New to this

Hi Vickster47 and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our Lymphoma groups.

I was diagnosed way back in 1999 with a rare incurable but treatable type of low grade skin NHL Stage 4a and although my Lymphoma ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.

The waiting for answers can be so hard and often you just don’t get told anything as in reality until tests like MRI is done they would be guessing.

My story is rather different (hit my community name to see my profile) but at one point the pain from my neck up was off the the scale, mainly down to my brick sized mass enclosing and squashing nerves and muscle.

We tried lots of different pain meds but most did not touch it  and some of the very strong meds were doing some crazy things with my mind.

The pain only started to reduce once the chemo started to work as it reduced the mass taking the pressure off the nerves but even then that brought a new type of pain as the muscle and nerves started to stretch in their new freedom.

I did ok with nausea from my chemo but we did keep changing the drugs when we noticed they were not working as well, but I did get nausea from the pain and nothing could touch it.

High grade as you say is very treatable and can be treated looking forward cure - the low grade I have is a life long illness but I am now 5 years in remission and doing great.

Lets look for you to get answers soon - always around to chat.

Hi 

Thankyou for your reply. 
great that you’re 5 years in remission. 
the ringing in my ears has mainly started in the last few days and I’m pretty sure it’s that making me nauseous by making me dizzy and unstable. My ear feels like it’s constantly congested and ‘under water’ and I also have an absolutely horrid taste in my mouth. I’ve been told that chemo does change your taste but this was around before the chemo. I know that it’s probably all to do with the mass behind my nose and I have to let the chemo take effect. 
hoping someone has some kind of ‘remedies’ or self help to ease the pain? 

So the taste is chemo related. The best things I found was my wife took in chopped up fresh pineapple and melon. Some find sweets like Werther's Originals work but the top tip is drinking a good 2 litres of water a day to keep you hydrated and flush your system free from the toxins.

Chemo making your ears rig can be normal, like bad Tinnitus but this normal clears once treatments are finished.

One of my early drugs I was on has actually left me with medically induced hearing loss so Right Ear 85% loss with remaining 15% a muffled sound with continues pulsing 24/7 and Left Ear 50 – 60% loss + Tinnitus and I have two hearing aids but I see it as a small price for having life.

Oh dear I hope I don’t have permanent hearing loss! But you are right having life is more important. 
I’ve started using citrus flavoured things, juice, sweets etc and it does help break the taste. I find at the minute grapes are my saviour! 
Thankyou so very much for all your tips, insights, and advise it’s been very helpful

Hi Vickster47

I was diagnosed with Diffuse Large B Cell lymphoma in August so high grade like you, and in my left nostril therefore classified as extra nodal (not in lymph nodes). Mine was staged as 1A (localised mass) which was removed via elective surgery when it was still possibly nasal polyps. Histology results came back with - bam, you have cancer. 

It’s unfortunately a real lottery as to symptoms from R-CHOP and I’m so sorry you’re suffering. After my first session I had tinnitus but it did subside thankfully and hoping that could be the case for you as it takes  a week for the drugs to leave your body. The 2nd session has left me with neuropathy (tingly nerve pain in fingertips, throat, nasal area, toes) and headache but that might be from hair loss. You don’t state what the pain is like but if it is tingly it could well be from one of the chemo ingredients (vincristine). It may well go away after treatment is done. 

Your Clinical Nurse Specialist who works with the consultant haematologist should be your first port of call if you’re suffering as it shouldn’t stop you from living a “normal” life and they are there to help you. if you’re feeling nauseous there should be some anti nausea drugs in your “goody bag”. It may even be worth contacting your GP as they’ll be in the loop regarding your treatment regime and may be able to prescribe pain relief for you. Interesting that you’re having an MRI now as I would have expected that to have happened beforehand, with a PET scan to determine treatment. 

I do hope you manage to get some support in managing your side effects and wishing you well. Let us know how you get on. 

Gill 

Hi 

Thankyou for your reply. I had an mri back in august, then a biopsy and then a pet scan which finally determined my condition. I was doing well after the first treatment until last Friday (my treatment was on the 12th). That’s when the tinnitus kicked in and I’ve had it since. My right ear feels constantly congested and because of this I’m really wobbly and shaky. And that’s when I called the clinical nurse who told me to make my way to the hospital. My white blood cells have now dropped slightly (to be expected) and my infection levels raised so I’ve been put on a course of antibiotics. The mri was done I think just to rule out anything else. I have literally just left the hospital after begging them to let me home. I couldn’t get the pain under control so that’s all sorted now with better painkillers. I have a mass behind my nose of 5-6cm. The mri results aren’t back yet but the doctor was happy to let me home as long as I’m careful and watch my temperature. He did say the mass could have mutated which could be causing the problems

I had a very large mass in the middle of my chest with other bits all over the place. But I had terrible pain in my chest during the chemo months. Once, it was so bad they thought I was having a heart attack but it wasn't. Others have told the same, that as the lymphoma is treated, it causes pain. If it is that, then it should get better so here's trusting it does.