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Support for survivor teen daughter
Hello I was wondering if there are any support groups meeting in Connecticut that can help my 17 year old daughter cope. She says that nobody understands how she feels and we can’t possibly relate. I really hope to get her the help she needs here, so her life can have more meaning, and she can cope with having to relive…
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4 vs 6 cycles of R-CHOP for DBC-NHL
Does anyone have any experience or research on going 4 cycles instead of the recommended 6-8 for diffuse large B cell non-hodgkins lymphoma? I found an article titled: (this site won't let me share the link but you can find it via Google search) Treatment With Four Cycles of R-CHOP Is Non-Inferior to Six Cycles in Some…
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Past members
Had some time last night so I looked at some old post that go back quite a few years. I came across a member I kinda forgot about. The name was cobra 666. He helped keep the forum going. Anybody know what happened to him. I had a glitch in my computer back then and then I noticed I did not see any more post from him. Also…
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CNS Lymphoma Newly diagnosed need advice and where are doctors with this specialty - HELP
Hi, I asking for 25 yr old. it looks like he may have CNS Lynphoma. Can survivors tell me how you are doing, and where are the Lymphoma specialist. We are in the Philadelphia area but can travel. Can you tell us the questions we should be asking doctors ? There is some existing comprise to the ammune system. fluid on the…
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Testimonial on how phototherapy helped this patient with Follicular Lymphoma
I was diagnosed with Follicular Lymphoma in 2015 and after chemo and Rituxan treatments I went into remission. This past year my PET scan showed that the disease had returned. My doctor put me on a two year plan of Rituxan every three months of which I am half way through. I'm thankful that these treatments continue to…
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ANY LYMPHOMA LATEST NEWS UPDATES?
Can anybody fill me in on the latest indolent follicular lymphoma news. Every site I go to gives different info. I know they have come a long way in the past few years, but its hard to tell just how far when you are new to the site as I am. I was diagnosed stage 4 recently, but from what I read that is not a death sentence…
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Trying to get help for my sister.
It's tough seeing my sister struggle, especially with young kids to care for. She just had her first treatment, and it's hitting her hard. I'm at a loss being so far away. I want to help, but I don't know how. I thought of reaching out to her community, friends, or other family members for support, but I'm not sure what…
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Essiac Tea
Has anyone heard about Essiac Tea and how it’s cured NHL …I was diagnosed in February for the third time with NHL …..well if you haven’t I’m cancer Free from taking it for the last couple months without chemotherapy
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Looking for those treated with AEPA / CAPDac protocol
My 16 year old daughter was just diagnosed with Classical Hodgkin Lymphoma stage 2a. One of the treatment options offered by Stanford is AEPA/CAPDac. Stanford also refers to it as HLHR13. Consists of 2 cycles with Adcetris (brentuximab vedotin), Etoposide, Prednisone and Dozorubicin. Followed by one cycle of…
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Anyone have any recent info on this?
I have seen this mentioned off and on for at least 10 years. Just wondering if anyone has been in trials for this therapy or discussed it with their treatment team. ***************************** Epub 2023 Jan 26. Targeted Lymphoma Therapy Using a Gold Nanoframework-Based Drug Delivery System Manpreet Bariana 1, Beilu…
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R chop
Hello, My mom started mini r-chop for her lymphoplasmacytic lymphoma with richters transformation . Her first treatment went ok but she had a reaction to one of the meds which was stopped. Her white blood cell count went from 158 down to 29.5 the day after treatment. The number now is up a bit to 58 a week after treatment.…
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Waiting for Diagnosis
Hello, I had a neck CT for a follow up to parathyroid surgery I had in the summer, and the report came back showing "3 x 2 cm pathologically enlarged left supraclavicular lymph node. Pathologically enlarged bilateral level 1B lymph nodes, up to 15 mm in long axis diameter. Several greater in number than size lymph nodes in…
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"To infinity and beyond"
My never-boring, fifteen-year HL adventure has a new twist: I'm scheduled for a liver biopsy in about a month. My enzymes won't play right, and the gastro people want to find out why. I've already had a lot of lab and ultrasound work. It is NOT believed to be malignant in causality. Their best-guess is that it is a long…
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Biopsy journey
Hi, I just wanted to see about getting other opinions on my whole journey I’ve been on for the last three months. The week before Thanksgiving, I noticed there was a big ball formed under my left armpit. Went to urgent care, she said it was an enlarged lymph node. We did blood work and CBC came back showing high LDH, low…
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Autologous stem cell transplants
I'm set to have an autologous stem cell transplant next week. I finished six cycles of chemo and the chemo has beaten the cancer into remission. I have EATL lymphoma which is a T-cell lymphoma. I'd love to hear from anyone who has undergone the procedure. I don't really know what to expect other than the fact that the…
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Husband just diagnosed with MCL
After 6 weeks of testing, my husband has been diagnosed with a rare cancer, mantle cell lymphoma. We are waiting for Mayo Clinic in Rochester to call us. We are in the small town of Ironwood in the upper peninsula of Michigan. Our oncologist is out of Chicago. He said he would start my husband on chemo here, while we wait.…
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Soft tissue Density in Peritoneal
Good evening. Said I wasn’t gonna do it yet her I am. In Aug my Onco ordered CT scan of abdomen & chest due to me being symptomatic -night sweats started in April & now low grade fevers nightly along with fatigue. Have been in remission from FNHL stage 3b since 12/2016. Did 8 rounds of Rituxan for maintenance. the CT scan…
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Anyone else get triggered like me?
I’ve noticed lately that I’m always seeing on tv shows or movies where they say so and so died of cancer. When they do this I always get a flood of anxiety all over my body like an adrenaline rush. It also happens on social media. I will see someone post about how their relative or this famous actor died of cancer and it…
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Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)
Hello, I was recently diagnosed with Nodular lymphocyte predominant Hodgkin's lymphoma. Stage 2a with a bilateral presentation of lymph nodes with disease above the diaphragm. I just started R-ABVD, will do 3-4 cycles followed by radiation. Was hoping to hear from others with this condition and who have done this chemo…
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Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)
Hello, I am really happy I found this site. After being sick for 3 1/2 years, I had a myph biopsy and was diagnosed with SUSPICIOUS for Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL). The doctor says he contacted the pathologist and Stanford Medical to confirm. He says I most likely have had it a long time…
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AITL T-Cell Lymphoma & Returning Rash
Husband had a bad rash all over his body last November with swelling in his hands and ankles. His rash lasted 2 months. He didn't get an official diagnosis until September of this year. He's had 2 rounds of CHOEP and the rash is starting to return. Has anyone had the rash return while on chemo?
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Looking for someone who understands
This is my first time using this website but I just wanted to make a post to see if there was another 21 year old with stage 3 lymphoblastic lymphoma out there who can understand what I’m going through and maybe needs someone to talk to as well.
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Primary central nervous system lymphoma
Can anyone help direct me to a list of hospitals in Illinois that administer high dose methotrexate? My wife was diagnosed with PCNSL in October 2021. She did not do the HDMTX treatment at that time but her cancer has returned and we are considering that treatment option this time. I had found a list somewhere that only…
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Please Share Your Diffuse Large B-Cell Lymphoma Journey
Hello, I was just wondering if anyone would like to share their journey with me and others about having diffuse large b-cell lymphoma. How their treatment went and if they had a relapse or not. If they had a transplant, how long has it been since that happened and how they are doing? If you read the print down below, some…
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looking for similar experiences
I just want to start by saying I appreciate that many of you are not health care professionals and I am not looking for a diagnosis from anyone and also I understand that everyone’s experiences and symptoms are different. I am a 30yo(f) for the last few months I have been experiencing extreme fatigue in all aspects…
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Looking for experience with R2 Treatment, Rituximab and Revlimid
I’m looking for people with experience with 2nd line treatment and R2. I remain with widespread nodal swelling near my stomach, kidneys, IVC and small bowel. The Follicular NHL has been deemed refractive after 8 cycles of G-CHop which ended in April 23. New treatment is advised as cancer cells were found in chylothorax…
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AITCL - CHOEP & Side Effects
For those that have went through treatments with (CHOEP - Doxorubicin, Vincristine, Cyclophosphamide, Etoposide, Prednisone), what cycle of treatment did you start losing taste? Husband is having his second cycle next week and I’m wondering if he will still be able to enjoy Thanksgiving food on the 23rd.
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Weed
Hello All, I have a question! Has anyone here smoked weed or ate edibles during the chemo treatment? At home of course. Just curious if it actually helps/works. Thank you!
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Scared and Anxious!
Hello all, I am a 24 year old female who was diagnosed with Classical Hodgkins Lymphoma in March. I started my 6 cycles of chemotherapy at the end of July and I have had a horrible time coping with my new reality. The first couple of treatments were really rough and though it’s getting better and each treatment gets…
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Frightened about possible diagnosis
Hi all, I'm a 31 year old female. A year ago I was diagnosised with ovarian cysts, and my gyno sent me off for a PET scan to measure the cysts, because they were quite large on the ultrasound. On the PET, an enlarged lymph node was seen in my retroperitineum, and my spleen was enlarged to 15 cm. My gyno sent me to an gyno…