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Covid vaccination failure?
I had my two vaccine doses. In mid-April I read that a high percentage of lymphoma patients in treatment, or recently in treatment, are experiencing vaccine failures. Severe B cell depletion is not a great starting point for developing antibodies I guess. I went the next day to get a Covid antibody test, and sure enough,…
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What tests are necessary for a diagnosis or rule-out?
I hope it's okay for me to post this here as I don't have a diagnosis, but I figured you would all know better than anyone about what tests are necessary. A few months ago I noticed a rock solid lump below my ear. I was (still kinda am?) convinced it was a Parotid tumor and just left it alone. A few weeks later the lymph…
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Apology
Hello to you all, I am so sorry that I have been absent from the board for so long, I have been meaning to write and I feel so bad that I haven't done it. We have had a pretty hectic six or seven months and yes Bill relapsed with his mantle cell for about the fifth time. I will try to make this as short as possible. in…
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sleepiness
I was originally diagnosed in May 2020. I received a chemo treatment then, based on what I was told (I was also suffering from hydrocephalus at the time. After severa; MRIs, CAT scans, and PT scans, it appeared the cancer was gone. Then, around September or October, my doctor sent me for one last set of scans to confirm…
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Test results
Hello everyone, I just hit my 50 day post my autologous transplant mark yay. I was looking at my previous test results from when I was hospitalized for the transplant and I found a number of X-rays that said I might be having some tumors/treated disease in my lungs (it wasn't quite accurate because as you know X-rays are…
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EBV+ DLBCL, non germinal center B cell
Does the subject look familar to anyone? Still waiting to see the Doctor
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Relapsed Follicular Lymphoma options and advice please!
Hi, I'm new here and looking for advice, information, and feedback to help me make the biggest decision of my life! I have Relapsed Stage 1-2 Follicular lymphoma (diagnosed 5 years ago) which is primarily in my small intestines (jejunem) which causes intestinal wall thickening resulting in small bowel obstructions. I have…
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Wig from your own hair?
Hi, Has anyone had a wig made from their own hair? What was your experience? If not, what other types of wigs do you recommend? Jane
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Long Term Survivorship Issues
Blue Roses (and everyone else), I spent all day yesterday at Sloan Kettering with my late effect doc. Now as I recall from the last visit with him, the mention of "chemo brain" brought out a response of not really with survivors, but rather with those during treatments. Now, I can tell you that as far back as 10 years ago,…
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Very Concerned
Hello everyone. I have found myself on this website for HOURS reading through all the forums looking to relate to anyone and hopefully get some positive answers. I decided to finally make an account of my own and make my post. I will TRY to keep it short, but I have A LOT of information so if you read through it all- thank…
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Covid Vaccine
Probably a dumb question but has anyone had issues with the Covid Vaccine after having NHL and treatment. My DLBCL was in my right sinus which left a pretty large sinus void where tumor was and hope it doesn't cause me issues. I'm scheduled for my first shot this afternoon. Peace
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My son
Hello, I just joined today. My son was officially diagnosed with Hodgekins Lymphoma Stage 2. He will have 6 months of chemo beginning around the 20th of this month. Whew... I live in GA. He is in Ohio living with his father and we stay in touch. We were told that he will lose his hair with chemo. His Dad and I have seen…
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Is it negligent to not do a biopsy after positive PET scan?
The patient has had enlarged cervical nodes (8 months), itching, excessive fatigue, dizziness, nausea, shortness of breath, alcohol intolerance, and new mottled-appearing rash on legs, arms, buttocks, and stomach. Imaging shows numerous lymph nodes in the neck, chest, and armpits slightly under size criteria. the enlarged…
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Antibody test after Covid vaccine
I have splenic marginal zone lymphoma, was treated with rituximab, last dose on Dec 9th, 2020. I had a first Pfizer shot on Jan 24, 2021, and the second three weeks later. There is a study going on which is testing for antibodies, and titers, after vaccination in people with leukemia and lymphoma.…
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New to forum; awaiting information and have upcoming medical appointment. Need advice on questions t
Hi everyone. I’m new here, and I’m hoping some of you might be able to help me a bit. I want to say first that while I’m dealing with some ongoing health stuff which is concerning me, I’m trying hard not to delve into google too much as I know that can be overly worrying and counter productive. I’m actually here now and…
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Severe insomnia after chemo treatment for 32 years
Has anyone else had this, its about drove me crazy,and doctors just say its depression but after 15 different anti depressant mess I still have not been able to sleep more than 1 to 2 hours a night if I sleep at all, keep telling doctors I think the chemo damaged my area of the brain controlling sleep but they still won't…
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Swollen Lymph Nodes Behind Ear, Itchy Skin, Mild Night Sweats - Possible Lymphoma
Hi. 5 weeks ago I noticed two visibly swollen lymph nodes behind my right ear. They are not painful. They feel fairly hard, but not quite as hard as the surrounding bone and have a little bit of give to them. The upper one is about 3/4 of a centimetre and the one below is is about a centimetre (maybe slightly larger). My…
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ischemia necrosis gangrene after ABVD and blood transfusion
Has anybody know of anyone who has experienced gangrene in limbs after Hodgkins chemo treatment ABVD ? And was was done if anything to save the patient? I have a relative in Fiji 68yr male who just after 1 dose of chemo suddenly and rapidly declined to this condition. Blood Clot signs appeared straight after a blood…
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Side effect treatments?
Hi!! Am new to all of this and am looking for some help or advice.... ended treatment for stage IV in Feb of 2015. i am 29 yrs young with 3 kids one of which is ASD. Life is hard. When I get hot or stand in the sun for a while i get like prickly painful heat all over my body. I do have some neuropathy in my feet. Is this a…
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Awaiting biopsy results
Hi! New here and aimlessly looking for similar stories, hope, anything really to calm my nerves. Mid Feb I noticed a large lump on the left side on my neck. Made an appt with my ENT and PCP, blood work came back fine and ENT ordered a CT scan with contrast. Results indicated that I have a 3 x 4 x 6 cm cluster of lumps on…
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New to me
While reading my latest summary from a major cancer center I came upon a new (to me at least) word. "Pancytopenia caused by chemotherapy". From what I can tell it is a type of anemia in which wbc, rbc and platelets are all low. Has anyone rlse had this diagnosis and if so is it reversible, ie treatable? I will be speaking…
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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…
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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:…
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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,…
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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
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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…
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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
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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!!! .
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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…
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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…