NHL--Our Stories

[gracie82159]

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

[anjou]

patient stories-- mine is the one with the mailman

[CassieSong]

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

[CassieSong]

It was months before I realized that the lump on my neck could be cancer. I was rubbing my neck one day in the summer of 2006 when there it was... a lump on the left side of my neck. I thought it was a little weird, but it didn't hurt so I didn't worry. Months went by and the lump didn't go away. It didn't get bigger either though. I finally went to my PCP and asked him about it. My doc is usually really laid back, so when he immediately ordered a CBC and chest x-ray, I got a little panicky. After the tests and after I got home, I went online to check out neck lumps. BAM.... cancer. I just knew I had it. I THOUGHT though that I had Hodgkins. I was almost positive. However, I was wrong.

Though the tests came back normal, my doc sent me to a surgeon to get it biopsied. He told me not to let the surgeon blow me off and that I needed to get this thing biopsied. I agreed. My husband and I went together, fully expecting the surgeon to take one look and full-heartedly agree to a biopsy. Instead, the surgeon said "I'm 95% certain this is nothing. I wouldn't take it out if I were you." He couldn't tell us with 100% certainty that it was "nothing" though so after a few days of procrastinating... I called back to make a biopsy appointment.

The surgeon called back the next night after the surgery and gave me the news over the phone. It was the worst night of my life. My heart just sank. I hear that term all the time... but my heart really did feel like it sank. I had gotten my hopes up that MAYBE the lump was nothing. My hopes were dashed though when I was given the news that they found Non-Hodgkins Lymphoma. I was a mess. The pathology report stated that I had Large Cell Follicular Grade 3.. an intermediate type of NHL.

I was only 25 at the time of diagnosis. I was so scared that I wouldn't be able to see my baby grow up. I was frightened at what chemo would do to me. However, I'm hanging in there and doing well. I only have one more chemo to go through and then we'll see where I stand.

I've learned that you have to be your own best advocate. Thank GOD that my PCP pushed to get that biopsy. I'm so glad he was so diligent in finding out what that lump was. I never had any other symptoms even though they did find multiple affected lymph nodes throughout my body. Bottom line... if you have an inkling that something is wrong, get it taken care of... even if that means standing up to a surgeon who should know better.

Cassie

[HereNow]

Thanks for bringing this thread to the top. It's quite a read.

This message board is not only a Godsend for me, but it's also one of the saddest places on earth. I guess that's the irony of our situations, eh?

Amazing how many folks are initially MIS-DIAGNOSED or IGNORED. Something's wrong with that. I, too, was misdiagnosed and ignored for almost six months. More on that later.

I'm trying to digest all of this. I feel like wimp compared to most of yall.

Will be back later to tell my little story, which has only just begun.

Best to All,
xxoo
Mark

========

PS: Someone mentioned an R-CHOP ADVICE thread? Can some resident verteran/expert 'bump' that to the surface so I can mark it for future -- uh-hrrrmph -- reference? Thanks in advance. -- MC

[laura79]

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

[sharonap]

Originally Posted by laura79

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

omg, I cannot believe what u went through. Have u thought about suing ur first doctors, if I want to call them that?

[pine soul]

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.

[redrose]

Hello all
I was just recently diagnosed with NHL. Im due to have a PT scan done,. Im scared to death. Can someone tell what to expect and how you made it through it. Im also due to have a bone marrow test done later on. I guess im also to have the Rituxan treatment. How was your treatment and did you have very bad side effects?

thank you. im really scared. but told its very cureable.

God Bless everyone

[meep1822]

I'm Emily, 39 y/o. I was dx in August 2009 with Follicular Lymphoma (grade 4). It was just sort of stumbled upon after my usual summer run-in with cellulitis of the left leg. I've had that 6 times... This time the cellulitis went away and the leg/foot swelled up. After an ultrasound to rule out a blood clot and lots of lab work the next step was CT scan. That was when they found all the enlarged lymph nodes; I couldn't feel any of them. I had a biopsy done the end of July. I got the results from it on Aug 4th from the surgeon and saw the oncologist Aug 5th. On Aug 10th I had a port put in, a bone marrow biopsy and a PET scan. On the 11th I had the first chemo (R-CHOP).
I was hospitalized after the first chemo with an infection and my port clotted & then infiltrated while I was in there. Had to get that taken out and a new one put in the other side. Things went pretty well until the 6th treatment. I was having some shortness of breath and was sent for an echo-cardiogram. It seems there was minimal valve damage from the chemo.
The day before chemo #7 the cellulitis returned in my leg & I'd had a cold for about a week. Blood values were ok so I had the chemo and then went to get my antibiotics. Chemo #8 was on Jan 5th. I was still sick with the cold & was prescribed more antibiotics and got a chest x-ray. All I was doing was sleeping and it was so hard to breath I avoided going downstairs since it was such an effort to come back up. Just walking around the house made me short of breath. Jan 11th I had a repeat PET scan & got the all clear! I start maintenance chemo in May.
Jan 16th I was admitted to the hospital after running a 102* fever. I spent a week in there with viral pneumonia. I'm finally starting to feel better, still a little fatigued some days. My hair is growing back and looks like it's coming in all grey. =(
There are days I still can't believe I have this; I've never been sick a day in my life.