Non Hodgkins Lymphoma

[ruufus76]

Hello everyone. My name is Ruairi and i am a 34 year old male living in Northern Suburbs in Melbourne. I was recently diagnosed with Non Hodgkins Follicular Lymphoma/Stage 4a and my bone marrow is involved as well. I underwent my first round of Chemotherapy yesterday and it was certainly a long day! About 2 months ago i was shaving to go to work and i noticed a lump on the upper left side of my neck. I didn't like the look of it and so i went to my local GP who referred me to have an ultra sound and bloodwork done. Bloodwork came back clear however the ultrasound showed there was a 3.8cm lymph node in my neck. I then had a fine needle biopsy done and then a CT scan. I should mention that i married my beautiful wife 6 weeks ago and all of this was going on around it. I had the CT scan done the day before our wedding and then i had a surgical biopsy done the Tuesday after so not a long honeymoon! It did not impact on our big day though as we were both determined to fully enjoy it and we had the most amazingly fun wedding day!! When i got the results of the surgical biopsy they told me i had Follicular Lymphoma STage 4a and the B Cell type. It was very scary for us both to say the least and a major shock. One of the ironies of all this is that i had absolutely no symptoms prior to spotting the lump on my neck. It is bizarre to be told that your sick when you don't feel sick! So i started my chemo yesterday. My wife and i went in at 8.30am and we left at 5.30pm so it was a long tiring day, with a lot of information given to us and obviously the treatment as well. I got through it all quite well, apart from a reaction to Rituximab, where i got a rash on my face but my wife a.k.a CEO as she likes to call herself) spotted it immediately and alerted the nurses. They gave me some fenurgin and it went within 15 mins. My next treatment is scheduled for 3 weeks time and should only go for about 3 hours. I guess i am writing on here to touch base with other people in a similar situation to myself. Also to let people know that starting chemo is not as daunting as it sounds. I was quite nervous beforehand but overall i was relatively comfortable yesterday, i had my normal appetite and apart from the sitting which wasn't too bad as my wife was with me, it was not nearly as frightening as i thought it might be. As for everyone starting chemo, it is unchartered territory for us but i feel good in general and as long as i don't feel sick i am not going to act it! Would love to hear back from other people and if i can offer any of my experiences i would be more than happy to.

[Jules2]

Hi Ruairi Welcome to the forums and I hope you will find them useful as most of us have. :) The thought of chemotherapy can be quite confronting and scary until we have the first one and providing all goes well then we can relax a bit. I was incredibly fortunate with mine and managed to tolerate it quite well with the help of my oncologist. As it built up a bit I was getting more side effects and then they would change my anti nausea drugs and it would be ok. Mine used to take approximately 2.5 hours with a 3 day stay in hospital and then I would be allowed home. I am wondering if Rituximab is related to Cetuximab. I had cetux for 2 months once a fortnight. It was an interesting one for me as I ended up with a few side effects that most people dont get. Hope all goes well with yours and glad you aren't feeling too confronted by it all now. All the best for now. Julie ps congrats on your wedding - read your other post also

[ruufus76]

Hi Julie thank you for the message. I am not sure if Rituximab is related to Cetuximab. I am having the CVP Chemo. I had a good night's rest last night and so far i have not had any adverse reaction but i am not counting my chickens that i won't by any means! One day at a time but i do definitely notice that the lump in my neck seems to have gone down a lot which can only be a good sign!

[Jules2]

Hi Ruairi Your welcome and I looked up the drugs and they are related. They are both monoclonal 'thingies' my technical term. lol Hope your rash doesn't give you too much grief. I found honey and oats mixed together with a bit of water great. Mind you I had no hair at that stage and the rash was right through my scalp. I would think that is a great sign re the lump getting smaller. I noticed that with my tumour when I first started chemo and it was heartening. My pain levels dropped dramatically which meant my tumour had shrunk. Julie

[Wegotthis]

Thanks for sharing your story. 

I'm really glad to hear you and your wife didn't let this steal your joy on your wedding day. 

I'm still waiting to have surgery on Wednesday to find out what I have. Like you my lump just showed up.  I feel completely fine. My lump is in my armpit. I just happened to messaging my shoulder because of pain I was having. I  tore my rotator cup last year and it started hurting 

Saw my doctor a couple days later.  Kinda a two in one visit. 

They have done 2 ultrasounds and a CT scan. Surgery to remove and do a biopsy is this Wednesday. With can't come soon enough. 

Congratulations on finding true love. 

It makes a difference having someone on your side. 

I'm blessed to have a great wife and family