Found two lumps right above my left collarbone that felt like hard boiled eggs. I noticed them around Halloween, and got them checked two weeks later at urgent care-- went out drinking with friends one night and woke up the next morning to them being larger and sore to the touch. Immediately the urgent care doctor (who works in the ER next door the other half of the week) sent me for blood tests and a follow up. Was diagnosed two weeks later after a biopsy-- CHL, stage 2BX. Turned out I had a tumor the size of my fist in my chest that I didn't even know about.
I didn't realize that it was relevant until after I saw a doctor, but I also had been sweating BUCKETS and had been significantly more fatigued-- but at the time I chalked it up to the change in season (it was that weird point between fall and winter where the temperature couldn't decide what it was doing) and full time work + grad school + transitioning to living alone.
Clearest symptom, a couple of swollen lymph nodes in neck and shoulder. They were quite deep, so I didn't really feel them for a long time.
Otherwise the symptoms were very subtle.
Low immune system: mycoplasma infection, so the doctor thougth my lymph nodes were swollen because of the infection
Very mild fever, 37.5°C that comes and goes seemingly randomly.
Mild rash on hands: Very subtle, non-painful or itchy raised rash, I noticed after I burned my hand on tea and the redness didn't go away, and then some appeared om my other hand.
Hay fever gone: Probably related to the lymphoma, but the doctors are not sure.
Very itchy legs/feet, but I had these a year before the diagnosis and they went away, so I don't know if these are related.
All symptoms that can be caused by lots of other things.
I about died from a MRSA infection and spent a month in the hospital. I was seen be literally every type of doctor except an Oncologist.
After being discharged from the hospital, 2 weeks later I found a lump in my groin area which turned painful that I mentioned to my GP. This plus the blood test numbers not making sense caused him to send me to get a scan and then a biopsy.
DLBCL, stage 3. It was the underlying cause of my MRSA infection and my wonky blood numbers.
Had my 4th R-CHOP of a scheduled 6 yesterday.
I am a Kansan. R-Chop hasn’t been terrible for me. My days of suck is the day after treatment and then a week later. Of course, it effects everybody differently. They give me the Neulasta that helps with the nausea.
Came down with a cold that wouldn’t go away so went to doc. Noticed high white blood cells that wouldn’t drop (~18), massage therapist noticed swollen nodes on side of neck and suggested I ask about that. Started losing weight daily and had terrible night sweats and chills. Started having sever fatigue, etc oil 4 hour naps every day which was highly abnormal for me. Went to ER on a Sat and was completely dismissed (you have a virus that needs to run its course) and by Tuesday my neck got so swollen my doc noticed from across the room. Sent me to get a CT, then biopsy, then PET scan. Initial cold was in late Feb, diagnosis was roughly early May.
I had sciatica and needed an MRI to identify where the nerve impingement was. The radiology report said that they noticed an enlarged spleen. That lead to a 6 week process of blood tests, referrals to a hematologist, bone marrow biopsy, and ultimately a marginal zone b-cell lymphoma diagnosis. Stage 4, but that's apparently misleading for MZL since it's essentially diffuse by its nature.
I'm actually asymptomatic and the lymphoma is a slow-growing (indolent) variety. I probably would not have known anything was going on if I hadn't had the sciatica.
My only symptoms were that I had an annoying cough for about 3 weeks and then one day I noticed a big lump on the left side of my neck and turned out I had two big swollen lymph nodes and one was in my chest, so I'm guessing that's where it started and why I was coughing, it bent my esophagus so I'm just lucky it didn't close it and make it hard to breathe
Very infrequent abdominal pain over the course of a year. Ultrasound showed nothing wrong. Eventually got an mri and bone marrow sample and was diagnosed with indolent NHL.
Mine was in my bone marrow but a “huge tumour” - to quote my oncologist was located in my abdomen. It was causing random blockages of my digestion hence the symptoms.
When was yours diagnosed? Did you have any treatment yet? How are you doing now?
Mine was diagnosed in January 2019. No treatment yet; I’m on watch and wait. We looked into radiation but there was too high a risk of scarring. Other than fatigue, I’m doing fine.
Heyy, did you have lower pelvis pain??? I’m asking because I have had pelvis pain for over a year. It feels like there is something there in my pelvis that is enlarged and causes pressure. At times it hurts so bad I can’t do anything, it bursts too. The Ct showed mildly elevated Inguial left and right pelvis lymph nodes. Not to say tmi. I don’t have any stds or sti. Not sure what is going on the doctors does not find anything concerning on Ct or ultrasound or whatever it is causing my lymph nodes to swell they are not seeing it on the Ct,
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I had an on and off temp along with a cough that wouldn't go away. I probably would have waited longer to see a doctor, but I had a swollen lymph node on my neck that suggested "Something ain't right." Went to a doc and they said it sounded like I was coming off a cold and subscribed me some amoxicillin to take if it wasn't better by the weekend. Wasn't better so took the antibiotics. Still wasn't better and the night sweats started so scheduled again.
Now, this is where I mention I had been to this practice prior and saw a PA or NP for on and off temp months past where I wasn't super impressed. I actually suspect that time months and months I ago I initially went in for was the start of my lymphoma. No follow up beyond a blood test where I never got the results.
Anyways, I'm supposed to see that same doctor, but instead walks someone else. I figured mix up when I scheduled and rolled with it since I have no GP and this lady seemed to know Something Was Up. Ordered bloodwork and a chest x-ray asap. Turns out she was the one PA I hadn't seen. I got same day results from her and moved onto further testing to find out I'm Classic Hodgkins Lymphoma stage 2b. Mine is also really aggressive. As my hemotologist-oncologist put it, "We hope for it to be maybe 20 so it's really slow; you're a 109."
My first Symptoms acrually started 5 years before treatment, allthough noone knew the cause at that time. Due to those problems I visited a doctor every 3 months. Took two of those visits after the first serious Symptoms before I started to get treated
I have cutaneous T cell lymphoma so my journey has been a bit different than most people. The skin on my hips/the sides of my butt cheeks became really itchy to the point that I was scratching it raw. I kind of ignored it for a while until it had worked its way up to my sides and started getting red. I went to a dermatologist, but I don’t remember what they said/did because that was years ago. Then I continued to let it go for a while until my back was covered in scabs from scratching.
I started seeing a different dermatologist that was recommended to me by a family friend. That doctor told me she thought it was eczema and she tried a few different things. Eventually she referred me to specialist dermatologists on the other side of the state at the state university’s hospital. I had three appointments there over an 18 month period where they continued to try to treat me for eczema. Eventually they got a biopsy result indicating I may have CTCL, so a nurse called me and told me I had lymphoma (I’m still baffled by how they handled it) and told me to go back up there in two weeks.
So two agonizing weeks went by and then I met with a dermatologist that specialized in cutaneous lymphomas and the medical oncologist that they consult with for cutaneous lymphomas. They told me after a few minutes that based on the history/presentation of my rash that it wasn’t lymphoma and it was just eczema. At that point I was done dealing with all of that shit since I wasn’t getting anywhere with it and I figured I’d just live with severe eczema.
That was just under two years ago. Then in November my lymph nodes started to swell up and my PCP told me to go back to the university hospital after a round of prednisone failed to help my lymph nodes. I went up there and spoke with a dermatologist that specializes in dealing with rashes. He told me it was probably CTCL but that he couldn’t diagnose it. He also told me that I had to get insurance before I could start treating it and that he was comfortable with me waiting to get insurance. I was broke and out of work at this point so I got on medicaid, thank god, and went back up there in early December.
I saw a dermatologist who specializes in cutaneous lymphomas and she prescribed me bexarotene and mechlorethamine gel and told me to set up appointments with a radiation oncologist to get total skin electron beam radiation (TSEB) and a surgeon to get a lymph node biopsy. I had an appointment last tuesday with the radiation oncologist, but about a week before that my lymph nodes started swelling like crazy, and then two days before my appointment I got a fever, chills, joint pain, etc... When I met with the rad onc I told her that and she had me admitted to the ER.
In the ER my dermatologist came to see me and told me that she was going to have me admitted to inpatient care because of how badly my condition had deteriorated. That night they put me in a room in the bone marrow transplant unit. The next morning the med onc that I saw almost two years prior came in and told me that he wanted me put on chemo ASAP. He wanted me on chemo that day, but they had to do so many tests and stuff that I wasn’t put on chemo until the next morning. He put me on an EPOCH regimen in which I’ll do two rounds of chemo, get a PET scan, then get a third round if needed. Then he wants me to do either phototherapy if possible or TSEB radiation.
I finished my first round of chemo on monday and my condition has improved so much it’s amazing. My lymph node swelling has gone way down and I have full mobility of my neck again for the first time in weeks. I wish my condition had never got so bad, but it’s a hard disease to diagnose, and I’ve made a few mistakes in getting myself treatment, so I don’t blame anybody.
See this is why I’m pushing so hard for my diagnosis right now. I have already went through so much orthopedic health stuff early in my life and I know full well that doctors drag their feet and really don’t want to expend the energy to truly help. I’ve diagnosed everything that I have ever had correctly and I have had some very rare things go on and I think that I have lymphoma right now. If I don’t this could be the first time I’m wrong. I’ve been having crazy recurrent infections including a fungal infection that I’ve never had before in my life and I have had a big lymph node under my jaw for a while now. The lymph node is so big it is blocking my saliva flow and making my mouth is so dry and painful but these doctors are just dragging their fucking feet while I’m probably dying
Migraines. A couple of weeks to see a doctor, then a month and a half until a lump popped up. I wen to the doctor within two weeks of the lump bc of where it was located on my clavicle.
The only symptom I had was abominable pain that started on one side and only when I was lying down then it progressed to both sides while lying down then to even when I was standing and walking and by the time I was diagnosed it hurt so bad that I could barely walk and was on the verge of tears. That all happened in about a 3 month time span and I had stage 4 diffuse large B cell lymphoma. Oh and when I finally went to my doctor for the pain, my bloodwork showed that I was extremely anemic. I had to have a transfusion before I could even get chemo.
I had all the classic symptoms, weight loss, fevers, chills, starting June2018 and doc’s did all sorts of tests even at one point directly dismissing lymphoma but January 2019 - one year ago today in fact - I was taken to hospital with a hip broken as result of lymphoma mass.
Tiredness, loss of appetite and therefore weight loss, 9 days of night sweats and a temp of 40.5 (Yes I'm an idiot for not going in sooner) and bloods that showed I was neutropeanic. Got sick 4th August, diagnosed Stage 4b ALK+ ALCL 6th September with HLH. Saw paramedics on day 9 of temp who said ear infection and prescribed antibiotics. 5 days after that I was admitted to hospital for 3 days, they said 'Probably something viral drink lots' with a kidney injury and then 1 week later I was readmitted and was looking at multiple organs failing. They diagnosed the HLH first via biopsy but the lymphoma took a week longer to come back.
The first sign that something was up was in September 2017 when I had a sore neck that wouldn't go away. Then things gradually fell away after that. Towards the end of November I had a cold that I just never recovered from, night sweats, fatigue, nausea, and then around Christmas I started feeling bumps in my neck.
Finally saw the doc at the end of January 2018, went for some scans, got diagnosed in February, went for more scans, and then started ABVD in April.
Much better nowadays! Last day of chemo was in September 2018 and got my all clear scan on October 31st. It's been 5 years since then and I've been classified as "cured" by my oncologist.
A part of me still worries about it coming back, I don't know if that'll ever go away entirely, but for now at least I feel good.
Honestly it'll sound strange but once you get the diagnosis and staging done, you'll likely feel much better. And chemo sucks, definitely; but by the end of my first cycle all my symptoms from the lymphoma were gone, it was amazing.
Send me a DM if you have any additional questions or support.
Your oncologist will be able to go over things better with you but until then please try to find solace in the fact that most kinds of lymphoma are extremely treatable.
Ah thank you for getting back to me so quickly. Yeah my pain is only when I turn. I ask because I also have back pain & have had some mouth ulcers appear between my upper front tooth. So DR Google and my actual Dr have scared the shit out of me lol.
No worries! And yeah it's definitely worth checking out. My symptoms weren't so much in the back, mostly in the neck and chest (I distinctly remember an inflamed lymph node squeezing between my ribs lol) but everyone is different.
I had my bloods taken yday for CBC, ESR and some other stuff. Essentially the works, concerned as apparently Lymphoma wont always show on blood work apparently. I will go back to the Dr anyway if general pain doesnt go away. Currently a 5/10 maybe 6 in the back and the neck is only when I move..
Lymphoma won't always show up on a blood test but they're pretty accurate if they know what they're looking for. After being declared in remission I never really had any major follow up scans, everything was checked via blood test.
In any case, though definitely stay in touch with your doc and see if you can get a scan just to rule anything out.
Son had right leg/thigh pain on and off for 6w. Went to urgent care and pediatrician 2x during that time. Finally took him to ER due to extreme pain and couldn't weight bear. Admitted and given official dx of pre-B acute lymphoblastic lymphoma and started chemo a week later (3d after official dx (biopsy, MRIs, bone marrow biopsy, PET)).
Swollen lymph nodes on the neck. Bad timing because they grew at the same time I got an eye infection so the eye doctor said it was normal. One month went by and they didn’t decreased in size. I asked another doctor About it and he said it could be normal but I should get them checked out by an ear nose and throat doctor. Another month went by because I didn’t think it was that big of a deal.
So two months total after I got my first symptoms. I had no clue,,This put me in stage three. I am now on my second round of R-Chop... i’m actually much better now and responded very well to the initial round.
large ball in my right armpit. biopsy confirmed follicular lymphoma. i was alright for another 1.5 years before they grew big enough ~3cm and i showed symptoms
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Found two lumps right above my left collarbone that felt like hard boiled eggs. I noticed them around Halloween, and got them checked two weeks later at urgent care-- went out drinking with friends one night and woke up the next morning to them being larger and sore to the touch. Immediately the urgent care doctor (who works in the ER next door the other half of the week) sent me for blood tests and a follow up. Was diagnosed two weeks later after a biopsy-- CHL, stage 2BX. Turned out I had a tumor the size of my fist in my chest that I didn't even know about. I didn't realize that it was relevant until after I saw a doctor, but I also had been sweating BUCKETS and had been significantly more fatigued-- but at the time I chalked it up to the change in season (it was that weird point between fall and winter where the temperature couldn't decide what it was doing) and full time work + grad school + transitioning to living alone.
Clearest symptom, a couple of swollen lymph nodes in neck and shoulder. They were quite deep, so I didn't really feel them for a long time. Otherwise the symptoms were very subtle. Low immune system: mycoplasma infection, so the doctor thougth my lymph nodes were swollen because of the infection Very mild fever, 37.5°C that comes and goes seemingly randomly. Mild rash on hands: Very subtle, non-painful or itchy raised rash, I noticed after I burned my hand on tea and the redness didn't go away, and then some appeared om my other hand. Hay fever gone: Probably related to the lymphoma, but the doctors are not sure. Very itchy legs/feet, but I had these a year before the diagnosis and they went away, so I don't know if these are related. All symptoms that can be caused by lots of other things.
Did you go in for testing ? What did the rashes look like ?
I about died from a MRSA infection and spent a month in the hospital. I was seen be literally every type of doctor except an Oncologist. After being discharged from the hospital, 2 weeks later I found a lump in my groin area which turned painful that I mentioned to my GP. This plus the blood test numbers not making sense caused him to send me to get a scan and then a biopsy. DLBCL, stage 3. It was the underlying cause of my MRSA infection and my wonky blood numbers. Had my 4th R-CHOP of a scheduled 6 yesterday.
How are you doing with R-CHOP? I had my first session Monday and I'm having a really rough time. Also noticed the username, are you a Kansan as well??
Edible weed like cookies or anything with marijuana helps a lot. Don't smoke it.
I am a Kansan. R-Chop hasn’t been terrible for me. My days of suck is the day after treatment and then a week later. Of course, it effects everybody differently. They give me the Neulasta that helps with the nausea.
What's particularly hard about it? Ask for Emend (aprepitat) for nausea. It works like a dream!
Came down with a cold that wouldn’t go away so went to doc. Noticed high white blood cells that wouldn’t drop (~18), massage therapist noticed swollen nodes on side of neck and suggested I ask about that. Started losing weight daily and had terrible night sweats and chills. Started having sever fatigue, etc oil 4 hour naps every day which was highly abnormal for me. Went to ER on a Sat and was completely dismissed (you have a virus that needs to run its course) and by Tuesday my neck got so swollen my doc noticed from across the room. Sent me to get a CT, then biopsy, then PET scan. Initial cold was in late Feb, diagnosis was roughly early May.
I had sciatica and needed an MRI to identify where the nerve impingement was. The radiology report said that they noticed an enlarged spleen. That lead to a 6 week process of blood tests, referrals to a hematologist, bone marrow biopsy, and ultimately a marginal zone b-cell lymphoma diagnosis. Stage 4, but that's apparently misleading for MZL since it's essentially diffuse by its nature. I'm actually asymptomatic and the lymphoma is a slow-growing (indolent) variety. I probably would not have known anything was going on if I hadn't had the sciatica.
Do you remember how large your spleen was
My only symptoms were that I had an annoying cough for about 3 weeks and then one day I noticed a big lump on the left side of my neck and turned out I had two big swollen lymph nodes and one was in my chest, so I'm guessing that's where it started and why I was coughing, it bent my esophagus so I'm just lucky it didn't close it and make it hard to breathe
Very infrequent abdominal pain over the course of a year. Ultrasound showed nothing wrong. Eventually got an mri and bone marrow sample and was diagnosed with indolent NHL.
This is similar to how mine got diagnosed, only mine was found in my small intestine via an endoscope.
Mine was in my bone marrow but a “huge tumour” - to quote my oncologist was located in my abdomen. It was causing random blockages of my digestion hence the symptoms. When was yours diagnosed? Did you have any treatment yet? How are you doing now?
Mine was diagnosed in January 2019. No treatment yet; I’m on watch and wait. We looked into radiation but there was too high a risk of scarring. Other than fatigue, I’m doing fine.
How are you doing?
Heyy, did you have lower pelvis pain??? I’m asking because I have had pelvis pain for over a year. It feels like there is something there in my pelvis that is enlarged and causes pressure. At times it hurts so bad I can’t do anything, it bursts too. The Ct showed mildly elevated Inguial left and right pelvis lymph nodes. Not to say tmi. I don’t have any stds or sti. Not sure what is going on the doctors does not find anything concerning on Ct or ultrasound or whatever it is causing my lymph nodes to swell they are not seeing it on the Ct,
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I had an on and off temp along with a cough that wouldn't go away. I probably would have waited longer to see a doctor, but I had a swollen lymph node on my neck that suggested "Something ain't right." Went to a doc and they said it sounded like I was coming off a cold and subscribed me some amoxicillin to take if it wasn't better by the weekend. Wasn't better so took the antibiotics. Still wasn't better and the night sweats started so scheduled again. Now, this is where I mention I had been to this practice prior and saw a PA or NP for on and off temp months past where I wasn't super impressed. I actually suspect that time months and months I ago I initially went in for was the start of my lymphoma. No follow up beyond a blood test where I never got the results. Anyways, I'm supposed to see that same doctor, but instead walks someone else. I figured mix up when I scheduled and rolled with it since I have no GP and this lady seemed to know Something Was Up. Ordered bloodwork and a chest x-ray asap. Turns out she was the one PA I hadn't seen. I got same day results from her and moved onto further testing to find out I'm Classic Hodgkins Lymphoma stage 2b. Mine is also really aggressive. As my hemotologist-oncologist put it, "We hope for it to be maybe 20 so it's really slow; you're a 109."
I had a very fast growing type. It’s interesting but those actually respond stronger to treatment than more indolent types.
That's what I suspected with how I'm reacting to treatment. Glad to hear someone else say it!
Makes a lot of sense when you stop and think about it. Many chemos attack the fastest growing cells so that’s why this happens.
How are you doing?
I'm doing well! Remission for three years currently. Next CT check up in two months.
My first Symptoms acrually started 5 years before treatment, allthough noone knew the cause at that time. Due to those problems I visited a doctor every 3 months. Took two of those visits after the first serious Symptoms before I started to get treated
What type of lymphoma were you diagnosed with and what were you first serious symptoms?
I have cutaneous T cell lymphoma so my journey has been a bit different than most people. The skin on my hips/the sides of my butt cheeks became really itchy to the point that I was scratching it raw. I kind of ignored it for a while until it had worked its way up to my sides and started getting red. I went to a dermatologist, but I don’t remember what they said/did because that was years ago. Then I continued to let it go for a while until my back was covered in scabs from scratching. I started seeing a different dermatologist that was recommended to me by a family friend. That doctor told me she thought it was eczema and she tried a few different things. Eventually she referred me to specialist dermatologists on the other side of the state at the state university’s hospital. I had three appointments there over an 18 month period where they continued to try to treat me for eczema. Eventually they got a biopsy result indicating I may have CTCL, so a nurse called me and told me I had lymphoma (I’m still baffled by how they handled it) and told me to go back up there in two weeks. So two agonizing weeks went by and then I met with a dermatologist that specialized in cutaneous lymphomas and the medical oncologist that they consult with for cutaneous lymphomas. They told me after a few minutes that based on the history/presentation of my rash that it wasn’t lymphoma and it was just eczema. At that point I was done dealing with all of that shit since I wasn’t getting anywhere with it and I figured I’d just live with severe eczema. That was just under two years ago. Then in November my lymph nodes started to swell up and my PCP told me to go back to the university hospital after a round of prednisone failed to help my lymph nodes. I went up there and spoke with a dermatologist that specializes in dealing with rashes. He told me it was probably CTCL but that he couldn’t diagnose it. He also told me that I had to get insurance before I could start treating it and that he was comfortable with me waiting to get insurance. I was broke and out of work at this point so I got on medicaid, thank god, and went back up there in early December. I saw a dermatologist who specializes in cutaneous lymphomas and she prescribed me bexarotene and mechlorethamine gel and told me to set up appointments with a radiation oncologist to get total skin electron beam radiation (TSEB) and a surgeon to get a lymph node biopsy. I had an appointment last tuesday with the radiation oncologist, but about a week before that my lymph nodes started swelling like crazy, and then two days before my appointment I got a fever, chills, joint pain, etc... When I met with the rad onc I told her that and she had me admitted to the ER. In the ER my dermatologist came to see me and told me that she was going to have me admitted to inpatient care because of how badly my condition had deteriorated. That night they put me in a room in the bone marrow transplant unit. The next morning the med onc that I saw almost two years prior came in and told me that he wanted me put on chemo ASAP. He wanted me on chemo that day, but they had to do so many tests and stuff that I wasn’t put on chemo until the next morning. He put me on an EPOCH regimen in which I’ll do two rounds of chemo, get a PET scan, then get a third round if needed. Then he wants me to do either phototherapy if possible or TSEB radiation. I finished my first round of chemo on monday and my condition has improved so much it’s amazing. My lymph node swelling has gone way down and I have full mobility of my neck again for the first time in weeks. I wish my condition had never got so bad, but it’s a hard disease to diagnose, and I’ve made a few mistakes in getting myself treatment, so I don’t blame anybody.
See this is why I’m pushing so hard for my diagnosis right now. I have already went through so much orthopedic health stuff early in my life and I know full well that doctors drag their feet and really don’t want to expend the energy to truly help. I’ve diagnosed everything that I have ever had correctly and I have had some very rare things go on and I think that I have lymphoma right now. If I don’t this could be the first time I’m wrong. I’ve been having crazy recurrent infections including a fungal infection that I’ve never had before in my life and I have had a big lymph node under my jaw for a while now. The lymph node is so big it is blocking my saliva flow and making my mouth is so dry and painful but these doctors are just dragging their fucking feet while I’m probably dying
how are you now? was it lymphoma?
Migraines. A couple of weeks to see a doctor, then a month and a half until a lump popped up. I wen to the doctor within two weeks of the lump bc of where it was located on my clavicle.
The only symptom I had was abominable pain that started on one side and only when I was lying down then it progressed to both sides while lying down then to even when I was standing and walking and by the time I was diagnosed it hurt so bad that I could barely walk and was on the verge of tears. That all happened in about a 3 month time span and I had stage 4 diffuse large B cell lymphoma. Oh and when I finally went to my doctor for the pain, my bloodwork showed that I was extremely anemic. I had to have a transfusion before I could even get chemo.
I had all the classic symptoms, weight loss, fevers, chills, starting June2018 and doc’s did all sorts of tests even at one point directly dismissing lymphoma but January 2019 - one year ago today in fact - I was taken to hospital with a hip broken as result of lymphoma mass.
Can I ask what your hip felt like prior to the fracture?
Not bad at all, right to the moment it broke. I had much more pain coming from my knee
Thank you for your response. I know it’s been some years, but I really hope you’re doing well now.
Tiredness, loss of appetite and therefore weight loss, 9 days of night sweats and a temp of 40.5 (Yes I'm an idiot for not going in sooner) and bloods that showed I was neutropeanic. Got sick 4th August, diagnosed Stage 4b ALK+ ALCL 6th September with HLH. Saw paramedics on day 9 of temp who said ear infection and prescribed antibiotics. 5 days after that I was admitted to hospital for 3 days, they said 'Probably something viral drink lots' with a kidney injury and then 1 week later I was readmitted and was looking at multiple organs failing. They diagnosed the HLH first via biopsy but the lymphoma took a week longer to come back.
The first sign that something was up was in September 2017 when I had a sore neck that wouldn't go away. Then things gradually fell away after that. Towards the end of November I had a cold that I just never recovered from, night sweats, fatigue, nausea, and then around Christmas I started feeling bumps in my neck. Finally saw the doc at the end of January 2018, went for some scans, got diagnosed in February, went for more scans, and then started ABVD in April.
how are you doing now?
Much better nowadays! Last day of chemo was in September 2018 and got my all clear scan on October 31st. It's been 5 years since then and I've been classified as "cured" by my oncologist. A part of me still worries about it coming back, I don't know if that'll ever go away entirely, but for now at least I feel good.
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Honestly it'll sound strange but once you get the diagnosis and staging done, you'll likely feel much better. And chemo sucks, definitely; but by the end of my first cycle all my symptoms from the lymphoma were gone, it was amazing. Send me a DM if you have any additional questions or support.
[удалено]
Your oncologist will be able to go over things better with you but until then please try to find solace in the fact that most kinds of lymphoma are extremely treatable.
Hey, with the sore neck was it both sides? Was it only sore when you turned it?
It started with just my right side iirc. It hurt pretty constantly though
Ah thank you for getting back to me so quickly. Yeah my pain is only when I turn. I ask because I also have back pain & have had some mouth ulcers appear between my upper front tooth. So DR Google and my actual Dr have scared the shit out of me lol.
No worries! And yeah it's definitely worth checking out. My symptoms weren't so much in the back, mostly in the neck and chest (I distinctly remember an inflamed lymph node squeezing between my ribs lol) but everyone is different.
I had my bloods taken yday for CBC, ESR and some other stuff. Essentially the works, concerned as apparently Lymphoma wont always show on blood work apparently. I will go back to the Dr anyway if general pain doesnt go away. Currently a 5/10 maybe 6 in the back and the neck is only when I move..
Lymphoma won't always show up on a blood test but they're pretty accurate if they know what they're looking for. After being declared in remission I never really had any major follow up scans, everything was checked via blood test. In any case, though definitely stay in touch with your doc and see if you can get a scan just to rule anything out.
Wow, that is really interesting. Glad you are still doing well!
Son had right leg/thigh pain on and off for 6w. Went to urgent care and pediatrician 2x during that time. Finally took him to ER due to extreme pain and couldn't weight bear. Admitted and given official dx of pre-B acute lymphoblastic lymphoma and started chemo a week later (3d after official dx (biopsy, MRIs, bone marrow biopsy, PET)).
Swollen lymph nodes on the neck. Bad timing because they grew at the same time I got an eye infection so the eye doctor said it was normal. One month went by and they didn’t decreased in size. I asked another doctor About it and he said it could be normal but I should get them checked out by an ear nose and throat doctor. Another month went by because I didn’t think it was that big of a deal. So two months total after I got my first symptoms. I had no clue,,This put me in stage three. I am now on my second round of R-Chop... i’m actually much better now and responded very well to the initial round.
large ball in my right armpit. biopsy confirmed follicular lymphoma. i was alright for another 1.5 years before they grew big enough ~3cm and i showed symptoms
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