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Thread: My story NHL

  1. #1
    Administrator Top User ChemoMan's Avatar
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    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. 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.

    Cheers

    21/11/2008
    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

    Cheers

    4/February/2009

    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.

    Cheers
    Last edited by ChemoMan; 07-11-2012 at 11:04 AM. Reason: Finally go t to read this again..Punctuation corrected
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  2. #2
    Administrator Top User brainman's Avatar
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    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 .

    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
    Long-term cancer survivor
    1992 Astrocytoma grade 2, left motor strip
    2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
    http://cancerforums.net/viewtopic.php?t=2405
    My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
    My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
    My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029

  3. #3
    Administrator Top User ChemoMan's Avatar
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    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
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  4. #4
    I am totally agreed with you.
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  5. #5
    Senior User SingleDad's Avatar
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    " 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. "


    I did not know that....I had mild RA and it's gone...didn't realize it was a risk factor for lymphoma.
    Age 63 DHL Stage 2/3 CHOP+R x 6 >2/26/09 Complete 6/9 2009
    Diary here http://cancerforums.net/viewtopic.php?t=12003
    Officially in remission July 9th 2009 3 rounds of Intrathecal July 29th
    Radiation as a prophylactic measure. 1st Radiation Sept 9 completed Oct 1. 2009
    Cancer free 2012 and having fun http://www.gtamotorcycle.com/vbforum...-second-season 3 more appts to cure declared Sept 2013 - cancer free. Lots of travel photos here https://picasaweb.google.com/home April 2014 cance free and last appointment.

  6. #6
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    I know RA is not a topic for discussion in this forum, but my mother who has crohns disease (and now Small Cell Lung Cancer, which is a seperate disease) was being treated with a drug called Remicaid (I don't know if that is the spelling, but it is correct phonetically). Originally a drug for RA, they found it works for Crohns also.
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Hi
    Interesting fact that Rituxam was originally made to combat RA..... By chance they found it worked great with NHL. Although hardly ever used for RA these days it probably remains the best treatment for it.

    Hey Don on another note I found a place in DC that sells coopers.....it seems to be a restaurant that specializes in imported beers... The beerskeller...hope that's right

    If you get a chance to lay your hands on some try the sparkling ale... at 5.8% AbV it needs a bit of respect however.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  8. #8
    Administrator Top User ChemoMan's Avatar
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    Hi Singledad

    yes its a risk factor, as are all the auto immune diseases. The risk of developing NHL are still pretty small as it is relatively rare. Most NHL's which occurs with RA are of a particular genotype which responds very well to treatment and has an excellent prognosis, so this should give you an extra boost of confidence

    if you do a scholar search for RA and NHL you should get some good info

    for instance:

    This study shows a strong association between disease activity in patients with rheumatoid arthritis and risk of developing lymphoma. It strengthens the concept that disease related immune alterations in rheumatoid arthritis also increase the risk of lymphoma, regardless of drug treatment.4 The risk linked to the disease seems larger than risks linked to immunosuppressive treatment seen in other studies.5 Thus our findings provide additional arguments for use of potent immunosuppressive treatment to reduce disease activity, not only to prevent joint damage but possibly also to protect against lymphoma.

    Doctors need to be aware of the risk of lymphoma in certain groups of patients with rheumatoid arthritis. In addition, clinical investigators into new drugs for rheumatoid arthritis should take into account the "background" risk of lymphoma in patients with highly active rheumatoid arthritis, who are usually preferred in these trials.

    That was from here :
    http://www.bmj.com/cgi/content/full/317/7152/180

    Figures vary depending on which study you look at but the evidence is overwhelming.
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    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 on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    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.

  9. #9
    Senior User SingleDad's Avatar
    Join Date
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    Canada
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    Chemo is there risk of other types of cancer from radiation treatment for lymphoma ?
    Age 63 DHL Stage 2/3 CHOP+R x 6 >2/26/09 Complete 6/9 2009
    Diary here http://cancerforums.net/viewtopic.php?t=12003
    Officially in remission July 9th 2009 3 rounds of Intrathecal July 29th
    Radiation as a prophylactic measure. 1st Radiation Sept 9 completed Oct 1. 2009
    Cancer free 2012 and having fun http://www.gtamotorcycle.com/vbforum...-second-season 3 more appts to cure declared Sept 2013 - cancer free. Lots of travel photos here https://picasaweb.google.com/home April 2014 cance free and last appointment.

  10. #10
    Senior User
    Join Date
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    Yeah, a lot of the drugs that we take were originally intended for something else; ask our baseball player, Mannie Ramirez. Have you heard about him? Our baseball player scandal continues.

    I found out that a chain restaurant in the States called: "The Outback", a pseudo-Australian steak house, has a license to sell Coopers Draft. I'll have to go there...we have one about three miles away from us.

    I am about to start with chemo; I had a port installed on Wednesday, "slugged" around most of the day Thursday and worked outside in the yard today and then took a ride on the Harley. I'm sure the surgeon would not have been happy about that.

    I wish I had told the surgeon that I like to target shoot (skeet and rifle); perhaps he would have installed the port farther away from my shoulder.

    Take care...keep in touch...Don
    Don B
    Dec 07 Dx Follicular NHL, Grade I (Indolent)
    Stage IIIA - No Symptoms
    Watch and Wait - 6 Month Checks
    Jan 09 Scan shows Progression - no symptoms
    May 18, 09 - Started R-CVP
    After Third Round, CT scan showed some tumor shrinkage
    July 31,09 - Completed 6 Rounds R-CVP

 
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