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Increasing pain and lack of mobility
Hi guys. Hoping for some inspiration. I am one year and a couple months out of RCHOP x 6 with MTX X 4 for stage 4 dlbcl. Achieved remission. My issue is the following: My shoulders, knee, both wrists and several other places are in constant pain. I have gone from jogging, hiking, bike riding to just being able to walk with…
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4 Days Post CVP
Hello, My name is Nicole. My 59 year old healthy mother has just had her first round of six CVP cycles. Today is day 4 post her first infusion. There were no complications, discomfort or pain during her session. Her port worked well and she remained in incredibly high spirits. Appetite has not been a concern, nor has her…
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potential new treatment for relapsed DLBCL
https://lymphomanewstoday.com/2019/11/14/fda-fast-track-status-triumviras-t-cell-therapy-tac01-cd19-dlbcl/
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Afraid of reoccurrence
Hi. I've never wrote on a site before. I want someone to talk to and don't want to keep bothering my loved ones with complaints or admit out loud what I am really scared of. I'm 38 now but when I was 20/21 and 29 weeks pregnant I had only 1 swollen clavicle node and abso no other symptoms. I was diagnosed w/ Hodgkins stage…
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Swollen lymph node clavicle
Hi, I'm a new member not new to cancer. diagnosed with fnhl stage 2a and ovarian cancer 3C in 2015. Radiation to abdomen for the fnhl in 2017 I actually just had my onc appt in October. Bloods were good along with CT. a few days ago I noticed swelling (one side) by my clavicle bone. i do have a call into onc but thought…
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Follow Up PET scans
i have not been n here for a few years and it is wonderful to see so many on the “old gang” on here..it has been 4 yrs since treatment with no signs of reoccurrence..I need some advice though. I went with my friend to see her oncologist Friday as she is 7 years past breast cancer, hiking working full time in the woods…
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2019 Seattle T-Cell Lymphoma/Leukemia patient seminar
It's that time of year (once) again. Dr. Andrei Shustov, founder of the T Cell Leukemia Lymphoma Foundation, internationally known T-Cell Leukemia and Lymphoma researcher and clinical specialist, will conduct a free patient education seminar in Seattle on Saturday, December 14th, 2018. It begins at 8:30 Am and runs through…
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hey Po..... just wondering
Are you going to the California Lymphoma Workshop in Redondo Bch this Sat.? I know you do attend many of them? Since it's only a short flight for us, we decided to go. There is a Q&A session if anyone has any pressing ??? Becky
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Organ Donation
I was told that because of my lymphoma I cannot donate organs upon my death. I had been told previously that the corneas were an exception but Virginia says that is not rhe case. Anyone know about this topic? https://www.youtube.com/watch?v=JfBdMXhpQnU Greatest songwriter ofall time. Mark Twain + Shakespeare + Dylan x 10 =…
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Lymphoma Symptoms, Seeing ENT Monday
Hi all. I hope everyone is doing well. I hope this type of post is allowed. About 4 months ago I noticed a swollen node right behind my ear. Went to my doctor who said it was a cyst and not to worry about it. Last week I noticed it had gotten bigger and I had another one behind my other ear. Also one on my neck. Went to…
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Anyone who is familiar...
...with the odyssey I am on may be able to identify with this. Due to extended treatment, radiation and steroids, I had (according to the surgeon) "world-class" catarats in both eyes. In early August I had a cataract removed and a new len$ placed in my left eye to eliminate astigmatism I was born with. Went perfectly.…
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Lymphoma-versary
This morning, I realized that I recently passed the 7 year anniversary, without notice, of my lymphoma diagnosis. (9/28/12) That the day passed without my realizing it, I take as a good sign, one I never thought I would see. Love and healing to all, Rocquie
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Saw my oncologist
Today was my 6 month visit with my oncologist. Expectation was I would go on the annual plan. Blood test are good. We talked about my bowel blockage in August. The first one thta put me in the hospital was in May of 2017 and this one was about 18 months later. The CT scans done at the time showed no sign of cancer. She…
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Newbie
Hello everyone, I am new here and hope to learn from you all. My husband was diagnosed with B-cell lymphoma in July. He's been getting R-CHOP every 21 days, with 8 treatments. The last treatment will be on December 16th. Then we wait a couple of weeks to get a PET scan. After that, they may send him for daily radiation. We…
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Glyphosate causing NHL?
I am a little over a year since diagnosis of NHL DLBCL - 6 rounds of RCHOP-21 and 32 IGRT radiation. Partial response from the RCHOP and complete response after IGRT. I will have a CT scan next month (3 months post radiation) as a final followup with my Radiation Oncologist and then meet with the Hematology/Oncologist to…
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Flying Post NHL Treatment
Hello, I‘m a newbie here but and I can’t seem to get any discernible answers from my medical team. I completed DA EPOCH-R chemo in 2016 but continue to be monitored with PET scans, bloodwork, etc...I handled the treatment well, but now feel like I’m battling fatigue like I’ve never had in my life. It is so frustrating!…
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Pneumonia Vaccine
Since I had a nasty case of pneumonia earlier this year, I asked my PCP for a pneumonia vaccine when I get my flu shot next week. He said I don't meet the qualifications of being 65 ot older (I'll be 64 this December) and I don't have a disease that puts me at risk. If I want to self pay, it's $130.00. My immune system has…
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Biopsy?
Hello! Please let me know if this type of post isnt allowed. I'm just curious about what it is like to get a biopsy done on a node? I am a 24yo female enlarged left occipital lymph node for the past 5 almost 6 weeks, it’s not painful but it’s hard, shaped like a sideways tear drop and non moving occipital lymph node about…
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Questions about Symptoms
Hello! I’m new here and do not have a lymphoma diagnosis, however I have had some very strange symptoms going on and would love some input on your initial symptoms. And even just advice on who to go to for answers one way or another. My mom won’t even hear of it being anything “serious” so I just didn’t know of who else to…
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silly Question
Has anyone here ever heard of a connection between wheat gluten allergies and lymphoma? i spoke with an older woman, probably about 75, who is convinced her lymphoma was caused by wheat gluten. She is an obvious carbophobe and is going on a ketogenic diet which limits her carbohydrate intake to no more tha 20 mg/day. She…
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In remission after a year
Hi everybody. I had my blood work, cat scan, and follow-up and find I am still in complete remission. I just wanted to share some good news. I am really hoping others find good news at every corner they come to with this terrible monster. I am so thankful. I still have many unanswered questions as to to origins and final…
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After effects - the bowels
I know, strange subject. Back in 2015, about 2 weeks after my first chemo I ended up in the hospital with a perforated bowel. There had been a lymph node that was pressing against teh bowel. The chem cause it to shrink which ended up tearing a hole in the bowel. Ended up in surgery where they did a bowel dessiction. Never…
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New here
Hi! I’m new here. Just finished 6 rounds of R-EPOCH and had my PET scan that shows no evidence of disease. However, I think I need a support group because I’m scared to death that it’s going to come back. All I can find is a breast cancer survivor support group. I thought I’d come here to see if anyone had any advice. I’m…
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Maintenance completed
Hi all, today was my last Rituxan Maintenance Treatment! Can't believe how fast the time has gone 2 plus years, really feeling blessed and just wanted to thank you all for helping me get thru the rough times I really appreciate you all more than you will ever know. I don't post much but sure do read this site quite often…
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Checking in
It has been awhile since I have been on the forum. I see a lot of new names and some of the regulars too. It is almost 4 years since I was declared to be NED. I will see my oncologist in Oct. If all is ok she will have come in once a year going forward. I do have some health issues but they are more from age than fall out…
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CAR-T firsthand accounts
Is anyone willing to share their experiences with CAR-T? Any recent news on the topic? I only know the little bit I have read in the media.
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Call me NED
I am happy to report that my PET shows NED. I get a reprieve from appointments for the next 12 weeks.Well, except the appointment to have my port removed! When I started down this path, I didn't think I would get to this point. I was too lost in the details of getting through each day, then each cycle, then each month. I…
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New FDA Approval looks really good!
I noticed this just recently. It's my oncology treatment center and Dr. Hernandez is my oncologist. I feel this is quite a break through and wondered if others are knowledgeable on this new treatment. It seems to have the same basic protocol as Car T Therapy.…
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ONCOLOGYGO
I was looking at available Apps for my Amazon Firestick streaming service, and discovered "Oncologygo", a discussion site for Oncology Professionals. Mostly short pieces summarizing the latest developments in oncology as a whole. A lot of stuff dedicated to the Lymphomas, but mostly seems focused on Follicular and Large-B.…
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Non Hodgkin DLBCL, 3rd relapse after autologous stem cell transplant
My husband just learned that his Lymphoma has returned after being in remission for 23 months after his Autologous stem cell transplant. He has 2 small tumors, one adrenal and one on his hip joint. When first diagnosed he had a tumor wrapped around his bile duct and it was staged at "4". He did R-Chop chemo and it returned…