July 2021 my cancer came back again and the Doctors decided to treat me, this makes it my 3rd time with chemo
So far I have had radiotherapy (2014) once and 2 previous rounds of chemo (2018, 2020)
My cancer is Follicular Lymphoma ( B-Cell Non Hodgkin Lymphoma) stage 3A. 3A means the tumours are above and below my diaphragm.
N.H.L. is incurable but it is treatable with the aim of treatments to knock it back for as long as possible, sadly after my last treatment it was less than a year before it came back again.
In 2018 the treatment regimen they choose for me was Lenalidomide and Rituximab ( brand names Revlimid and Rituxan) and after undergoing a 6 moth course of these I was given the all clear after a CT scan had shown I had reached complete remission.
My cancer had returned in July and they decided that as rituximab and lenalidomide had worked before they would go down this route again.
I started the lenalidomide on the Friday morning with the rituximab to follow in about 5 weeks.
On the Saturday I didn’t feel quite right, nothing I can put my finger on or quantify just “odd” so I just took it easy and got on with my day.
Sunday after getting up I felt totally wiped out like I was swimming through treacle and anything i did that required any effort like the simple act of walking from room to another would bring me out in a massive sweat and exhaust me.
I got through all of Sunday and most of Monday feeling like this then at around 5pm Monday evening I started to get a pain in my left side just at the bottom of my ribcage, as the evening wore on this pain, which I can only describe as like the worst “stitch” I have ever had got worse and worse.
I took my partner to work at 9pm that evening and driving was becoming a struggle because of this pain and it was just getting worse and worse.
I got back home at 9:30Pm and was hungry so I did myself some food, took some co-codamol and hoped that would stop the pain or at least reduce it. I made myself a cuppa and decided to go to bed and sleep it off.
That didn’t work within 30 mins I was up and in absolute agony from the pain but worse than that I knew my blood pressure had dropped as I felt nauseous and was cold sweating.
I have a blood pressure monitor so I checked and it was 77/51 very low indeed. I was feeling awful so i phoned the emergency cancer hotline number I had and after telling them my symptoms they told me to put the phone down and call an ambulance.
This I did straight away and then I called my partner who came dashing home, she arrived shortly before the ambulance and when she walked in she took one look at me and screeched “OMG! you look awful” I could see the look of real worry on her face.
Shortly afterwards the ambulance arrived and after checking my vitals they quickly decided I needed the hospital.
As soon as I arrived at A&E they checked my vitals, took bloods and the Doctor also listened to my chest then sent me for a X-ray.
The results of the X-ray and the blood tests showed that I had a chest infection and so they pumped me full of 3 different antibiotics and loads of saline.
The pain in my in my rings wasn’t abating so they thought I might have a blood clot on my lungs and sent me for a CT scan, the results of this showed no clot but again showed I had a serious chest infection in my left lower lobe.
I was admitted to a ward where I spent the next 3 days being pumped full of antibiotics, oxygen and codeine for the pain.
The infection in my chest meant my oxygen saturation was below normal and at one point had dropped to 88% and they were going to keep me on oxygen until my saturation was holding at 95%.
I made this video on the first day on the ward.
I really wasn’t in a good place and the pain in my side was debilitating.
However on day 4 things really started to improve, I could maintain my oxygen levels, the infection ahd clamed down and my BP was back in it’s normal range so they decided I could go home but I had to come back the next day foran ultrasound scan of my abdomen.
The scan and the results
This was the Saturday and I turned up for my scan which went well and at the end of it the Doctor said I had some gallstones but they weren’t blocking anything and my spleen was also very inflamed, off home I went and I had to go back on the Tuesday to see my consultant to discuss the results of the scan, meanwhile the pain in my ribs wasn’t going away.
Tuesday came and I was still in pain however pain is a funny thing after a while you become “used” to it, it still hurts as much but it isn’t so consuming it distracts you, codeine had stopped working and wasn’t doing anything to touch it.
The Dr decided to put me on steroid anti inflammatories and pause my lenalidomide for a week, she also gave me morphine for the pain.
Off home I went, took my morphine and steroids and stopped the lenalidomide, the morphine was a godsend it really took the edge off of the pain, didn’t stop it though just took the edge off enough so I could at least sleep.
We agreed I would restart the chemo the following Monday.
Over the course of those 6 days the pain went as well as all the other issues and by the Sunday I was feeling pretty good.
Monday came and I finished the last of the steroids and restarted the lenalidomide.
Monday and Tuesday I was fine then on Wednesday the pain in my side came back first as a dull ache but by the evening getting as bad as it had been the week before. I took my max dose of morphine that night and went to sleep, well until 4:30 am that is when I woke up in terrible pain and feeling awful, I could tell my BP was crashing again and I was in massive cold sweat, I managed to drag myself into the kitchen to get some water then straight away threw up, after a little while I could feel my BP rising so I took some more morphine and went back to bed, I managed to sleep until 08:30 where once again I was woken up by my blood pressure dropping and feeling like shit.
After a while i recovered and I phoned the hospital where they advised me to stop the lenalidomide which I did and then over the next 16 hours I gradually got better.
The real problem
Given that within days of restring the lenalidomide exactly the same symptoms that occurred 2 weeks previously happened the only conclusion that can be drawn is that guilty culprit is in fact the lenalidomide what happened 2 weeks ago is that I also had a chest infection which “masked” what was really happening.
I have now been off of the lenalidomide for 24 hours and every hour I am getting better and better and the pain is becoming less and less
Good news and bad news
The good news is now we know what was causing my issues, the bad news is that I will be off it for good and that means looking at other treatments for my cancer, I am classed as clinically extremely vulnerable as for this reason they don’t want to use more aggressive chemotherapy meds on me so right now I have no idea what will be happening.
All in all the last 2 weeks really haven’t been that great but I am on the road to recovering.