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    My story NHL


    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. It 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

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


    Well Im still here had some scans about a month ago and the results were very good. All my nodes are now within normal parameters, which means they have continued to shrink since the end of the chemo. My hair has grown back but it is not the same hair I had before. I used to have curly frizzy hair but now its as straight as, not only on my head but all over my body. My body hair is now black and it used to be red, and the hair on my head is white, I used to be ash blonde. I have no complications other than heart flutters, probably as a result of the Doxyrubicin. ( the H in R CHOP). I will ask my Doctor about that when I see him next year, but I am not too concerned at this point. My big toenails have dropped off but it is not due to the Chemo apparently. I noticed about 2 years ago that my toenail were getting very hard to cut, it got to the point I almost needed an angle grinder to cut them I put it down to old age creeping up, like hair growing out of your ears etc, but it is a fungal infection. Its only in the big toenails so Im not even really concerned as they are growing back now.
    I have had 2 panic attacks when I found enlarged nodes in my neck. The second one was the worst of the two , I came home from work and showed Jane, and she freaked out and rang the clinic and booked a consult. That was on a Friday but by Monday the node had settled, so I canceled the consult. I am more relaxed about enlarged nodes now they come up quick and go down just as fast and I have decided not to do anything unless they stay up for more than 7 days. All is good I feel confident that we are on top of this. My Rheumatoid is still in remission thanks to the Rituxam and for that I will be grateful for all my days. I did have two knobbly joints in my hand but they look normal now

    As I said all is good



    Well I just got back from my checkup with the Prof and all is well. It was a checkup with blood work but no scans this time. The Prof found nothing unusual during his check up and my bloods were perfect
    Next checkup is due in June and I will have CT and PET scans. That should be the last of the scans until 2011, but I have a feeling all will be well.

    Last edited by ChemoMan; 07-11-2012 at 11:04 AM. Reason: Finally go t to read this again..Punctuation corrected
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.


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