Cancer Survivors Network

Hi. First we have to remember that each individual case is different. Lymphoma does not seem to have any bounderies and I am a perfect example. I had lymphoma in my face and not in my lymph system where it should of been. Having said that my doctor is always checking for swollen lymph glands. The night sweats are also a common signal. A lump that seemed to be spreading and lots of pain was my final signal. But it still took the removal of a mass and 7 biopsies to find my cancer. There are proubly lots of medical problems that can cause the same symptoms as lymphoma so its always a matter of getting tests and scans done. And I will say I had a gut feeling that I would be dealing with cancer. 6 years out Slickwilly

Could yopu explain about what you meant by in your face. It was adnoids, tonsils or?

I would like to hear more about your story, it sounds so familiar to me.

I wasn't pregnant but I had medistinal lymphoma and a terrible cough, so hard I was vomiting every couple of hours. It started at night when I would lay down, I thought I was allergic to my down comforter and began sleeping on the floor. I also had a strange ache under the shoulder blade....so weird.

One symptom that I had that I've never heard before- for 3 or 4 months before I was diagnosed I had terrible constant pain in my neck and shoulders, like I had been in a car accident.

Yes - similiar symptoms as Joleen's. A year ago - first had itching then swollen nodes around the neck - was given antibiotics and they became smaller but still there. Then wintertime I was low in vitamins so got B-12 injections and supplements. My energy came back but later would have about once a month fatigue attacks. I lost about 30 lbs thinking that I suddenly became allergic to foods... Dr. called me mystery woman cuz she could not figure out what I have!! Three months later, she finally ordered me biopsy of the node and bingo, I have Hodgkins. My initial reaction was anger toward dr but am glad that I know what is wrong with me and people now realize I am not a hypochondriac! Will have PET and CAT scan next Monday. I am amazed how you and everyone survives such and fighting back. Please pray for me!!

Thanks,
Liz

Liz
We will pray for you. It is a scary thing to hear the word CANCER. I do not know how old you are, but it is not like it was years ago with this disease and we would hear that word. It is still not easy to deal with none the less. As you find out what we have and discuss on this site is very treatable. It is a pain in the ass with the treatments to control it though. Most of us have started treatments or finished them and some are waiting to begin treatment. We are pillars of strenght to each other here. I am sure if you are like me you have wore your computer out searching for answers. Just be careful with what you read. A lot of the info on some of these sites are way outdated. Some have some good info. You just have to learn which ones to rely on. I think your best source of info will come from the people here. They have or will go thru what you are talking about. John

Thanks, John for helpful tips. I found out about my diagnosis 4 days ago. My mind is exploding with questions and I know I gotta take one thing at a time. I say to myself wow I have cancer - I am 53 - yes, I am taking in a lot of strength and hope from people here and am happy to know about this site. I do look forward to a new and meaningful journey. Liz

Liz,
Believe me I know exactly what you are going thru. I did not know what to do when I was diagnosed a few months ago. I searched every site on the computer. That was a bad idea, but I didn't know what else to do at the time. Those sites are statistics and statistics only. and they may never pertain to you. Everybody is different with this disease. It took me a month to find this site and it was just by accident. I tell you I was a mess for that month. You will never feel as alone again in your life. There are at least 66,000 cases of nhl diagnosed every year. Thats the ones that are diagnosed. At least that many go undetected. I get a lot of my info from the cancer center where I go in North Carolina. It sounds crazy,but if we must have cancer and 1 out of 6 people will sometime in their life have it,this is the one to have from what I hear. It is a common cancer and very treatable. Stick with us and we will try to walk you thru it as best as we can. John

Liz,
Believe me I know exactly what you are going thru. I did not know what to do when I was diagnosed a few months ago. I searched every site on the computer. That was a bad idea, but I didn't know what else to do at the time. Those sites are statistics and statistics only. and they may never pertain to you. Everybody is different with this disease. It took me a month to find this site and it was just by accident. I tell you I was a mess for that month. You will never feel as alone again in your life. There are at least 66,000 cases of nhl diagnosed every year. Thats the ones that are diagnosed. At least that many go undetected. I get a lot of my info from the cancer center where I go in North Carolina. It sounds crazy,but if we must have cancer and 1 out of 6 people will sometime in their life have it,this is the one to have from what I hear. It is a common cancer and very treatable. Stick with us and we will try to walk you thru it as best as we can. John

Liz,
Believe me I know exactly what you are going thru. I did not know what to do when I was diagnosed a few months ago. I searched every site on the computer. That was a bad idea, but I didn't know what else to do at the time. Those sites are statistics and statistics only. and they may never pertain to you. Everybody is different with this disease. It took me a month to find this site and it was just by accident. I tell you I was a mess for that month. You will never feel as alone again in your life. There are at least 66,000 cases of nhl diagnosed every year. Thats the ones that are diagnosed. At least that many go undetected. I get a lot of my info from the cancer center where I go in North Carolina. It sounds crazy,but if we must have cancer and 1 out of 6 people will sometime in their life have it,this is the one to have from what I hear. It is a common cancer and very treatable. Stick with us and we will try to walk you thru it as best as we can. John

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

I can't believe how similar our stories are. Looking through these posts I am just amazed that my doctor didn't know earlier! As mean as it is, I'm glad I'm not alone. Sorry!

How are things going now? Where are you in treatment?

first time around i had swelling in the neck second time a huge lump in the middle of my throat twelve years later

Almost none. A small bump on my upper thigh which I figured was nothing. Thankful that I had a good PCP who pushed me to get it examined.

I am new here and just reading up on Hodkins and I learned alot from you all. Two months ago I noticed a large growth in the clavical area. My doctor sent me for an MRI and xrays. They determined their is a mass in the lungs and swallon Lymphs. I have extreme pain in both elbows and swollen knees. My spleen has also been detected as inlarged. So many doctors and appointments until I found one that knows what they are talking about. I am still under going test and a bit scared. I am 47 and have five children and dont know what to exspect next. It is a week away until my next appointment at Mount Signi Hospital Cancer Unit in NYC.

Hello,Greg,

It's been over a month - how did things go for you? I feel scared too but feel less when I hear all the supportive comments from you and sharing here. I also have HL and have to wait for the more detailed results this Thursday for treatment options ... Thanks for sharing and you are in my thoughts for good things to happen to you.

Liz

Hi Jamaitrumble,
Wow...can I ever relate to your experience. Glad to hear things are going well and the Cancer is responding favorably to the chemo, keep up the fight. Your obvious good mental attitude will prove to be very important, don't allow the occasional difficulties with the Chemo wear you down. Thanks for sharing your experience.
DennisR

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

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

on the earth can be against health care reform?

I haven't seen any posts from you lately. How are things going for you? What was your diagnoses exactly? Mine was follicular nhl stage 4. My tumors are located in the abdomen, but the chemo is shrinking them quickly. Just hope it continues that way. I have only had one round and it is kicking my butt. I know it feels like we are not going to make it sometimes, but when you read some of the posts here it does give you a lot of hope. They have come a long way in the past few years with this stuff it seems. Hang in there we are here to help each other. John

Your symptons sound just like my husbands he had a stuffy nose and could not shake it went to the pcp and he said it was sinus, then got nosebleeds and we went to the ENT, and it was
nasal pharyngeal carcinoma stage 1 haed 31 radiation treatments went through a lot of mouth dryness and sores it's been almost 6mths since his last treatment his scans were good he goes back in November hopefully it will all be good the scarey thing about this is that it can come back anywhere. Hope everything goes well for you. Pray as much as you can.

i hope everything goes well for your husband. I just wanted to know how did they diagnose him exactly? was it just a nasal endoscopy? or a CT scan? both? I hear that MRI arent as effective. I myself am worried since Ive had these symptoms for a while however I also have itches and a rash on my abdomen that really worries me. I wish him the best.

Thank you

Gil

Hi it's been awhile since I've been on this chat, my computer crashed it was a hassle trying to find everything again. My husband was diagnosed with a biopsy from the nose, the ENT thought it was a polyp and decided to biopsy it first, it came back as NHL, NPC, he had 31 treatments of radiation and had awful side effects, they ended in May of 2009, he has recently contracted an infection he went back to the ENT, and he cultured his nose and said he has a staph infection, he's been on antibiotics, but he had to have a repeat pet scan and the Oncologist called and said he saw some abnormalities so he's going back next week we are on pins and needles again. I hope the monster isn't coming back. I am praying for all of the people on this chat. It's so imporant. If I can be of any help let me know. God bless you.

I hope that things turn out well for you. They do sound hopeful. I am writing you because I would like to know a little more about how they went about your diagnosis. Was it only the nasal endoscopy? or did they also perform a CT scan in the beginning? Did you have any rashes on your body?

Thank you so much. I am concerned as not only have I have chronic sinus problems (dry throat, stuffy sinuses, slight voice change bc of mucus I believe) I have had a persistent itch in between my glutes, but specifcally one strange and itchy rash on my upper abdomen. i am going to see a dermatologist. I have also had feelings of weakness for a couple days but thought nothing of it as I just thought it was the onset of a flu that never hit me. After reading that this may be a cause, I am really worried. Im also scared to death of CT scans and hope that maybe just a nasal endoscopy and/or MRI will do the trick.

I hope you can help me... I would appreciate your advice on what i should do. The best of luck!

God bless,

Gil

Hi was wondering how you are doing? My husband also had it in the right nostril, and then after he had radiation treatments 31, and clear pet scans we thought he was out of the woods, a year later he got sick again sinus infection again but we knew this time that it might be the return of the monster and they scanned him and sure enough lymphoma non hodgkins, now he is getting chemo chop which is making him so tired I was wondering how you are and which chemo did you get? The scan showed the cancer in the sinuses and other areas as well his sturnem and spine. We need to hang on to God it's all we can do. God bless you hope you are well.
Lisa

Hi was wondering how you are doing? My husband also had it in the right nostril, and then after he had radiation treatments 31, and clear pet scans we thought he was out of the woods, a year later he got sick again sinus infection again but we knew this time that it might be the return of the monster and they scanned him and sure enough lymphoma non hodgkins, now he is getting chemo chop which is making him so tired I was wondering how you are and which chemo did you get? The scan showed the cancer in the sinuses and other areas as well his sturnem and spine. We need to hang on to God it's all we can do. God bless you hope you are well.
Lisa

Hi was wondering how you are doing? My husband also had it in the right nostril, and then after he had radiation treatments 31, and clear pet scans we thought he was out of the woods, a year later he got sick again sinus infection again but we knew this time that it might be the return of the monster and they scanned him and sure enough lymphoma non hodgkins, now he is getting chemo chop which is making him so tired I was wondering how you are and which chemo did you get? The scan showed the cancer in the sinuses and other areas as well his sturnem and spine. We need to hang on to God it's all we can do. God bless you hope you are well.
Lisa

When I was diagnosed in February 2007 I really wasn't too surprised. My wife, an RN, dragged me to the emergency room with a temperature of 103. Ironically, my daughter also an RN was on duty that night and was called to my bedside. Up to that point I had ignored warning signs of hot/cold sweats, nausea, swollen abdomen and sharp electric shocks through my chest. Needless to say, I pay much more attention to my body now. I am 53 and recently ran the Denver Half Marathon. I feel good and my quarterly checkups continue to be good as well. The statistics point to a recurrence, but I am not fazed. I believe in living in the moment and thanking all those those that have gotten me to this point. I have faith.

Boy as I read these posts it is amazing how we are somewhat all the same. I got sick the end of August. Head cold. couldn't fight it so I went to my gp..she did blood and gave me a perscription to get filled for antibiotics. Before I was 10 minutes away she called and told me to go to a radioloy place here in town and get a chest xray. thought I had pneumonia.And come back to the office don't go home. I got the xray. returned to the dr office. they gave me a shot of antibiotics. She said my white blood count was way too high. Went back 3 days later.. the same . another shot. different antibiotics. Went on and on with that for a bout 2 weeks getting blood test after test. Finally she told me they were calling a hemotologist to set up an appt for me. Well I had not idea what to expect. I went to the appt and walked in and on the wall was Cancer Center. My gosh was I shocked. Went in to see the dr. He thought for sure I had CLL but after the BMB he found out it was stage IV follicular lymphoma. I did not have a lot of symptoms. I was warm at night but I have been going thru the dreaded menopause so that wasn't anything new. I was getting more and more tired. I thought that was age..Now that you all talk about it I did get itchy sometimes. I am pretty sure my dr knew when she sent me what it might be because she told me not to worry it might not be anything.. Yea right!!
It sure does change the way you look at things. Little things become a whole lot more important and I am not in such a hurry anymore. I have faith that God will take care of me!
Patti

About 4 years ago I felt a small ball at the right side of my upper neck, it didn't hurt, itch or grew in size; that was when I was 31. I was always hot to the point that the palm of my hands would get red and that was about it. No pains or other symptoms until 2006 were I had night sweats only but thought that I was just hot and nothing else. in 2008 The fevers only once in a while but not more than 100 degrees and thought I was just fighting off some type of cold, only a few rashes this year and thought they were bed bugs since I was traveling and staying in hotels. In Sept. of this year the lymph nodes around my groin area were slighty enlarged but didn't think nothing of it (just maybe extra muscle). In Oct. this year I was bathing and noticed this large ball trying to hang out my right amrpit, that's when I almost fainted when I first saw it. When to the doctor and he did blood work and found nothing, he suspected lymphoma and sent me for a CT-Scan and showed that I had a whole bunch of enlarged lymph nodes inside my body including an enlarge spleen. A week later got a biopsy done and the results came back as Indolent FNHL grade 2 of the B cell type. Now I have an appt. at Memorial Sloan-Ketterin Cancer Hospital in NYC on the 24th of this month. Now I am feeling the pains in my neck, chest, abdomen and weird, at the heel bone of my left leg. Can't wait until I start treament and start feeling better, althought the oncologist said it would most likely come back. Keep posting treatments and any new information, together we can help eachother. God bless all.

Edwin

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.

FORME,
FIRST OF ALL WELCOME TO THE SITE. IT IS LIKE ONE BIG FAMILY HERE. NEXT, LET ME SAY IT GENTLY. YOUR PCP IS AN A**HOLE. YOU HAVE THE CLASSIC SYMTOMS OF LYMPHOMA. ANY DR. WITH HALF A BRAIN SHOULD SEE THAT. I DO NOT THINK THEY CAN TELL JUST FROM AN ENLARGED SPLEEN AND LIVER IF YOU HAVE LYMPHOMA OR NOT, BUT AN ENLARGED SPLEEN AND LIVER IN ITSELF IS NOT NORMAL. A CT SCAN WILL SEE ANY ENLARGED LYMPH NODES AND IT DID SEE A FEW.I AM SURE THEY SAW SOMETHING FOR HIM TO MAKE THAT STATEMENT. THE LYMPH NODES IS WHAT I SUSPECT. I DON'T KNOW WHY THESE HALF WITTED DRS. ALWAYS PASS THIS STUFF OFF AS SOMETHING ELSE THAT COULD BE CAUSING THESE SYMTOMS. LYMPHOMA IS NOT A RARE DISEASE. 66,000 PEOPLE WILL BE DIAGNOSED THIS YEAR WITH IT. IT IS TREATABLE,BUT ONLY IF IT IS TREATED. IF NOT IT CAN BE DEADLY,JUST LIKE ANY DISEASE IF LEFT UNTREATED. BY ALL MEANS HAVE IT CHECKED FARTHER. YOU ARE PAYING THE DR. TO FIND OUT WHAT IS WRONG WITH YOU. HE IS NOT PAYING YOU TO COME AND SEE HIM. IT TICKS ME OFF WHEN I HEAR ABOUT THESE DRS. THAT HAVE THAT WHOLLIER THAN THOU ATTITUDE. SORRY ABOUT GETTING UP ON THE SOAPBOX,BUT WE ARE TALKING ABOUT YOUR HEALTH AND WELL BEING. REMEMBER WHEN YOU LEAVE THE DRS OFFICE HE JUST GOES TO THE DOOR AND YELLS"NEXT". YOU ON THE OTHER HAND HAVE TO GO HOME WITH THE PAIN SUFFERING TO DEAL WITH. BELIEVE ME, IF IT WAS HIM OR HIS FAMILY THEY WOULD BE CHECKED FROM HEAD TO TOE.

Hi again, I found your response. Thanks for the support. I hope that Monday I will get a call back from the local cancer center to set an app with a hematologist. It just makes sense to follow this through with or without my pcp. He is really not to bad, just believes in taking a slow approach to things. I usally agree with him, but not this time.
I will keep you all posted. Thanks for the welcome.
Lisha

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

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

UcanDOit-
I dont think the xray tech goofed, sounds like the hand of God at work! Good to hear you are healthy this many years after diagnosis.

I am 3 1/2 years into remission from NH Large B Cell mediastinal. Itched so badly my husband compared me to a mangy dog. I scratched until I bled. Had a non productive cough for 6 months. My face swelled so bad that my eyelids hung over my eyes - found out later that was Superior Vena Cava syndrom, where the tumor was pressing so hard against the SVC that it was reducing blood flow causing the swelling. I was stubborn, thought I was "just tired" until my beathing got so bad I could not walk across a small room without stopping to take a breath.

Finally went to the doctor (I had not been to a doctor in years, and always hated hypochondriacs) and he sent me for a chest xray. Found out that day that although they still wanted to do a biopsy that they were pretty sure it was cancer. Just needed the follow up to find out what kind. 7 cycles of R CHOP chemo, 31 days of radiation, and I thank God everyday for my life, and that it was me and not someone I loved that had to go through this.

My husband lost his job and our health insurance while I was going through treatments, but he took another job with a massive pay cut just for insurance coverage. Anyone who can say that Health care reform is not necessary has never been through a devestating illness. With all my treatments, I was septic twice and also had a few instances of passing out so there were five different hospital stays.

I am now a much more compassionate person. And I never miss my doctor appointments, with ANY of my doctors! Just had a scare from my recent scan 3 weeks ago, but a biopsy turned out benign, so I am very happy! Now his company is getting ready to close its doors, so time to find another health care coverage....

I was diagnosed in April 2010 with follicular nhl. I had a ct scan to in Jan.to routinely check my bladder and kidneys for any abnormalities during a urology exam. All came back negative except several enlarged lymph nodes in my abdominal area. I never had any symtoms at all. I was sent to the oncology center and was diagnosed. stage 4 follicular. I was on the watch and wait thing until June 2010 and started R-cvp. I had one round so far. 5 more to go. Had some muscle and lower back soreness.
What is your exact diagnoses? John

I had Hodgkin's, and the symptoms are pretty much the same I guess. Severe itching (particularly on my legs) night sweats, fatigue, weight loss, cough, and poor immune system. I got sick about twice a month for over 4 months before I was diagnosed. I also had a tumor the size of a golf ball in my neck, and a bunch of other small ones all over.

I was diagnosed in 2005 after going to my doctor for a plugged up ear. First, he put me on antibiotics for 10 days and told me I had fluid behind the ears. When that didn't work, he gave me Benedryl for a week. Finally, he sent me to an ENT, who found a tumor in the back of my throat. After many tests, they found I had an aggressive tumor in my nasel pharnyx and two in my neck. The tumor in my nose was causing my ear to plug and not allowing it to drain. I was stage II Large B-Cell and underwent 6 rounds of chemotherapy followed by 22 radiation treatments. It has been 5 years now and I am still cancer-free. When I think back to other possible symptoms, and did itch alot and had night sweats and loss of appetite, but never related it to being anything, especially cancer.

My mom had a bit of discomfort in her abdomen. All tests came back negative and she was then asked to take part in a new dye for ultrasound testing and that is how they saw the mass in her liver. Now 5 rounds of R-CHOP are in the books.

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

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

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

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

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 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

Debbie,
we are behind you all the way. We run into those postponements all the time and it gets to you sometimes. hang in there things will get better. John (FNHL-1-4A-5/10) REMISSION

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)

Hi Deb.

Really sorry to hear your long story. I do hope that your baby is OK. You did not say otherwise. He/she is your future. I can say that as an old guy, much older than you, who has 3 of my own - now with 3 grandkids.

What I wanted to tell you is, good luck with your biopsy tomorrow. I'm praying for your test and I know that we are all wishing you the best results. You didn't choose this path, but you've got to run the race and do your best to be there long term for your family.

Good luck,
Tom (DLBCL-4-7/10)

Hi Tom, thanks for your reply and thoughts. Yes my baby was fine after the delivery, thank God!! She's 9 now, and the light of my life. I couldn't have anymore children because of all the complications that I experienced. Biopsy was cancelled today because I contracted conjunctivitis, so I am now waiting until next thurs. Oh well! Hope you are well, thanks again!
Deb (HL-1994)

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

Wow... Cathy our stories are so similar! I also had ABVD treatment with the RADS. It seems to me that IDC is a very common BC to get following the treatment that we had. I realize that I can't have anymore radiation, but can't they just do a lumpectomy or is that just not enough and too much of a risk that it will return? The radiologist said the mass is very small, about 1/4 of an inch, does that matter? How big was yours? Also the lump is in the opposite side where I had the radiation. The radiation was near the left breast. Does that matter? She also said after the biopsy results come in, I'll have to have a breast MRI. Will that show more? Sorry for all these questions. I'm just trying to get some more info. Hope you are doing well and I wish you the best!
Deb

My BC tumor was .3 cm, very small in my left breast. They did a core needle biopsy and got clean margins. All my docs felt the only treatment of choice would be a double mastectomy, no reconstruction, and I agreed. After the DMX, the pathology was, additional finding of DCIS in the left breast and LCIS in the right, supposedly "good" breast. Docs said I would be back in 5 years or so with another BC in the right if I didn't take it then (LCIS). Because we can not have additional radiation, this is the recommended treatment option. I had the oncotype testing done on my tumor and it came back that chemo would reduce the risk of recurrence by 2%, I opted out. Tamoxifen reduces the risk by about 40% taking my risk from 10% to 6%. I debated long and hard about this. After 5 months I started Tamoxifen. Two months in, I had gyno problems so an US was done. I had a complex ovarian cyst and elevated CA125 levels. I stopped the tamoxifen after 2 mos, but it wasn't the cause of the issues. My ovary was benign but my CA-125 level is still high and I have more cysts and uterine polyps, that's another problem that I'm awaiting surgery on!! Additionally, I had a TIA last summer, so going back on Tamoxifen is a no, no. It is very strange to know, I really haven't had treatment for BC.

My breast MRI didn't help much. MRI's do not show calcifications that could be BC. A mammo detected my calcifications.

Have you read the posts on the Long Term Effect discussion board on CSN? Also, there is a wonderful mailing list here: http://www.acor.org/mailing.html?l=l
You can join the list for LT - Survivors on ACOR.org. It is a wealth of information and lead me to a Long Term Effect Specialist at Memorial Sloan Kettering Cancer Center in NYC.

Isn't the waiting horrible? How is your heart situation, how often do you get monitored for that? Again, crossing fingers that your biopsy is benign. Ask any question that you may have and I'll be happy to try to answer it!
Cathy
HD 1989 - RADS
HD 1994 - ABVD
IDC, BC 2008 - DMX

Hi Cathy.
Sorry it took me a while to respond, things have been crazy around here. So the biopsy came back positive for IDC, The breast MRI shows multiple areas in both breasts that are noted suspicious. The radiologist recommends bi-lateral masectomy. Do you know that not one Dr has said to me go get an opinion from an oncologist before surgery. Apparently that's the way things are done. I am flabergasted that we are to make this kind of descision on our own. Luckily, stupid is not my middle name and I am consulting with the oncologist that treated me for the HD. I am not using him for the BC because he's too far away. My new oncologist wants to see me 2-3 weeks post surgery. I would think she would be in the loop on what type of surgery to have. Nope, not the way it works. Curious to know why you did not have reconstruction. You were so young. I am planning on reconstruction, as I am not ready to give up the girls yet. The surgeon told me 4-6 weeks to play with, 2 weeks of that is gone already. I'll see my old oncologist on wednesday and then schedule the surgery. I know it will probably end up being a BLM, but I need to hear it from an oncologist before I do it....and they also told me chemo is probably a definite.

My heart condition is fine. I take toprol to control it....I see my cardiologist every 6-12 months...how long was your recovery from your surgery? Is there a link with tamoxifin and TIA? Interesting.....Have you been able to work all these years with the problems u have had?

Hi Deb,

So sorry to hear of your results.
My radiation onco from the HD had always said, you know if BC crops up, a BLM is the way to go. I only consulted w/a surgeon who was in contact w/my rad onc and my hemotologist prior to surgery.
As for reconstruction, my rad onco strongly recommended not to consider it. It is another major surgery plus you never know how our raiation damaged skin will heal. I could agree w/these statements as well as wondering how a recurrence at the chest wall would ever be detected. I've been pretty ok w/no reconstruction until going to Punta Cana this year and seeing all the "girls" staring at me! One positive, it's nice not having the extra weight hurting my shoulders. I have read of many success stories w/reconstruction for patients like us, so go for it!
Are they doing an oncotype test on your tumor? That will help in deciding if chemo is recommended.
to answer your remaining ?'s: Surgery recovery was 2 weeks, but remember, no reconstruction. Tamoxifin could cause uterine cancer and or blood clots. I have been working all these years. It takes all my energy to work full time plus, run around to my 2 daughters activites, take care of the house, yard and paperwork! You know the drill!! Just hoping my heart problems remain stable so my energy level doesn't fall even more.
Good luck w/your consult. (I went to a BC specialist after surgery and she agreed w/the BLM too.) You will be relieved when you have your surg date and can begin to get back to the "new normal" once again.
All the best,
Cathy