Starting Treatment 27th December 2018

Hi

Have been diagnosed and starting treatment after Boxing Day they are using R-CHOP treatment my cancer is in my stomach and spread to the chest they tell me that is quite common with this form of F Lymphoma

They tell me my first chemo session will last between 6 and 7 hrs and I will be stopping in hospital for at least overnight then I will have Chemo as an outpatient in three 3 week cycles

Just wondered if anyone can give me an idea of what to expect I know the hair loss etc just wondered how I will be feeling in the days after treatment

Any useful information for me and my wife we would be grateful

  • Good luck Nicky stay safe

  • Hi Nicky, hi all,

    Yes, I had only 3 of my 12 maintenance treatments before having to stop due to low blood counts.

    in some respects I think that may have been a godsend for me what with Covid rearing it’s ugly head only 6 months later as my bloods made a pretty good recovery just in time for that (although I must admit not fully).

    Im glad you are all ok, I do look on here from time to time just to keep up to date with how people are getting on. 

    stay safe everyone!

    paul 

  • Hi Nicki and Paul

    so good to hear from you both and that you are doing well. Nicki the haematologist in Austria certainly tells it as it is!! I’m still on watch and wait and my last ct scan for my kidney showed no enlarged lymph nodes at all. They disappeared almost over night a year ago! Long may it last. 

  • Hi Nicky!

    Glad your return to work went well.  It's encouraging, even if UK infection rates are still a bit high.  And you raise a load of really interesting questions, like that Group O blood link - I never heard of that one.  I have a neighbour who's Austrian and we regularly send each other interesting scientific papers, so I'll see what lingo it's published in.

    The maintenance treatment issue is something I discussed with my haematologist too.  She thought I probably wouldn't need it and I had responded very well to my initial chemo (ritux and bendamustine).  In fact, I could have this combination again if/when I need it.  Personally, I was rather relieved about the lack of maintenance treatment at the time because it's rituximab at my unit and I'm so allergic to it, I have to be doped with piriton & hydrocortisone to the point of incoherence.  We couldn't quantify any additional risks of the FL returning, but mine was a Grade 4, so I'm realistic.  So far, so really great!

    I had those pesky shingles too.  Unpleasant & painful and my neutrophils and lymphocytes just stayed low, so I assumed it was due to lousy immunity & childhood chickenpox.  Interesting to link it to specific treatment!   Maybe it has been linked to other MABs beside Obintuzumab

    I'm going to ask if my GP will do a blood test before 1st August, just so I know where I stand.  I don't have a checkup due till later this year.  Being an oldie, I'm not mad to get out & mingle, but I have friends and relations who want to visit, so I want to be prepared.  Here in Scotland I understand the wearing of masks is not common, but it is due to be made compulsory in shops.  If I worked in a shop, I'd feel happier if my customers tried to protect me.  It might encourage us shielders to venture out if others were considerate too.

    Hope your mother is well and able to have a visit.  Enjoy your holidays!

    Cecren

  • Sorry for your niece but I do not get feeling from all I read immunity is happening people get it more than once , I’m not of the opinion valine is a reality personally but well wait & see been weeks of rain so stuck indoors can’t garden in rain I got second stay in letter but have emergency eye appointment today I had 2 cataracts now my right eye is bit odd got first trip to local town or out in 7 months I’m very scared my son in law is coming to fetch me 140 mile round journey I’m lucky my 1 daughter son in law fantastic , I do not see Husband or youngest daughter after 40 years it ended very bad I do not want to see them to be honest Hate is not nice I had a lot of it , I’m happier without it there still doing it to each other & whatever person they meet , I’m in my own world I doing ok now I’m used to realising my cancer is forever life is not going to be same Covit 19 has Really messed it up but hey who said life was meant to be easy , 

    I hope all start wearing masks soon I see people out & about wearing nothing people in out of houses like it’s nothing to worry about , waiting for reality to reach one so rest see we need to care without having to ask people to stay away yes I’m still washing all my shopping will I think now forever it’s a norm as not letting people in my home just me & my Dog 

    keep safe all Hope we have a nice summer people we keep safe Psim not getting any of my messages I found some 9 months old I think I need read the method to understand where messages are Love peace Pray all Pray

  • Well with the shielding ending this weekend how is everyone feeling me I am a little nervous and won't be changing much.

    Had a phone consultation on Tuesday with my consultant and asked his advice, he suggested to take things slowly and with caution, I asked about seeing the grand children (as they all live far away from me) he said I could see them but no hugging and it would be best outside and did not recommend staying over at their houses.

    He did say it would be OK to walk the dogs as long as I picked a quiet time at least living in a rural village that will not be a problem

    Listening to the news and the way Covid is going I think that's sound and corect advice 

    I have my next Ritux maintenance treatment on Tuesday and he is arranging a scan to see how things are going 

    Good luck everyone stay safe

  • Hope everyone is OK rather quiet here of late

    Had my maintenance treatment last Tuesday and as always great from my team, everything went well usual tiredness when I got home fell asleep in my chair for an hour and unable to sleep that night, always like this for me

    Consultant is trying to arrange a scan for me to check how things are going 

    As for Covid I am not taking the governments advice but doing as my team says an early morning walk with the dogs and keeping safe at home

    Good luck everyone