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

mollycow

New member
My Story..My sons sore toe saved my life. 2007 after a blood test I was rung by the Drs to tell me I was anemic. I went to see them and told them it must be wrong.I had never felt better. Eventually after several more blood tests which showed low platelets and hemoglobin they sent me to a specialist. I had a liver biopsy and he told me he thought I had lymphoma. Well I was shocked. They did a bone marrow biopsy and gave me an iron infusion. Two weeks later I go back for results. They couldnt find anything. Wow such a relief. Mean while time marches on the Specialist thought I had a virus of some kind. Back and forwards to my own GP. They think I have enlarged spleen. More blood tests that go up and down. I felt great so I thought nothing of it. DR assured me it was a famial thing. Both my sons had low platelets at times. My younger son was seeing a ruemetologist at this same time.He was border line lupus. So I went with him to one of his appointments and asked his Doctor could he figure out what was wrong with me. My son originally went to him for a very sore toe and pains in his body. So I made the appointment. By this time its about 2011. I felt well and thought he wouldn't find any thing. First lot of test showed I had Sjrogrens. Autoimmune problem. Also showed at one time I had epstein barr virus. He told me these thing made it a higher chance of developing lymphoma. .Then he sent me for a ct scan. Showed enlarged lymph nodes near my heart and in the chest..Panic set in...He gave me a choice of seeing an Oncology Blood Specialist here or in Melbourne. Which is 2hours away. My husband and I decided to go to Melbourne. We closed our business for a couple of days to go and have tests. I felt sick and nervous like I was in a dream. We met the specialist who then admitted me to the hospital. I had several tests. A couple BMB they couldn't find anything. Then a test where they put a tube down around my lungs and got good pieces of the lymph nodes. I was asleep at the time. Also in between all this I had a pet scan. I felt like I had left my body and was watching from the sidelines. Also another ct scan. I cried a lot. Felt so alone and scared. My husband was a great support. After all this which took about 4 days. The results were in. The Dr came in. Closed the curtains. And sat on the bed and looked at me. He said..You have Lymphoma but we dont know what type. I felt like I lefty body and wanted to pull away from his words. My husband looked shocked and just couldn't believe it either. The Dr was sending all the info to a colleague of his in science and research dept. Where this Dr of mine worked once a week. He would have the results in a couple of days hopefully. I layed on the bed and my husband layed on the bed with me. His arms around me telling it was going to be all right. I was stunned. I couldnt cry..I thought I was going to die...A day later the Dr came back and said it was Marginal Zone LYMPHOMA and the treatment was watch and wait. There theory was that I was so well and very fit. That it was better not to make me sick at this time..I was absolutely shocked. No chemo at this time. We went home the next day. And my life was never the same again. Everyday I had to pinch myself. .I have cancer. Then somewhere amongst this feeling I just felt Like someone was helping me be strong. I just changed. It was okay. I used to say why me and then say why not me. I am not special. Every month I went for checkups and was doing very well. Until about 2013 I developed a lump on my temple and lost my voice. I knew in my heart that it was on the move. After a visit to the ENT dr and several biopsies. They decided to start Rchop. I was scared that I would die from the treatment that day. But no..I was fine..We went to Melbourne every 21days for 5 months. My hair fell out after 12days. And we went wig shopping just before it fell out completely. I coped...In April 2014 I had a pt scan and got the all clear. August 2014 had stem cells taken. June 2014 started the maintenance therapy of Ritixumatab every 3 months for two years. The last couple of years have been very stressful. My mother died in August just after my stem cell collection. My brother just died last month suddenly. My sister had died of Thyroid Cancer 18 years ago she was 47. My dad had passed away in 1994. So in the last year I have lost all of what was left of my family. I have become a stronger person who sees greatness in every day. And feel blessed at having my health. . The hardest thing throughout all this was I never told my mother I had cancer. It would of killed her to know she might lose another child. So we didnt tell her ,she was 92 when she died. It was difficult to say the least. But towards the end she had dementia. It was so sad. I needed my mum . But I had a wonderful husband and children that helped me through. I try not to think about what ifs. I get up every morning and feel grateful for what I have. And who I have become.
 

Spresto2

New member
My Husband's story: Diffuse Large B Cell Lymphoma

My husband and I have been together since we were teens, we lived together in college and immediately got married after graduating. Since we met, we connected and have been everything to one another ever since. The path that led us to the day that our diagnosis was confirmed was roller coaster. It began in 2010, when he felt a lump in his abdomen that was painful, he thought was a hernia, but the CT scan and biopsy proved it was a fatty tumor, benign lipoma (no big deal). But.......during that CT scan they saw ALL HIS NODES throughout his body were larger than normal up to 3 cm. They did a biopsy of under arms which showed reactive nodes, no lymphoma. Cleared him and did repeat scans for a year, cleared him again. 3 years later....all has been fine...he gets a cough. I knew it sounds weird, so I made him go to family doc. That doc. nearly sent home with a sinus infection but husband insisted on X-ray...not only were the nodes still there, and bigger, but his left lung was filed with fluid. So, he had surgery to remove the lining of lung, biopsied the fluid in there and chunks of the lung itself and took a core of an abdomen node. Everything clear, but when the core was sent for a second opinion, they called it suspicious for lymphoma. Nobody seemed too concerned though...didn't even mention it to us and diagnosed him with sarcoidosis. So we lived with "sarcoidosis" for a year and took prednisone among other meds to control it into remission. That never happened and instead we took his case to Cleveland Clinic's sarcoidosis center and they ruled it was NOT sarcoidosis and sent him back to hematology. They did another core node of abdomen. Large Diffuse B Cell Lymphoma was the result. Second opinion, confirmed at OSU. He began R-CHOP 3 days ago and has been so far tolerating it well, as though nothing is wrong with him! He's only 31. I'm ever so nervous about the response he'll get and the upcoming PET. I'm in and out of panic mode almost by the moment. I read so many ppl get total cures. Can we please PLEASE BE A CURE STORY!??!?!?! I'll keep you all posted. Praying daily and feeding him healthy meals....exercise too. Any other tips to make chemo do it's job? I hope to post a super success story. He just the most amazing person. I can't imagine my life without him.
 

TomStark

New member
You are going to post a fabulous success story here! This will all work out. You finally got the DX, and now, rather than wonder what is wrong, you can concentrate on kicking some cancer ass! And you will! I promise!
God Bless
Tom
 

Defens

Super Moderator
Spresto - what a story! Glad you finally got a definitive diagnosis and could get started on treatment.

DLBCL has a very high cure rate, almost as good as Hodgkin's which is running about 98% for cure, last time I checked. R-CHOP is a standard treatment for DLBCL and works very effectively in most cases. So, you certainly have our permission to be a cure story - and the chances are very high that you will be! Typically if you go five years beyond remission without a relapse, you're considered cured of DLBCL.

It's not too surprising that your husband feels okay after R-CHOP treatment. For me, I felt a little blaaah at times, and the prednisone dosage for the first 5 days of each cycle isn't all that much fun. However, I continued to work full time and even did some hiking and work on our property - clearing and burning brush, etc. while in treatment. For me, the most obvious side effect was a slowly building fatigue. I'd take naps in the afternoon, etc. But then, I'm twice as old as your husband.

Regarding treatment - the two things to really stay on top of are constipation and nausea. The anti-nausea meds are really good, and hopefully that won't be an issue at all. Some of the meds you take in treatment are really bad about stopping up the digestive system though, and it's a lot easier to prevent constipation than to deal with it after it starts - so get the nurse's advice about laxatives, etc. and follow it closely! The first week after treatment is the worst for that, and then it's not generally a problem after the first go-round.

Now that you've introduced yourself, if you have any questions in the future, post in the main forum and you'll get good advice and answers. Good luck to you both!
 

Barb1066

New member
Remission for 14 years

I was treated in January 2002 for stage 3 grade 2 small and large cell follicular lymphoma. I'm still in remission after being treated with 6 R-CHOP plus one year of interferon Alfa 2b. This has been my only treatment and it was a clinical trial at the time. Just wanted to share to let new folks know that long remission can be achieved with the newer drugs. I have had few long term effects.
 

Step2

New member
Large Diffuse B Cell Lymphoma was the result. Second opinion, confirmed at OSU. He began R-CHOP 3 days ago and has been so far tolerating it well, as though nothing is wrong with him! He's only 31. I'm ever so nervous about the response he'll get and the upcoming PET.
It sounds as if he will continue to do well. Welcome to the forum, and I'm sending my best wishes for the best possible outcome for him.
 

GHNDUFW

New member
Newly diagnosed, starting treatment on 4/22/16

Hello everyone, I'm a 25 year old male living outside of Chicago that was just diagnosed with diffuse large B-cell NHL in my left femur. I found it when I almost broke my leg weightlifting! PET showed no other activity, thanks be to God for that one. A second biopsy was performed to determine if I'll be starting RCHOP or EPOCH this week as the first biopsy was looking for sarcoma and not enough samples were taken. Trying to keep my cool for the most part. My wife has been a blessing beyond words for my mental health.

Not sure about the feelings towards Jesus in here as I just stumbled in, btu I'm not ashamed to share what's giving me strength. I've steeled myself and I'm ready for battle and these words have kept my head up the last few days especially:

"But since we belong to the day, let us be sober, having put on the breastplate of faith and love, and for a helmet the hope of salvation. For God has not destined us for wrath, but to obtain salvation through our Lord Jesus Christ, who died for us so that whether we are awake or asleep we might live with him. Therefore encourage one another and build one another up, just as you are doing." (1 Thess 5:8-11)

I'd be more than happy to help anyone here in any way I can. Peace, y'all.
 

mollycow

New member
Just an update from me. I finished my 2 years worth of Ritixumatab in March. Due to have my first ct scan in 2 years on May 31st. I feel extremely anxious. Has any one on this forum got any ideas how to make this process of scanziety easier. Not sure how to handle this step. Thankyou to this forum it's been a god send.❤

Sent from my SM-N910G using Tapatalk
 

kate_b

New member
Diagnosed with Rare NHL 3/2015

Hi all, new to the board/group 😊

My story isn't the best... although are any of these? I was 9 months married, and had just gotten pregnant when I had a lump appear on one arm... followed by another on the other arm a few weeks later. After another few weeks, I started getting low grade fevers, so kept going to the women's hospital so they could constantly check up on my fevers and what I thought were cysts. After my fevers starting getting higher, I ended up in the ER because I was dehydrated from the fevers and my liver was enlarged (they thought from all the Tylenol) - and they started running every test they could on me. Nothing ever came back, and after a little over a week, they discharged me with some prednisone and a bunch of dr appts.

Cut to two days later, and more of these bumps have appeared on my legs, and I was at the dermatologist, trying to come to terms with the fact that the initial biopsy they had done (a small punch biopsy) was too small to read, so they wanted to cut open my arm for a wedge. As if that wasn't torturous enough, my fevers came back full force to the point where I was bundled under about 7 blankets with a heating pad and still shivering uncontrollably. Another couple days, and while I was napping every doctor I had any relationship with all called within about 15 minutes, and I was told I had a very rare type of lymphoma - Subcutaneous Panniculitis-like T-Cell Lymphoma. I had to get back to the ER immediately so they could start running tests every which way.

After another couple days back in the hospital, I was told that due to the treatment options, they couldn't let me continue my pregnancy because there were markers that I could have a fatal fast-moving type of SPTCL, and if that was true (they couldn't tell until I had PET scans) it could be a matter of months. After what felt like having my heart ripped out, I found out that luckily the cancer hadn't spread beyond my skin, so my treatment plans were going to be easier than they thought (although still toxic). While figuring all this out, I got to celebrate my first wedding anniversary in the hospital - not the most fun. And as all this was initially happening, I just turned into a robot that could barely function and just was shellshocked most of the time. Thank God for counseling, and my family.

Earlier this year, after 9 months of treatment with chemo pills, I was declared in remission... for about 2 weeks. Then one bump came back. And another, and another, etc. Now I'm going in for a new type of treatment starting next month, IV chemo (Romidepsin). Ever since I got the call to schedule it all, I've gone cancer-crazy, looking up everything and everyone I can find that have anything to do with SPTCL (there isn't much at all out there unfortunately). Now I'm just looking to be around people who understand and who can help me negotiate this when it all starts up.

I feel finally ready to fight, because I feel like I (and my husband) have been through enough hell in our 2-year marriage where we deserve to have a normal 20 years or so (or maybe 10. I'll take 10.)

All in all... cancer blows.
 

GHNDUFW

New member
Update for me

Hello all. RCHOP treatment started on 4/22 and I'll have my third round this Friday, 6/3. I've tolerated the first two treatments well enough, with the second being a bit worse than the first. I feel absolutely awful for the first 3 days and the prednisone is keeping me up at night for the first 8-10 days, but all-in-all I am thankful with how well my body is taking the treatments. The entire week before treatment I almost feel normal, with the exception of the fatigue, but that's pretty easily kept at bay by napping.

The check-up PET will happen sometime during the week of 6/20 and I'm praying for the best possible news.

Thankfully my work has been incredibly understanding and I'm working as I'm able, 20-30 hours a week. I'm doing my best to walk a few miles every day, but I miss my weightlifting. The prednisone has made me swell up a few pounds, so I'm trying to get a little more exercise in without wearing myself down too much.

Thank you for all your stories. They have been encouraging no matter the outcomes because I appreciate the life I've been given and I am keeping my head high provided how well I've dealt with the treatments so far.

Here's to being another cure story. Best of luck to you all.
 

LeonardoBastos

New member
My short story

Hi,

I had no symptoms at all. I went to a checkup doctor who was supposed to ask only for chest exams (heart and lungs checkup). I have no idea why, but he decided out of nowhere to ask a abdominal ultrasound (which is not common from a cardiologyst). The first exam I did was the mentioned ultrasound and they found 3 small nodules inside my spleen, which led to the diagnosis about a month later with NHL B stage IV and started chemo a few weeks later (the doctor wanted me to send my spleen biopsy material to another lab to make sure if it was really B cell lymphoma). After the confirmation I started my chemo:

1st: 4 days feeling not to well, after that it was like if I didnt have anything in my body, not the cancer nor the chemo, except for a few localized chest pain). However, 2 days before next session I did some blood tests and my white cell was dangerously low. I had to take Filgrastim to make my bone marrow release the white cells. Also, I had my liver affected because I have a couple of tumors in there as well.
second: 9 days feeling sick. That was rough. After that I started to feel better and went through it without further issues.
Third: 4th day so far and feeling a little bit sick with nausea, chest, spleen and liver feeling 'funny', hopefully the chemo doing its job.

26/08 scheduled for the fourth chemo session and after that my second PET and first after chemo. My first PET showed about 30 tumors spreaded through my chest and abdominal area. Hopefully the next one will show way less than that.
 

PN1982

New member
My husband dxed FNHL since May2016

Dear All,

I am a new member and need your help.

My husband's dianoged with Low Grade Forllicular Lymphoma Stage 1 since May 2016. The symtoms he has are swollen groins and fluid. After we came back from 12-day holiday on cruise, his stomach poped out over night (looks like he's 7 months pregnant). After that 3 weeks, he went to see GP, did CT scan and they found a massive mass in his abdomen area (about rock melon size) and his abdomen is full of fluid. GP sent him into Emergency, they drained 12 litres of fluid of out his abdomen and lungs. They did 4 biopsies so far and the result still came back is Low Grade FL Stage 1. They gave him 2 cycles of RCHOP, did PET scan and the result was not what we expected for. The tumour is still there, only shrunk a little bit. Oncologist decided to change Chemo to Bendanmustin. He just had 1 treatment 2 weeks ago and now waiting for the 2nd .

About the fluid, after testing, oncologist told us it's CHYLE. So he's leaking CHYLE. In the report, they said as the tumour is too big and push on the pancrease and it caused CHYLE leaking. They are expecting this new Chemo will work, the tumour will be shrunk and stop the leak. As well as they put him on Low Fat Diet as they believe, stop FAT will help to slow down the leak.

Today is 2 weeks after 2nd treatment with B-R, he still have trouble with fluid. Low Fat Diet did not help at all. We are now worried this Chemo does not work as well.

Anyone had same problem or know any similar stories, please give us some advices .
Thanks
 

kayo77

New member
kayo

I have indolent follicular lymphoma and have had rounnd 1 with 4 treatments of ritauxin . Pet scan is sceduled in January and my oncologists pretty much leaves choice of " wait and see " or maintenance up to me. I am really interested in alternative treatments . ketogenic diet and b17 and am taking on my own IP6. Has anyone else have info on alternatives?
 

andym

Super Moderator
I'd say the main thing about mixing big changes in diet or supplements with treatment are talking honestly to your doctors about it. There are some odd combinations that can interfere with the very successful treatments we have available.
 

po18guy

Active member
I am really interested in alternative treatments . ketogenic diet and b17 and am taking on my own IP6. Has anyone else have info on alternatives?
I have been in this fight for over eight years and I know of no one who has tried "alternative" treatment and survived. My dad tried B17 for throat and lung cancer and died just as quickly. None of this 'stuff' is tested scientifically, and none of it comes with any guarantee. Using it may involve discontinuing standard treatment, and with zero evidence of effectiveness, this might just be fatal . There is one man on the web who claims to have beaten cancer with green juice and other flora, but in truth, he had surgery to remove his cancer at an early stage. His logic is deeply flawed, and those who died by following his advice cannot tell their story. Personally, I consider alternative treatment to be at most palliative in nature - after all scientific methods have failed.
 
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Step2

New member
This article actually brought tears to my eyes, especially the last few paragraphs. I think of what a shock it is to all of us to initially hear that we have cancer, and how devastating it is to our families. This article was written by a young doctor who is completing her residency at Stanford. It helps explain how uncomfortable many physicians are about even bringing up the word "cancer" with their patients. (And maybe allows me to be a little more forgiving of my dermatologist and gynecologist, who both seemed to avoid the word like the plague a few years back.)

"I haven't been a doctor for very long, but I've noticed that we tend to shy away from the word "cancer" when another diagnosis is just as likely. A swollen leg can be the result of an infection, a clot or "some other process." Unrelenting back pain can be a symptom of a pulled muscle, a slipped disc or "something more serious."

Edited to add that I find the online headline, "The Big C" offensive. The print version states, "Trying to get comfortable with the word 'cancer.' "

http://www.latimes.com/science/la-sci-sn-doctors-cancer-20161224-story.html
 
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herdaughter

New member
My mom's story started with my dad. He was sick for over a year with persistent cough which wouldn't go away. The doctors kept telling him nothing was wrong, even after a lung biopsy. So, my parents decided to go to China for a second opinion since it's easier there to schedule an appointment and get 3rd, 4th opinions, etc.

The docs there can't really pinpoint it either but heavily suspected TB and treated him as such. Since it took a while for that treatment, my dad stayed behind in case of reactions, etc. and my mom came back to the US on her originally scheduled flight.

5 days later, my mom flew back. Dad had gotten run over on his way to the hospital (by an intern there, to boot, who was going the wrong way cause she was running late). So, yeah, broken tibia, laid up in bed, can't walk. Mom takes care of him, first in the hotel where they were staying, then in the apartment they rented. As soon as they move in to the apt, she started feeling badly - indigestion and bloating, etc. as well as a pain in her side that grew. Her back also hurt, which wasn't new, and had to do with a nerve issue she's had, she thought.

Finally, dad got her to go to the hospital to get checked out. The gastro people thought it was nothing serious and prescribed her some digestive aids. The ob/gyn thought it was a cervical cyst but wasn't that large yet to require surgery. "It might go away on its own." Doc got her to do a blood test though cause of her age (62), to rule out cancer. Not cancer, she was told. "Here's some antibiotics." So, my mom, tough as she always has been, decided to wait it out. Her priority was still dad.

3-4 weeks later, her pain's worse everywhere. She had to rest mid-grocery shopping. She got out of breath on the phone. I kept asking if she was okay/shouldn't she get checked out again. "I can't leave your dad." He was still laid up, in his own world of pain. I feel like the worst daughter for not just walking away from the work deadline. I really should have, in retrospect. In any case, mom finally hurts enough to go get checked out. They told her the cyst had doubled in size and she needs surgery.

Well, crap. She still didn't want to leave dad though he was now just starting to be able to sort of move around on crutches. She said she would have to go to another city where she actually has insurance and siblings who can help her out (as opposed to where they were with the pulmonary experts). "Go!" My dad and I made her go, thank god.

Then everything happened at once. After her train ride down, her sister noticed her leg was swollen. A doc suspected clot. Scanned but nothing came up. She went on to see an ob/gyn. MRI before the surgery revealed a forest of dark in her stomach down to her cervical area. "Something about lymph nodes," she said. "Don't tell your dad." Stupid me. I didn't.

Later that week, a node popped up under her ear. There was no doubt now this was not right. She transferred to another hospital and sees a hematologist. They scan her leg again cause it's even more swollen now and found the clot this time. Started her on low molecular weight heparin.

PET scan - yikes. Bone marrow test - nothing there, thankfully.

They finally found a node (a second one that popped up below her ear) they could safely cut off for biopsy.

Longest days. Finally - well, DLBCL, stage 3/4. Doc was still worried about her clot and the safety of starting her on R-CHOP. But after some consults, he started her on the regimen. Meanwhile, my dad had made his slow, painful way down to her. He had them send the specimen to 2 experts/hospitals for testing. Thanks goodness or else they wouldn't have found that she's a double expressor, non-GCB. (The #s also varied - Ki-67 alone was: ~70%, >50%, or 80-90%. ??? Anyway, none were super good.)

At this point, I had wanted to go to them for a while but dad told me he needed me here where not every other website was blocked, to do the research. So, I did and I found DA-EPOCH-R and R2CHOP for non-GCB and the former for double hit which she's not, but which is somewhat similarly treated at MD Anderson, etc.

Dad said she was really too weak at this point (she's lost quite a bit of weight) and she was having trouble going to the restroom, and just in general getting around. (She refused to go to Tianjin, where the best lymphoma experts are in China, or anywhere at all, cause she was just so tired.)

So, we decided on R2CHOP, which isn't really a standard but looks promising. We're kind of following the trial specs of ROBUST. Except my mom doesn't tolerate prednisone well at all, so she's doing half the dose (50 mg/day). Also, the doc wants her to do 8 cycles total since she only did R-CHOP 1st cycle.

2 cycles (and a bit) later, her MRI shows that she has pretty much no bad stuff except in her stomach area where it began/was worst. Best news was doc was able to say she has no extranodal involvement. Stage 3A.

Mom has improved so much. She eats, even though sometimes she really doesn't feel like it. She doesn't sleep all day anymore. She can walk blocks without having to stop to rest. She did get new clots from her PICC line which she now can't use anymore :(, but her legs are slimming down with a little help from the compression socks now. Last cycle towards the end, her legs were normal size. So, I am hopeful she will get there again by the end of this 3rd cycle.

My dad is consulting tomorrow with a lymphoma expert who will be in town for a conference (mom's doc set it up actually; he's pretty great). I think the questions we still have/dad might ask are: CNS prophylaxis y/n and if so, how; auto SCT after or not (though we're leaning no); and if he thinks she might need to be on another regimen or if this one has good odds. I guess we already know no one knows yet about what is best for DEL and everyone reacts differently anyway. Still, if he's an expert, it doesn't hurt to ask, I suppose.

Wow, that was long. Sorry. Just had to get it out. Perhaps I'm naive/in denial/something, but I still have so much hope that my mom will make it out cured. I wish that so much, for her and for all the stories in progress here.
 
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