Follicular Lymphoma

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Hi all, yesterday I was officially diagnosed with Follicular Lymphoma, it was suspected after some CT scans and other procedures but not confirmed but it is now. I am starting Chemo on the 25 of this month and will continue for 6 months, not sure what to expect, plan for the worst, hope for the best. Has anybody out there have any information on the Blue Badge scheme and this condition as I have been told that I may be entitled as I also have other underlying health conditions, ie Ulcerative Colitis and mild C.O.P.D.

What benefits am I likely to be entitled to , I have a quite well paid hands on job in engineering and it can be physically demanding at times. I belive the treatment does lead to severe fatigue for a while at least, is this the case    The company have said that I'm am not to worry about time off, working part time or shorter days but it does concern me. 

Anybody out there with similar thoughts/questions 

  • Hi  and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike and I help out around our blood cancer groups.

    I don’t have FL but was diagnosed way back in 1999 with a rare incurable but treatable type of low grade skin Non Hodgkin’s Lymphoma Stage 4a and although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.

    First the Blue Badge Scheme….. you just apply and you will get a yes or no. I ended up on walking sticks after my second Stem Cell Transplant but the only way to get back to fitness was keeping active so although I was told I could get a badge (I also have Asbestosis) I did not take it as it would have reduced my activity.

    Benefits are a minefield. The best way to find out what ‘may’ be available for ‘you’ (as everyone will be different) is call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides work, financial and benefits guidance.

    After a long fight I did get PIP (Personal Independence Payment) but this is a capability benefit and it’s nothing to do with what type of illness you have but how your life is effected both physically and mentally by your illness - it took 6 months and an appeal backed by my Macmillan Benefits Adviser to eventually get it Smirk

    Have you been told the exact name of the treatment(s) your hate having?

    We are always around to chat and support Thumbsup

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • hi thanks for the reply. if this is what you mean I will be having, if I spell it right, Rituximab on the first day, the have said it will take all day and then the following day it is Bendamustine but only for an hour or so

  • Thanks, I had a totally different type of chemo but there are a few who have been on R&B so let’s look for them to pick up on your post.

    I was on Rituxitmab for 120hrs for each of my 6 x 5 days stays in hospital as part of my R-EPOCH and had no real issues with the treatments.

    https://www.macmillan.org.uk/cancerinformation/cancertreatment/treatmenttypes/biologicaltherapies/monoclonalantibodies/rituximab.aspx

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi tonysid,

    I had rituximab and bendamustine in 2019 and have been fine since, although I'm much older than you (70 something). 

    Practically my only side effect was tiredness, but I found that if I was doing something absorbing or in the fresh air out of doors, I felt normal.  I was alert enough moving around, but if I'd had to sit through a boring management meeting, I would've been snoring in minutes!   In engineering, I guess safety at work is an issue?  You'll know what to avoid if you're feeling below par, but if you have an occupational health advisor, I'd talk through any potential risks if you feel tireder than usual during treatment.

    Some people on the same programmes had worked full time throughout, except for essential hospital days.  I was already retired, just busy with life.  I did avoid long boring drives, especially in poor weather and late evenings.

    B-R combination does tend to lower your immunity.  Any bugs going around need prompt treatment if you develop any infections. 

    Good luck with your treatment!

    Cecren

  • Nausea was my problem with BR but that is apparently unusual. Tiredness for me wasn't too bad and I could have continued my usual activities except it was during covid so everything was cancelled. For me it was rituximab and bendamustine on the day one with just benda again on day two. You'll have had your first two days now. How did it go?

  • hi there, thanks for replying, yeah had 2 days worth now, Wednesday was mainly Rituximab followerd by about half hours worth of benda and Thursday was jut the benda for about half hour. I don't actually feel that bad at the moment but wed after I couldn't keep my eyes open but still only slept for about 6 hours, (think that's the steroids). The tiredness thing is something I'm used to as the Colitis does that but they seem to think I've had the Lymphoma for a number of years because of how far advanced it is. So going forward I'm not sure if I will get any severe side effects but fingers crossed. Work wise they have e signed me off for three months as they say I will have NO immune system to speak of so I don't know when ill go back to work. Anyway stay safe and healthy and speak to you soon

  • Hi Tony, good to hear you got on ok with your first treatments. Your body is just getting used to what it’s being put through so take it easy and slow your body to assimilate to the treatments.

    We always expect side effects…. some gave then some don’t…… we could line up 10 people with the exact same condition on the same treatment and we would get 10 stories.

    The main thing to look out for in these early days is for infections signs so daily temperature checks are worth doing. 

    I was given a card with this basic guidance to follow.

    A high temperature (over 38°C) or a low temperature (below 35°C) could be a sign of infection which your immune system may be unable to fight.

    Any infection must be treated quickly with antibiotics so please be prepared to be admitted to hospital for immediate antibiotic treatment.

    Please follow the guidance below, but if in doubt, please contact the hospital:

    • If your temperature is 37.5°C, repeat in one hour. If your temperature has increased, whether you feel unwell or not, you must contact the hospital.

    • If you have a temperature of 38°C or above, whether you feel unwell or not, you must contact the hospital immediately. Please do not wait any amount of time before you call us.

    • If you feel unwell but do not have a temperature, monitor your temperature every one to two hours. If you continue to feel unwell, please contact the hospital.

    • If you wake up in the middle of the night with a high temperature, contact the hospital immediately – do not wait until morning.

    • If you feel cold and shivery, even if you do not have a high temperature, please contact the hospital.

    • If you have more than two episodes of vomiting or diarrhoea, or you are concerned, please contact the hospital, as you may become dehydrated quickly.

    • If you start to cough up phlegm, have any shortness of breath or chest pain when breathing in, please contact the hospital.

    • Look for signs of bleeding, such as bruising, bleeding gums, nose bleeds, coughing up blood, or passing blood in your urine or stool. This may be due to a low platelet count. Please call the hospital if you notice any of these signs.

    • If you develop a rash, headache, stomach pain or any weakness, please call the hospital.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge