2 yrs today the end of chemo

1 minute read time.

Don't post very often but thought I would share 2 years today was when I had my last of 8 R-Chop chemo and the roller coaster ride has continued but the noise reduces with time, as many of you know. So 2 years on and I am still a good stat and now targeting the 5 yr mark. So everyone going through treatment the is a light at the end of the tunnel and its shining bright for me.

It looks like I have been one of the few who have long term damage from the chemo and only now am I starting to get the support and treatment I need, back to hospital visits and consultants to sort out the cronic fatigue, respiritory and heart problems. For quiet a while eveyone said the problems will go with time but now they realise as do I they are here to stay, but so long as I continue to wake up each morning then I am very happy, without the treatment, I know I would not have made it to now, so still lots to celebrate and be greatful for.

Left ventricular failure, problems with the inferiour vena cava, cronic fatigue and periferal neuropathy but the one that is really bugging me is my upper left arm, I am losing mobility and muscle and it aches most of the day but no one can tell me whats wrong.

Has anyone else experienced any of these issues or is this the bit of me that is a bad stat, if so I can live with that.

Oh and if you have a drink this weekend toast with me all those lymphomaniacs and other cancer patients who are enjoying remission
cheers everyone

john

Anonymous
  • FormerMember
    FormerMember

    Great news John.....long may you enjoy being in remission....

    its 21 months since i had my r-dhap chemo which got me into remission for the second time and i have been on retuximab the last 21 months....only one more dose to go in december and my 2 years on retuximab will be up.. and all being well my second remission will reach 2 years

    my problem is every month you i get a stinking chest infection, that clears up with antibiotics then comes back again....can feel lumps under my jaw BUT i dont think its lymphoma related more like swollen glands thanks to this chest infection, cough cough sneeze sneeze bug

    im sure its because of the r-cvp / r-chop / r-dhap / retuximab making my immune system crap

    like you i walk so far and i am knackered [ 100 yards maybe ]...BUT i have managed to walk about a bit more of late though thats not very far...

    specialists tell me its the side effects of all the chemo but i have friends who had stronger stuff then me who are now back at work...

    Still everyday is a good day John when things might have gone against us ..

    [ thats you john...aqua jo...fenteacher..my friend ross, and me all diagnosed with NHL stage 4 and all in remission ]

    Stay well my friend john...

    Graeme !

  • thanks Graeme good to here your doing ok to, have you had an echo cardiogram recently? since I started medication for one of the heart problems my breathlessness has gone and I don't huff and puff as much.

    Might be worth asking for one to check that all is well.

    Take care and stay well    John

  • FormerMember
    FormerMember

    i will have a word about that test when i see my mac nurse this week John...

    you stay in remission ok....AND go out and have lots of good times....

    live, love , smile , have fun .

    i think with me i may be the retuximb messing my immune system up...the reason i cant walk to far is i get a right nasty ache in my hips / lower back...

    anyway...tiss a small price to pay...i never got to one Hull City game in 3 seasons john and last season i got to 15 games and this season iv got to 5 home games out of 5 so far...

    It really is brilliant that our little lymphomaniac group from share / what now are all in remission...

    stay well...have lots of good days out and about john...iv got a little red mini mobility scooter so i can get to the sea front and back....

    all the best allways...

    Graeme

  • FormerMember
    FormerMember

    Hey John,

    Happy Anniversary! Really hope they can sort out your problems and that things improve. I've had a prob with my upper right arm / shoulder for months which may just be muscular - been given anti-inflammatories Naproxen(?) but reading the leaflet (now that I am someone who reads the leaflet, lol) it mentions an increase risk of heart trouble so I'm going to ask about that given that some of the chemo I've had already increases the risk. It's weird in that it only hurts with certain movements - thankfully it's generally useable! Also developed a numb left hand (well the outside half of it) so I think GP wants to do a nerve conduction test... small beer next to yours, john, but similar enough to be worth mentioning I hope.

    I will gladly raise a glass to us all! Really nice to see you here,too, Graeme xx

  • FormerMember
    FormerMember

    Hi sorted, your in remission ?

    thats great if you are and heres hoping youl be fine for years and years and years...

    iv been in my second remission 2 years in december, i have been on retuximab 21 months and just have one more dose then i will be treatment free for the first time since june 2008 apart from 4 months..

    scarborough hospital i know it well.....lol

    and the scanners

    hey i had a huge hernia in my tummy they said the chemo weakened my stomach wall..

    well i was scared to get put out and after much chatting with the brilliant dr perry he did my hernia while i was awake ...just giving me the odd jab in my tummy...arrrgghhhhhh it wasnt so bad....at first !   dont think il have an opp while awake again...lol     then again i just coldnt have let them knock me out..me and my stupid fear of hospitals...

    the nurse who started me on the chemo back in june 2008 and gace me my r-cvp / r-chop now works at the hospital in middlesborough [ julie s ] shes brilliant and i need to go up and see her one day..

    aqua jo and fenteacher are still in remission and we have met up a number of times.....

    im in a facebook group with lots of the old share / what now users and its been great..

    always had a way of logging in here so i can pm anyone diagnosed with NHL..

    you look after yourself sorted...

    have as good a day as possible....each day

    and stay well, same to john...

    youl have to let me know if ever your down this way...and you as well john...

    coffees on me....

    :-)

    hugs you both...