Nearly there

I'm 50 ad was diagnosed with follicular NHL stage 2 in June. I've already had 6 cycles of R-CVP and about to have 7th this Friday. The 8th and last cycle is on 16 Dec, so just finished in time for Christmas. I'll then go onto maintenance therapy with Rituximab for 2 years administered by sub-cutaneous injection every 2 months. I have been very lucky to have tolerated the treatment really well (no hair thinning or sickness). I'm just more tired than normal but hey ho!

I feel lucky to have such a slow growing cancer and have decided to embrace it as an opportunity to test my resilience. I have 'flat' days but getting out for a brisk walk every day does me a world of good and I do Parkrun every 3 weeks. I've booked myself onto a mindfulness course in January as I feel I need to take pre-emptive steps to ensure I can happily live with my cancer.

There's everything to be hopeful for. The medical advances are amazing. Check out the Royal Society of Medicine's site on Lymphoma videos.rsm.ac.uk/specialtie...

My husband is doing a sponsored bike ride from Lands End to John O' Groats for Cancer Research UK and the British Heart Foundation uk.virginmoneygiving.com/fu...

I am so happy to have him and my son in my life, along with the rest of my extended family and friends. The support they give me is fantastic.

Good luck to everyone. As I am one of the 50% of the population of the UK (even though I'm Irish... that'll teach me to emigrate :)) to get cancer, I feel lucky to have got this one.....

10 Replies

oldestnewest
  • Were you having symptoms? I am stage 3 Follicular Lymphoma on Watch & Wait.

  • Yes. I thought I was bloated because of indigestion but didn't notice the large mass on the left side of my body around my abdomen until the doctor examined me. I'm quite slim but the tumour was growing deep inside, so didn't become visible until April/May of this year. I had night-sweats in 2013 which were cured by Gabapentin. Each time they came back I just increased the dosage. They did lots of investigations in 2013 but nothing was found, so they thought it might be related to menopause as I responded well to the Gabapentin (which has a small amount of oestrogen). I was always tired but put it down to a very busy life.

    I had a large cluster of enlarged lymph nodes on one side of my diaphragm. One node was the size of a medium potato 3.6cm by 6.8cm. It was starting to impact blood vessels and organs, particularly my spleen.

    4 cycles of R-CVP has massively reduced it and at the last CT scan (after 4th cycle) the largest node was 1.1cm. As the response has been so good they want to wipe it out. It won't be cured but the average person gets 7 years of remission on this treatment. My doctor reckons I should get more than that - though no guarantees. This should give me enough time to be ready for when CART-T therapy is available. Even if it isn't, I won't be too worried if I have to go onto R-CVP, because it wasn't bad at all. I see breast cancer patients and they have a much more aggressive treatment.

    I imagine it's very tough on watch and wait. However, I've been told by my doctor that remission is shorter after each treatment, so it's best not to start treatment until it's impacting your health.

    How are you coping?

  • Consider talking to your oncologist about Obinutuzumab vice Rituximab.

    ASH 2016 paper on Obinutuzumab vice Rituximab: In pts with previously-untreated FL, G-based immunochemotherapy and maintenance resulted in a clinically meaningful improvement in PFS, with a 34% reduction in the risk of a PFS event relative to R-based therapy. Frequency of some AEs, e.g. infusion-related reactions (IRRs), cytopenias, and infections, was higher with G. These data support G-chemo becoming a new SoC in previously untreated pts with FL.

    Source: ash.confex.com/ash/2016/web...

  • Obinutuzumab isn't yet funded by the NHS in UK. It's currently undergoing trials in Europe.

  • thank you for your positiveness..

    I have not had any treatment and hope to be one of the few people which my LGFL does nto return. I had one node removed....

  • I believe that PMA certainly improves our chances, supported by plenty of exercise and good food.

  • I am grateful to sites like this where we are able to talk to people who understand what we are going through.

  • I agree. It's the only site I've registered with that I've managed to talk to someone. I feel pretty isolated at the moment as there is no-one near me with this disease. People are very supportive but can't really empathise.

  • I would like to see a nutritionist that knows about Lymphoma....

  • I went to see a dietician but the only advice she gave me was to put on weight and what foods to eat to do so. I've done a lot of research on it and the general advice from authoritative sources is to eat a healthy balanced diet. I've been trained in research so know how to sort out the wheat from the chaff on the internet. My conclusion is not to trust anyone who tells me that any particular food will help me fight cancer better or cure my cancer. There's no substantive evidence to back this up.

    I put a tablespoon of linseed in porridge to avoid constipation after chemo but that's the only adjustment I've made. I haven't caught any viruses/infections while on treatment, even though friends and family around me have had colds etc. So touch wood this keeps up.

    Here's some info you may want to read...

    macmillan.org.uk/informatio...