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NHL--Our Stories (if you want replies, start a new thread)

gracie82159

New member
There is a post on the Hodgkins side that is a "sticky" at the very top of their list, where many of the members of that board have posted their stories about how they were diagnosed, their treatment regimens, etc. Is anyone interested in doing something like that on our side? If the administrators are listening...could we please do a "sticky" with ours too?

I will try to post mine some time over the weekend, but wanted to get it started while I was thinking about it, at Lizzie's (PugMama's) suggestion. Please feel free to jump in if you'd like to start.

Kathy
 

laura79

New member
Re: NHL--Our Stories

oh I wanna be one of the first
haha
Let's see my story is a bit out of the normal I hope. I was 23 and just graduated college. I started with a feeling of breathlessness that would come and go or a fat guy sitting on my chest in May-02, this prompted me to go to the doctors to get it checked, they did do a chest x-ray at my insistance of never being a complainer about anything but for worry about heart problems that run very excessively through my immediate family. I come to later find out that this chest x-ray was misread as normal when indeed there was an 8cm growth in my chest next to my heart! Well I continued to go back to the doctors over the coming Summer with multiple complaints that continued to worsen, not being able to breath well, a dry non productive cough that sounded like I smoked for like 50 years. They continually threw me on another antibiotic, or inhaler claiming walking pneumonia, brochitis, asthma all without further testing or even a blood test. By the time it gets to October, I am going to the gym and almost passing out on the elliptical cause I get dizzy from not breathing well, the coughing is horrible, I am sleeping sitting up propped against a wall cause I can't breath, I have a weight loss of 15 lbs in a months time, my blood pressure is skyrocketing, I have drenching night sweats etc. I go back and tell them all this and also show them the protruding third breast (tumor) busting out the over my left breast (they precede to tell me asthma still and call my tumor a muscle pull from workouts and coughing fits). Finally after me begging them and me asking for a lung specialist appointment, a rude answer from the b*tch reception lady who said well if it was really something serious they indeed would know!" My mom calls and gets me seen and finally to get a PFT which I fail with flying colors and the tech says, "this is not asthma" with a look of horror on his face. I finally get referred in to a lung doctor after the horrible PFTs and within like 2 weeks I'm fully diagnosed, with a honking 22cm tumor that's crushing my left lung, encircling my heart, breaking through my chest bone and coming up through my collarbone area! The diagnose is Mediastinal Large B cell Lymphoma, I choose a 2nd opinion from doctors in Boston and choose to go to Boston for my treatments after my horrible experience with local doctors even though the local oncologist was awesome I felt safer in Boston. I was told I had a very curable cancer, I needed treatments right away because hell knows when I was going to have organ failure from this monster tumor. I went through the BM biopsy and all tests in record time and immediately started CHOP+Rituxan, leaving the first Rituxan off because they were concerned about rapid tumor dieoff screwing up my liver and kidneys. I felt immediate relief within 1 week, my tumor immediately went down (3rd boob disappeared) and I actually heard my lung (no lie)pop up and I could actually breath!! Halfway through I was rescanned and had 80% shrinking of the tumor!! this was awesome news!! So I continued with my 3 other treatments hoping for the best. I was then told they would do 22 rads which they did and then well I thought that was it you know! Well my scans told another story which they think would not have happened by the way I responded and if my disease had been caught back in May-02 and not November-02. Apparently they think a piece of tumor or some cells broke off and spread to my left lung way down in the corner where rads did not hit, starting new tumors that were growing at about 1cm every 3 weeks. I was told my only chance for cure was ICE and high dose chemo with auto transplant, I was obviously devasted by this too thinking everything was going so well and being horrified by what was ahead for me. I went then to the reproductive doctor who told me my eggs at this point were still good but the bad news was it would take six weeks to do retrieve eggs and make them embryos then freeze them, after going over this with my docs I was told I didn't have time to do that with the aggressiveness of the disease, and it was my eggs or me, so at this point I obv. chose me. I did 3 ICE over the Summer of 03 and it shrunk the new disease, my original massive tumor btw was totally killed with first line treatments of CHOP and rads. The ICE put me in a durable remission then it was on to high dose chemo of Busulfan and Cytoxin for Auto Stem cell transplant. This sucked and I'm glad I don't remember much of it. I am cancer free now for over three years. The hard thing I had to face besides some lung damage and some annoying smaller problems like really bad acid reflux, would be the loss of the fertility from transplant, got my last period when I was getting released from the hospital in Nov of 03 from transplant and it never returned, I went through what they call a premature ovarian failure, there is alil hope maybe like 1% but most likely I can't have kids
which sucks!! I will adopt though, there are plenty of kids out there that need a good mom! I am looking to change my career at this point, I would like to make a difference in the forgotten group of 18-40 young cancer survivors (we are forgotten because while survival numbers are going up for the older cancer population and the pedi the numbers have dropped for young cancer survivors) I want to work at a cancer hospital maybe in development or a non profit and also make a difference somehow for others like me who face unique issues like fertility loss. That's my story.
Hugs Laura
 

pine soul

New member
Re: NHL--Our Stories

My cancer seemed to come out of nowhere.I woke up one morning this past June with a pain in my back when I inhaled. Right at the base of my ribs. Made worse by deep breaths. It was so painful that it took me a while to get out of bed.

I went to work wondering what was going on, thinking I'd done some damage to my back or something. I ran it by a couple of people that I worked with and they suggested things like kidney infection.

I'm not sure what made me do it but I called my primary care physician to go in for an appt. She was not there that day so they asked if it could wait or if I wanted to see someone else. Again, not sure why but I said I thought I needed to come in right away. So I was assigned a doc I'd never seen. He listened to my chest, checked out my back and said he wanted to do an xray. A little while after I had the xray he came in and said he wanted to show it to me. There was a big white blob in my lower right lung. He said he thought I probably had pneumonia but because in the past I'd been a light smoker he wanted me to see a lung specialist and have a CT. I wonder if he was really thinking cancer but didn't want to scare me.

I went back to work and told them I'd be home with pneumonia. Talked to my sister later that day and joked that I had pneumonia or cancer (I thought it had to be pneumonia). I had a CT later that day.

The next day my PCP calls me at home and says "Wow. some xray hey?". From the jokiness of her tone I thought that it must be nothing. She then proceeds to say it looks like I might have cancer. My first thought is lung cancer. I freak out.

My next appt is with the lung specialist. I find out it's not just my lung there is also a large mediastinal mass. Freak out some more. When asked what this means he lays out three things it could be. One lymphoma, two I can't remember and three some cancer he says he hopes I don't have because the prognosis is bad. So I am left to freak out some more until my biopsy.

Next I had a broncoscopy to biopsy the lung. The results were inconclusive but pointed to lymphoma. After that the mediastinal tumor was biopsied and showed indeed I had Primary Mediastinal Large B Cell. I actually celebrated at that point because I didn't have the awful third option that the lung specialist said had a terrible prognosis. Little did I know at that point that I didn't exactly have the sniffles either. At that time I also started having B symptoms, (just days after my initial pain), of night sweats, fevers and trouble breathing. Because of the urgency I felt, I did not get a second opinion yet but started treatment after a PET scan and bone marrow biopsy. I later, after two treatments, did get a second opinion from a bigger cancer center.

For quite a while I couldn't look up information about my cancer. I was afraid to see prognostic numbers. Now I have learned a lot and try to stay informed. I realize that a number does not mean anything. I am my own case.

I began my treatment with CHOP with Rituxin. The first cycle was pretty rough probably because of the tumor burden. After 4 cycles my PET scan showed about 50% improvement. It was decided at that point to switch to EPOCH-R. I am now approaching my eighth cycle. After my sixth cycle I was down to one tumor which has shrunk to 2 cm. I'll get another PET after my eighth and we'll proceed from there.

I've had health problems over the years that to me seemed autoimmune related. Unexplained joint pain and endometriosis. I think there is probably some connection.

I've pretty much not worked since July with the exception of a couple of weeks.

Lately the chemobrain has been hard. This is difficult for me to deal with as my intellect was always what I thought was my greatest strength. I hope it's a temporary defecit.

It's also been hard on my family relationships. Although they've stepped up to the plate it's a strain. I know I am difficult to deal with at times with the depression and anger.

Cancer has made me reevaluate things in my life and I hope to make changes when treatment is over and I have the energy.
 

CassieSong

New member
Re: NHL--Our Stories

I was hoping someone would start a thread like this. I read ALL of the stories at the Hodgkins site before I was diagnosed and it is the reason I even caught my lymphoma... otherwise I may still be undiagnosed. One of these days (when I'm more settled with what's going on, I will post my story). -Cassie
 

lurkyloo

New member
Re: NHL--Our Stories

Hello! My name is Jen and my husband is Mario! We have 3 sons – Jason (a teacher, married with twins) Jeremy (former Marine, now in college) and Ryan (age 14 in High School) I work at an Elementary School and love it! I was lucky enough to find this message board shortly after Mario was diagnosed back in 1999. I didn’t post at first, but I found myself reading every day! It wasn’t too long before I joined in!

Mario was initially diagnosed with Diffuse Large B Cell lymphoma in September of 1999. At the time of his diagnosis, he was extremely ill because he just didn't want to believe that anything was seriously wrong and put off going back to the doctor. He began displaying symptoms in the spring with some back ache and bloating (he was also having sweats, itchiness, and fatigue, but he didn’t mention them to either me or his doctor!) He went to the doctor when the symptoms began, and they ran some tests (including ultrasound) but nothing showed up. It continued to get worse, but because initial tests hadn’t shown anything he figured it must not be anything serious and refused to take time off to see the doctor. It turned extremely aggressive and he dropped 25 lbs almost over night and he finally went to the doctor and they put him straight in the hospital. He had a tumor so large that it had totally blocked his intestines from his stomach. He had to be fed TPN intravenously for about a month until the CHOP shrunk the tumor enough that he could eat on his own! Very scary times! This was in 1999 and they didn't do Rituxan with the CHOP back then (it was fairly new!) When he relapsed in 2001, they discovered that he had follicular mixed which (apparently) had transformed at the time of his diagnosis. He had Rituxan x4 in 2001 and got a good partial response (greater than 50% shrinkage.) In 2004 his nodes were growing again, so he had Rituxan x4 again. After that his onc wanted us to try Rituxan Maintenance. He was initially to have Rituxan x4 every 6 months, but when we had to switch oncs, he was put on Maintenance Rituxan (x1 every 2 months) which has worked out pretty well for us! He still has some enlarged nodes, but everything else is looking pretty good.

In 2001 we saw a lymphoma specialist who said he would like to see Mario use the Rituxan for as long as it works for him and then move on to an Allo SCT rather than mess around with other treatments. I remember he also wanted to see Mario go to SCT before he turned 60 but at the time, he was only 52 and 60 was a long way off and was not something we even thought about!!! Now at 58 it is something we need to consider, although truthfully, it is not something I want to do unless we have no other options.

In September 2006 we saw a specialist at City of Hope who recommended we have an Auto SCT. There is a lot of controversy on whether an Auto should be done for those with follicular since it is not curative. Currently, we have no idea what we will do when the Rituxan is no longer effective.

A PET/CT Scan in November 2006 showed mild uptake in several enlarged nodes in his neck and groin. No surprise there, we knew he has active disease, but we were happy to find that he had not transformed to aggressive again! Right after CHOP in 1999 he was NED, but has not been NED ever since! He has always had enlarged nodes and varying symptoms of active disease! Still, life is good! He is feeling well and the Rituxan seems to be holding the lymphoma back! All in all, we are grateful and that’s pretty much where we are at this point!

UPDATE 8/2016 - took a break from lymphoma board for a while, Mario has been able to manage his NHL follicular with Rituxan only all these years. We both retired in 2012 and moved to Arizona. We travel around in our Travel Trailer a lot, and we have also taken some really wonderful trips to Hawaii, Puerto Rico, the Caribbean, Mexico and Alaska! Our favorite was taking a catamaran with 8 other friends and cruising around the British Virgin Islands for a week! What an adventure! Our two oldest are both teachers now and "the baby" is serving in the Coast Guard. Life is good! :)
 
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JudyK

New member
Re: NHL--Our Stories

In January 05 I was feeling kinda fluish. As time went on I lost every ounce of energy I ever had. I don't know how I got up to go to work each day, but I got thru the day counting the minutes until I could go to bed. By the end of January I had lost 20 pounds and my stomach was so bloated I looked 9 months pregnant. I had night sweats - drenching ones and a low grade fever for several weeks. I had horrific pain in my lower back which made it difficult to get dressed, out of bed, and out of the car. My pcp thought I should have a cat scan but instead decided to send me to a gastro guy because I was having acid reflux. Took two weeks to schedule the test and two weeks to get the results. By this time I could barely walk and function. My gastro guy said the results of my endoscopy showed I had barretts esophagus and this would be controlled by protonix and I should see him in six months for a follow up. He stood to say good by and I said with all the strengh I had - wait a minute - I don't feel good. Something is wrong with me. So once again I went over all my symptoms and something must have clicked for him because he stopped making eye contact. He said lets do a cat scan tomorrow. We went at 10 am for the scan and came home and at noon the phone rang and the hospital said we needed to come back in right away.We kinda knew that just wasn't good. He told me I was filled with tumors and that it was some kind of lymphoma. I saw an onc the next day and he immediately addmitted me, did the bmb (negative) a ct scan guided biopsy, inserted my port, got fluids and bloods and waited for the biopsy to see what kind it was and what treatment would be. Next day I started CHOP R. I was in the hospital for ten days then home for outpatient treatments. I was neutropenic several times and hospitalized twice for minor fevers. After six treatments I was NED and one month later started preparations for my SCT. Three months later I started having pulmonary problems, severe vomiting episodes lasting 6 hours, hospitalized for ten days with shingles, and finally after an MRI to find a reason for my unbearable pain in my hands, it was found that my T cells were attacking me bones and cartiledge and they called it rheumotoid arthrits. I am now being successfully treated for this and I am finally pain free. I see my transplant onc next week. I was suppose to get re- immunized but because of the ra it was delayed. I thank god every day for the board and the wonderful people here. I feel better today than I have for a very long time.
 

gracie82159

New member
Re: NHL--Our Stories

I tried on Saturday night to get this typed and posted, typing it into the window on the board. It timed out and I lost everything. It was late and it frustrated me, so I didn’t reattempt that evening. I’ve learned my lesson and am now typing this in Word and will cut and paste!

Here’s my story…

In early 2004, I decided that I had put off annual physicals, doctor visits, etc., long enough (I am one of those people who rarely, if ever, sees a doctor, rarely even have a cold, and that is still true), so on the advice of an acquaintance I made an appointment with a family practitioner that came highly recommended. I had the physical and some blood work done, the blood work due to some concerns on my part about the diabetes that runs in my family and the fear of arthritis (I’d had achy joints for a year or two). The doctor gave me a clean bill of health, and the blood work came back borderline for both diabetes and arthritis, but negative.

In the late summer of ’04, I found a lump in the upper part of my left thigh. I made an appointment with the doctor. After an exam, she said (and these were her exact words) “I don’t know of any cancer that presents this way. It looks like a thrombosed vein. It should go away on its own within six months.” At the time, I was doing a lot of driving, an hour each way, to and from work, and had a sit-down office job, so this made sense to me. Away I went, reassured this was nothing to worry about. In the spring of ’05, however, I found another lump, this time in the top of my right thigh. I went back to the doctor, who again did an exam, and again said she thought this was another thrombosed vein, due to all of the sitting I was doing, and it should go away on its own. I waited a couple of months but the lumps didn’t change at all, so I made another appointment. Again she did the exam, and again said the same thing, but I was concerned, so she offered to refer me to a surgeon for a consultation. I made the appointment with the surgeon. He confirmed what the GP had said, that he thought these were thrombosed veins and would go away on their own. He also made what I considered a very sarcastic comment, “We could cut you open and see but I really don’t see a point in doing that.” I was becoming more uneasy, but still trusted that these doctors knew what they were talking about, and decided that I would wait this out.

Between Christmas and New Year’s of ’05, I found another lump, this time in the left groin area. I knew that something wasn’t right here, so made another appointment to see the doctor in early January of ’06. The doctor did another exam, and suggested that we do a biopsy. She referred me to a different surgeon. I went for the consultation, he did the exam and agreed that the lump in the groin should be biopsied. I had the biopsy on January 25th, a Wednesday. The following Monday, the 30th, I went home for lunch, and there was a message on my answering machine to call the doctor’s office. I called and they asked if I could come in that afternoon. Scared to death, I drove the 25 minutes to the doctor’s office. When she came into the exam room, she asked how I was feeling. I said, “Well, to be honest, a little nervous and anxious.” She said, and I quote, “It’s lymphoma. It’s treated with chemo and radiation. It’s survivable.” Great bedside manner…I knew lymphoma was cancer, but that was really all I knew.
While I sat in the office that afternoon, the staff called a couple of different oncologists and got me an appointment for the next day with an onc from the University of Wisconsin. I went home in shock, and that evening looked up any information I could find on the internet.

The next day, I met Dr. McFarland, the oncologist. He walked in to the exam room and introduced himself, and then explained some things and said, “We may not have to do anything at all.” This sounded outrageous to me at the time, not understanding the watch and wait option that patients with indolent lymphomas can sometimes choose. We set up all the usual tests; CT scan, bone marrow biopsy, blood work. I had the CT scan the following week, and the BMB on Valentine’s Day, then another visit with the onc. Through the testing, I was given the diagnosis of follicular NHL, grade 2 (mixed), stage II. The options at that point were W&W or possibly treatment with Rituxan. Dr. McFarland decided we should get a PET scan to be sure. The PET was done at the end of March and showed more activity than the CT showed, with enlarged nodes in the left axillary and left clavicle area, along with suspected activity in the 11th vertebrae. With this information, I was now considered stage III/IV, and CHOP was mentioned for the first time. I decided to get a second opinion and went to Mayo in April. I saw Dr. White in the hematology department. After looking at my slides and reports, he told me that I would be a good candidate for a clinical trial comparing methods of administering Rituxan as a first line, single agent treatment. I took that information back to Dr. McFarland, and he agreed to get me enrolled in the study. I had a second round of tests and a BMB, and in June received four infusions of Rituxan, and achieved what was called a “complete response” as shown on a CT at the end of June. After another CT in November, I am very happy to say that there is currently no evidence of the disease.

I’ll have another appointment with lab work in March, and another CT in May. At any time after now, if there is progression of the disease, I will be given another four infusions of Rituxan. The other side of the study, the arm that I am not included in, gets maintenance Rituxan once every three months.

I have been very fortunate in that I have never felt sick, have had no “B” symptoms and still rarely even get a cold. My husband thinks that my immune system has been fighting this off for a long time and that’s why I’ve had such a good response. I want to believe that is true! I know that there is a possibility that a relapse will occur at some point, but for now am happy to be dancing with NED!

That’s my story…please add yours when you can!

Kathy
 

lsutiger78

New member
Re: NHL--Our Stories

Around Thanksgiving 2005, Shane noticed a bump on his scalp. It was about the size of a nickel. We didn’t think much of it until one day we noticed it was turning a funny shade of purple. We made an appt with the internist shane usually saw (Shane, like gracie, is NEVER sick….the only time he saw drs was for pulled muscles!). The doc took one look at it and said it was a sebaceous cyst and to leave it alone b/c it would go away on its own. A month or so passed and the bump grew. We saw the dr again who said we might as well have it removed and sent us to see a dermatologist. This derm was dr. death. He poked and prodded the bump in his office with no anesthesia on multiple occasions. The pain was excruciating. I actually watched the dermatologist do a punch biopsy on shane’s head with no anesthesia at all. It was a terrible experience. The biopsy revealed nothing besides a collection of “lymph cells”. He sent us to an oncologist who said “I really doubt you have cancer”.

This left us not knowing what to do. In April 2006 we decided to get a 2nd opinion from another dermatologist. She was fantastic and ordered a surgical biopsy right away. The surgeon actually gave us the bad news. I believe it went something like this:

Surgeon “Its b-cell lymphoma…you have cancer”
Shane: Can you give me more details?
Surgeon: “I’ll call the oncologist you saw b/f and make you an appt. You’ll need to ask him if you’ll be around in a year” (he really said this!)
It was may 2nd 2006. I'll never forget that.

I broke down in the office and we waited a few days and finally saw the same onc who told us shane probably didn’t have lymphoma. He ordered a bmb and a ct scan of shane’s chest. That’s it. Nothing else showed up so he dx shane with FNHL stage 1 and sent us to a radiation dr.

The radiation doc wasn’t very nice either. He laughed that shane was gonna lose his hair and look like he had male patterned baldness. Shane actually ran out of that office before the visit was over!!!

Finally, we decided we weren’t comfortable with any of these doctors or their decisions so we made an appt with my sisters oncologist (she has aplastic anemia). He ordered more ct scans and a pet scan which finally led to a diagnosis of fnhl stage II (some lymph node involvement). Shane immediately started 6 wks of rituxan which led to a partial response. He’s now on his 4th (of 6) round of fludara/rituxan which seems to be doing beautifully.

Its amazing how horrible the diagnosis process is (for everyone I see!). Treating it is the easy part.
 

mitch8

New member
Re: NHL--Our Stories

My story has no drama....I was on a business trip and turned my head to look at something. I noticed a bump on the side of my neck. Was never sick or abnormally fatigued; no symptoms at all. Blah blah blah....fast forward a couple of months and much testing, indolent B cell non hodgkinds lymphoma.
 

jdf58

New member
Re: NHL--Our Stories

My cancer was found in a weird way. In December of 2001 I had my gallbladder removed. Checking my gallbladder the pathologist found a lymph node inside that looked suspicious. It was tested and the nhl was found. Talking to the Drs later, they said that my case caused a buzz because finding a lymph node inside of a gallbladder is a one in a million thing.

So now my nhl ride begins. It was hard to tell my parents for my mom was diagnosed with breast cancer just a little before that. My mom had surgery and I was going to see the oncologist for the first time. I’m sure that most of you would agree that seeing your oncologist the first time is something that cannot be described. I’m sitting there listening to him but really not hearing anything he’s saying. I was one of those who thought cancer happened to other people. Now I’m one of those other people. So we schedule tests and I go on my way.

See the Dr. again and he tells me that my tests show extensive cancer. What? At our first meeting he told me about the old watch and wait strategy. Well that’s out. He tells me that I’m going to start chemo right away. What? Being a little older I’m from the generation that when the word chemo was heard you would cringe remembering all the horror stories attached to chemo. Oh well. As I get ready to leave the Dr. says that since I’m here I should go ahead and get a bmb. What? He says don’t worry, it’s a simple procedure, I won’t feel a thing. LIAR! I’ve had a few bmb done and you sure learn from the first one. That first one hurt so bad. And that’s saying a lot for me cause I’m one of those high threshold of pain guys. They didn’t deaden it enough and I sure felt it. Now when I get them I tell them that I’m not going to allow them to hurt me like that again and they shoot me up. I’ve only had one since that hurt. But still hate even thinking about them.

That same day of finding out how bad my cancer was I go over to tell my parents the news. They weren’t home. Later on that day I call my mom and tell her. Three hours later I get a call from a neighbor. The paramedics are at my parents house. My dad died that night. I got there in time to help my mom find the do not resuscitate papers. He was gone. My mom said that the news of my cancer was just to much for him. He was a very sick man with heart problems. Hearing that his wife had cancer and then one of his sons was just too much for him.

I did my chemo. Physically it wasn’t too bad. I think the worst part of it was the mental. I’m sure some of you understand this. It was made harder because my mom was going through chemo at the same time. In fact, one day our appointments were at the same time. We sat beside each other that day getting our chemo. We tried to laugh about it but it was tough. Adding that my dad was gone it was a tough time. Even to this day I’m not sure that I’m totally recovered mentally.

That’s the main part of my story. Like most of you I continue the battle. Ups and downs, day by day. The physical battle has it’s moments. For me my biggest battles are the mental ones. They can really suck can’t they? I sure wish they would stop.

Take care,
Jim
 

darlenefree

New member
Re: NHL--Our Stories

My story is strange in the way that I found my cancer. In November of 2005 I finally got in with a dentist to start having my teeth clean and some work done. Before he started the nurse checked my blood pressure. It was very high. I thought well we have been busy at work and alot going on. Well he would not treat me until I saw my regular doctor. So i made a appnt with him. I also had some pain in my left side, it had been there for a while, but would come and go. So he treated me for the high blood pressure and wanted to have a ct scan done. The ct scan showed I had lymphoma. That day they did the bio. and it was migalant. I was then sent to the onc. The first appt she did a bone marrow test and 2 days later a pet scan. It was 30 percent in the bone marrow and the PET scan showed It was in every lymph node in my body. I started on rit. then was put back in the hospital with high blood pressure again in Dec. 200/100.
Then I had a infection in my intestines in Dec19th. Then on Jan 13 the the infection was back, and they removed part of my colon. In March I started r/chop. and in April back in hospital again. Since I have had two round of rit. in July I was clear, then within 3 month it was back again. I understand full well this will always be a battle, but sometimes I want just a normal life.
My onc said this is the first case that she has seen that the lymphoma was found due to high blood pressure. It is now blocking the artey to my kidney and causing infections and pain. Will have to wait until Jan 2007 to have another scan. i hope one day we will all be ok and not have to go through this again.
Darlene
 

ShyGirl

New member
Re: NHL--Our Stories

My Boyfriend was the picture of health. Since we met, I watched him dedicate much time and energy to taking care of himself. He had ran in marathons, even kept his running up when sick or with broken toes.
He watched what he ate, didnt drink, doesnt smoke. It even inspired me to lose some weight and start thinking about taking better care of myself.

My BF started feeling run down around the spring or late winter of this year. It was if he had a cold/flu that wouldnt go away. He would tell me he didnt want to go to the doc, as they may find it was "cancer". I would tell him he was crazy, that they would find nothing. But all the same, I begged him to go just so something little wouldnt turn into something big. He'd put me off, tell me he was going and wouldnt, etc.

I noticed around the beginning of the summer, his appetite was affected. He would get upset stomachs easily, and was afraid to eat some things. I tried to make him his old favorites and he struggled to eat them. I know now he had loss of appetite.

He also had pains around his ribcage that would wake him up at night and a persistant cough. By the end of summer, he was weak, lethargic, fevery and sweaty a lot of the time. being the stubborn person his is, he still wouldnt go to the doc. He still kept up his workouts although he confessed to me he was constantly struggling, huffing and puffing. I began to secretly really worry and try to research his symptoms on the internet.

I had him pegged with everything from walking pnemonia to a bad gallbladder. In September, I watched him sleep one evening. He was freezing, yet hot and sweating. He coudlnt sleep sound and would wake up short of breath. Something was wrong with my baby and he needed help.

He finally went to the doc and was first diagnosed with Pneumonia in his left lung. But the doc was suspicious and ordered more test. I didnt know this; he kept it from me till later. They eventually found some sort of mass around his heart and his lungs. Two days before a surgical biopsy, he called me. He feared he wouldnt make it through the surgery (thinking it was lung cancer or etc). I was shocked. It felt as if someone had kicked me in the stomach and I couldnt breath. I felt immediate pain and tried to hold it in to not scare him (because if *I* appeared scared it might make him think he was dying.)

Two days later, I was standing over his hospital bed. His chest was bandaged, he had a drainage tube coming out of his chest, oxygen. He was pale but sleeping comfortably for once. I was so worried, but then he opened his eyes; our eyes met, and he smiled. It was the most beautiful smile I had ever experienced.

A few days later, the diagnosis: Stage III NHL. With poking and prodding, we find out it is Type B. My BF is not one for details as he feels not being too specific makes it perhaps less serious or real. It has caused us SOME conflict but I realize I have to support him and how he wants to handle this.

The scheduled treatment was 18 weeks of chemo, 6 rounds scheduled 3 weeks apart. He lost his hair around the start of round 2 and it has been rough on him so far, but he is so brave.

I came here for a myriad of reasons: when I heard that my love had cancer, part of my heart died. I lost my Dad, a friend, and a dear dear Aunt that way. My brain was telling me horrible things. But I needed to be around people who had beat it, who knew what we both were going through emotionally and physically. To fill in the blanks in places he couldnt talk to me about. To perhaps get the truth about things he couldnt bring himself to tell me. To keep up to date on options and treatments...to protect him! To do everything I could with limited resources to support him. I have found so much peace and comfort here, it is a Godsend. So many stories of hope and survival...I know not all is lost.

The thing about cancer diagnosis is there is no time to absorb anything, or to accept it. You are thrown face first into new medical terminology; doctors appointments and decisions. Chemo treatments. Issues like fertility and hair loss. So many things...it kind of rapes you emotionally and can at time make you weak. But one things about cancer and those it touches...it makes them as tough as anyone can possibly be or ever thought they would.

This time, for me, there will be a survival story. And this board is a huge instrument in it. For those newly diagnosed or who is experiencing it with someone they love, do not give up hope. Cling to it and keep faith. Let others help you because there is nothing wrong with it, and you will need it! Use this board and its many resources in every way possible.

Good Blessings to you all.
 

Dawn810

New member
Re: NHL--Our Stories

Stu's lymphoma started with unexplained weight loss in early 2004. It was about the end of Feb the pain started in his upper right abdomen. It quickly worsened and he was in agony by the time of diagnosis. He had an ultrasound where they saw a small spot on his liver and a second ultrasound was set up for the next month (Apr 12th). Meanwhile as his pain still increasing I encourage him to go to the ER. The doctor there pushes his abdomen which causes Stu to almost scream says "nothings burst" so go home and wait till the next ultrasound.

Pain gets worse and worse so finally I force him to go back to ER which Stu didn't want to do because of the doctor pushing his abdomen last time. This time he's taken seriously. They admit him and tell us that it's his gallbladder and he'll have to stay in hospital until it's removed following the weekend. He was admitted on April 10th, 2004 which was Easter Saturday. Our wedding anniversary was the Sunday. On the Monday morning (Apr 12, 2004), I went in to the hospital with our oldest son to visit and Stu tells me they said its cancer. His liver is more than twice it's normal size. We were shocked to say the least. The doctor does a liver biopsy and sends it away. We are then told before the pathology results are back that they believe it's a type of cancer that can't be treated. We were devastated but when the testing came back it was found to be stage 4b diffuse large b-cell lymphoma and not only treatable but potentially curable. Hope is everything.

After 8 cycles of chop he's been in remission since. I'd love this to be the end of the story and it could very well be but he's had some lymph nodes show on his ct scan last month that need investigation so we wait...
 

central241

New member
Re: NHL--Our Stories

I was diagnosed in August of 2003…I was 22 at the time. The first symptom I noticed was pain deep in my chest when I took a deep breath in. After the normal battery of tests, scans and biopsies, it was determined that I had a grapefruit-sized tumor diagnosed as b-cell non-hodgkin’s lymphoma.

My first chemo of CHOP plus Rituxan was given in the hospital as an admitted inpatient. Before receiving the treatment, I had a medi-port surgically implanted, a catheter inserted to drain the protective sac around my heart (which had filled with excess fluid as a result of the tumor pressing against the heart), and developed blood clots (as a result of the port). What was supposed to be one day event turned into a 10 day hospital stay. Needless to say, I got kind of cranky as the days went by! My other 6 treatments were given at a satellite health campus away from the main hospital in the city. The remaining treatments went off pretty much without a hitch.

After my 6th treatment, my doctor gave me a big scare. He compared a recent scan with one done a month prior and noticed no change in the size of the tumor. He mentioned the possibility of a bone marrow transplant and sent me to Johns Hopkins Hospital in Maryland for a consult. Fortunately, the scan was showing scar tissue and the tumor was shrinking. Hopkins (and my doc at home) were pleased with the results and Hopkins had me return in 6 weeks to do their own set of scans. Those scans showed continued progress and everybody deemed me to be clear.

I chose to have about a month’s worth of radiation following chemo. It wasn’t necessary and there are big pros and cons to radiation. But I decided to have it knowing that if my cancer would recur, I might deeply regret not having it.

Since completing treatment in July 2003, I’ve been clear ever since. I’m still seeing my oncologist every 6 months, although the last appointment, he mentioned switching me to a once a year schedule soon. I see him in February...we’ll see what he says then!
 

barbierunr

New member
Re: NHL--Our Stories

I was on vacation, camping way up north in the UP of Michigan. Sitting around, not doing much, I felt a fairly good sized lump above my right collar bone. I didn't say a thing to my husband - didn't want to ruin our vacation! My mother had been diagnosed with Large B-Cell Lymphoma 4 years earlier and hers presented in her neck, too, so I suspected what it might be. When we got home, I had to "fess up" and made an appt. to see our family doctor. She immediately set me up for an MRI, and gave me the name of an ear, nose throat guy to do a biopsy. The ENT was a very nice man, but refused to do the biopsy. I was scheduled for an ultrasound guided needle biopsy within a week. All of a sudden, I was in an oncologist's office getting the news that I have lymphoma. Who ever expects to have an ONCOLOGIST in their life? I had no "known" symptoms, although in retrospect, I did have some strange things like night sweats, low grade fever and shortness of breath. I just figured I was entering the "change of life" and was out of shape. The fever, who knows? Well, it turned out to be indolent lymphoma. The follow up CT scan showed it to be in other areas beside my neck, but not enough to affect any organs or cause me problems. My onc wanted to start me on Rituxan right away. I went to UIC for a 2nd opinion, the best thing I ever did. After that, I chose to watch and wait. Unfortunately, the follow up scan 3 months later showed some major progression in several of my lymph nodes, so off I went to get my port and a week later started R-CHOP. My lymph nodes shrunk back to normal size as a result and I am now getting Rituxan Maintenance. I got one round 3 months post treatment and will get them every 6 months for ?? long ?? I think it's interesting to read everyone's different treatment schedules, even though we have the same type of lymphoma. Makes me wonder if what I'm doing is the "right" one. So far, so good.

This board has been a great help to me in handling the side effects, and emotional support as well. I haven't posted a lot, but I read it almost every day. Sometimes it's too emotional for me, and makes me cry - not a good thing when you're eating lunch at your desk at work!


I want to wish everyone a very HAPPY NEW YEAR and wish you the best with whatever treatments you're in or if you're just trying to get on with "normal" again! Bless all you caregivers out there who take on the load for us. We couldn't do it without you!

(((HUGS)))

Barb
 

TarahH

New member
Re: NHL--Our Stories

Paul had mentioned to me that he felt a "weird" feeling in his chest a couple of times, but we thought nothing of it. We all have weird feelings and don't go running to the doctor. A few months later, he showed me a noticeable lymph node next to his collarbone. We thought it was probably some kind of infection. He was busy interviewing for jobs and didn't want to go see a doctor.

We went to visit his mom and dad and showed his mom (a nurse) the node and she said for him to get in right away. I started doing some internet searching and remembered that he had been having alot of itching on his legs. I knew at that moment that he had lymphoma. It took my breath away, at 29 years old it was something I had never even considered could happen.

Everything proceeded pretty quickly when we got home and within a few weeks, we had moved to a new city, both got jobs and Paul started chemo.

I still think about it constantly and with every ache and pain I worry that he could relapse.
 

SweetTea2

New member
Re: NHL--Our Stories

My story: In april, 06. I was having a pinching pain in my right side, had an apt with primary for cholesterol check, he examined my side as well as blood work being done for cholesterol, and when he touched it, really hurt. Had CT, then colonscopy, then surgery & chemo & here I am in remission!! I didn't realize at the time, but some of the symptoms were (i ignored) nite sweats, small amount blood in stool, and itching. I thought I had an appendix problem, and that was scary!!! When they told me I had NHL and said that was cancer, I was in total shock! Not sure if it has fully soaked in yet!

Thanks to the people on the forum, they really helped me. I truly was scared to death. Jerry was my greeter, was very kind and calming. I was unable to ask onc any questions, I was afraid of what else he would say, after telling me I had cancer!!

Joanna
 

connie0812

New member
Re: NHL--Our Stories

I have been thinking for the last 1-½ years that putting my story into words would be therapeutical for me to do. How would I describe the journey I’d been that started in March 2004?? My mom always described herself as the palm of her hand and us girls were the 5 fingers….. no matter what we would always have each other.

I look back on her analogy and while she was alive it always made sense, but geez….what happens to the five fingers when there is no palm?? They fall apart, which is what we did. Life was insane for the 5 of us.

My grown children were running amok doing drugs, drinking and committing crimes. I couldn’t help my sisters nor could I help my children…it just sucked and I couldn’t take it anymore.

I saved my money for six months and left Oregon in April 2005 with $1800.00 dollars in my pocket, got in my man-truck and decided I was going to find my new home and start my new life somewhere between Portland and a city in Montana that I determined in my search that “felt like home”.

I made it to Spokane the first day, got a motel and figured I’d be there for a couple of days checking it out to see if it felt like my new home.

I woke up at 2:15 a.m. in screaming pain from head to toe. I wondered if I had pushed myself too far in driving that day and ended up staying for 3 days. It was very weird because I had a “cold” I couldn’t shake and my symptoms alternated between unbearable pain and coughing so hard I wondered if I was going to cough up a lung.

I spent time in Spokane, Post Falls, Coeur D’Alene, Missoula, Kalispell with my final destination being Hamilton, MT. Oh my I had stumbled across God’s country and felt I was in the middle of one of the most beautiful paintings He had ever created. I found a very cute little 1 bedroom apt less than 2 miles away from the Bitterroot mountain range and felt even more blessed that my front yard also included a view of the Sapphire mountain range. Even though I was alone and didn’t know 1 person I thought I had died and gone to heaven!

I started looking for a job and nobody would hire me. Looking back I’m thinking it was partially because I looked grey and like I might die at any moment. I started off at the ER, where the minute they found out I smoked I was diagnosed with COPD and could get nowhere with the docs past that diagnosis. No one ever even called me to say my chest x-ray showed pneumonia (my first experience with jerky docs). I went to the urgent care 9 times in the next 4 weeks. Mind you I had no insurance and very little money left by this time because my journey took me a full month to get to Hamilton. I was in such extreme pain that when I was driving from town to town looking for my new home I had a pillow behind my back, therma care patches all over my back and shoulders along with ben gay heating patches and a hot water bottle. Lol, what a picture that must have been!

After several regimes of antibiotics and not getting better I convinced the doctor to take some blood. Holy smokes something’s not right. 9th visit I convinced them (again) to take blood and check my counts and they were outrageous. Doc said they found “something suspicious” in my blood and had to grow cultures. 10 days later I still hadn’t heard anything and went into a major panic because that morning my lip and chin had gone totally numb and I was going into another round of unbearable pain. Off to urgent care I go again, barely able to walk and crying like a baby.

The doc just sat there staring at me, I looked him in the eyes and crying I said to him; If you don’t figure this out I’m going to die.

To say this sent him into a panic doesn’t even begin the describe his reaction. He left me sitting in the office and literally ran over to the pathology office at the hospital cuz the jerk that was growing a culture from my last blood draw went on vacation.

When he came back he sat in front of me, took a deep breath and said “Connie you have leukemia or lymphoma”. I was speechless (well ok, only for a minute). I asked him if I was going to die and thank God he didn’t give me statistics, just said there are many, many people who have survived these two types of cancer.

I left my vehicle in their parking lot and he put me in his truck and drove me over to the hospital where I was admitted and “watched” (with no treatment) for the next 3 days.

Respiration was dropping, I think I was dying and they contacted the cancer institute in Missoula. I was transferred by ambulance to St Pat’s where I began treatment and dilaudid became my best friend. YAHOO I was finally out of pain.

My sister came up from Montana and sat with me in the hospital for the next 8 days. She took me back to Hamilton, packed my house up and Nina and Marie drove up from Portland and hauled my butt back Portland for the rest of my treatment and here I am, alive and telling my story. I’m planning a trip back to Montana this summer as I need “closure”.

Kathy, thanks so much for starting this thread.
 
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