Starting R-CHOP next week and worried about infection risk

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Hi - I’ve got a clearer diagnosis now of my NHL - diffuse Largs B cell lymphoma. I’m waiting for PET scan results but consultant thinks I’m stage 1 or 2. I’m starting R-CHOP on Thursday and the stand-out thing that is worrying me is the risk of developing sepsis as a side effect of chemotherapy. 
Any tips for reducing my risk of this would be gratefully received. 
Thank you. 

  • Hi again  and good to hear that you have now got a clear diagnosis.

    Infections are always going to be a risk but not everyone gets infections.

    R-CHOP is one of many types of regimes available, it is widely used and very effective......... as for the journey?.... if we line up 10 people on the same treatment for the same NHL we will get 10 different stories...... as the Side Effects of Treatments can be ever so different.

    I had the big brother of R-CHOP - R-EPOCH back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment........ R-CHOP is nothing like this.

    Nausea may be a challenge, in but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how your getting on as at times it is trial and error to get the right one. I was never sick during my 750+ hrs of main chemo.

    Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

    There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs. But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

    I never had any infections over all my treatment……. my problems started a few months after my final treatment with 5 times back in hospital (30 days) with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2 and Neutropenic Sepsis x2.

    I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

    I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps you well hydrated.

    It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

    This link will help you get ready for your treatment as it's a collection of suggestions from people who have been through treatment and are things that helped them during treatment...... Top Tips for the day of your Chemotherapy

    Any questions do ask.

    PS - We do have a dedicated Diffuse large B-cell lymphoma group so have a look round but the journey on R-CHOP will basically be the same regardless the type of NHL

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • So very helpful - thank you Mike. I’ve invested in a new thermometer Thermometer face  - I’m sure I will feel less anxious once this gets going. The waiting around is hard. Thank you 

  • My great CNS initial words were “……Mike you can read all the information available and then start to catastrophise that every side effect that you have read about will happen but the reality is very often rather different….. take each day as it comes, celebrate the good days, endure the not so good day”…… and she was spot on.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Upon my first diagnosis, I received high doses of CHOP + Etoposide, followed immediately by GVD (Gemcitabine, Navelbine and Doxil). I was in a clinical trial and long-term study of an experimental drug (Romidepsin) for 5 years following this. Zero infections, not even a common cold. I experienced no infections until I underwent a stem cell transplant and had a non-existent immune system for a time. So, take heart in that you are among a group of many who have undergone the same journey and are doing very well indeed. In all things, I have found it helpful to balance the risks against what the lymphoma will do if not checked. 

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.

  • Thanks you for your wise words … I am indeed catastrophising and I need to stop. I’m in the awful waiting phase and suffering from scanxiety! Thank you for you wisdom. 

  • Hello and thank you for responding. You’ve been through a lot - you’re incredibly brave and resilient. This is all new to me and sometimes I feel brave and other times not so..  it’s very reassuring to hear about the experiences of others so thank you for taking the time - it really helps. 

  • You are very welcome. As to scans, setting anxiety aside, I developed a mindset of "scanticipation" of excellent progress when scanned. It might be helpful if you view this entire journey as a challenge, rather than a curse. When challenged, we rise to the occasion. 

    ______________________________________________________________________
    One cancer (PTCL-NOS) 3 times. Two other cancers: Angioimmunoblastic T-Cell Lymphoma 2 times, and 20q deletion MyeloDysplastic Syndrome) were chemo refractory. All three cancers simultaneously in 2015. Stage IV twice + MDS @ 23% of marrow. 12/22 diagnosed with Squamous Cell Carcinoma. Thus far, 14+ years, 20 drugs, 4 clinical trials, Total Body Irradiation, 1,000+ years of background radiation from scans. 7th remission so far. Haploidentical stem cell transplant, acute > chronic Graft-versus-Host-disease. Currently receiving my 7th GvHD regimen.