Can any of you share what your symptoms were prior to diagnosis?

WB3F

symptoms

had a growth on my nose that i was concerned about. my dermatologist thought it was suspicious so he cut it off.  diagnosis came back as cutaneous marginal zone lymphoma.  have no other symptoms and no treatment yet. 

jo66

Bsmom1971 said:

My symptoms n' diagnosis
I had lung infections/bronchitus symptoms but no amount of prednisone, antibiotics or inhalers did the trick to help me. I have been fighting this (FNHL)for several years. I had a spot on my lung but the Dr. didn't think anything of it, then 2 yrs. later he decided it had changed enough that it warrented a petscan; I have a pacer so I'm unable to have MRIs.

Besides the Brochitus, I had night sweats, itching, lymph node swelling behind my ears, hives, dry mouth, complete dehydration, pain in my left arm pit, heaviness in my chest all the time but the one thing I never had was weight loss. I actually gained weight; I went from 120 lbs to 200 lbs., no amount of diet or exercise would help me lose it and I'm also diabetic and kept myself on a strict diabetic diet! I was also diagnosed with heart trouble as well as COPD over the past few years so the meds were a contributing factor, or so I was told.

I had a bronchial scope to have a biopsy done but the tumor was so low in my lung, the Dr. was unable to get too the tumor; they were going to do c-scans every 3 months to watch the tumor for changes but I asked the Dr. about surgery to remove it since my Mom and Brother both died of complications due to lung tumors. I had the surgery in Jan. of this yr., was diagnosed with FNHL, stage 4 and will be starting chemo next week.

Not all of us are going to have the same symptoms...When the Surgeon talked to my Primary Physician, he said, "You're going to be surprised to hear this but she has A cell, stage 4, FNHL!" So, I'm assuming, my symptoms were not all that common with the disease.

I also have PIDD/a autoimmune disease and it's my understanding Autoimmune is a factor with NHL. So if you haven't been tested, get an appointment with an Autoimmune Specialist; I've been taking IVIGs for almost 10 yrs. now and without them, I'd been dead long before now! I was always in the hosp., spent more time there then at home; Once I started the IVIGs 10 yrs. ago, I haven't been in the hosp. for lung infections but once or twice ;-)

I guess I'll stop for now...Take care and may God bless us all!

If God is your Co-Pilot, Change seats!

symptoms

hi everyone out here,

My mom aged 57 years, was diagnosed wid low grade NHL in Nov 2012. Initially she lost her appetite, drastic weight loss, night sweats, cough, low grade fever. all the medicines given by physician didnt help her. Finally it was only a detailed blood test and sonography was done, it looked suspicious. We were advised to go for CT scan of abdomen. Den we were told that she hs an enlarged spleen cos of all her organs has been pushed to the right side and low grade NHL. after biopsy, it was confirmed she has Marginal Zone Lymphoma, a sub type of NHL. In Jan 2013, she had to undergo splenectomy n at the time of surgery, the size of her spleen was 50 cms. We are awaiting the doctor's opinion on her first follow up visit in June 13.

micah00

symtoms

I had lymphnodes swell on the side of my neck and also I would get chest pains and a headache when I tried to drink alcohol. My oncologist said 1% of people have alcohol as a symtom.

kristie1977

Symptoms - Not yet diagnosed

I am going in on the 28th for a biopsy.  Here are my symptoms.  Swollen lymph nodes on the left side of my neck (have been swollen since Dec 2012), they didn't hurt until about 2 months ago.  Now it's an aching hurt all the time.  Headaches, night sweats, extreme fatigue, get winded very easily, coughing, unexplained itching on my feet and up my legs.  I now feel as if my body is achy all the time.  Kind of like when you've been in bed too long and slept all day achy.  Anyone else with these symptoms?

gert12

Waiting on Lymph Biopsy

I am 35 Mother of 4, and scared. It  has been a long wait for dianosis, my husband and recently moved to another state and in to a new home so my symptoms I assumed were allergies to the new home. My symtoms started with a strange pain in right rib. Then came a problem with a fluid build up in my ears. Antibiotics were prescribed only to have the ear trouble persist. Then comes swollen glands and nodes in my entire neck region. They werent painful I just knew they were there. All this time and it's been a year I have been without insurance due to not being able to afford it. So they never did any tests besides an ultrasound for the right rib pain and found nothing and also a chest x-ray which found nothing. Sometime last yr 2012 in November I started having severe panic attacks which were happening daily. I finally after realizing they were not getting better caved and went on zoloft 75mg. The panic is better and as of 2 months ago obtained insurance, phew! So the tests begin, you name it blood tests, hiv, lyme, lupus.......so far this is what I have: Blood tests came back great, vitamin levels are great, white and red counts are great but still waiting on the Lyme test to come back. Also during this time a Mri of neck was performed which found enlarged nodes varying between 1.5 and 2 cm from my neck down to my armpit area. Clear in the center chest area which doc says is a good thing! A ct with contrast was also performed finding nothing in the chest and upper abdomen area. So here I am waiting till November 12th to get into an oncologist for a biopsy.  Thoughts please is this a normal thing to wait this long for a biopsy? Also thoughts on the lymphoma diagnosis?

Elizabeth400

veedub said:

symptoms

out of breath on exertion (this went on for quite a while, maybe 6 months, before i felt anything else)

bloating in the stomach area--hard, not soft on palpation

elevated LDH levels on a blood test--this is a marker for cancer

so then i had a CAT scan, a sonogram, and a biopsy, which confirmed stage 3 b-cell lymphoma with a side of follicular.

underwent 6 cycles of R-CHOP, and then the PET scan showed the main mass to have disappeared, with only one small spot that may or may not be lymphoma, so we are keeping an eye on it.

chemo was rough but survivable. i am feeling lots better and my hair is beginning to grow back--i miss my eyelashes!  this site and my network of helpers were invaluable. if you need a lot of help with rides to treatment, food, etc, you can start a Lots Helping Hands website and enlist people. https://www.lotsahelpinghands.com/ will tell you what to do. right after i got through with treatment, i found out that my cousin in iowa had a recurrence of his cancer, so his brother set a site up for him. and the ACS has a ton of resources, like free cab rides to & from treatment, free wigs, and so on.

 

good luck!

 

v

LDH Levels

Hi 

About your LDH:

I've read that this can be used as a tumor marker and mentioned it to my PCP last week because mine was over 1,000 (1,014?) on June 9th. She said it's not necessary and that my blood test was "normal". Well "normally" I would take her for her word, but reading your symptoms and the list of symptoms I've had for 11 months now, I'm not so sure I'm "normal". Is LDH a definitive tumor marker, and at what levels are cause for concern? 

Thank you and bless you. 

 

 

Elizabeth400

gert12 said:

Waiting on Lymph Biopsy

I am 35 Mother of 4, and scared. It  has been a long wait for dianosis, my husband and recently moved to another state and in to a new home so my symptoms I assumed were allergies to the new home. My symtoms started with a strange pain in right rib. Then came a problem with a fluid build up in my ears. Antibiotics were prescribed only to have the ear trouble persist. Then comes swollen glands and nodes in my entire neck region. They werent painful I just knew they were there. All this time and it's been a year I have been without insurance due to not being able to afford it. So they never did any tests besides an ultrasound for the right rib pain and found nothing and also a chest x-ray which found nothing. Sometime last yr 2012 in November I started having severe panic attacks which were happening daily. I finally after realizing they were not getting better caved and went on zoloft 75mg. The panic is better and as of 2 months ago obtained insurance, phew! So the tests begin, you name it blood tests, hiv, lyme, lupus.......so far this is what I have: Blood tests came back great, vitamin levels are great, white and red counts are great but still waiting on the Lyme test to come back. Also during this time a Mri of neck was performed which found enlarged nodes varying between 1.5 and 2 cm from my neck down to my armpit area. Clear in the center chest area which doc says is a good thing! A ct with contrast was also performed finding nothing in the chest and upper abdomen area. So here I am waiting till November 12th to get into an oncologist for a biopsy.  Thoughts please is this a normal thing to wait this long for a biopsy? Also thoughts on the lymphoma diagnosis?

How are you?

Hi Gert12, 

 

Just wondering what the results were of all your tests and biopsy, I'm sorry you haven't received a response yet. 

 

Blessings! 

grannyx4

Jewel41510 said:

With me I put it off and put
With me I put it off and put it off until I couldn't ignore the pile of symptoms that had built up.

I itched like crazy, it would wake me up and I would scratch until I scabbed - pretty intense.

I lost about 30 lbs in a 6-8 month span without any effort

I was always tired, kept up from the itching I thought

Night sweats not soaking just overly warm always

Swollen lymph nodes in the neck

Not everyones symptoms are the same, and some have no symptoms at all.
Hope I was of some help. Sending well wishes your way.
Joleen

My son had similar symptoms

My son had similar symptoms with Mantle Cell Lymphoma

grannyx4

ldot123 said:

Thought it was a bad virus
Hi there,

I felt under the weather all the time and once in a while got really sick - fever, night sweats enough to have to change the sheets. Initially was told it was a flu virus. Oh yes and also very fatigued with some weight loss- not much though. Finally went to a doctor who decided to do a chest xray and there it was a large tumor in the chest. They called me back to the doctor by the time I got home from the Xray. Went in the following week and had a biopsy done - they did not get a good sample and so had to have another one. Hodgkins was found - had chemo and radiation which did the trick - 20 years ago.

Cheers, Lance

What a GREAT reply to read. 

What a GREAT reply to read.  I hope you continue your good health

Natashav2003

forme said:

Few symptoms
Hi, I am new to this site. I also have enlarged spleen and liver. Very Very tired. Full feeling after small meal. Enlarged node/small mass in mediastinum area found by ct. My pcp wants me to do nothing. Maybe get a Pet scan in a few months. I am trying to find a hematologist to do the scan now. I have had some low grade fevers and some mild night sweats with the a/c running full blast. Also had severe pain in chest with breathing in June. This is why ct was done. Never found out what caused the pain. Lasted about a month using big dose narcotics. Dr from the hospital where I had the ct called a few weeks later and wanted to know how my lymphoma workup was going. That was the first time I had heard about lymphoma from any Dr. My PCP still wants me to wait and do nothing. My husband and I think we should not wait. I really just don't feel right. How did the Dr know about lymphoma with only a ct showing enlarged spleen. Did they do any other testing. I just know something is off with me and that waiting is the wrong answer. Thanks so much for any advice.

Just wondering how things are

Just wondering how things are with you? I know this thread is 5 years old but your symptoms, or lack there of, sound very similar to mine...were you ever diagnosed?

Weenie97

Lymphoma symptoms

Hey! 

I barely know where to start but I believe I may have lymphoma (or Google has me super paranoid)

About 3 months ago, I started having drenching night sweats. I can't sleep well when it's hot so our bedroom at night was never over 72°. My husband would get up at 7am for work and wake me up to tell me bye, my cloths would be damp, my hair also and I'd be freezing my butt off . I've never been much of a sweater at all so this was strange to me but I ignored it. 

About a month later I started itching every where. Especially my scalp, (I got checked for lice, not it) a few weeks later I started developing bumps and sores on my scalp. And then random red pimple break outs which didn't make sense to me because this is the least I've wore make up in for ever. I thought maybe it was just caused by the night sweats. But I ignored it as well .Then every other day I'd get a clenching almost painful feeling on my left side of my chest. (Yes I do smoke but usually no more than 5 a day if that because I almost constantly keep head aches.) Sense about 6 months ago I've lost about 15lbs and I've certainly not been on a diet. I just blame most of it on stress. I'm always tired and being awake for more than 4 hours drains the life out of me, but I figured that came with having a toddler and a baby. Little over two weeks ago I was scratching like a mad man and I noticed a lump in my neck. Just a bit smaller than a marble, like a rubber ball and it'll move around if you press on it. It doesn't hurt at all and it hasn't went down any. My mother said it could be just an infection but I haven't been sick or anything in months. It's right above my right collar bone. So I googled it like I do everything and all these symptoms started to make sense when I seen the word "lymphoma" pop up on my phone screen. I have an appointment with my new family Dr on Thursday and hopefully they'll send me to a specialist or something.

So if you have had lymphoma or known someone, your opinions, experience, and comments would be deeply appreciated.  

Max Former Hodgkins Stage 3

Weenie97 said:

Lymphoma symptoms

Hey! 

I barely know where to start but I believe I may have lymphoma (or Google has me super paranoid)

About 3 months ago, I started having drenching night sweats. I can't sleep well when it's hot so our bedroom at night was never over 72°. My husband would get up at 7am for work and wake me up to tell me bye, my cloths would be damp, my hair also and I'd be freezing my butt off . I've never been much of a sweater at all so this was strange to me but I ignored it. 

About a month later I started itching every where. Especially my scalp, (I got checked for lice, not it) a few weeks later I started developing bumps and sores on my scalp. And then random red pimple break outs which didn't make sense to me because this is the least I've wore make up in for ever. I thought maybe it was just caused by the night sweats. But I ignored it as well .Then every other day I'd get a clenching almost painful feeling on my left side of my chest. (Yes I do smoke but usually no more than 5 a day if that because I almost constantly keep head aches.) Sense about 6 months ago I've lost about 15lbs and I've certainly not been on a diet. I just blame most of it on stress. I'm always tired and being awake for more than 4 hours drains the life out of me, but I figured that came with having a toddler and a baby. Little over two weeks ago I was scratching like a mad man and I noticed a lump in my neck. Just a bit smaller than a marble, like a rubber ball and it'll move around if you press on it. It doesn't hurt at all and it hasn't went down any. My mother said it could be just an infection but I haven't been sick or anything in months. It's right above my right collar bone. So I googled it like I do everything and all these symptoms started to make sense when I seen the word "lymphoma" pop up on my phone screen. I have an appointment with my new family Dr on Thursday and hopefully they'll send me to a specialist or something.

So if you have had lymphoma or known someone, your opinions, experience, and comments would be deeply appreciated.  

Classic

Weccome, Weenie.

Nothing but a biopsy can confirm a cancer diagnosis, not even a PET scan.

But it is reasonable for you to see a doctor.  About the only cause of night sweats, besides lymphoma, is hormonal imbalances, which is why they are common in menopausal women. Itching is also a classic sign of lymphoma, as is of course a lump detection.

I would say that seeing the doc is much advised.  No cause for panic, but something you need to do,

max

ShadyGuy

Also

Best to start a new thread.

ShadyGuy

I agree with Max

Only additional thing I would advise is that you go to an oncologist. Many (most?) GPs wouldn’t recognize lymphoma if it walked up and introduced itself. Most GPs will just prescribe more antibiotics. Its what they are trained to do. Go straight to an oncologist.