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Lymphoma (Hodgkin and Non-Hodgkin)

Hoarse voice with PMBL
I discovered lymphoma （a big mediastinal mass）because one day I had trouble talking. My voice is distorted and it takes several breath to finish one sentence. Now I'm scheduled for 3rd cycle of chemotherapy next week. This problem has improved a little bit but not very significant. Doctors showed little concerned in last…
False Positive Question/When a Node is Considered Suspicious
Hello All, It's been a while since I've been on the board and posted anything. But I have a question regarding a pet scan I had. My main question is: can a 3.3 cm x 2.3 cm inguinal lymph node with an SUV level of 7.6 on a pet scan be a false positive? When are they considered suspicious of being malignant? Additional Info:…
How do you handle it when your DR/nurses mess up? (Mistake leads to infusion reaction...)
I am undergoing maintenance therapy every 2 months for follicular lymphoma with the newer immunotherapy drug, obinutuzumab. This drug has to be given at a slow drip EVERY single time due to the strong infusion reactions it causes (unlike rituxan which can be given more quickly after the 1st infusion). This past week,…
Pet scan results rescheduled is this bad news
I was suppose to get my pet scan results today after 6 cycles of chemo for non Hodgkin lymphoma after 3rd cycle mass went from 10cm to 7 I did another 3 rounds ended Jan 1 I was supposed to get my results today but Dr reschuled said she had to talk to tumor board is this bad news I can't sleep
Pet scan with lymph node activity
Hi there..it has been a while. I had a pet scan and it showed mild up take in a lymph node on my neck. It says that there is a small bilateral posterior cervical triangle lymph nodes associated with a mild degree of FDG avidity with SUV max reaching up to 2.6, Deauville score of 3. These measured about 5mm in diameter on…
Has anyone here taken duvelisib/ copiktra
I'm starting a clinical trial and it's a very new drug. Wanted to talk to someone who had taken it. Thank you
New drug duvelisib
Hi there. Can anyone tell me more about this pill. I am supposed to start citocin and rituxin plus 100 mg of prednisone (for 5 days every month). Got a call from dr to come in and take a look at this new drug. I have no idea how bad or good it is, all I know is that it's not chemo. Thank you all!!! .
NLPHL Relapser - AMA
Hi all, First time poster here. Sharing my story in case it's of use to anyone, in particular given NLPHL is not common. First time I was diagnosed was in 2002, 21 y.o. Stage IA. Treated it with extended radiotherapy (mantle field). I believe/understand this now is an obsolete approach. Relapsed diagnosis in beginning 2018…
R-chop advice
Hi, I would appreciate any advice you can give. My mom was recently found to have lymphoa and will be getting a final diagnosis in the next few days. Although We are waiting for confirmation, I suspect it is DLBCL and she will be on R-chop. I'm trying to have some plans In place to help her and was looking for your…
Follicular
Recently diagnosed. Visiting oncologist Monday to discuss next steps. Any advice of what to expect. Still shocked that my life can change from one minute to the next. No symptoms outside of a swollen lymph node. Active, and I thought I was healthy. No other heal issues in my life.
Has anyone Had "Non Germinal" Large Diffuse B-Cell Lymphoma
Has anyone else had Large Diffuse B-cell Lymphoma that was dianosed as "Non-Germinal" I know it is rare compared to Germinal and I am curious if anyone else had that? I had to take another drug Revlimid for ten days after each of my six treatments to compensate for it being Non-Germinal. This is why they called my…
Freaking Out Waiting on Answers
Hi everyone, Hoping I can get some feedback from knowledgeable peers. 37 male nonsmoker. Super healthy and active. Noticed 2 palpable superclaviclar nodes on right side about 3 weeks ago. Could have been there longer but unsure. GP ran blood tests and showed normal WBC but lymphocytes high. Sent me for an ultrasound which…
Results of my Pet Scan
Hi All I had my Pet Scan yesterday. Today had oncologist appointment. All my lymph nodes have shrunk. Some 50%, some 75%. Thats in a months time. I still have lymphoma but no treatment at this time. Will monitor me every three months like some of you are being monitored every three months. Today is a positive which will be…
An update for you kind folks
Hi guys, I had posted here several times in the last couple of weeks, and everyone was very helpful and calming. I just had my results appointment with my doctor today and thought I'd let you all know how it went. All is seemingly good, barring some anatomically strange elements which evidently shouldn’t be causing…
CT VS MRI VS PET
Hello all, I'm sorry to ask what might be an ignorant question. I've never been diagnosed with lymphoma, but I'm very concerned about the way I've been tested in the past. My symptoms are enlarged lymph nodes all around my neck, even one that I can actually see. Some have been there for years without changing, whereas…
ACS sister site "WhatNext"
It has apparently been taken down. EDIT: Went to a different terminal and there it was. I've been watching One Step Beyond re-runs I guess.
lymphoma massage therapy
I am the primary caretaker of someone who has had hodgkins for 5 years now..She has gone through transplant and approximately 5-7 types of chemo & radiation. She gets massage therapy 1x/week and was recently offered lymphoma massage. Has anyone ever experienced this or have been adviced to do it or not to do it...If you…
Long Term HD survivors
Hi All, I would really like to talk with other long term survivors of Hodgkin's Disease. I was treated in 1971 and I am looking for other survivors treated then or even later. Please contact me directly at zame@earthlink.net thanks!
Radiation, Reflux, LES / Long-term Effect
Hello everyone: me: 1988 Nodular sclerosing HL Stage 2. Treated with RT to jaw, neck, chest, abdomen over the course of 3 months. issue: Around 1998 I became aware of acid-reflux issues primarily in the evening if I ate too late. Past 5-7 years it has worsened. I don't experience the searing pain of acid in my esophagus…
Just found out my Hodgkin’s lymphoma is “unfavorable”
I had a consult with a radiologist on Friday, and at some point, it was mentioned that my SED rate was high enough to put me in the "unfavorable" category (103, I think it was), which surprised me. Up until that point, I'd thought that this was really no big deal, that as far as cancer goes, my kind is one of the least…
New to forum - mother has Non-Hodgkin
Hello all I have been looking for a place to talk to people concerning my mom and her cancer diagnosis. About 5 years ago my mom was treated for Non-Hodgkin's lymphoma. I believe she had R-CHOP, but not sure. She was fine for a while until this time last year when she had to get the treatment again. This past Sunday I had…
Returning to board
It's been many months since I have been on this board. I replaced my laptop last summer. I kept all the links but couldn't find my notes to get the password. Today doing some cleanup and low & behold it was right next to my desktop. (DUH). Now to catch up.
Would appreciate feedback/advice
35 year old female here. For the past 2 years I have been experiencing episodes of tachy with my HR going up into the high 120's with minimal exertion (going up stairs, light housework). I have extreme sweating, espeically in warmer locations/outside I am dripping sweat. Just walking from the mailbox to the house, a mere…
Just diagnosed with Double/triple hit Lympoma
Hello all, Just had a visit (zoom) with an oncologist for the first time. There is more data to be gathered but it looks like I have triple hit Lymphoma. The first diagnosis is based on an FNA and the oncologist wants to have his people look at it - but he doesn't expect the diagnosis to change. I had a Pet Scan yesterday…
New member....emotions all over the place
Hi. I Am new here. I saw a dermatologist in May, after discovering a lump on my scalp. She said it was a Pilar cyst and nothing to worry about. Within weeks, it started to grow and I returned to the dermatologist. She was alarmed, did a biopsy, and one week later, on July 20, she called to say I had diffuse large B cell…
It’s back
Hi, In July 2017 I was diagnosed with aggressive large B cell stage 2 lymphoma. I had 6 rounds of R Chop. I had been NED since December 2017. I was treated by an oncologist. I was told I could have the port removed. Fast forward to October this year. I had been running a low grade fever every night. In November the temp is…
New Forum Member Jim
Greetings Survivors, Instead of lurking for a month or two I just thought I'd introduce myself in this forum right from the start. I used to be a member of cancerforums.net but that community seems to have moved and I'm not sure if it's still a viable forum with a reasonable amount of interaction between members. A quick…
Just diagnosed with DLBCL in the stomach
I was just diagnosed with DLBCL in the stomach. I live in connecticut and consulted with a local oncologist who recommended R-CHOP based on the path report from an independent lab. The report said that there will be an addendum because they need to do further analysis to determine if it is double or triple hit and also to…
Post R-CHOP (worried about my sister)
Hello everyone, I've been reading this platform from afar for a while. This is the my first time sharing my story; My sister who's 20 yo was diagnosed with non hodgkin's lymphoma, DLBCL, almost 4 months ago. The diagnosis was the most depressing part of all. Since two of the first biopsies were false negative. So doctors…
Just found out DLBC. Looking for tips.
Hello everyone. I found this site looking for information to prepare for our journey ahead. This week I just found out my mother was diagnosed with DLBC on the pancreas. We initially got the terrible news that there was a tumor on the pancreas which means game over. Spent 2 days sleepless thinking how it might be only a…

Lymphoma (Hodgkin and Non-Hodgkin)

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