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

[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

[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.

[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

[lurkyloo]

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 continue with the Rituxan for as long as we can, and then 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!

[JudyK]

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]

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]

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]

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.