, and now, a…
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Hello to Cobra and to everyone.
Hello to all and thanks John for asking about me. I check in when I can and I was so sad to read about Dixie Girl and Nathan that I didn't know what to even say. God bless them both. There are so many of you that I don't know yet and I am sure that is my loss. I see Sue can still be counted on to give and gather such good…
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Hi buddies!!!
Hi to all my buddies, Just wanted to let you all know that yesterday I finished with my last Rituxan infussion YAY for me!!! I'm really happy that I'm done with them, now I just wait for my next CT scan in three months and that's it, no more treatments!!! I was a litlle worried and I do have a question for all those on…
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Suspecious for Lymphoma
Hello, Please find the PET -CT scan results below and guide me the kind and stage of th disease pls? PET Findings: Protocol: With the patient fasting for 6 hours, 10 mci of FDG was injected intravenously and 3D PET CT scan was performed Physiological concentration is seen in the heart,Gut,Brain,Kidneys and Bladder…
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Social Security Disability
I just finished my online application for Disability benefits. What an ordeal--I see why people hire attorneys for this. Monday, I filed the Application for Benefits and printed out some instuctions about what information I would need to file the Disability Report. Tuesday, I assembled, compiled, and recapped medical…
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New Here Auto SCT survivor
Just an introduction - My name is Ellen. I'm 54 and I had an auto SCT in Feb 2013 for transformed FNHL in my CNS. I'm currently in remission. Looking forward to talking. Ellen
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Graft Versus Host Disease - Prose Medical Device
Hi Everyone! I would like to know if anyone out there has heard of the Prose devices for people who have Graft Versus Host Disease in their eyes. How did it work out for them? Was it worth the cost? Thanks for any info that you have. Traci
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Repeat biopsy Friday
My son (Camp Hoizon Volunteer) is having another biopsy on Friday. He had a biopsy six weeks ago and the three nodes they took were negative which we were thrilled about. They waited 6 weeks and scanned again and there was no change. The oncologist said this isn't normal if it was due to infection. He was put back on a 3…
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R-DHAC Update
Hi all, Been a long week and wanted to give all an update. If you remember last I have DLBCL and went through 2 R-CHOP to no avail. My spleen shrunk only 50% and a PET scan showed new nodes in neck, groin, and arm pits. My doctor referred me to Roswell Park Cancer Institute (Area 51 as someone on here called and I've been…
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Epidemiologist
Does anyone know of a lymphoma epidemiologist experienced with Dioxin as a possible cause of FNHL? How about an institute or university that has studied Agent Orange or other dioxins as a cause of FNHL? Thanks in advance.
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Checking in
Hi everyone, It's been a little while since I checked in. I have been reading the posts but found it so very very hard to respond. I felt like I was hit with a ton of bricks. So much loss, it was just to to sad for me. I've lost three close friends since march, and the loss of Beth and then Nathan on this board and some…
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Photos
Hi all I posted some photos on my expression page of me parasailing. Lisha
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Not so good news
So today I got my results from my pet scan and not so good. The Dr said its all gone but there was still a little bit that popped up on the scan. He thinks that its just tissue healing still but he don't wanna take it lightly. So now I meet with a radioligist monday and see if I need radiation. The Dr thinks its so small…
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VINNY, MERRYWINNER AND MAGGIE
Vinny, Merrywinner and MissMaggie, I know you guys have to be out there somewhere. Please post and let us know how things are going. Just an update would be great. Even a smiley face would do. We worry miss Ya' John
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SCIENTISTS SEEK TO REIN IN DIAGNOSES OF SOME CANCERS
Scientists Seek to Rein In Diagnoses of Some Cancers By TARA PARKER-POPE 5:08 PM ET Some of the top scientists in cancer research are recommending sweeping changes in the approach to detection and treatment, including eliminating the word cancer entirely from some common diagnoses. nytimes.com
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Getting on the site
Just wondering if anybody else is having problems getting on the site. I can usually get on, but it takes a while. John
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many questions
Hello everyone. My name is Debbie and I have Stage 3b colon cancer. I was diagnosed June 2011, received chemo and have been doing fairly well since...tiredness never goes away. I just recently had my six month CT scan and will have to have another one in 3 months because of some enlarged lymph nodes. I was hoping some of…
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Rituxan Maintenance without a Port?
I had my 2nd Rituxan maintenance, blood work, and a doctor visit yesterday. My blood is back to normal--yay. It was slow coming up, but got there. All lymphoma markers are normal--yay! My doctor said we need to think about getting my port out. He said that even though it is being flushed monthly, there is still a chance of…
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DIFFUSE LARGE B-CELL LYMPHOMA
I'M VERY NEW AT THIS and cannot navigate this site very well (i.e., AT ALL) Any help would be greatly appreciated. E.g., how do I find my posts, which I think are blogs? Thank you.
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Nathan
This is Nathan's Mom letting you all know that Nathan passed away July 6th surrounded by all of his family. I want to thank each of you for your love and support of my son. God Bless each of you... you are in my thoughts and prayers.
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with Update-Refractory DLBCL
Hi all, If you remember my current onconlogist was thinking of moving me to R-ICE w/ SCT since my cancer did not react after the second R-CHOP treatment. More details in my other post. Anyway, he spoke with the folks at Roswell Park Cancer Institute (luckily on 10 miles from me). I met with a one of their doctors this…
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11 ABVD down and 1 to go.
I remember 5 months ago I wrote a post saying “One ABVD down and 11 to go.”, now 11 down and 1 to go. I really didn’t have many posts but surely I was checking and following posts 1-3 times a week. As I am excited for getting close to be done with chemo, and looking for it to get married sometime within the next 6 months…
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results are in
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PET not so good
Almost 1year in remission. Had cat scans and PET. The cat scans were good but the PET showed a hot spot at the base of my tongue . Sent me next door to have bloodwork done (which came out fine) and set up an appt. wit an ENT on the 31st of this month. Scared, depressed and mad. Want to think everything is fine, but once…
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Refractory DLBCL - Anyone?
I had my second PET scan today. I've only had two R-CHOP treatments. Doctor is concerned that I'm not reacting to treatment like he first thought. Third R-CHOP is suppose to be on Friday, July 19th. I know I shouldn't self-diagnose but I've noticed the nodes along my jaw and in my pelvis the last 3-4 days. These areas were…
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News from Vinny :)
Hi everyone. I received a message/response from Vinny today. He's been taking a mental health break from the site and I certainly understand that - especially with the news of Beth and Nathan recently. Vinny is doing okay having some dizziness and vertigo again and will see the doctor on the 31st. He asked me to say "Hi"…
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new discussion board
A new discussion board is available to report and discuss technical problems. Please give it a try. It is the last discussion board listed on the page with all the boards, please bookmark it for future use. The URL is http://csn.cancer.org/forum/200. Best, Greta aka Your CSN staff
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Today's scan results (Happy Dance Time!)
Got my results and I'm still in remission - Happy Dance Time ! Hugs everybody!