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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…
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Watch and wait.
Well, back again. I have been away from forum for quite sometime. Wishing everyone blessing and well wishes Life has had major changes & I finally have a bit of time to check in. Unfortunatly I have needed several CT scans and a new Oncologist due to moving cross country & new developments in my original sight of diagnosis…
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Old member...
Has anyone heard from crittermom ? She last logged in two years ago. Someone asked about her about a year ago, and someone else had an update, but I do not recall who.
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Question about Biopsy
Let me start by saying that I have not had any diagnosis. I presented to the ER with lung pain upon inhaling after several weeks of battling seasonal allergies. I was having a hard time breathing and being almost 50, the pain worried me about clots. Ultimately, they did a CT scan and while they found no clots (nor any lung…
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T Cell- what to expect
This is my first post- hi everyone. My mother was diagnosed with lymphoma over a year ago. She went through 6 rounds of chemo, a month of radiation and a surgery to remove the tumors under her arm. Unfortunately, the cancer survived. Her wound is still healing, but the doctors at U Penn and MD Anderson (they are working in…
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Did anyone work in the printing industry or cleaning business where Benzene was used?
I recently was reading online a report about the effects of inhaling Benzene over a long period of time. Seems that printer's ink contained benzene and the cleaning chemical used on printing presses also. I have worked in the printing industry for many many years and always wondered about those chemicals, if they have had…
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Been awhile
Been awhile actually a long while since I last posted. I'm down to my last Rituxan treatment .Finished 12th one today 1 more to go in August. My latest CT scans show NED....My insurance has fought all scans for past 18 months so wasn't really sure how this was going to turn out, I just put everything in the hands of the…
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MCL with a serious skin reaction after Bendamustine...later found to be allergic to bactrium
My 67 year old brother was diagnosed with Mantle Cell Lymphoma back in January. He has had two treatments of Bendamutime/Rituximab (sp). He had started to get a little itchy after the first treatment, now with the second, he has developed a terribly itchy rash on his arms and back. This has been going on for about 10 days.…
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I beat Hodgkin's twice but I thinks it is back again
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Preparing for my last chemo
Can't believe that I have come to this point in my treatment but I will have my last chemo in the next few weeks. In all reality, Ive been very fortunate, able to work most of every week, no serious side effects, etc. It's not been a walk in the park and I wouldn't wish this on anyone. I am looking for ideas to thank the…
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Newly diagnosed- needing help and advice
A family member has recently been diagnosed with stage 4 non Hodgkin’s lymphoma. Age 74. Chemo starts next week and I’m wondering what I should expect And how I can help. I’m scared to death. Any advice, info, experience, etc Ginger
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best things to eat to boost WBC?
Hello, I posted before about hair and ABVD trreatment, I have since shaved the rest of my hair that was left. I have stage 3A Hodgkins Lymphoma and I have had lots of complications from side effects of my ABVD treatment, ended up in hospital etc. I had pneumonia heading into this as well so my lungs are damaged anyways and…
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Lookin for Suggestions for Metal Taste in Mouth
Assuming many who have had treatments have suffered from the side effect of the metal taste in the mouth that will not go away. Any suggestions on how you are dealing with that or dealt with this in the past are appreciated!
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Pet scan
Hi all, I'm new here and am wondering if I should seek a second opinion out. I just got back my pet scan results and my dr said we need a biopsy done but when I went in for the biopsy the radiologist decidied to do a ultra sound instead and said you dont need a biopsy you are fine. My pet scan came back as the following:…
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Survived more than 30 years
My sister has been a hystiocytic large cell non hodgekins lymphona survivor for 35 years. I am searching for a research group that has some answers to the effects of the radiaton. She has had over 6000 rads of radiation and it is taking it's toll on her. Need to find a doctor to help her out of the constant pain she is in…
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Marginal Cell
Hi New to site. Diagnosed end of 2014 with Marginal Cell lymphoma Stage IV, had Rituxan felt good after 4 doses and Igm came down. Have had 2 episodes since then one treated with Imbruvica and latest one with another 4 doses of Rituxan did not feel to good on either. My question is has anyone experienced brain fog.…
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San Franciso T-Cell patient education seminar June 8th, 2019
The T Cell Leukemia Lymphoma Foundation will once again be presenting a patient education seminar in San Francisco, California. It will be held on June 8th, 2019 at the Hotel Nikko in downtown San Francisco. The primary speaker will be Dr. Andrei Shustov of the Fred Hutchinson Cancer Research Center. This is a great…
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The Chaplain
Yesterday, I went for a 6-month follow up visit with my hematology oncologist. One of the first stops was the lab to have blood drawn. They always draw 3 vials--CBC, Metabolic Panel, and LDH. While the phlebotomist had a needle in my arm, this goofy acting man came into the lab and slapped her on the shoulder with a jovial…
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Dropping in to say "Hi"
Hi guys. I haven't been on here since after we moved to Oregon in 2014...sorry ...I just got busy with my husbands retirement and our new location. Not a good excuse, but the truth. We decided to move back to Washington in Oct 2018 to be closer to the family. I relapsed twice while in Oregon, was treated with Rituxan and…
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A whirlwind since January 2019
I was diagnosed out of nowhere in January 2019 with NHL. The first 2 chemo treatments were a disaster as other things went wrong due to the chemo. I was hospitalized for 2 months, then sent to a nursing home for 2 months and I got home April 15. I have now taken 4 or the scheduled 6 chemo treatments. The third and forth…
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Just diagnosed-feelings & thoughts
Received the results of my biopsy yesterday, classical Hodgkins lymphoma, nodular sclerosis subset. I didn’t cry, I didn’t take a seat, I just stood there, felt numb. maybe my mind is still processing the news? Or my mind is fending off the reality of what is to come... im a 34 year old male who noticed a lump near my left…
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Halfway Through
This last week I had my 3rd R-CHOP cycle and am officially halfway through. Seem to be tolerating it fairly well. Vincristine is my nemesis causing issues with numbness in my fingertips and causing significant constipation. Having mid treatment scans which my onc believes will show NED. I will be having a discussion about…
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T - Cell Lymphoma of the Small Bowel (specifically in the Jejunum)
Hello, My husband was diagnosed in March with T-Cell Lymphoma of the small bowel. It has been narrowed down to a very rare type, abbreviated as MEITL. It is very aggressive and prognosis is poor. However, we are getting treatment through Stanford's Lymphoma Clinic in Palo Alto and we feel confident he can beat this - it is…