High dose methotrexate

  • 38 replies
  • 12 subscribers
  • 70505 views

Hello every one, 

I hope you are all well and enjoying your weekend. I have a question about what I am about to go through. In about 3 weeks I will be an in patient for the second part of my treatment which will involve a high dose of methotrexate. I have done some research on this and I have spoken to the clinical nurse who gave me some advice. Please do look at my profile for the previous treatment. I must admit that I am feeling worse for wear after my sixth RCHOP and feel slightly dizzy but this is normal a few days after RCHOP. I just want to get my mental lanscape ready for the next stage. I was hoping that there may be some community members who have had a high dose methotrexate that would be willing to provide details of their experience. I really appreciate that everyone's experience is different. The clinical nurse thinks that there is a trend where if the RCHOP went well then the methotrexate might not go well in terms of suffering the from the side effects. I feel rather fortunate that I only suffered from fatigue, flush in the face and nausea, for a duration. I have kept active throughout with walking around the house, walking in the woods or along the canal, and recently on an exercise bike. 

Anyway, I would appreciate any advice and experiences you may have to give so thank you in advance. 

  • Hi and welcome to this little corner of the Mac Community. I see you joined a few months back so I hope you have found the group a help for you.

    My type of NHL and indeed my treatment journey was rather different (see my profile) and I did not require Methotrexate as my plan required going onto Stem Cell Transplant.

    There have been lots of others walk the same path as you so let’s see if anyone is around to help you out.

    Good talking with you.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike, 

    I have found the community very useful and informative. I have also appreciated your positive and supportive role. I have attempted a thorough research prior to asking this question along with reading other peoples profiles. 

    Thank you for replying to my request. 

    Iain - Uhtred

    Yesterday is history, tomorrow is a mystery but today is a gift.
  • Iain, did you truly putting Methotrexate into the search tool and have a look at the posts.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi Mike, I did carry out research on this and there was a hint in one post that Methotrexate affects your bodily functions more than RCHOP. In another request for info the replies focussed on one of the questions rather than the effect of methotrexate. I will research it again but if you have found an experience please could you send me the link. 

    Thank you. 

    Yesterday is history, tomorrow is a mystery but today is a gift.
  • Good morning Iain, you may want to hit the ‘reply’ tab on these threads and post some questions as some do stick around and answer where they have first hand experience.

    I will have a look round and see if I can find some more info for you.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • I'm being admitted to hospital tomorrow for high dose methotrexate, so I will report back.  I previously had a nasty reaction to intrathecal methotrexate, so I'm not sure that my experience will be typical.

    The side effects from my last couple of cycles of R-CHOP definitely lasted longer than the ones from previous cycles, so your experience isn't unusual.

  • Apart from it taking 9 attempts for the infusion nurses to place the first cannula yesterday, it's been uneventful so far.

    They've been pumping me full of fluids and bicarb overnight and will start the methotrexate in a couple of hours.

  • Hi Lolie, 

    Gosh! 9 attempts seems a lot compared to some of my blood test attempts by a doctor. 

    I hope it goes well! Will be thinking of you!

    Best wishes

    Iain (Uhtred)

    Yesterday is history, tomorrow is a mystery but today is a gift.
  • Unfortunately a cannula for chemo has to stand up to a whole lot more then a surface vein being used for a quick blood draw and it can take previously used veins a long time to recover.

    The doctor placed a new cannula yesterday.  He got it in two attempts but it only lasted an hour.  They got an infusion nurse to place one yesterday afternoon. That took five tries but seems good for now.  Hopefully it will hold until at least tomorrow.

    No problems from the methotrexate itself apart from a little nausea and loose stools.  I can feel mucositis starting but I have mouthwash and antibiotics for that so hopefully it won't get bad.

  • Home at last.

    I have fairly bad mucositis and my arms are badly bruised.

    Tedious is probably the best way to describe the experience.  You're loaded up with fluids constantly and every pee has to be measured and PH tested.  I was peeing 30 times a day at least.

    I retained fluid so I was put on dieuretics, which meant I also had to be given potassium.  You're always being given something.

    My first blood level was 5600, the next day was 112, and today was 30.  My registrar said he's never seen someone clear methotrexate so fast before so it sounds like 5-6 days is a more typical hospitalisation.

    Apart from the period of the methotrexate infusion, I was able to leave the ward.  I would have gone nuts if I wasn't.  I didn't feel sick enough to sleep or even rest during the day.

    I'm very glad I only have to do it once more.  It was mentally more challenging than chemo.