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

Octoberchick

New member
My story

In the summer of 2014, I discovered that my sternum felt very tender to touch. I saw my GP who told me I had costochondritis. I was not to worry, she said. I didn't.
However, it got worse. At some point around Christmas 2014, I tried to turn in bed and had the most horrible pain in the middle of my chest. It lasted for about 20 minutes. It was very frightening.
I went to ER to following day. They did a Xray and told me that I had costochondritis. Somehow, the Xray was normal or a 4-year-old trainee doctor read it, or maybe nobody actually saw it. They were super busy and kept telling me to take anti-inflammatory meds, so I went home.
I thought, they surely must know what they are talking about---YOU THINK!!
It got worse over the holidays. I couldn't hug people because the pain would start up again. I slept sitting up.
In January I had a holiday booked and for some reason, it was ok during this trip and I manage to have some fun but I was beginning to lose weight but put it down to the fact that I had stopped carbs in November, so I assumed this was the reason for my weight loss.
In March 2015 I felt a sharp pain in my left hip. I couldn't run on the treadmill at the gym and after about 2 weeks, I found it difficult to walk up the stairs at home. Within another 3-4 days, I could not lift up my left leg at all, from lying flat on my back. I saw a physio, an osteopath and eventually, I told myself that there must be something seriously wrong as I also was starting to sweat a lot at night.
I went for an MRI of my hips, which then in April 2015 showed numerous lesions in my left hip joint, pubic bone, right iliac crest and there was a huge hole in the right neck of the femur. The radiologist told me to go to the hospital straight away. I was there having all the scans and a biopsy of left iliac crest the day after.
After a 10 days wait to get the result, I was told I had DLBCL stage 1VA. It had spread from behind sternum where the mass was 9 cm, to the pelvis, hip, left jaw, and to left shoulder joint.
I started chemo R-CHOP the following day. I had 6 rounds, and in the fall of 2015 finished the treatments. In January I had the dreaded follow-up PET/CT scan which was clear. I had a second PET/CT scan in April 2016, which also was clear.
On the report, it said: 'Excellent respond to treatment'
Now, March 2018 I am 2 years and 4 months in remission.
I became very very weak from the chemo. I ache a lot now and sometimes this scares me a lot but each time I have my 12 weeks-blood test, I get a good result. I do not have a PET-CT scans anymore.
This is in the UK. Maybe in the US, they continue with scans, but not over here.
I think chemo destroys muscle tissue and softens bone as my shoulder joints ache all the time as if I have bone spurs scraping against tendons. I had to have a hip replacement last year because I had arthritis in the hip.

I am grateful to still be here. I am amazed that nobody in the space of 12 months once thought it could be a serious illness...I had carried this lymphoma for a long time. Most probably 18 months. Even my 'breast doctor' said, when the scan showed a lump in my left armpit, that it was a lymph node that was swollen because I had just recovered from a long cold. That lymph node disappeared after my second round of R-CHOP.

This is my story.
 

Step2

New member
I am grateful to still be here. I am amazed that nobody in the space of 12 months once thought it could be a serious illness...I had carried this lymphoma for a long time. Most probably 18 months.
Welcome to the forum! I had a similar experience to yours in regard to the difficulty of getting a diagnosis, although my fNHL came on very quickly. I decided later that most doctors are simply not trained to determine the signs of this type of cancer. At any rate, I know the feeling about being grateful to be here!
 

Lyssa

Member
I have decided to write my husband’s story here for two reasons. One is because it is quite cathartic and the other is because each case of lymphoma is so different and hopefully there will be information in here that will be useful to someone.

In July 2017 he developed dyspepsia. He tried a month’s course of a proton pump inhibitor (PPI) but the symptoms got worse and he started to lose weight so he booked a gastroscopy. This showed what looked like a very large adenocarcinoma in his stomach and a second one in his duodenum . That combination and the short history suggested that it was likely that the only treatment would be palliative and he would deteriorate rapidly.

Then the histology came back as possible lymphoma and the biopsies got sent away for further testing. We ended up in a horrible limbo where gastroenterology did not want to see him as they were not sure it was their problem, but haematology did not know about him yet. He was now vomiting and losing weight rapidly but no one at the hospital seemed interested. In the end we rang the haematologist and everything changed.

He looked at the reports so far and said that in his experience given the histology the probability was about 90% that it was a lymphoma and if it was it was probably a DLBCL, so while we were waiting for the full report, including FISH, he would see my husband, organise a PET scan and get everything set up to start RCHOP asap once we got the results. And that is what happened. The results were as predicted and my husband ended up being admitted for fluids and his first round of RCHOP.

The first round was like magic, the symptoms just disappeared, but then 2 weeks later the nausea and vomiting came back, though less severely and he managed to maintain his weight from that point on. By than I had found this board and come across the concepts of scarring and tumour rebound, but it seemed hard to believe that things were going the right way.

It was not until after the fourth cycle that he really started to improve, and a scan at that point showed no mass and the SUV of his stomach had dropped from 23 to 4.1. Finally it felt as if there was a chance that he might make it out of the woods.

He continued to improve and he had his last treatment in December. A scan after 6 weeks was basically the same as the mid-point scan and was felt to show just inflammation and scarring. This was confirmed on endoscopy which showed a lot of scar tissue with narrowing of the midpoint of his stomach and a lot of narrowing of the first part of his duodenum. Biopsies were essentially normal. So he was finally officially in complete remission.

And essentially that is it. We had additional excitement on the way when he got lung inflammation and peripheral neuropathy, as well as some rather odd hallucinations from one of the antiemetics. Currently he is slowly gaining weight and building his muscle up and has started a phased return to work as a GP. He has to eat little and often and make sure he has some high calorie food every day. He still gets short of breath at times, but that seems to be improving as well. The neuropathy in his hands has almost gone but continues in his feet.

So the big take home messages for me from his experiences and from reading this board are you don’t know what you have got until you get the histology back, a doctor you trust is worth their weight in gold, gastric DLBCL seems to show improvement in symptoms later than some other tumours and tumour rebound is a real thing, as is scarring. Chemo was not great but it did not last for ever.

The future remains uncertain, but it always is, so we just have to get on with it. My husband is very good at taking things a day at a time, I am a bit twitchier. The fact that he still gets stomach symptoms makes it hard for me to gauge if he is improving or not, but I try to stick to my new rule of not worrying about apparent deterioration or other symptoms unless he has had them for a week, which has not happened yet. My new mantra is ‘Today he is in remission’.

I would never say that lymphoma is the good cancer, but in his situation it was the best of the possible outcomes and we were very relieved when the diagnosis was made. We continue to be hopeful and I am very grateful to the members of this board for their judicious combination of comfort, advice and sinew stiffening.
 

Faithwalker

New member
FAITHWALKER just checking in. Still here even though I haven't been on the Forum in a long time. 1995 - 2018 so far. Not bad.
 

Renton

New member
I all started around 2014 with very infrequent symptoms. I would get abdominal bloating, always in the evenings. It felt like something was blocking the digestion. I'd get pain in my stomach and the only way to relief it was by inducing vomiting. Sometimes there would be weeks between these attacks, sometimes months.
My GP sent me to ultrasound but nothing was found. After about a year of this he sent me to have and MRI. A huge tumor was found in my abdomen. A biopsy followed which indicated the lymphoma was spread to the bone marrow.

I started treatment in early 2015, Ritux + Bendamustine, 6 rounds every 4 weeks at the Odette Centre in Toronto, Ontario, Canada. On the second or third round I had a very strong reactions while getting Rituximab, a rash all over my body and almost unable to breathe. I thought that was it, thougjt I was going to die right there! They stopped administration, waited a while and started again much, much slower. I was able to finish the round.

Two weeks later my ankles and wrist became swollen and painful to the point where I was unable to get out of bed. Even walking to washroom was impossible. Spent a few days in ER.

For the next round I started taking Prednisone before treatments and all was good, no more reactions!

After the treatment I had an MRI and there was NED, this was towards the end of 2015. I actually didn't know about the NED until two years later, somehow it was lost in communication.
Treatment was followed by two years of Ritux maintenance (8 rounds every 3 months). Another MRI at the end and everything still clear.
Had my first child in Nov 2017.
 
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