New diagnosis

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Hi 

I've recently been diagnosed with low grade non-Hodgkin Follicular Lymphoma. I have been overwhelmed by the amount of information received and advice given. I have to start chemotherapy in two weeks and am terrified. I'd love to hear from someone who is going through this too 

  • Hi there I'm also going through chemo everyone is different when it comes to chemo some good and unfortunately some bad try not to worry too much about it hopefully yours will be OK 

  • Thanks and I hope you are doing ok with treatment

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

    I don’t have Follicular Lymphoma but I was also diagnosed way back in 1999 at 43 with a different (very rare) type incurable of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

    Over my years I have had a lot of chemo (and other treatments) and honestly most of the chemo I had was ok…… it is a scary thought at the start but you will get into a rhythm and be looking back in a few months time saying “I did that!!”

    Have you been told the exact name of the chemo you are having?…… this would help as there are a number of different regimes. I had R-EPOCH and this one was full on to the point that so had to be in hospital on my IVs for 6 days/5 nights over my 6 cycles……. But most regimes are often done as 1 day out patents.

    This link Top Tips for the day of your Chemotherapy will give you some ideas as to what people found helpful when going through treatment.

    My top times are…. aim to drink a few litres of water every day from now until you are well out of treatment as this keeps your body hydrated and helps flush the chemo from your body protecting your kidneys.

    You may feel some Nausea but remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on. Yes I felt nauseous at times but the taking the drugs kept this under control and I was only sick 2 times over all my years of treatments

    Fatigue may well build up over time so take each day as it comes, sleep when your body says sleep but at the same time keep some activity going as this does actually help overcome some of the fatigue. I tried to get out for short walks a few times a day…. Fresh air is a great healer.

    Infection: risk and prevention obviously is very important but you will totally get this during these challenging times.

    To encourage you. I had my last treatment back in Oct 2015.... I remain in remission to this day and I turned 67 last November and am living a great life.

    I am sure you have lots of questions so do ask them and someone will be able to help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Thanks so much for that. I can't remember the exact name of my regime, but have been told I need to go in for two consecutive days as an in patient. 

    Any tips one what I might need? The first day is apparent very long... I need to be in hospital by 8 am. I have read all the info from McMillan but would help to hear from someone who had actually gone through it. 

    I'm particularly concerned that I shouldn't see my grandchildren during treatment. I can't seem to get  definite advice from the doctors. My daughter has suggested I move in with her family, but she is a teacher and has two small children so probably not the best idea, but I would hope to see them all during the next six months. Any thoughts? 

  • This link Top Tips for the day of your Chemotherapy will help you get ready for your treatment days.

    I have 4 granddaughters (all under 8 at the time) and as long as they did not have snuffles and coughs they were in the house…… as your daughter is a teacher she is coming in contact with ‘infection machines’ so some care needs to be taken.

    But the better weather is coming in so we spent lots of time out in the garden and inside we just kept the windows open and made sure that everyone followed good hygiene rules and it was fine.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Not had a good time with mine but only 3 to go so hopefully all will be OK 

    Fingers crossed yours will be ok

  • Thanks again. That has cheered me up.

    Another small thing .... I live alone so do you think it would be advisable to have someone with me for the first treatment days? The night times are concerning me until I get used to it all. 

    Thanks again

  • If it will help you get into a rhythm why not have someone stay with you, but don’t spend your time looking for things to happen as they may not.

    I don’t know if anything has been said about this but you are now going to be on a pregnancy diet……. watch out for food bugs.

    Generally it takes about 48 to 72 hours for your body to break down and/or get rid of most chemo drugs. But the effects of the chemo on your 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 and there is a risk of infection.……then your 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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • My wife reminded me that it is important to be aware of any virus going around your granddaughters school, our daughters did explain this to the school to ensure that nothing was missed but as it was, this was not a problem in the end.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi there

    FL Newbie (Jude) here again, checking in after completing my second round of chemo.

    In the beginning all very overwhelming and full on, but not as horrendous as I anticipated. I had no appetite for several days after treatment and general slight nausea but that also passed in less than a week after first cycle. However whilst I experienced the same symptoms after the second cycle, the sicky feeling lasted much longer and I still feel waves 10 days after finishing chemo. 

    Is this normal? Does it get worse with every round? 

    I've been getting out for walks etc and being outside seems to help. I have not had any physical contact with my daughters or grandchildren, but hope to spend some time with my eldest aged 13 this weekend as long as she is free from bugs. 

    Anyway that's me for the time being and I'd love to hear from anyone going through the same stuff.