My story NHL

ChemoMan · Posted: Fri Jun 06, 2008 3:13 am Post subject: My story NHL

Hello

my name is Arthur. I am 51 years of age and was diagnosed with NHL in January this year. I have just finished the sixth and final cycle of my Chemo regime. Prior to all this I had been diagnosed with Rheumatoid Arthritis (2000) which made me very sick. I am very good at taking meds so I have been lucky to avoid permanent joint damage in most, but not all , of my joints.
I started to notice swollen glands in my armpit last year about June. I had just had the worst year of my life as far as stress goes and I had just lost my last surviving parent, my Dad. The glands came up real quick and they hurt a lot. I saw a doctor then a surgeon and the advice was to watch and wait. The Surgeon was not to concerned as the glands came up quick and they were soft and they hurt, all indications that an infection was responsible. Prior to this I had a shocking head cold which i had been unable to get rid of for over a month. after about 6 weeks of waiting the surgeon decided to take some out for testing. This was after a fine needle biopsy had been done and proved inconclusive.
Anyway the path results were inconclusive again. In the meantime the lumps under my arm went nuts and grew very quickly to a huge size. By December I had started to develop lymphoedema and had trouble putting my shirts on due to it swelling so much.
In December I noted a small hard non tender lump in my neck. When I saw the surgeon he booked me in straight away for an excisional biopsy. The results were delayed due to christmas, and when I got them they were positive for NHL.
I panicked at this point. Fortunately I was at work ( I am a nurse) and I spoke to some colleagues who suggested the royal Adelaide Hospital. I rang them ,then organized a referral to the clinic from the surgeon. I was seen straight away by the head of the department, a wonderful man by the way. I also had the second in charge of the department as my doctor when the professor is away. both of my doctors are fantastic.

The advice was start straight away. I ended up taking to time off work( annual leave) but I waited two weeks so my partner Jane and I could have a bit of a holiday together.

Chemo started in Februaruy 08. Really easy at first I couldn't believe it! All the side effects I suffered were less or about the same as the side effects from my Rheumatoid medications ( one of my meds was methotrexate). Most of my hair fell out in the first week and it was strange looking at the mirror. To tell you all the truth I am still not used to seeing myself. Jane reckons I look better but I think she is just being nice coz I got cancer:-) On top of this my rheumatoid went away real quick ( Rituxam and prednislone did that ) Prior to starting treatment my rheumatologist said I would never see him again. So there I was 1 week in from my first cycle and I was feeling better than I had in over ten years!
It might sound silly but I was almost happy to have NHL !
Each round of chemo got worse. In the second I vomited once, the third I vomited 3 times and in day 2 of cycle 4 I vomited for 8 hours straight. I really thought I was dying. When I told my team they prescribed aprepitant which was fantastic. The 5th cycle was uneventful but the last almost killed me, well thats what it felt like. I flaked out for 3 days and didn't really know where I was. On top of this the pain from my neulasta injections went through the roof which was funny as I had had the injections since cycle 2 with only minimal pain and I developed a chest infection, which I am still battling as I type.
scans taken at the halfway mark were good. I will have
further scans in mid July and that should tell us if I am in remission.

Well that's about it. My advice to NHL patients is to read as much as you can about the condition, and work out your questions to your doctor before you see them. Stay away from crowds and tell all your friends not to visit if they have a cold, that is how I got sick this cycle.

I live in Australia so Finance was of no concern. I decided due to the stressful nature of my job , not to work through the treatment. I have a lot of sick leave from 30 plus years of service ( sick leave accumulates in Australia). I sort of shut myself of from the rest of the world and only saw people when they came to see me. At the end of the day that was probably a bit over the top but until this cycle it was working well.

2 things before I go. The first is the advice to keep a positive attitude. This is complete rubbish. I worried me a lot as everyone says this but it is actually impossible. Your mood will slip and if all you get is "keep a positive attitude" this can be a source of stress. it was for me. What is important is not to lose your ability to laugh. Get in contact with the people who make you laugh when you feel down it will do wonders. or look at the humour forum in this site. Visit humour sites on the web, and have a laugh Wink

The second is don't panic no matter how dire things look. There is always a silver lining to every cloud.

Cheers
_________________
Age 51
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008

brainman · Posted: Fri Jun 06, 2008 2:02 pm Post subject: Re: My story NHL

Thanks Arthur for telling us your sorry. You can read up on me by clicking on the links in my signature block. You can add a link to this topic in your's too Wink

.

I am sorry that you have to struggle with RA and NHL! My mother had RA for several years. Both of my parents died of cancers... Mom had GBMIV and died two months after her diagnosis. Dad had ALL for a couple of years before pneumonia finally was the last straw.

You are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ChemoMan · Posted: Fri Jun 06, 2008 3:55 pm Post subject: Re: My story NHL

Hi Jim
Its all good now Jim. As I said my Rheumatologist reckons he will not see me again. He bases this on the way that rituxam induces long term remission in RA. Mind you my haematologist was not so sure. The doses used in RA are much lower.
Incidentally a person with moderate RA has a 25 times greater chance of developing lymphoma than others. In severe RA it is, from memory, about 90 times more likely. I had moderate RA by the way.
RA is a terrible disease. It hurts like hell. Fortunately crippled joints are rare these days due to the new meds Smile

_________________
Age 51
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008

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