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

allmost60 said:

Absolutely get this checked out!
Hi forme...
I joined this site on July 8th-10, after being diagnosed with Follicular NHL on June 16th-10, so I too am fairly new here. John is absolutely right telling you to get this checked out. In Jan of this year I found a tiny lump on the left side of my neck and then a few weeks later I found another lump on the left side of my groin. My PCP sent me immediately for an ultra sound on the groin lump because it was bigger than the one on my neck. The results showed enlarged lymph glands plus 3 lumps. My PCP decided we would wait until my physical in May to re-check the lumps because I was feeling great and had no outward symptoms to raise concern. Plus, I had just gotten over a bad bout with bronchitis and we thought maybe the lymph glands were swollen due to medications I had been put on to get over that. Come May 25th...(time for my physical), I knowticed the lump on my groin had grown. Once again my PCP sent me in for a new ultra sound and low and behold the 3 prior lumps had not only grown, but 3 more had developed. Two days later I had a CT-scan which showed 6 tumors in my groin...swollen lymph nodes and lumps in the back of my stomach and 3 lumps in my neck, not just the tiny one I had felt in January. That was when my doctor first mentioned the possibility of lymphoma. He immediately scheduled me for a biopsy of one of my groin tumors(the largest of all lumps) which confirmed I had Follicular NHL...stage 3....Type A(un-symptomatic)...Grade 2/low. PCP immediately...(with-in 5 days of the groin biopsy results) had me scheduled to see a cancer doctor at our local cancer center. My cancer doctor scheduled a bone biopsy which showed no involvement in the bone as of yet. From May 25th to now, there has been alot of waiting for test results which can be "VERY" stressful, but I am soooo thankful to have a PCP that jumped on this from the moment he felt things weren't right with me...(lumps). I am currently in a "Watchful Waiting" time period and not receiving any form of treatment, and won't until the cancer involves the bone, or some other part of my body, or I start having B symptoms. This is a weird period of time for me, because I always wonder..."Where is it going and when"?? Anyways...please pursue further diagnosis even if it means finding a new PCP. John is 100% correct when he says.."If it was the doctors family member, he would have them checked out from head to toe"!! YOU should be treated no differently! Let us know how it goes for you.
Sue

Thanks
Hi, thanks for the welcome and the respone. I am planning to try and get an app with a hematologist on Monday. I do think that I know my self and myself says to get checked. Things just don't add up for me. What is starting to add up is lymphoma. I hope it is not the case, but if it is, then I will deal with it.Thanks again.
Lisha

lees1953 said:

symptoms
this is why I love these support groups! we just need reinforcement sometimes

I didn't really have symptoms when I was diagnosed; had gone to DR for diverticulis; it wouldn't go away even after antibiotics so they sent me for scan. I had extremely swollen abdomen but ONC at first was convinced it was a result of the diverticulits.

now diagnosed as Stage IV follicular due to bone marrow involvement, I've been on WW since surgery in April. But the symptoms have kicked in!! I am bone tired, like when I was when I first got pregnant and something is sucking the life out of you...except that was 32 years ago!
I am so tired that often at the end of the day I cry all the way home from work..15 miles.
And I am burning up! not hot flashes just HOT! I am freezing my husband and co-workers, they bought me a fan at work like they use in the server rooms. Abdomen is still swollen
but I couldn't lose a lb if I tried; in fact I really eat less than before, but because the surgery couldn't be done laproscopy had 22 staples and took a long while to be able to walk much...but now the fatigue discourages me fro doing that.

DR says he will leave it up to me if I want to start Rituxin but he isn't sure it will help my symptoms? any of you? did it help your symptoms?? something needs to change; next visit Oct 5...any input? sheila

Hi I was just diagnosed a couple weeks ago with Stage 3 FNHL... pending results on my bone marrow biopsy... reading your symptoms is like what i am experiencing no sweats but i feel on fire at night .... so warm then go cold in the morning. It drives me nuts... Im curious what treatment did you do? I am 31 no kids yet (but want them bad) and would love to know how your treatment went since we are so close in age with same cancer . Hope all is well.

Thanks,
Jessica

webozo said:

jackie had night sweats had
jackie had night sweats had trouble breathing (she thought she was getting asthma) she also so had itching very bad itching she would scratch untill she bleed. the breathing was from the bigger turmor pushing on her lung she also would get light headed to the point of fainting. she had trouble sleeping. i don't know if this helps. jackie has hogkins.

Hogkins
Wonder how Jackie is doing now... I also have Hodgkins. I noticed that most of the posts deal with non-Hodgkins.

I too had ocassional night sweats, 30 lbs loss, itching, body aches and fatique. Swollen lymph nodes in neck, armpits and groin plus little on lung and pelvic area. I just started on ABVD chemo - and have all those side effects but mostly recovered now and then I go for the 2nd treatment next Tues. I pray for Jackie's recovery and mine. Thanks for sharing.

Liz

My symptoms
I was diagnosed March 26, 2009. In early February I had my regular doctor check up and all was well. Five days later I noticed a lump in my neck on the left side (on a Saturday). I did have about two night sweats but had no idea what that meant except I get hot sleeping from time to time. I had no weight loss or other symptoms. My doctor sent me to my allergist who is a n ENT doctor and he scheduled me for surgery to do a biopsy. I was devistated when he told me I had follicular lymphoma. The research started. Since I was leaving for a trip to Europe in a week, I was referred to an onologist who saw me in a day or two and within three days had all staging tests completed with result, except for the bone marrow result. The day after returning from Europe we were in the doctor's office and found out stage 3 with no bone marrow involvement and he recommended "watch and wait". I was not comfortable with that option and he called Sitemen Cancer Center in St. Louis and an ocologist was doing clinical trials. I saw her in June 2009. Found out my insurance will not permit any clinical trials but stayed with Dr. Bartlett at Sitemen who recommended "watch and wait", that was my second opinion. Near the end of August a new lump on my right neck appeared and I had a biopsy. Results show a few more larger cells but that was it. My doctor recommended R-CHOP, which sarted Nov. 18, 2009 and finished March 3, 2010. In May, I started Rituxan every three months for two years. Presently I have a rash that started 21 days after my May treatment and went away within a week. Now I have it back, starting 21 days after the second treatment. Dr. does not know what to make of it. I researched follicular lymphoma all the time. I keep a binder of all my tests and have copies of all reports. My oncology team is great. I did spend a week in the hospital a week after my last chemo due to neutropenic fever.

debra26 said:

Symptoms
My symptoms were just a hacking cough that would not go away. It was sooo annoying and every over the counter meds I tried didn't work. I don't remember having any night sweats until after I started chemo. I was so tired, I would get tired very easily and didn't even know why. My hair did start to thin out some and I just though I had a cold with some stress until I was diagnosed. I had the cancer in my lymph nodes in my chest and they collapsed my left lunch by the time I had my biopsy.

Are you hungry?

I am sorry, but it makes me chuckle. Are you feeling better now? I am glad to know that I'm not the only one who types odd things now and then.

Take care!
Beth

COBRA666 said:

typos
Beth,
Same here. I am not a typist by any means, but getting to be the fastest 2 finger typist in town. When I get done typing I go back and read what I typed and sometimes say to myself, What the heck is this. I can't even read some of the words. I have to go thru and correct all the misspells. Some I can't even figure out what they are supposed to be. Then sometimes I transpose the letters real bad. If I sent anything with out spell checking nobody would be able to read it. I know how to spell, but the chemo brain takes over, at least thats what I tell myself. I am sure a lot of us out there have started to notice this with their own typing when on chemo. John

LOL
Who needs chemo brain to type funky LOL. I say things wrong all the time and I talk on the phone all day at work. Sometimes people are laughing at me, sometimes with me. My tongue gets ties big time. It's a real pain in the behind when your job is talking on the phone LOL

I don't type fast by any means. I think I have to concentrate so hard sometimes it slows me down, although I do try to re-read what I write before sending email from work cause I make some pretty stupid mistakes. When they are funny it just makes it better.

Thanks
Beth

HL symptoms
Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! good luck to everyone!

Deb17910 said:

HL symptoms
Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! good luck to everyone!

Alot to deal with
Hi Deb,
You have really been through alot. I'll keep good positive thoughts for you with the biopsy on your breast tomorrow. You have a wonderful support group here to communicate with so please let us know what the biopsy shows. Try to stay strong and I'll keep you in my prayers. Love...Sue (FNHL-2-3A-6/10)

Chris17 said:

HL symptoms
You have been through so much, i wish you well and will keep good thoughts for you on the results, this website is for what you just did, you told your story, which i believe is theraputic, you need to be able to discuss what ever is on your mind, theres a lot of nice people here who are understanding and can relate to what you have been through so please dont feel bad about it.Keep in touch and let us know the results, good luck to you!
Chris (FNHL stage3)4-08 in remission

Thank you so much for the
Thank you so much for the support....It means alot. My biopsy has been postponed until Nov 4th due to me having contracted conjuntivitis! It never ends!! LOL. Will keep in touch. God Bless

Deb17910 said:

HL symptoms
Hi...I was diagnosed in 1994 at age 31 with HL. My symptoms were left shoulder pain ,only a couple of bad night sweats and rashes on both my palms on my hands. (my Dr. said usually the rashes are on the bottoms of feet. I was blown off a year before DX because of the shoulder pain. Dr said I probably hurt my neck. Finally, i couldn't take it anymore and was sent to an orthopedist, who did a xray of my shoulder and saw a large shadow, which prompted a chest xray and there it was....a large mediastinal mass. Did the biopsy thing....then 9 months of chemo followed by 6 weeks of radiation. What a nightmare the radiation was....I have had some health issues since all of that. In 2001 I had a baby and went into congestive heart failure due to undiagnosed mitral valve regurgitation. I was asymptomatic until i got pregnant. Yes, damage to my heart from the radiation treatment. I take meds to control it and its been fine. I also have SOB and a ton of scarring on my lungs also from the RADS. My normal chest xrays are not normal looking, it looks like I have TB, but I don't. I have hypothyroidism and take synthroid, also from the RADS. And now a lump was found in my right breast and it is being biopsied tomorrow. Trying to stay positive but it's hard. It's not a good sign when the radiologist asked me who my oncologist is. Didn't mean to tell my whole story,,,,,it just came out! good luck to everyone!

HL Survivor
Deb,

I too had HL in 1989 and 1994. I had Rads the first time and ABVD the second. I have hypothroidism, mitro valve regurgitation and augmentation of the normal blunting, whatever that means for the heart! I was dx'd w/Invasive Ductual Carcinoma in 2008 and had a double mastectomy, no other treatment, can't have radiation again. This all started when I was 29, I am now 50 and had 2 girls after each treatment (they are 14 and 17).

I wish you the best of luck w/your biopsy. I do know how you feel. Hopefully, they are being overly cautious and all will be ok. (I had wanted to do a prophylactic mastectomy before I got the BC dx, I just didn't push hard enough.)

It seems the further we get from our initial dx, the more complications from therapy crop up. It's a balancing act to be grateful for all these years and now knowing our health is so complicated from the long term effects of treatment.

Sending positive thoughts your way,
Cathy

HD 1989 - Rads
HD 1994 - ABVD
IDC, BC 2008 - DMX